1 00:00:07,203 --> 00:00:08,204 GOOD MORNING. 2 00:00:08,204 --> 00:00:10,506 WELCOME TO THE WORKSHOP ON 3 00:00:10,506 --> 00:00:11,474 INCLUSIVE PARTICIPATION IN 4 00:00:11,474 --> 00:00:12,241 CLINICAL RESEARCH. 5 00:00:12,241 --> 00:00:14,677 MY NAME IS DR. VANESSA MARSHAL, 6 00:00:14,677 --> 00:00:17,179 AND I'M A PROGRAM OFFICER AT THE 7 00:00:17,179 --> 00:00:18,347 NATIONAL INSTITUTE ON MINORITY 8 00:00:18,347 --> 00:00:21,317 HEALTH AND HEALTH DISPARITIES. 9 00:00:21,317 --> 00:00:22,752 I AM ONE OF THE CO-CHAIRS FOR 10 00:00:22,752 --> 00:00:23,753 THIS WORKSHOP. 11 00:00:23,753 --> 00:00:27,556 >> HELLO, MY NAME IS GINA RUSSO, 12 00:00:27,556 --> 00:00:29,191 ALSO A PROGRAM OFFICIAL AT THE 13 00:00:29,191 --> 00:00:30,126 NATIONAL INSTITUTE OF MINORITY 14 00:00:30,126 --> 00:00:32,261 HEALTH AND HEALTH DISPARITIES 15 00:00:32,261 --> 00:00:33,562 AND I'M THE OTHER CO-CHAIR FOR 16 00:00:33,562 --> 00:00:33,996 THIS WORKSHOP. 17 00:00:33,996 --> 00:00:35,531 THANK YOU SO MUCH FOR COMING, 18 00:00:35,531 --> 00:00:36,933 WE'RE SO HAPPY THAT YOU'RE HERE. 19 00:00:36,933 --> 00:00:38,067 WE ORGANIZED THIS WORKSHOP WITH 20 00:00:38,067 --> 00:00:39,602 THE HELP OF OUR WONDERFUL 21 00:00:39,602 --> 00:00:41,437 PLANNING COMMITTEE. 22 00:00:41,437 --> 00:00:43,940 SO I WANT TO ACKNOWLEDGE THEM AS 23 00:00:43,940 --> 00:00:45,474 WELL. 24 00:00:45,474 --> 00:00:46,575 JENNIFER IN THE OFFICE OF 25 00:00:46,575 --> 00:00:50,179 DISEASE PREVENTION, DEBORAH 26 00:00:50,179 --> 00:00:53,249 JAFFE FROM THE NATIONAL CANCER 27 00:00:53,249 --> 00:00:54,483 INSTITUTE, LOLA OLUFUNMILOLA 28 00:00:54,483 --> 00:00:55,718 FROM THE NATIONAL INSTITUTE OF 29 00:00:55,718 --> 00:00:56,752 NEUROLOGICAL DISORDERS AND 30 00:00:56,752 --> 00:00:59,455 STROKE, NICOLE REDMOND FROM THE 31 00:00:59,455 --> 00:01:01,123 NATIONAL HEART, LUNG AND BLOOD 32 00:01:01,123 --> 00:01:02,224 INSTITUTE, KATRINA SERRANO FROM 33 00:01:02,224 --> 00:01:03,092 THE NATIONAL INSTITUTE OF 34 00:01:03,092 --> 00:01:04,527 DIABETES AND DIGESTIVE AND 35 00:01:04,527 --> 00:01:06,429 KIDNEY DISEASES, AND DEBBIE I 36 00:01:06,429 --> 00:01:09,365 HAVE TALS FROM THE NATIONAL 37 00:01:09,365 --> 00:01:14,337 HEART, LUNG AND BLOOD INSTITUTE. 38 00:01:14,337 --> 00:01:15,638 >> SO THE PURPOSE OF THIS 39 00:01:15,638 --> 00:01:17,606 WORKSHOP IS TO IMPROVE 40 00:01:17,606 --> 00:01:18,808 IMPLEMENTATION OF EVIDENCE-BASED 41 00:01:18,808 --> 00:01:20,676 BEST PRACTICES TO INCREASE 42 00:01:20,676 --> 00:01:22,111 INCLUSIVE PARTICIPATION IN 43 00:01:22,111 --> 00:01:23,412 CLINICAL RESEARCH. 44 00:01:23,412 --> 00:01:26,148 WITH DISCUSSION ON HOW TO 45 00:01:26,148 --> 00:01:28,351 IMPLEMENT THESE PRACTICES, 46 00:01:28,351 --> 00:01:29,986 CHALLENGES TO OVERCOME AND 47 00:01:29,986 --> 00:01:33,155 LESSONS LEARNED. 48 00:01:33,155 --> 00:01:34,557 THE OVERALL WORKSHOP IS 49 00:01:34,557 --> 00:01:35,458 ORGANIZED BY STAGE IN THE 50 00:01:35,458 --> 00:01:36,325 RESEARCH PROCESS AND WILL 51 00:01:36,325 --> 00:01:39,428 DISCUSS ISSUES TO CONSIDER AND 52 00:01:39,428 --> 00:01:39,996 ACTIVITIES THAT TAKE PLACE 53 00:01:39,996 --> 00:01:42,264 BEFORE THE STUDY, DURING THE 54 00:01:42,264 --> 00:01:47,503 STUDY, AND AFTER THE STUDY. 55 00:01:47,503 --> 00:01:48,738 TODAY'S TALK WILL FOCUS ON THE 56 00:01:48,738 --> 00:01:51,340 AFTER THE STUDY, SPECIAL 57 00:01:51,340 --> 00:01:52,875 POPULATION PANEL, SPECIAL 58 00:01:52,875 --> 00:01:55,745 CONSENT CONSIDERATION, 59 00:01:55,745 --> 00:01:58,114 COLLABORATIVE PERSPECTIVE PANEL 60 00:01:58,114 --> 00:01:59,315 AND POTENTIAL NEXT STEPS FOR 61 00:01:59,315 --> 00:02:00,016 INCLUSIVE RESEARCH. 62 00:02:00,016 --> 00:02:02,718 THE WORKSHOP AGENDA AND SPEAKER 63 00:02:02,718 --> 00:02:04,020 BIOs ARE VIEWABLE ONLINE AND 64 00:02:04,020 --> 00:02:05,154 THE LINK WILL BE ADDED TO THE 65 00:02:05,154 --> 00:02:10,192 CHAT. 66 00:02:10,192 --> 00:02:11,027 >> ALL RIGHT. 67 00:02:11,027 --> 00:02:14,330 SO JUST A FEW HOUSEKEEPING AND 68 00:02:14,330 --> 00:02:17,033 LOGISTICS ITEMS. 69 00:02:17,033 --> 00:02:20,169 THIS MEETING IS BEING RECORDED 70 00:02:20,169 --> 00:02:21,771 AND THE RECORDING WILL BE 71 00:02:21,771 --> 00:02:22,738 PUBLICLY AVAILABLE. 72 00:02:22,738 --> 00:02:24,507 AND WE'RE ALSO BEING LIVE 73 00:02:24,507 --> 00:02:29,912 STREAMED ON NIH VIDEOCAST. 74 00:02:29,912 --> 00:02:31,113 PEOPLE ON JOID CAST CAN SEE 75 00:02:31,113 --> 00:02:32,982 ANYONE WHO'S ON VIDEO SO PLEASE 76 00:02:32,982 --> 00:02:34,617 ONLY TURN ON YOUR VIDEO IF 77 00:02:34,617 --> 00:02:35,251 YOU'RE SPEAKING. 78 00:02:35,251 --> 00:02:38,120 WE HAVE THE CHAT AVAILABLE TO 79 00:02:38,120 --> 00:02:38,454 EVERYONE. 80 00:02:38,454 --> 00:02:39,855 YOU CAN USE THE CHAT TO SHARE 81 00:02:39,855 --> 00:02:41,724 IDEAS, RESOURCES AND IMPRESSIONS 82 00:02:41,724 --> 00:02:42,591 AND INSIGHTS. 83 00:02:42,591 --> 00:02:44,460 ALL CHAT CONTENT INCLUDING 84 00:02:44,460 --> 00:02:49,732 PRIVATE MESSAGES WILL BE SAVED. 85 00:02:49,732 --> 00:02:51,333 FOR ANY ZOOM ISSUES YOU CAN SEND 86 00:02:51,333 --> 00:02:52,768 A PRIVATE MESSAGE TO ANY OF THE 87 00:02:52,768 --> 00:02:53,769 FOLKS ON THE PARTICIPANT LIST 88 00:02:53,769 --> 00:02:55,071 WHO HAVE EVENT SUPPORT IN FRONT 89 00:02:55,071 --> 00:02:55,938 OF THEIR NAME. 90 00:02:55,938 --> 00:02:57,807 AND FOR CLOSED CAPTIONING, YOU 91 00:02:57,807 --> 00:02:59,775 CAN ACCESS THAT BY CLICKING THE 92 00:02:59,775 --> 00:03:02,611 CC BUTTON AT THE BOTTOM OF YOUR 93 00:03:02,611 --> 00:03:03,913 ZOOM SCREEN. 94 00:03:03,913 --> 00:03:09,452 AND IF YOU HAVE ANY ISSUES WITH 95 00:03:09,452 --> 00:03:12,288 CLOSED CAPTIONING, YOU CAN ALSO 96 00:03:12,288 --> 00:03:14,256 CONTACT EVENT SUPPORT. 97 00:03:14,256 --> 00:03:15,157 SO LOGISTICS. 98 00:03:15,157 --> 00:03:17,526 RIGHT NOW, ATTENDEE VIDEO AND 99 00:03:17,526 --> 00:03:18,661 AUDIO IS DISABLED. 100 00:03:18,661 --> 00:03:21,197 BUT IT WILL BE ENABLED DURING Q 101 00:03:21,197 --> 00:03:24,400 & A AND PANEL DISCUSSIONS. 102 00:03:24,400 --> 00:03:26,368 THERE ARE A COUPLE WAYS YOU CAN 103 00:03:26,368 --> 00:03:27,136 SUBMIT QUESTIONS. 104 00:03:27,136 --> 00:03:29,004 YOU CAN USE THE RAISE HAND 105 00:03:29,004 --> 00:03:32,174 FUNCTION IN ZOOM, AND THEN 106 00:03:32,174 --> 00:03:33,576 UNMUTE YOURSELF WHEN YOU'RE 107 00:03:33,576 --> 00:03:34,577 CALLED ON. 108 00:03:34,577 --> 00:03:35,644 YOU CAN GIVE YOUR QUESTION 109 00:03:35,644 --> 00:03:35,978 VERBALLY. 110 00:03:35,978 --> 00:03:38,080 YOU CAN ALSO ENTER QUESTIONS IN 111 00:03:38,080 --> 00:03:38,747 THE CHAT. 112 00:03:38,747 --> 00:03:43,853 SOMSEND THEM VIA EMAIL TO THE EL 113 00:03:43,853 --> 00:03:44,620 ADDRESS ON THE SCREEN. 114 00:03:44,620 --> 00:03:46,255 AND FOLKS WATCHING ON VIDEOCAST 115 00:03:46,255 --> 00:03:47,356 CAN SUBMIT QUESTIONS USING THE 116 00:03:47,356 --> 00:03:51,527 LIVE FEEDBACK BUTTON. 117 00:03:51,527 --> 00:03:51,961 NEXT SLIDE. 118 00:03:51,961 --> 00:03:55,698 I'M GOING TO PASS IT ON TO 119 00:03:55,698 --> 00:03:58,334 DR. KATRINA SERRANO. 120 00:03:58,334 --> 00:03:58,734 >> GREAT. 121 00:03:58,734 --> 00:04:02,438 THANK YOU SO MUCH, GINA. 122 00:04:02,438 --> 00:04:04,874 IT'S REALLY MY PLEASURE TO KICK 123 00:04:04,874 --> 00:04:06,275 OFF THIS MORNING'S SESSION 124 00:04:06,275 --> 00:04:07,176 BUILDING ON THE EXCELLENT 125 00:04:07,176 --> 00:04:08,377 PRESENTATIONS FROM YESTERDAY. 126 00:04:08,377 --> 00:04:11,213 AS MENTIONED MY NAME IS KATRINA 127 00:04:11,213 --> 00:04:12,648 SERRANO, I'M A PROGRAM DIRECTOR 128 00:04:12,648 --> 00:04:13,949 FROM THE NATIONAL INSTITUTE OF 129 00:04:13,949 --> 00:04:18,420 DIABETES AND DIE JUSTTIVE AN DID 130 00:04:18,420 --> 00:04:19,321 KIDNEY DISEASES. 131 00:04:19,321 --> 00:04:20,856 I'LL BE MODERATING SESSION 132 00:04:20,856 --> 00:04:22,358 3 WHICH IS AFTER THE STUDY. 133 00:04:22,358 --> 00:04:23,559 AND THE SESSION WILL COVER THE 134 00:04:23,559 --> 00:04:25,094 ACTIVITIES THAT TAKE PLACE AFTER 135 00:04:25,094 --> 00:04:27,596 DATA COLLECTION IS COMPLETED. 136 00:04:27,596 --> 00:04:30,232 AND THE SESSION IS ALSO 137 00:04:30,232 --> 00:04:34,603 CO-MODERATED BY MY COLLEAGUE, 138 00:04:34,603 --> 00:04:35,471 DR. JARRETT JOHNSON SEEN HERE 139 00:04:35,471 --> 00:04:37,907 FROM THE NATIONAL INSTITUTE ON 140 00:04:37,907 --> 00:04:39,108 MINORITY HEALTH AND HEALTH 141 00:04:39,108 --> 00:04:39,441 DISPARITIES. 142 00:04:39,441 --> 00:04:41,177 SO WE HAVE THREE ESTEEMED 143 00:04:41,177 --> 00:04:43,045 SPEAKERS WHO WILL BE PRESENTING 144 00:04:43,045 --> 00:04:44,580 IN THIS SESSION. 145 00:04:44,580 --> 00:04:48,083 FIRST UP WE HAVE DR. KIRSTEN 146 00:04:48,083 --> 00:04:51,187 BIBBINS-DOMINGO, WHO IS THE 17TH 147 00:04:51,187 --> 00:04:51,921 EDITOR-IN-CHIEF OF THE JOURNAL 148 00:04:51,921 --> 00:04:54,290 FOR THE AMERICAN MEDICAL 149 00:04:54,290 --> 00:04:56,926 ASSOCIATION, AS WELL AS THE LEE 150 00:04:56,926 --> 00:04:58,127 GOLDMAN PROFESSOR OF MEDICINE 151 00:04:58,127 --> 00:05:00,796 AND PROFESSOR OF EPIDEMIOLOGY 152 00:05:00,796 --> 00:05:03,566 AND BIOSTATISTICS AT THE 153 00:05:03,566 --> 00:05:04,700 UNIVERSITY OF CALIFORNIA 154 00:05:04,700 --> 00:05:05,034 SAN FRANCISCO. 155 00:05:05,034 --> 00:05:09,838 AND THEN WE HAVE DR. MONA FOUAD, 156 00:05:09,838 --> 00:05:11,207 PROFESSOR OF MEDICINE IN THE 157 00:05:11,207 --> 00:05:13,976 DIVISION OF PREVENTIVE MEDICINE, 158 00:05:13,976 --> 00:05:15,678 THE EDWARD E. PARTRIDGE ENDOWED 159 00:05:15,678 --> 00:05:17,479 CHAIR FOR CANCER DISPARITY 160 00:05:17,479 --> 00:05:18,480 RESEARCH, DIRECTOR OF THE 161 00:05:18,480 --> 00:05:20,649 MINORITY HEALTH AND HEALTH 162 00:05:20,649 --> 00:05:21,884 EQUITY CENTER, VICE PRESIDENT 163 00:05:21,884 --> 00:05:25,054 FOR DIVERSITY, EQUITY AND 164 00:05:25,054 --> 00:05:27,289 INCLUSION, AND SENIOR ASSOCIATE 165 00:05:27,289 --> 00:05:30,759 DEAN FOR DIVERSITY AND INCLUSION 166 00:05:30,759 --> 00:05:32,428 IN THE HEARSING SCHOOL OF 167 00:05:32,428 --> 00:05:33,796 MEDICINE AT THE UNIVERSITY OF 168 00:05:33,796 --> 00:05:35,097 ALABAMA AT BIRMINGHAM. 169 00:05:35,097 --> 00:05:36,532 AND THEN LAST BUT CERTAINLY NOT 170 00:05:36,532 --> 00:05:38,601 THE LEAST, WE'LL HEAR FROM 171 00:05:38,601 --> 00:05:40,035 DR. LEONARD EGEDE, WHO IS A 172 00:05:40,035 --> 00:05:41,670 GENERAL INTERNIST AND HEALTH 173 00:05:41,670 --> 00:05:43,739 SERVICES RESEARCHER, PROFESSOR 174 00:05:43,739 --> 00:05:45,874 OF MEDICINE, CHIEF OF THE 175 00:05:45,874 --> 00:05:48,110 DIVISION OF GENERAL INTERNAL 176 00:05:48,110 --> 00:05:49,445 MEDICINE, DIRECTOR OF THE CENTER 177 00:05:49,445 --> 00:05:52,047 FOR ADVANCING POPULATION 178 00:05:52,047 --> 00:05:54,450 SCIENCE, THE INAUGURAL MILWAUKEE 179 00:05:54,450 --> 00:05:55,985 COMMUNITY CHAIR IN HEALTH EQUITY 180 00:05:55,985 --> 00:05:57,453 RESEARCH, AND DIRECTOR OF TWO 181 00:05:57,453 --> 00:05:59,188 CLINICAL AND TRANSLATION SCIENCE 182 00:05:59,188 --> 00:06:00,756 INSTITUTE PROGRAMS AT THE 183 00:06:00,756 --> 00:06:03,525 MEDICAL COLLEGE OF WISCONSIN. 184 00:06:03,525 --> 00:06:05,494 AND SO WITH THAT, I'D LIKE TO 185 00:06:05,494 --> 00:06:09,565 TURN IT OVER TO 186 00:06:09,565 --> 00:06:10,432 DR. BIBBINS-DOMINGO. 187 00:06:10,432 --> 00:06:13,269 I BELIEVE SHE IS ON THE LINE. 188 00:06:13,269 --> 00:06:14,103 DR. BIBBINS-DOMINGO, PLEASE TAKE 189 00:06:14,103 --> 00:06:18,540 IT AWAY. 190 00:06:18,540 --> 00:06:19,475 >> WONDERFUL. 191 00:06:19,475 --> 00:06:21,810 THANK YOU SO MUCH FOR HAVING ME 192 00:06:21,810 --> 00:06:23,445 TODAY, AND I'M REALLY PLEASED TO 193 00:06:23,445 --> 00:06:24,213 JOIN THIS DISCUSSION. 194 00:06:24,213 --> 00:06:26,081 I'M GOING TO PULL UP MY OWN 195 00:06:26,081 --> 00:06:32,187 SLIDES HERE. 196 00:06:32,187 --> 00:06:34,490 HOPEFULLY YOU CAN SEE THEM. 197 00:06:34,490 --> 00:06:36,225 SO THANK YOU SO MUCH FOR HAVING 198 00:06:36,225 --> 00:06:38,327 ME HERE TODAY. 199 00:06:38,327 --> 00:06:40,963 I'M HERE TO TALK ABOUT A 200 00:06:40,963 --> 00:06:42,498 COMMITTEE FROM THE NATIONAL 201 00:06:42,498 --> 00:06:43,666 ACADEMIES OF SCIENCE, 202 00:06:43,666 --> 00:06:45,668 ENGINEERING AND MEDICINE THAT I 203 00:06:45,668 --> 00:06:47,069 CHAIRED, THE CONSENSUS REPORT 204 00:06:47,069 --> 00:06:51,240 WAS RELEASED IN MAY OF 2022, AND 205 00:06:51,240 --> 00:06:54,510 REALLY ALIGNED WELL WITH MANY -- 206 00:06:54,510 --> 00:06:57,046 THE INTERESTS CERTAINLY OF THIS 207 00:06:57,046 --> 00:06:57,780 DISCUSSION THAT YOU'VE BEEN 208 00:06:57,780 --> 00:07:01,083 HAVING HERE FOR THE LAST TWO 209 00:07:01,083 --> 00:07:04,787 DAYS, AND I WANT TO FOCUS THE 210 00:07:04,787 --> 00:07:06,021 RECOMMENDATIONS IN THIS REPORT 211 00:07:06,021 --> 00:07:07,623 THAT RELATE TO EVENTS THAT 212 00:07:07,623 --> 00:07:09,391 HAPPEN AFTER A STUDY IS 213 00:07:09,391 --> 00:07:09,692 COMPLETED. 214 00:07:09,692 --> 00:07:11,226 BUT I'M GOING TO GIVE YOU AN 215 00:07:11,226 --> 00:07:13,962 OVERVIEW OF THE ENTIRE REPORT 216 00:07:13,962 --> 00:07:17,466 JUST TO SET THE CONTEXT. 217 00:07:17,466 --> 00:07:19,335 SO THE CHARGE OF THIS PARTICULAR 218 00:07:19,335 --> 00:07:21,970 COMMITTEE WAS TO ADDRESS 219 00:07:21,970 --> 00:07:23,339 IMPROVING REPRESENTATION IN 220 00:07:23,339 --> 00:07:24,707 CLINICAL TRIALS AND CLINICAL 221 00:07:24,707 --> 00:07:25,908 RESEARCH, BUILDING RESEARCH 222 00:07:25,908 --> 00:07:28,944 EQUITY FOR WOMEN IN 223 00:07:28,944 --> 00:07:29,578 UNDERREPRESENTED GROUPS. 224 00:07:29,578 --> 00:07:37,052 I CHAIRED THIS COMMITTEE AND DRE 225 00:07:37,052 --> 00:07:38,253 NATIONAL ACADEMIES WAS MY 226 00:07:38,253 --> 00:07:38,587 CO-CHAIR. 227 00:07:38,587 --> 00:07:40,022 THIS IS THE COMMITTEE 228 00:07:40,022 --> 00:07:40,422 COMPOSITION. 229 00:07:40,422 --> 00:07:43,826 WE WERE REALLY FORTUNATE TO HAVE 230 00:07:43,826 --> 00:07:45,794 PEOPLE FROM A VARIETY OF 231 00:07:45,794 --> 00:07:48,097 DIFFERENT INSTITUTIONS, PEOPLE 232 00:07:48,097 --> 00:07:51,934 FROM INDUSTRY, PEOPLE WHO 233 00:07:51,934 --> 00:07:53,235 REPRESENTED A VARIETY OF 234 00:07:53,235 --> 00:07:56,205 DIFFERENT DISCIPLINES, AND I 235 00:07:56,205 --> 00:07:57,940 THINK REALLY REMARKABLY 236 00:07:57,940 --> 00:08:01,710 COMMITTED AND PASSIONATE GROUP 237 00:08:01,710 --> 00:08:02,911 OF INDIVIDUALS THAT I REALLY HAD 238 00:08:02,911 --> 00:08:04,446 THE GOOD FORTUNE TO WORK WITH, 239 00:08:04,446 --> 00:08:05,547 AND TO DO AN IMPORTANT REPORT 240 00:08:05,547 --> 00:08:08,550 THAT WE ALL DID REMOTELY, 241 00:08:08,550 --> 00:08:11,019 AND I THINK THIS REPORT, WE 242 00:08:11,019 --> 00:08:12,654 UNDERSTAND NOW, IS ONE OF THE 243 00:08:12,654 --> 00:08:14,823 MOST DOWNLOADED REPORTS LIKE IN 244 00:08:14,823 --> 00:08:16,592 THE TOP 15 OF THE DOWNLOADED 245 00:08:16,592 --> 00:08:18,660 REPORTS FROM THE NATIONAL 246 00:08:18,660 --> 00:08:18,961 ACADEMIES. 247 00:08:18,961 --> 00:08:20,529 AND I THINK REALLY SPEAKS TO THE 248 00:08:20,529 --> 00:08:21,730 IMPORTANCE OF THE TOPIC AND 249 00:08:21,730 --> 00:08:23,165 REALLY THE COMMITMENT OF ALL OF 250 00:08:23,165 --> 00:08:24,666 THE PEOPLE WHO WORKED ON THIS TO 251 00:08:24,666 --> 00:08:26,535 TRY TO BRING SOME OF THESE 252 00:08:26,535 --> 00:08:28,070 RECOMMENDATIONS TO LIGHT. 253 00:08:28,070 --> 00:08:29,505 WE BEGAN THIS REPORT BY TALKING 254 00:08:29,505 --> 00:08:31,140 ABOUT THE CASE FOR 255 00:08:31,140 --> 00:08:32,608 REPRESENTATION AND INCLUSION IN 256 00:08:32,608 --> 00:08:33,976 CLINICAL TRIALS AND CLINICAL 257 00:08:33,976 --> 00:08:35,944 RESEARCH, AND YOU, OF COURSE, 258 00:08:35,944 --> 00:08:37,146 HAVE GONE OVER MUCH OF THIS, AND 259 00:08:37,146 --> 00:08:40,449 THIS WILL NOT BE UNFAMILIAR TO 260 00:08:40,449 --> 00:08:40,983 YOU. 261 00:08:40,983 --> 00:08:42,618 BUT WE THOUGHT WE HAD TO SET THE 262 00:08:42,618 --> 00:08:43,786 STAGE TO REALLY MAKE THE POINT 263 00:08:43,786 --> 00:08:46,054 FOR ALL OF THE SECTORS IN OUR 264 00:08:46,054 --> 00:08:47,856 BIOMEDICAL ENTERPRISE WHO REALLY 265 00:08:47,856 --> 00:08:50,058 NEED TO ACT IN ORDER TO ACHIEVE 266 00:08:50,058 --> 00:08:54,663 A GOAL THAT WE HAVE NOT ACHIEVED 267 00:08:54,663 --> 00:08:56,298 DESPITE A COMMITMENT AND STATED 268 00:08:56,298 --> 00:08:57,065 COMMITMENT FOR MORE THAN 30 269 00:08:57,065 --> 00:08:59,768 YEARS TO THIS GOAL. 270 00:08:59,768 --> 00:09:01,770 SO WHY IS DIVERSE REPRESENTATION 271 00:09:01,770 --> 00:09:04,039 IN CLINICAL RESEARCH IMPORTANT? 272 00:09:04,039 --> 00:09:08,377 WE STARTED FIRST WITH NOTING 273 00:09:08,377 --> 00:09:10,245 THAT THIS COMPROMISES THE 274 00:09:10,245 --> 00:09:11,880 GENERALIZE ABILITYD TO CLINICAL 275 00:09:11,880 --> 00:09:13,282 RESEARCH TO THE U.S. POPULATION. 276 00:09:13,282 --> 00:09:15,150 IF WE'RE GOING TO SPEND -- THE 277 00:09:15,150 --> 00:09:16,885 MONEY WE SPEND ON BIOMEDICAL 278 00:09:16,885 --> 00:09:18,754 RESEARCH ACROSS GOVERNMENT, 279 00:09:18,754 --> 00:09:19,955 PRIVATE, INDUSTRY SECTORS, WE 280 00:09:19,955 --> 00:09:23,625 WOULD LIKE OUR STUDIES TO BE 281 00:09:23,625 --> 00:09:24,626 GENERALIZABLE TO THE POPULATIONS 282 00:09:24,626 --> 00:09:25,093 IN THE U.S. 283 00:09:25,093 --> 00:09:27,629 THE LACK OF REPRESENTATION 284 00:09:27,629 --> 00:09:30,032 HINDERS NEW DISCOVERY, HINDERS 285 00:09:30,032 --> 00:09:30,999 INNOVATION, WHICH IS ALSO A 286 00:09:30,999 --> 00:09:33,402 MAJOR DRIVER OF THE RESEARCH 287 00:09:33,402 --> 00:09:35,938 THAT WE ARE ALL ENGAGED IN. 288 00:09:35,938 --> 00:09:38,440 LACK OF REPRESENTATION MAY 289 00:09:38,440 --> 00:09:39,975 COMPOUND LOW ACCRUAL THAT CAUSES 290 00:09:39,975 --> 00:09:43,145 MANY TRIALS TO FAIL. 291 00:09:43,145 --> 00:09:44,613 AS YOU ALL KNOW, MANY TRIALS DO 292 00:09:44,613 --> 00:09:46,114 NOT GET TO FULL ACCRUAL AND IF 293 00:09:46,114 --> 00:09:48,116 WE DON'T HAVE ALL OF THE 294 00:09:48,116 --> 00:09:49,384 POPULATIONS IN OUR AREAS THAT WE 295 00:09:49,384 --> 00:09:52,554 WOULD LIKE TO INCLUDE, THAT MAY 296 00:09:52,554 --> 00:09:54,289 COMPOUND THE LOW ACCRUAL THAT 297 00:09:54,289 --> 00:09:56,825 OCCURS OVERALL. 298 00:09:56,825 --> 00:09:58,227 LACK OF REPRESENTATION MAY LEAD 299 00:09:58,227 --> 00:10:02,831 TO LEAD TO LACK OF ACCESS TO 300 00:10:02,831 --> 00:10:03,832 MEDICAL INTERVENTIONS. 301 00:10:03,832 --> 00:10:05,701 OFTENTIMES THE APPROVAL OR 302 00:10:05,701 --> 00:10:06,668 COVERAGE OF THESE INTERVENTIONS 303 00:10:06,668 --> 00:10:09,071 IS DIRECTLY RELATED TO THE TYPES 304 00:10:09,071 --> 00:10:10,172 OF POPULATIONS THAT ARE 305 00:10:10,172 --> 00:10:11,707 REPRESENTED IN A PARTICULAR 306 00:10:11,707 --> 00:10:12,341 STUDY. 307 00:10:12,341 --> 00:10:17,613 AND SO THAT'S IMPORTANT AS WELL. 308 00:10:17,613 --> 00:10:19,248 LACK OF REPRESENTATION MAY 309 00:10:19,248 --> 00:10:20,449 UNDERMINE TRUST, AND WE HAVE 310 00:10:20,449 --> 00:10:21,750 SEEN THIS THROUGHOUT THE 311 00:10:21,750 --> 00:10:22,251 PANDEMIC. 312 00:10:22,251 --> 00:10:23,852 WE SEE THIS IN A VARIETY OF 313 00:10:23,852 --> 00:10:27,222 AREAS AND PARTICULARLY AS MORE 314 00:10:27,222 --> 00:10:30,425 COMMUNITIES ARE ACTIVATED AND 315 00:10:30,425 --> 00:10:31,393 UNDERSTAND THE IMPORTANCE OF 316 00:10:31,393 --> 00:10:33,228 HAVING STUDIES ABOUT THEM, 317 00:10:33,228 --> 00:10:38,066 HAVING THEM INCLUDED IN STUDIES, 318 00:10:38,066 --> 00:10:40,602 AND SO THE LACK OF TRUST AGAIN 319 00:10:40,602 --> 00:10:42,638 THEN FEEDS TO THE LACK OF USE OF 320 00:10:42,638 --> 00:10:43,739 EFFECTIVE MEDICAL INTERVENTIONS 321 00:10:43,739 --> 00:10:45,607 AS WELL. 322 00:10:45,607 --> 00:10:47,809 THAT LACK OF REPRESENTATION 323 00:10:47,809 --> 00:10:49,645 COMPOUNDS HEALTH DISPARITIES, 324 00:10:49,645 --> 00:10:50,746 BECAUSE THE POPULATIONS THAT ARE 325 00:10:50,746 --> 00:10:52,748 CURRENTLY UNDERREPRESENTED IN 326 00:10:52,748 --> 00:10:53,916 CLINICAL TRIALS AND CLINICAL 327 00:10:53,916 --> 00:10:56,118 RESEARCH ARE ALSO THOSE WHO ARE 328 00:10:56,118 --> 00:10:58,820 DISPROPORTIONATELY REPRESENTED 329 00:10:58,820 --> 00:11:00,255 IN THE ADVERSE HEALTH OUTCOMES 330 00:11:00,255 --> 00:11:02,457 THAT WE SEE SO STARKLY AND 331 00:11:02,457 --> 00:11:04,092 CLEARLY IN THE U.S., AND THEN 332 00:11:04,092 --> 00:11:06,161 THE LACK OF REPRESENTATION IS 333 00:11:06,161 --> 00:11:07,796 ACTUALLY QUITE COSTLY TO THE 334 00:11:07,796 --> 00:11:08,797 U.S. 335 00:11:08,797 --> 00:11:11,300 WE COMMISSIONED AN ECONOMIC 336 00:11:11,300 --> 00:11:13,268 STUDY AS A PART OF THIS 337 00:11:13,268 --> 00:11:14,603 CONSENSUS PANEL, AND BASICALLY 338 00:11:14,603 --> 00:11:16,238 THIS ECONOMIC STUDY WAS DESIGNED 339 00:11:16,238 --> 00:11:21,476 TO LOOK AT THOSE POPULATIONS WE 340 00:11:21,476 --> 00:11:23,545 WERE FOCUSED HERE ON RACIAL AND 341 00:11:23,545 --> 00:11:28,817 ETHNIC MINORITY POPULATIONS, 342 00:11:28,817 --> 00:11:30,819 THAT HOW MUCH DO THE DISPARITIES 343 00:11:30,819 --> 00:11:32,854 WE SEE IN COMMON CHRONIC 344 00:11:32,854 --> 00:11:35,624 CONDITIONS ACTUALLY COST 345 00:11:35,624 --> 00:11:36,024 THE U.S. 346 00:11:36,024 --> 00:11:38,760 SO IF WE LOOK AT THOSE 347 00:11:38,760 --> 00:11:41,396 DISPARITIES, THEY COST THE 348 00:11:41,396 --> 00:11:43,465 U.S. -- THIS IS REALLY FOCUSED 349 00:11:43,465 --> 00:11:46,068 ON BLACK AND LATINO POPULATIONS 350 00:11:46,068 --> 00:11:47,970 IN THE U.S. BECAUSE THAT'S WHERE 351 00:11:47,970 --> 00:11:49,171 THE DATA -- WE HAVE THE MOST 352 00:11:49,171 --> 00:11:52,007 AMOUNT OF DATA TO TAKE A 353 00:11:52,007 --> 00:11:52,641 COMPREHENSIVE LOOK AT THE COST 354 00:11:52,641 --> 00:11:55,744 OF THESE DISPARITIES. 355 00:11:55,744 --> 00:11:57,479 IN DIABETES, THEY'RE COSTING 356 00:11:57,479 --> 00:11:58,680 NEARLY ONE YEAR OF INCREASE IN 357 00:11:58,680 --> 00:12:00,315 LIFE EXPECTANCY, MORE THAN A 358 00:12:00,315 --> 00:12:04,386 YEAR IN DISABILITY-FREE LIFE 359 00:12:04,386 --> 00:12:05,787 EXPECTANCY, AND IT'S COSTING 360 00:12:05,787 --> 00:12:07,422 YEARS IN THE WORKFORCE. 361 00:12:07,422 --> 00:12:10,826 WE SEE THE SAME NUMBERS FOR 362 00:12:10,826 --> 00:12:12,260 HEART DISEASE, AND WE SEE THE 363 00:12:12,260 --> 00:12:15,664 SAME NUMBERS FOR HYPERTENSION. 364 00:12:15,664 --> 00:12:16,965 AND THE POINT HERE IS THAT WHEN 365 00:12:16,965 --> 00:12:18,600 WE CONSIDER THE ECONOMIC COST OF 366 00:12:18,600 --> 00:12:22,871 HEALTH DISPARITIES, IS THAT IF 367 00:12:22,871 --> 00:12:25,140 WE WERE TO ELIMINATE LIFE 368 00:12:25,140 --> 00:12:27,542 EXPECTANCY DISPARITIES FOR THESE 369 00:12:27,542 --> 00:12:29,311 THREE CONDITIONS AND JUST THESE 370 00:12:29,311 --> 00:12:32,814 THREE CONDITIONS, THE VALUE 371 00:12:32,814 --> 00:12:33,882 ASSOCIATED WITH THAT CHANGE IN 372 00:12:33,882 --> 00:12:36,218 LIFE EXPECTANCY WOULD BE ON THE 373 00:12:36,218 --> 00:12:39,054 ORDER OF TRILLIONS OF DOLLARS. 374 00:12:39,054 --> 00:12:40,589 THE VALUE FOR EVEN MODEST 375 00:12:40,589 --> 00:12:41,990 REDUCTIONS IN HEALTH DISPARITIES 376 00:12:41,990 --> 00:12:43,759 WOULD THEN BE ON THE ORDER OF 377 00:12:43,759 --> 00:12:45,160 BILLIONS OF DOLLARS, AND LET ME 378 00:12:45,160 --> 00:12:47,596 BE CLEAR, WE ALL KNOW THAT THERE 379 00:12:47,596 --> 00:12:49,097 ARE MULTIPLE FACTORS THAT 380 00:12:49,097 --> 00:12:51,933 CONTRIBUTE TO DISPARATE LIFE 381 00:12:51,933 --> 00:12:53,368 EXPECTANCIES THAT WE SEE IN THE 382 00:12:53,368 --> 00:12:53,602 U.S. 383 00:12:53,602 --> 00:12:56,104 THE TYPE OF WORK THAT IS FUNDED 384 00:12:56,104 --> 00:12:56,972 THROUGH CLINICAL TRIALS AND 385 00:12:56,972 --> 00:12:58,740 CLINICAL RESEARCH REALLY IS NOT 386 00:12:58,740 --> 00:13:00,809 EXPECTED TO ADDRESS ALL OF 387 00:13:00,809 --> 00:13:04,012 THOSE, BUT IF IT ONLY ADDRESSED 388 00:13:04,012 --> 00:13:06,281 A VERY SMALL FRACTION, 1%, WE 389 00:13:06,281 --> 00:13:10,318 ARE STILL TALKING ABOUT LARGE 390 00:13:10,318 --> 00:13:14,256 AMOUNT OF ECONOMIC VALUE THAT WE 391 00:13:14,256 --> 00:13:14,990 ARE POTENTIALLY FOREGOING 392 00:13:14,990 --> 00:13:16,558 BECAUSE WE DO NOT HAVE 393 00:13:16,558 --> 00:13:18,960 REPRESENTATION IN OUR STUDIES. 394 00:13:18,960 --> 00:13:21,363 AND THAT WAS THE POINT OF THIS 395 00:13:21,363 --> 00:13:25,867 ECONOMIC ANALYSIS AS WELL. 396 00:13:25,867 --> 00:13:27,269 SO WE SPENT A BIT OF TIME IN OUR 397 00:13:27,269 --> 00:13:28,970 STUDY TO LOOK AT WHAT THE 398 00:13:28,970 --> 00:13:29,905 CURRENT STATUS IS, AND I KNOW 399 00:13:29,905 --> 00:13:31,640 YOU HAVE ALREADY GONE OVER THESE 400 00:13:31,640 --> 00:13:32,107 NUMBERS. 401 00:13:32,107 --> 00:13:33,275 WHAT OUR COMMITTEE REPORT FOUND 402 00:13:33,275 --> 00:13:36,878 WAS REALLY THAT DESPITE THREE 403 00:13:36,878 --> 00:13:40,082 DECADES, REALLY, OF STATEMENTS 404 00:13:40,082 --> 00:13:42,718 AND OF STATED COMMITMENT TO 405 00:13:42,718 --> 00:13:43,618 IMPROVING REPRESENTATION IN 406 00:13:43,618 --> 00:13:46,955 CLINICAL TRIALS AND CLINICAL 407 00:13:46,955 --> 00:13:48,323 RESEARCH, THAT REALLY THE 408 00:13:48,323 --> 00:13:49,057 PROGRESS PARTICULARLY FOR 409 00:13:49,057 --> 00:13:50,892 INCLUSION OF RACIAL AND ETHNIC 410 00:13:50,892 --> 00:13:52,127 MINORITY POPULATIONS HAVE 411 00:13:52,127 --> 00:13:53,628 LARGELY REMAINED STAGNANT OVER 412 00:13:53,628 --> 00:13:55,597 THIS TIME. 413 00:13:55,597 --> 00:13:57,032 THERE HAS BEEN INCREASE IN THE 414 00:13:57,032 --> 00:13:58,767 REPRESENTATION OF WOMEN, BUT 415 00:13:58,767 --> 00:14:04,806 THIS ALSO IS, IN CERTAIN AREAS, 416 00:14:04,806 --> 00:14:06,842 AND DOESN'T INCLUDE MANY 417 00:14:06,842 --> 00:14:10,378 POPULATIONS OF WOMEN THAT -- 418 00:14:10,378 --> 00:14:12,013 PARTICULARLY RACIAL AND ETHNIC 419 00:14:12,013 --> 00:14:13,882 MINORITY POPULATIONS ARE ALSO 420 00:14:13,882 --> 00:14:14,516 UNDERREPRESENTED. 421 00:14:14,516 --> 00:14:15,951 THE OTHER THING THAT WAS QUITE 422 00:14:15,951 --> 00:14:17,152 STRIKING TO THE COMMITTEE WAS 423 00:14:17,152 --> 00:14:18,920 HOW POOR THE DATA IS IN THIS 424 00:14:18,920 --> 00:14:20,122 AREA, WHICH IS IMPORTANT FOR 425 00:14:20,122 --> 00:14:23,058 MONITORING AND SURVEILLANCE. 426 00:14:23,058 --> 00:14:24,359 AND AS YOU HAVE ALSO TALKED 427 00:14:24,359 --> 00:14:25,894 ABOUT, THIS IS NOT BECAUSE OF A 428 00:14:25,894 --> 00:14:28,430 LACK OF WILLINGNESS OF THOSE 429 00:14:28,430 --> 00:14:33,335 COMMUNITIES THAT ARE 430 00:14:33,335 --> 00:14:33,735 UNDERREPRESENTED. 431 00:14:33,735 --> 00:14:35,537 WHAT THE COMMITTEE WAS STRUCK BY 432 00:14:35,537 --> 00:14:38,140 WAS HOW OFTEN IT IS REALLY A 433 00:14:38,140 --> 00:14:39,574 FAILURE TO ASK AND HAVE 434 00:14:39,574 --> 00:14:43,979 INFRASTRUCTURE IN PLACE TO 435 00:14:43,979 --> 00:14:45,280 REALLY -- TO ASK POPULATIONS 436 00:14:45,280 --> 00:14:46,581 THAT ARE CURRENTLY 437 00:14:46,581 --> 00:14:47,349 UNDERREPRESENTED TO PARTICIPATE 438 00:14:47,349 --> 00:14:48,750 IN THESE STUDIES. 439 00:14:48,750 --> 00:14:51,586 SO THESE ARE THE -- I'M GOING TO 440 00:14:51,586 --> 00:14:54,222 MOVE TO THE FIVE OVERARCHING 441 00:14:54,222 --> 00:14:55,757 CONCLUSIONS OF THIS REPORT, AND 442 00:14:55,757 --> 00:14:58,727 THEN GO TO SOME SPECIFIC 443 00:14:58,727 --> 00:14:59,628 RECOMMENDATIONS THAT RELATE TO 444 00:14:59,628 --> 00:15:00,796 WHAT HAPPENS AFTER THE STUDY. 445 00:15:00,796 --> 00:15:02,430 ONE IS THAT WE FOUND THAT 446 00:15:02,430 --> 00:15:04,733 IMPROVING REPRESENTATION IS AN 447 00:15:04,733 --> 00:15:07,369 URGENT PROBLEM THAT NEEDS TO BE 448 00:15:07,369 --> 00:15:07,803 ADDRESSED. 449 00:15:07,803 --> 00:15:09,337 THAT WE HAVE MADE PERSISTENT 450 00:15:09,337 --> 00:15:10,305 STATEMENTS ABOUT THIS BUT WE 451 00:15:10,305 --> 00:15:11,173 HAVE MADE LACK OF PROGRESS AND 452 00:15:11,173 --> 00:15:13,708 THE NEED TO DO THIS IS URGENT. 453 00:15:13,708 --> 00:15:15,110 THAT THIS IS GOING TO REQUIRE 454 00:15:15,110 --> 00:15:16,311 INVESTMENT. 455 00:15:16,311 --> 00:15:18,747 AND INVESTMENT ACROSS MANY 456 00:15:18,747 --> 00:15:20,816 DIFFERENT SECTORS INVOLVED IN 457 00:15:20,816 --> 00:15:22,217 OUR BIOMEDICAL ENTERPRISE. 458 00:15:22,217 --> 00:15:25,520 IT REQUIRES TRANSPARENCY AND 459 00:15:25,520 --> 00:15:26,121 ACCOUNTABILITY. 460 00:15:26,121 --> 00:15:27,022 ONE OF THE THINGS THAT WAS MOST 461 00:15:27,022 --> 00:15:31,526 STRIKING TO US IS HOW MANY 462 00:15:31,526 --> 00:15:33,495 DIFFERENT SECTORS IN OUR 463 00:15:33,495 --> 00:15:34,262 BIOMEDICAL ENTERPRISE STATE THAT 464 00:15:34,262 --> 00:15:35,697 THIS IS IMPORTANT BUT HAVE NOT 465 00:15:35,697 --> 00:15:37,199 TAKEN THE STEPS TO ACT. 466 00:15:37,199 --> 00:15:40,502 IT SEEMS THAT IT IS EVERYONE'S 467 00:15:40,502 --> 00:15:41,703 RESPONSIBILITY AND, THEREFORE, 468 00:15:41,703 --> 00:15:43,038 IT BECOMES NO ONE'S 469 00:15:43,038 --> 00:15:44,005 RESPONSIBILITY, AND THAT'S WHERE 470 00:15:44,005 --> 00:15:44,873 YOU'LL SEE WHERE OUR 471 00:15:44,873 --> 00:15:45,807 RECOMMENDATIONS ARE FOCUSED. 472 00:15:45,807 --> 00:15:47,709 IT IS SOMETHING THAT SOMETHING 473 00:15:47,709 --> 00:15:49,578 THE RESPONSIBILITY OF EVERYONE 474 00:15:49,578 --> 00:15:53,515 INVOLVED IN THE BIOMEDICAL 475 00:15:53,515 --> 00:15:54,382 ENTERPRISE. 476 00:15:54,382 --> 00:15:55,717 EACH PLAYER HAS A PART TO PLAY 477 00:15:55,717 --> 00:15:57,786 IN THIS, AND THAT ULTIMATELY, 478 00:15:57,786 --> 00:15:59,154 WHILE MANY OF OUR 479 00:15:59,154 --> 00:16:00,856 RECOMMENDATIONS ARE FOCUSED ON 480 00:16:00,856 --> 00:16:02,924 THE NEXT STEP, PARTICULARLY 481 00:16:02,924 --> 00:16:06,761 POLICIES THAT SHOULD BE PUT INTO 482 00:16:06,761 --> 00:16:09,264 PLACE TO BASICALLY THROUGH A 483 00:16:09,264 --> 00:16:11,333 COMBINATION OF CARROTS AND 484 00:16:11,333 --> 00:16:13,001 STICKS GET US TO DO THIS WITH 485 00:16:13,001 --> 00:16:15,604 MORE DELIBERATE SPEED, 486 00:16:15,604 --> 00:16:16,938 ULTIMATELY WHAT'S REQUIRED FOR A 487 00:16:16,938 --> 00:16:23,144 MORE EQUITABLE FUTURE HAS A 488 00:16:23,144 --> 00:16:24,045 PARADIGM SHIFT THAT MOVES THE 489 00:16:24,045 --> 00:16:25,547 BALANCE OF POWER AND PUTS THE 490 00:16:25,547 --> 00:16:27,315 COMMUNITIES AND VOICES AND 491 00:16:27,315 --> 00:16:28,516 INTERESTS OF COMMUNITIES AT THE 492 00:16:28,516 --> 00:16:29,885 CENTER OF THE WAY WE THINK ABOUT 493 00:16:29,885 --> 00:16:31,686 INVOLVEMENT IN THE BIOMEDICAL 494 00:16:31,686 --> 00:16:32,320 ENTERPRISE. 495 00:16:32,320 --> 00:16:34,122 AND THAT'S AN IMPORTANT 496 00:16:34,122 --> 00:16:36,291 CONCLUSION OF THIS REPORT AS 497 00:16:36,291 --> 00:16:36,925 WELL. 498 00:16:36,925 --> 00:16:38,260 SO LET ME GO TO THE 499 00:16:38,260 --> 00:16:39,227 RECOMMENDATIONS, AND REALLY AS 500 00:16:39,227 --> 00:16:40,528 THEY RELATE TO WHAT HAPPENS 501 00:16:40,528 --> 00:16:42,597 AFTER THE STUDY. 502 00:16:42,597 --> 00:16:45,600 WE TALKED ABOUT HHS AND AN 503 00:16:45,600 --> 00:16:46,902 INTERDEPARTMENTAL TASK FORCE 504 00:16:46,902 --> 00:16:48,637 CHARGED WITH COORDINATING THE 505 00:16:48,637 --> 00:16:50,505 VARIOUS STAKEHOLDERS TO ENSURE 506 00:16:50,505 --> 00:16:52,807 THAT THERE'S BETTER DATA FOR 507 00:16:52,807 --> 00:16:53,775 SURVEILLANCE. 508 00:16:53,775 --> 00:16:56,077 THE NIH TO STANDARDIZE 509 00:16:56,077 --> 00:16:57,279 SUBMISSION OF DEMOGRAPHIC 510 00:16:57,279 --> 00:16:59,481 CHARACTERISTICS TO 511 00:16:59,481 --> 00:17:00,115 CLINICALTRIALS.GOV. 512 00:17:00,115 --> 00:17:01,449 WE WERE REALLY MISSING A LOT OF 513 00:17:01,449 --> 00:17:03,952 DATA, TO REALLY MONITOR WHAT OUR 514 00:17:03,952 --> 00:17:05,487 PROGRESS IS IN THIS WAY AND WE 515 00:17:05,487 --> 00:17:07,455 REALLY NEED TO HAVE A WAY TO 516 00:17:07,455 --> 00:17:12,160 MONITOR PROGRESS IN THIS REGARD. 517 00:17:12,160 --> 00:17:13,461 I'M NOW IN CHARGE OF A JOURNAL 518 00:17:13,461 --> 00:17:17,399 AND WE DID PUT A CALL TO 519 00:17:17,399 --> 00:17:19,334 JOURNALS AND TO JOURNAL EDITORS 520 00:17:19,334 --> 00:17:20,702 AND PUBLISHERS TO REQUIRE 521 00:17:20,702 --> 00:17:22,304 INFORMATION ON THE 522 00:17:22,304 --> 00:17:23,405 REPRESENTATIVENESS OF TRIALS AND 523 00:17:23,405 --> 00:17:25,273 STUDIES FOR SUBMISSIONS TO THEIR 524 00:17:25,273 --> 00:17:28,109 JOURNALS, AND TO CONSIDER 525 00:17:28,109 --> 00:17:29,210 REPRESENTATIVENESS OF STUDIES IN 526 00:17:29,210 --> 00:17:30,845 THE DECISIONS THAT THEY MAKE 527 00:17:30,845 --> 00:17:31,413 ABOUT THIS. 528 00:17:31,413 --> 00:17:33,815 AND YOU'VE SEEN MANY JOURNALS 529 00:17:33,815 --> 00:17:35,250 ACTUALLY PUTTING MORE 530 00:17:35,250 --> 00:17:39,621 INFORMATION OUT THERE SO THAT 531 00:17:39,621 --> 00:17:42,190 READERS CAN JUDGE THE 532 00:17:42,190 --> 00:17:42,991 GENERALIZABILITY OF FINDINGS TO 533 00:17:42,991 --> 00:17:46,494 THE POPULATIONS IN THE U.S. 534 00:17:46,494 --> 00:17:49,431 WE HAVE RECOMMENDATIONS ON 535 00:17:49,431 --> 00:17:50,765 ACCOUNTABILITY, AND THE FDA 536 00:17:50,765 --> 00:17:52,434 REQUIRING STUDY SPONSORS TO 537 00:17:52,434 --> 00:17:55,136 SUBMIT DETAILED RECRUITMENT 538 00:17:55,136 --> 00:17:56,571 PLANS NO LATER THAN AT THE TIME 539 00:17:56,571 --> 00:17:58,974 OF THE APPLICATION FOR NEW DRUG 540 00:17:58,974 --> 00:18:01,142 AND DEVICABLECATIONS. 541 00:18:01,142 --> 00:18:03,545 THE IDEA HERE IS TO PUT THOSE 542 00:18:03,545 --> 00:18:05,747 REQUIREMENTS INTO PLACE UP 543 00:18:05,747 --> 00:18:08,483 FRONT, AND BECAUSE MANY OF THESE 544 00:18:08,483 --> 00:18:10,452 STUDIES ARE ABOUT APPROVAL OF 545 00:18:10,452 --> 00:18:14,289 NEW DRUGS OR DEVICES, THAT 546 00:18:14,289 --> 00:18:15,824 HAVING THIS EARLY IN THE PROCESS 547 00:18:15,824 --> 00:18:17,826 PROVIDES THAT ACCOUNTABILITY 548 00:18:17,826 --> 00:18:18,893 LAYER. 549 00:18:18,893 --> 00:18:21,830 WE HAVE RECOMMENDATIONS TO THE 550 00:18:21,830 --> 00:18:24,366 NIH OF REALLY ENSURING 551 00:18:24,366 --> 00:18:25,767 ENFORCEABILITY OF BOTH AT THE 552 00:18:25,767 --> 00:18:31,139 TIME OF GRANT REVIEW ALL THE WAY 553 00:18:31,139 --> 00:18:32,340 THROUGH THE YEARLY PROGRESS 554 00:18:32,340 --> 00:18:34,409 REPORTS TO INCLUDE THAT 555 00:18:34,409 --> 00:18:35,243 PARTICIPANT REPRESENTATION IS A 556 00:18:35,243 --> 00:18:38,246 PART OF SCORE -DRIVING CRITERIA. 557 00:18:38,246 --> 00:18:41,316 TO WORK WITH LOCAL IRBs TO 558 00:18:41,316 --> 00:18:42,417 ENSURE THAT REPRESENTATIVENESS 559 00:18:42,417 --> 00:18:44,152 IS ONE OF THE CRITERIA OF SOUND 560 00:18:44,152 --> 00:18:45,920 STUDY DESIGNS, AND TO THINK 561 00:18:45,920 --> 00:18:47,222 ABOUT THIS, AND THIS IS REALLY 562 00:18:47,222 --> 00:18:47,989 IMPORTANT BECAUSE THIS IS AFTER 563 00:18:47,989 --> 00:18:52,160 THE STUDY, THAT COVERAGE 564 00:18:52,160 --> 00:18:53,895 DECISIONS THAT CMS IS ENGAGED 565 00:18:53,895 --> 00:18:56,064 IN, THE CENTER FOR MEDICARE AND 566 00:18:56,064 --> 00:18:57,265 MEDICAID SERVICES, SHOULD BE 567 00:18:57,265 --> 00:18:58,466 BASED ON EVIDENCE DEVELOPMENT 568 00:18:58,466 --> 00:19:02,637 THAT IS BASED ON STUDIES THAT 569 00:19:02,637 --> 00:19:05,040 HAVE DIVERSE REPRESENTATION. 570 00:19:05,040 --> 00:19:07,776 WE TALKED A LOT ABOUT FEDERAL 571 00:19:07,776 --> 00:19:09,177 INCENTIVES. 572 00:19:09,177 --> 00:19:11,513 CONGRESS TO DIRECT THE FDA TO 573 00:19:11,513 --> 00:19:14,249 ENFORCE EXISTING ACCOUNTABILITY 574 00:19:14,249 --> 00:19:15,550 MEASURES, AND THEN TO ESTABLISH 575 00:19:15,550 --> 00:19:17,185 NEW ACCOUNTABILITY MEASURES. 576 00:19:17,185 --> 00:19:19,054 THERE ARE A NUMBER OF MEASURES 577 00:19:19,054 --> 00:19:20,522 THAT ARE CURRENTLY IN PLACE AT 578 00:19:20,522 --> 00:19:26,494 THE FDA THAT COULD BE ENFORCED 579 00:19:26,494 --> 00:19:30,298 TO HOLD ACCOUNTABLE THOSE GOING 580 00:19:30,298 --> 00:19:31,833 TO THE FDA FOR NEW DRUG OR 581 00:19:31,833 --> 00:19:33,468 DEVICE APPROVAL. 582 00:19:33,468 --> 00:19:35,236 WE ALSO HAD RECOMMENDATIONS 583 00:19:35,236 --> 00:19:37,305 RELATED TO INCENTIVES THAT 584 00:19:37,305 --> 00:19:39,407 RELATE TO ACCELERATED APPROVAL 585 00:19:39,407 --> 00:19:41,910 FOR STUDIES THAT ACTUALLY 586 00:19:41,910 --> 00:19:45,413 ACHIEVE THESE TYPES OF CRITERIA. 587 00:19:45,413 --> 00:19:48,049 AGAIN, IN THE SPIRIT OF CARROTS 588 00:19:48,049 --> 00:19:49,451 AND STICKS, WE MADE 589 00:19:49,451 --> 00:19:51,653 RECOMMENDATIONS THAT CMS SHOULD 590 00:19:51,653 --> 00:19:52,754 EXPEDITE COVERAGE DECISIONS FOR 591 00:19:52,754 --> 00:19:54,722 DRUGS AND DEVICES THAT HAVE BEEN 592 00:19:54,722 --> 00:19:56,224 IMPROVED ON THE BASIS OF 593 00:19:56,224 --> 00:19:57,258 CLINICAL DEVELOPMENT PROGRAMS 594 00:19:57,258 --> 00:20:02,130 THAT ARE REPRESENTATIVE OF THE 595 00:20:02,130 --> 00:20:03,031 POPULATIONS MOST AFFECTED BY 596 00:20:03,031 --> 00:20:03,765 TREATABLE CONDITIONS. 597 00:20:03,765 --> 00:20:06,701 THAT CMS SHOULD ACTUALLY WORK TO 598 00:20:06,701 --> 00:20:07,502 INCENTIVIZE COMMUNITY PROVIDERS 599 00:20:07,502 --> 00:20:10,038 THAT MORE COMMUNITY PROVIDERS 600 00:20:10,038 --> 00:20:12,207 HAVE THE INFRASTRUCTURE TO 601 00:20:12,207 --> 00:20:13,975 ENROLL AND RETAIN PARTICIPANTS 602 00:20:13,975 --> 00:20:18,113 AND THAT CMS AS ONE OF THE WAYS 603 00:20:18,113 --> 00:20:20,181 IN WHICH REIMBURSEMENT HAPPENS 604 00:20:20,181 --> 00:20:22,283 COULD PROVIDE THOSE TYPES OF 605 00:20:22,283 --> 00:20:23,785 INCENTIVES TO ENABLE MORE 606 00:20:23,785 --> 00:20:25,320 COMMUNITY PROVIDERS TO BE 607 00:20:25,320 --> 00:20:29,190 INVOLVED IN BIOMEDICAL RESEARCH, 608 00:20:29,190 --> 00:20:31,659 AND THAT THE GAO SHOULD BE 609 00:20:31,659 --> 00:20:34,863 THINKING ABOUT OVERALL 610 00:20:34,863 --> 00:20:36,498 MONITORING AND EVALUATION OF THE 611 00:20:36,498 --> 00:20:38,233 IMPACT OF THE REIMBURSEMENT OF 612 00:20:38,233 --> 00:20:40,602 ROUTINE CARE ASSOCIATED WITH 613 00:20:40,602 --> 00:20:43,838 CLINICAL TRIALS PARTICIPATION 614 00:20:43,838 --> 00:20:45,039 RELATED TO BOTH MEDICARE AND 615 00:20:45,039 --> 00:20:45,340 MEDICAID. 616 00:20:45,340 --> 00:20:46,774 WE TALKED A LOT ABOUT 617 00:20:46,774 --> 00:20:49,077 REMUNERATION OF STUDY 618 00:20:49,077 --> 00:20:50,578 PARTICIPANTS AND THE TYPES OF 619 00:20:50,578 --> 00:20:51,679 FEDERAL POLICIES THAT NEED TO BE 620 00:20:51,679 --> 00:20:55,416 IN PLACE TO MAKE SURE THAT LOCAL 621 00:20:55,416 --> 00:20:58,153 IRBs HAVE EXPLICIT GUIDANCE ON 622 00:20:58,153 --> 00:20:59,120 EQUITABLE COMPENSATION FOR 623 00:20:59,120 --> 00:21:04,292 PARTICIPANT RESEARCH -- FOR 624 00:21:04,292 --> 00:21:06,361 PARTICIPANTS WHO ARE -- 625 00:21:06,361 --> 00:21:07,462 PARTICIPANTS OR THEIR 626 00:21:07,462 --> 00:21:08,763 CAREGIVERS, AND THIS WAS A VERY 627 00:21:08,763 --> 00:21:09,864 IMPORTANT POINT FOR THE 628 00:21:09,864 --> 00:21:12,901 COMMITTEE. 629 00:21:12,901 --> 00:21:14,135 IT COST TO PARTICIPATE IN TRIALS 630 00:21:14,135 --> 00:21:16,304 AND STUDY PARTICIPANTS SHOULD BE 631 00:21:16,304 --> 00:21:19,040 COMPENSATED EQUITABLY, AND THAT 632 00:21:19,040 --> 00:21:20,909 ALL SPONSORS SHOULD ENSURE THAT 633 00:21:20,909 --> 00:21:23,511 TRIALS PROVIDE EQUITABLE -- 634 00:21:23,511 --> 00:21:24,412 ADEQUATE COMPENSATION FOR 635 00:21:24,412 --> 00:21:25,280 RESEARCH PARTICIPANTS. 636 00:21:25,280 --> 00:21:27,682 AND THEN WE TALKED ABOUT THE 637 00:21:27,682 --> 00:21:29,651 BROADER MILIEU THAT ALL OF 638 00:21:29,651 --> 00:21:31,486 RESEARCH TAKES PLACE AND THAT 639 00:21:31,486 --> 00:21:34,689 THE PRINCIPLES OF EQUITY APPLY 640 00:21:34,689 --> 00:21:36,424 BOTH TO THOSE WHO ARE IN THE 641 00:21:36,424 --> 00:21:37,859 WORKFORCE WHO ARE ENGAGED IN 642 00:21:37,859 --> 00:21:39,227 DOING THIS TYPE OF WORK AS WELL 643 00:21:39,227 --> 00:21:42,664 AS THE PARTNERSHIPS INVOLVED. 644 00:21:42,664 --> 00:21:44,299 THAT ALL ENTITIES INVOLVED IN 645 00:21:44,299 --> 00:21:46,367 THE CONDUCT OF CLINICAL TRIALS, 646 00:21:46,367 --> 00:21:47,902 WE SHOULD ALL BE ENSURING A 647 00:21:47,902 --> 00:21:50,905 DIVERSE AND INCLUSIVE WORKFORCE, 648 00:21:50,905 --> 00:21:52,073 PARTICULARLY IN LEADERSHIP 649 00:21:52,073 --> 00:21:52,507 POSITIONS. 650 00:21:52,507 --> 00:21:53,808 THAT LARGE HEALTH CENTERS SHOULD 651 00:21:53,808 --> 00:21:56,644 BE INVOLVED IN COMMUNITY -- IN 652 00:21:56,644 --> 00:21:58,646 SUPPORTING COMMUNITY ENGAGED 653 00:21:58,646 --> 00:22:00,148 SCHOLARSHIP, AND THAT THAT IS 654 00:22:00,148 --> 00:22:01,583 ESSENTIAL TO PROVIDE THE 655 00:22:01,583 --> 00:22:02,750 INFRASTRUCTURE TO VALUE THIS 656 00:22:02,750 --> 00:22:07,922 TYPE OF WORK, THAT TRAINING AND 657 00:22:07,922 --> 00:22:09,290 COMMUNITY ENGAGEMENT AND THE 658 00:22:09,290 --> 00:22:11,593 PRINCIPLES OF DEI FOR ALL STUDY 659 00:22:11,593 --> 00:22:14,596 PARTICIPANTS IS ESSENTIAL, AND 660 00:22:14,596 --> 00:22:16,564 THAT INVESTMENT IN COMMUNITY 661 00:22:16,564 --> 00:22:18,533 RESEARCH INFRASTRUCTURE TO 662 00:22:18,533 --> 00:22:19,901 IMPROVE THE REPRESENTATION OF 663 00:22:19,901 --> 00:22:20,835 CLINICAL TRIALS AND CLINICAL 664 00:22:20,835 --> 00:22:21,903 RESEARCH IS ESSENTIAL. 665 00:22:21,903 --> 00:22:23,671 OUR RECOMMENDATIONS ARE FOCUSED 666 00:22:23,671 --> 00:22:25,106 ON POLICY BECAUSE WE BELIEVE 667 00:22:25,106 --> 00:22:27,408 THAT THIS IS SOMETHING THAT'S 668 00:22:27,408 --> 00:22:27,875 POSSIBLE. 669 00:22:27,875 --> 00:22:28,910 WE SEE THAT IN MANY OF THE 670 00:22:28,910 --> 00:22:30,245 STUDIES THAT ARE CURRENTLY 671 00:22:30,245 --> 00:22:32,213 INVOLVED AND WHAT WE NEED ARE 672 00:22:32,213 --> 00:22:34,482 POLICY EFFORTS TO ACCELERATE 673 00:22:34,482 --> 00:22:36,584 THAT IN MORE PLACES. 674 00:22:36,584 --> 00:22:40,088 THANK YOU VERY MUCH. 675 00:22:40,088 --> 00:22:41,956 >> THANK YOU SO MUCH, 676 00:22:41,956 --> 00:22:43,691 DR. BIBBINS-DOMINGO, FOR THAT 677 00:22:43,691 --> 00:22:44,659 GREAT PRESENTATION OVERVIEW OF 678 00:22:44,659 --> 00:22:46,761 THE NATIONAL ACADEMIES REPORT. 679 00:22:46,761 --> 00:22:50,698 NOW I'M GOING TO TURN IT OVER TO 680 00:22:50,698 --> 00:22:51,499 DR. FOUAD. 681 00:22:51,499 --> 00:22:55,103 DR. FOUAD, GO AHEAD. 682 00:22:55,103 --> 00:22:57,238 >> I'M GOING TO SHARE MY SCREEN 683 00:22:57,238 --> 00:23:00,842 ALSO, IF YOU CAN GIVE ME A 684 00:23:00,842 --> 00:23:10,985 MINUTE. 685 00:23:11,653 --> 00:23:15,423 CAN YOU SEE MY SCREEN? 686 00:23:15,423 --> 00:23:16,057 >> YES. 687 00:23:16,057 --> 00:23:17,158 >> OKAY, GREAT. 688 00:23:17,158 --> 00:23:21,296 SO THANK YOU, 689 00:23:21,296 --> 00:23:21,929 DR. BIBBINS -DOMINGO, THIS WAS A 690 00:23:21,929 --> 00:23:23,164 GREAT WORK AND I'M GLAD YOU 691 00:23:23,164 --> 00:23:24,699 FOCUSED ON POLICIES BECAUSE, YOU 692 00:23:24,699 --> 00:23:26,234 KNOW, TO MOVE THE NEEDLE 693 00:23:26,234 --> 00:23:31,706 PROBABLY THIS WAS NEEDED. 694 00:23:31,706 --> 00:23:33,574 SO I'M GOING TO PRESENT A STUDY 695 00:23:33,574 --> 00:23:37,412 THAT WE DID JUST ABOUT THE 696 00:23:37,412 --> 00:23:39,480 STRATEGY THAT IMPROVED PROBABLY 697 00:23:39,480 --> 00:23:42,216 THE INFRASTRUCTURE IN OUR HEALTH 698 00:23:42,216 --> 00:23:42,984 SYSTEMS. 699 00:23:42,984 --> 00:23:44,952 AS DR. DOMINGO SAID, IT'S NOT 700 00:23:44,952 --> 00:23:46,020 THAT PEOPLE DON'T WANT TO 701 00:23:46,020 --> 00:23:47,889 PARTICIPATE, BUT WE NEED TO HAVE 702 00:23:47,889 --> 00:23:49,324 THE STRATEGIES AND THE 703 00:23:49,324 --> 00:23:50,625 INFRASTRUCTURE TO DO THAT. 704 00:23:50,625 --> 00:23:53,261 AND I'M JUST GETTING TO CLINICAL 705 00:23:53,261 --> 00:23:55,797 TRIALS AS LIKE WE THINK ABOUT 706 00:23:55,797 --> 00:23:57,298 ALWAYS HEALTHCARE DELIVERY FOR 707 00:23:57,298 --> 00:24:01,569 HEALTH EQUITY, BUT ALSO BEING 708 00:24:01,569 --> 00:24:02,770 INCLUSIVE IN CLINICAL TRIALS 709 00:24:02,770 --> 00:24:07,575 REALLY MAY HELP US TO REACH ALSO 710 00:24:07,575 --> 00:24:09,977 IT'S A HEALTH EQUITY ISSUE. 711 00:24:09,977 --> 00:24:14,582 SO AGAIN, YOU KNOW, I KNOW THAT 712 00:24:14,582 --> 00:24:16,551 DR. DOMINGO TOUCHED ON THIS, BUT 713 00:24:16,551 --> 00:24:18,319 I WANTED ALSO TO TALK ABOUT IT 714 00:24:18,319 --> 00:24:21,923 IS REALLY IMPORTANT FOR US TO 715 00:24:21,923 --> 00:24:22,890 HAVE CLINICAL TRIALS BECAUSE 716 00:24:22,890 --> 00:24:26,060 THAT'S REALLY WHAT DRIVES OUR 717 00:24:26,060 --> 00:24:28,262 DISCOVERY, AND TO KNOW WHAT IS 718 00:24:28,262 --> 00:24:30,331 THE BEST CLINICAL CARE AND 719 00:24:30,331 --> 00:24:32,100 PATIENT CARE SHOULD BE. 720 00:24:32,100 --> 00:24:36,804 AND AGAIN, AS DR. DOMINGO 721 00:24:36,804 --> 00:24:38,406 MENTIONED, THIS IS JUST A FEW 722 00:24:38,406 --> 00:24:39,874 FROM THE LIST THAT SHE ALL 723 00:24:39,874 --> 00:24:40,508 MENTIONED, IS THAT IN THE 724 00:24:40,508 --> 00:24:42,009 ABSENCE OF DIVERSE POPULATIONS, 725 00:24:42,009 --> 00:24:44,779 WE CANNOT GENERALIZE OUR STUDY. 726 00:24:44,779 --> 00:24:48,116 ALSO WE HEARD YESTERDAY AND 727 00:24:48,116 --> 00:24:49,884 TODAY THAT EVEN BEING IN A 728 00:24:49,884 --> 00:24:51,285 CLINICAL TRIAL, ESPECIALLY 729 00:24:51,285 --> 00:24:53,888 THERAPEUTIC TRIALS AND OTHERS, 730 00:24:53,888 --> 00:24:56,858 CAN GIVE OUR PATIENTS AN 731 00:24:56,858 --> 00:24:59,594 OPPORTUNITY FOR ADVANCED CARE, 732 00:24:59,594 --> 00:25:01,829 AND ALSO WITHOUT HAVING CLINICAL 733 00:25:01,829 --> 00:25:03,865 TRIALS, HEALTH DISPARITIES AS WE 734 00:25:03,865 --> 00:25:05,733 HEARD TOO, CAN BE REALLY 735 00:25:05,733 --> 00:25:09,237 INCREASED AND WIDENED. 736 00:25:09,237 --> 00:25:11,305 SO WE KNOW THAT THERE IS AN 737 00:25:11,305 --> 00:25:13,174 INEQUITY IN OUR HEALTHCARE 738 00:25:13,174 --> 00:25:15,977 SYSTEM, AND THIS HAS BEEN 739 00:25:15,977 --> 00:25:17,779 PROVEN, AND THERE IS A LOT OF 740 00:25:17,779 --> 00:25:20,715 BURDEN OF DISEASE AND DEATH IN 741 00:25:20,715 --> 00:25:23,117 SOME POPULATIONS COMPARED TO -- 742 00:25:23,117 --> 00:25:24,986 OR MAJORITY OF POPULATIONS IN 743 00:25:24,986 --> 00:25:25,987 THE UNITED STATES. 744 00:25:25,987 --> 00:25:28,389 I WORK HERE IN ALABAMA, AND THIS 745 00:25:28,389 --> 00:25:32,427 IS -- I'M IN THE SOUTH, AND OUR 746 00:25:32,427 --> 00:25:33,194 INSTITUTION IS IN THE SOUTH, AND 747 00:25:33,194 --> 00:25:38,766 YOU CAN SEE THAT IF WE LOOK INTO 748 00:25:38,766 --> 00:25:40,635 THE RATE AND THE BURDEN OF 749 00:25:40,635 --> 00:25:41,502 DISEASE, OF MAJOR CHRONIC 750 00:25:41,502 --> 00:25:43,037 DISEASE, AND THERE ARE OTHERS 751 00:25:43,037 --> 00:25:45,673 BASED ON CDC MAPS, OBESITY, 752 00:25:45,673 --> 00:25:47,975 DIABETES, HEART DISEASE AND 753 00:25:47,975 --> 00:25:49,143 CANCER, REALLY THERE IS A HIGH 754 00:25:49,143 --> 00:25:51,245 BURDEN IN THE SOUTHEAST. 755 00:25:51,245 --> 00:25:52,880 BUT IF YOU JUST LAYERED THIS ON 756 00:25:52,880 --> 00:25:54,749 SOME OF WHAT WE CALLED SOCIAL 757 00:25:54,749 --> 00:25:58,986 DETERMINANTS OF HEALTH, LIKE 758 00:25:58,986 --> 00:26:00,087 EDUCATION, UNEMPLOYMENT, 759 00:26:00,087 --> 00:26:02,490 POVERTY, YOU CAN SEE THAT THERE 760 00:26:02,490 --> 00:26:04,459 IS SOME ASSOCIATION HERE. 761 00:26:04,459 --> 00:26:08,196 BUT ALSO WE HAVE MORE THAN 50% 762 00:26:08,196 --> 00:26:10,598 OF OUR AFRICAN AMERICAN 763 00:26:10,598 --> 00:26:12,233 POPULATION AND A GROWING 764 00:26:12,233 --> 00:26:15,203 HISPANIC POPULATION, THAT THEY 765 00:26:15,203 --> 00:26:17,171 ARE LOW INCOME AND LIVE IN THE 766 00:26:17,171 --> 00:26:20,675 SOUTH AND RURAL COMMUNITIES. 767 00:26:20,675 --> 00:26:21,976 SO WHAT CAUSES HEALTH 768 00:26:21,976 --> 00:26:23,811 DISPARITIES, WHAT FACTORS? 769 00:26:23,811 --> 00:26:25,146 I'M PROBABLY PREACHING TO THE 770 00:26:25,146 --> 00:26:26,347 CHOIR, BUT THESE ARE ALSO VERY 771 00:26:26,347 --> 00:26:27,982 IMPORTANT WHEN WE THINK ABOUT 772 00:26:27,982 --> 00:26:30,785 CLINICAL TRIALS, BECAUSE LACK OF 773 00:26:30,785 --> 00:26:34,021 HEALTH INSURANCE, HEALTHCARE 774 00:26:34,021 --> 00:26:35,323 UTILIZATION, IF WE'RE TRYING TO 775 00:26:35,323 --> 00:26:36,290 ATTRACT PEOPLE THAT THEY DON'T 776 00:26:36,290 --> 00:26:38,059 USE OUR HEALTHCARE SYSTEMS TO 777 00:26:38,059 --> 00:26:41,128 INCLUDE THEM IN TRIALS, THIS 778 00:26:41,128 --> 00:26:42,430 WOULD BE NEEDING SOME MORE 779 00:26:42,430 --> 00:26:43,898 STRATEGIES TO ENGAGE PEOPLE IN 780 00:26:43,898 --> 00:26:45,366 THE HEALTHCARE SYSTEM. 781 00:26:45,366 --> 00:26:48,336 QUALITY OF CARE, BECAUSE WE KNOW 782 00:26:48,336 --> 00:26:50,104 TO OFFER CLINICAL TRIALS, YOU 783 00:26:50,104 --> 00:26:52,707 REALLY HAVE TO HAVE VERY HIGH 784 00:26:52,707 --> 00:26:54,008 QUALITY OF CARE. 785 00:26:54,008 --> 00:26:55,977 PHYSICIAN BIAS, THAT THEY MAY 786 00:26:55,977 --> 00:26:57,512 NOT OFFER A GOOD QUALITY CARE 787 00:26:57,512 --> 00:27:00,014 BUT ALSO THEY MAY NOT OFFER 788 00:27:00,014 --> 00:27:00,581 CLINICAL TRIALS. 789 00:27:00,581 --> 00:27:03,851 THERE IS LACK OF CULTURAL 790 00:27:03,851 --> 00:27:05,486 COMPETENCY, AND PERCEIVED 791 00:27:05,486 --> 00:27:06,721 DISCRIMINATION, AND I'M GLAD TO 792 00:27:06,721 --> 00:27:09,457 SEE WHAT DR. DOMINGO SAID, THAT 793 00:27:09,457 --> 00:27:12,827 OUR INVESTIGATORS AND PEOPLE 794 00:27:12,827 --> 00:27:14,695 INVOLVED IN CLINICAL TRIALS NEED 795 00:27:14,695 --> 00:27:18,866 ALSO TO BE TRAINED IN CULTURAL 796 00:27:18,866 --> 00:27:20,568 COMPETENCY AND DIVERSITY AND 797 00:27:20,568 --> 00:27:21,369 INCLUSION. 798 00:27:21,369 --> 00:27:23,938 AND THEN PATIENT DECISION-MAKING 799 00:27:23,938 --> 00:27:25,206 SKILLS AND HEALTH LITERACY, 800 00:27:25,206 --> 00:27:28,175 THESE ARE VERY IMPORTANT FOR 801 00:27:28,175 --> 00:27:29,210 QUALITY OF CARE AS WELL AS 802 00:27:29,210 --> 00:27:31,879 CLINICAL TRIALS. 803 00:27:31,879 --> 00:27:33,080 I'M NOT GOING TO GO THROUGH THE 804 00:27:33,080 --> 00:27:34,181 SLIDE, BUT I JUST WANT TO SHOW 805 00:27:34,181 --> 00:27:38,119 YOU BASED ON THE WORLD HEALTH 806 00:27:38,119 --> 00:27:39,554 ORGANIZATION, HEALTH DISPARITY 807 00:27:39,554 --> 00:27:40,087 IS VERY COMPLEX. 808 00:27:40,087 --> 00:27:44,992 IT HAS MANY, MANY FACTORS HERE 809 00:27:44,992 --> 00:27:46,160 THAT INVOLVE A DISTRIBUTION OF 810 00:27:46,160 --> 00:27:47,628 HEALTH AND WELL-BEING, SO WHEN 811 00:27:47,628 --> 00:27:50,031 WE THINK ABOUT HOW WE'RE GOING 812 00:27:50,031 --> 00:27:51,899 TO ENGAGE OUR DIVERSE AND LOW 813 00:27:51,899 --> 00:27:55,836 INCOME POPULATIONS AND MINORITY 814 00:27:55,836 --> 00:27:56,437 POPULATIONS' CLINICAL TRIALS, 815 00:27:56,437 --> 00:27:57,805 THERE ARE A LOT OF FACTORS THAT 816 00:27:57,805 --> 00:27:58,906 IMPACT THAT TO DEVELOP OUR 817 00:27:58,906 --> 00:28:01,976 STRATEGIES. 818 00:28:01,976 --> 00:28:03,611 SO I MENTIONED SOCIAL 819 00:28:03,611 --> 00:28:04,579 DETERMINANTS OF HEALTH AND 820 00:28:04,579 --> 00:28:05,780 THAT'S VERY IMPORTANT IN 821 00:28:05,780 --> 00:28:07,248 HEALTHCARE UTILIZATION INCLUDING 822 00:28:07,248 --> 00:28:08,082 CLINICAL TRIALS. 823 00:28:08,082 --> 00:28:10,284 AND WE CAN SEE HERE THAT SOCIAL 824 00:28:10,284 --> 00:28:14,755 DETERMINANTS REALLY IMPACT 825 00:28:14,755 --> 00:28:17,058 HEALTH, PREDICT HEALTH STATUS, 826 00:28:17,058 --> 00:28:20,995 DETERMINES THE INFLUENCE IN 827 00:28:20,995 --> 00:28:22,196 HEALTH BEHAVIOR AND 828 00:28:22,196 --> 00:28:23,164 DECISION-MAKING, AND ALSO IT 829 00:28:23,164 --> 00:28:25,132 INTERACTS WITH HEALTH OUTCOMES. 830 00:28:25,132 --> 00:28:29,503 SO WHAT ARE THOSE AND THESE ARE 831 00:28:29,503 --> 00:28:36,477 THINGS THAT INVESTIGATORS -- 832 00:28:36,477 --> 00:28:37,745 CLINICAL TRIALISTS USUALLY DON'T 833 00:28:37,745 --> 00:28:39,380 THINK ABOUT, IS THAT PATIENT 834 00:28:39,380 --> 00:28:43,851 COMING IN THAT HAS SOME 835 00:28:43,851 --> 00:28:44,852 CHALLENGES WITH SOME WHAT WE 836 00:28:44,852 --> 00:28:46,921 CALL SOCIAL DETERMINANTS LIKE 837 00:28:46,921 --> 00:28:50,858 EDUCATION, INCOME, EMPLOYMENT, 838 00:28:50,858 --> 00:28:55,663 HOUSING, SOCIAL RELATIONSHIP, 839 00:28:55,663 --> 00:28:56,697 PERCEIVED DISCRIMINATION, WORK 840 00:28:56,697 --> 00:28:56,998 ENVIRONMENT. 841 00:28:56,998 --> 00:28:58,165 ALL THESE THINGS, WE DON'T THINK 842 00:28:58,165 --> 00:29:00,701 ABOUT THEM WHEN WE DEVELOP 843 00:29:00,701 --> 00:29:02,670 STRATEGIES TO ENHANCE OUR 844 00:29:02,670 --> 00:29:04,405 ENROLLMENT AND BE INCLUSIVE OF 845 00:29:04,405 --> 00:29:09,877 ALL POPULATIONS. 846 00:29:09,877 --> 00:29:11,379 SO WE TOUCHED ON THAT, THERE IS 847 00:29:11,379 --> 00:29:13,814 A LOT OF PERCENTAGE OUT THERE OF 848 00:29:13,814 --> 00:29:15,683 WHAT ARE THE PERCENTAGE OF 849 00:29:15,683 --> 00:29:16,984 MINORITIES AND DIVERSE 850 00:29:16,984 --> 00:29:18,419 POPULATIONS IN CLINICAL TRIALS, 851 00:29:18,419 --> 00:29:21,589 BUT IT'S STILL LOW. 852 00:29:21,589 --> 00:29:24,291 SO WHAT ALL WHAT I JUST VERY 853 00:29:24,291 --> 00:29:26,093 BRIEFLY TOUCHED ON AS SOCIAL 854 00:29:26,093 --> 00:29:28,896 DETERMINANTS OF HEALTH AND OTHER 855 00:29:28,896 --> 00:29:34,702 CHALLENGES FOR OUR PATIENTS, 856 00:29:34,702 --> 00:29:36,671 THAT IT'S A CHALLENGE TO RECRUIT 857 00:29:36,671 --> 00:29:38,305 DIVERSE POPULATIONS AND MINORITY 858 00:29:38,305 --> 00:29:39,974 PATIENTS TO OUR CLINICAL TRIALS, 859 00:29:39,974 --> 00:29:43,344 BUT WE ALSO DON'T THINK ABOUT 860 00:29:43,344 --> 00:29:45,146 IT'S ALSO A GREATER CHALLENGE TO 861 00:29:45,146 --> 00:29:46,313 RETAIN THEM. 862 00:29:46,313 --> 00:29:47,415 AND WE HAVE TO THINK ABOUT HOW 863 00:29:47,415 --> 00:29:48,916 CAN WE RECRUIT TO RETAIN? 864 00:29:48,916 --> 00:29:50,251 WE CAN'T JUST THINK ABOUT 865 00:29:50,251 --> 00:29:50,885 RECRUITMENT. 866 00:29:50,885 --> 00:29:55,723 BUT ALSO WE NEED TO THINK ABOUT 867 00:29:55,723 --> 00:29:57,324 STRATEGIES THAT HAVE INFORMED 868 00:29:57,324 --> 00:30:00,628 PARTICIPANTS THAT ALSO CAN BE 869 00:30:00,628 --> 00:30:01,829 RETAINED. 870 00:30:01,829 --> 00:30:03,931 SO I'M SURE WE ALL KNOW FROM THE 871 00:30:03,931 --> 00:30:07,535 LITERATURES THERE IS A LOT OF 872 00:30:07,535 --> 00:30:10,371 BARRIERS THAT ARE LISTED IN ALL 873 00:30:10,371 --> 00:30:11,238 OF OUR LITERATURE. 874 00:30:11,238 --> 00:30:12,673 I'VE BEEN WORKING IN THIS AREA 875 00:30:12,673 --> 00:30:14,642 FOR PROBABLY TWO DECADES, AND 876 00:30:14,642 --> 00:30:16,077 THEY HAVEN'T CHANGED, YOU KNOW, 877 00:30:16,077 --> 00:30:18,779 LIKE WE HAVE BARRIERS RELATED TO 878 00:30:18,779 --> 00:30:22,616 OUR COMMUNITIES, TO OUR CARE 879 00:30:22,616 --> 00:30:25,686 PROVIDERS AND ALSO OUR OWN 880 00:30:25,686 --> 00:30:26,220 RESEARCH DESIGNS. 881 00:30:26,220 --> 00:30:27,321 AND WE ALL KNOW ABOUT THESE 882 00:30:27,321 --> 00:30:28,422 THINGS THAT ARE OUT THERE THAT 883 00:30:28,422 --> 00:30:32,259 WE NEED TO DEVELOP STRATEGIES TO 884 00:30:32,259 --> 00:30:34,528 ADDRESS FIELD, THE MISTRUST, 885 00:30:34,528 --> 00:30:35,863 TRUST, WE ALL TALK ABOUT 886 00:30:35,863 --> 00:30:37,832 TRUSTING VOICES AND TRUST, HOW 887 00:30:37,832 --> 00:30:42,303 WE CAN BUILD THAT. 888 00:30:42,303 --> 00:30:44,939 LIKE IF A PATIENT HAS ALL THESE 889 00:30:44,939 --> 00:30:46,807 PRIORITIES IN THEIR LIFE AND 890 00:30:46,807 --> 00:30:49,510 SOCIAL DETERMINANTS, THEN HEALTH 891 00:30:49,510 --> 00:30:51,378 PRIORITIES ARE GOING TO BE 892 00:30:51,378 --> 00:30:53,881 DIFFERENT, DO I GO FOR CARE OR 893 00:30:53,881 --> 00:30:55,416 GO FOR PARTICIPATING IN CLINICAL 894 00:30:55,416 --> 00:30:56,083 TRIAL? 895 00:30:56,083 --> 00:30:57,618 NEGATIVE EXPERIENCES, WE ALL 896 00:30:57,618 --> 00:30:58,586 KNOW UNFORTUNATELY ALL THE 897 00:30:58,586 --> 00:31:00,020 NEGATIVE EXPERIENCES WE HAD 898 00:31:00,020 --> 00:31:03,858 REGARDING RESEARCH, AND IT STILL 899 00:31:03,858 --> 00:31:06,160 EXISTS. 900 00:31:06,160 --> 00:31:08,229 DIFFERENCES IN HEALTH BELIEF AND 901 00:31:08,229 --> 00:31:09,096 OTHER ECONOMIC BARRIERS. 902 00:31:09,096 --> 00:31:10,297 NOW FOR HEALTHCARE PROVIDERS 903 00:31:10,297 --> 00:31:11,966 THAT THEY ARE REFERRING PATIENTS 904 00:31:11,966 --> 00:31:18,606 TO US, THAT THEY MAY NOT BE PART 905 00:31:18,606 --> 00:31:19,807 OF THE CLINICAL TRIAL TEAMS, AND 906 00:31:19,807 --> 00:31:22,343 I EXPERIENCED THIS MYSELF WHEN I 907 00:31:22,343 --> 00:31:23,644 REACHED OUT TO MY COLLEAGUES TO 908 00:31:23,644 --> 00:31:25,179 REFER PATIENTS TO CLINICAL 909 00:31:25,179 --> 00:31:25,846 TRIAL. 910 00:31:25,846 --> 00:31:27,014 SOMETIMES THOSE PHYSICIANS FEEL 911 00:31:27,014 --> 00:31:28,883 LIKE IF THEY GIVE YOU THEIR 912 00:31:28,883 --> 00:31:30,985 PATIENTS, THEY'RE GOING TO LOSE 913 00:31:30,985 --> 00:31:32,720 THAT AUTHORITY AND THAT 914 00:31:32,720 --> 00:31:37,992 COORDINATION OF THEIR CARE. 915 00:31:37,992 --> 00:31:39,627 SO IF WE DON'T GIVE THEM 916 00:31:39,627 --> 00:31:40,795 FEEDBACK ON WHAT HAPPENED TO 917 00:31:40,795 --> 00:31:42,163 THEIR PATIENTS WHEN THEY COME TO 918 00:31:42,163 --> 00:31:42,930 OUR CLINICAL TRIALS, THEY'RE 919 00:31:42,930 --> 00:31:44,031 GOING TO FEEL LOSS OF AUTHORITY 920 00:31:44,031 --> 00:31:45,299 AND THEY WILL NOT REFER PATIENTS 921 00:31:45,299 --> 00:31:47,935 TO YOU. 922 00:31:47,935 --> 00:31:49,236 LEGALITY IF SOMETHING HAPPEN 923 00:31:49,236 --> 00:31:50,538 TODAY THIS PATIENT THAT WE PUT 924 00:31:50,538 --> 00:31:51,872 THEM ON A NEW DRUG, THEY'RE 925 00:31:51,872 --> 00:31:55,142 CONCERNED BECAUSE THEY ARE 926 00:31:55,142 --> 00:31:56,043 RESPONSIBLE. 927 00:31:56,043 --> 00:31:57,378 THERE ARE A LOT OF THEM THAT 928 00:31:57,378 --> 00:32:00,848 THEY DON'T DO CLINICAL TRIALS SO 929 00:32:00,848 --> 00:32:02,116 THEY'RE UNCERTAIN AND WE DON'T 930 00:32:02,116 --> 00:32:03,584 TAKE THE TIME TO EDUCATE THESE 931 00:32:03,584 --> 00:32:04,585 PHYSICIANS ABOUT WHAT THIS 932 00:32:04,585 --> 00:32:06,020 CLINICAL TRIAL IS ABOUT AND WHY 933 00:32:06,020 --> 00:32:07,321 WE'RE DOING IT. 934 00:32:07,321 --> 00:32:08,622 AGAIN, THE MENTALITY OF 935 00:32:08,622 --> 00:32:11,692 CLINICIAN VERSUS SCIENTIST, 936 00:32:11,692 --> 00:32:14,195 THOSE ARE -- WANT TO MAKE SURE 937 00:32:14,195 --> 00:32:15,129 EVERY PATIENT IS GETTING THE 938 00:32:15,129 --> 00:32:16,497 DRUG OR THE INTERVENTION THAT IS 939 00:32:16,497 --> 00:32:17,898 NEEDED, AND THE SCIENTISTS WANT 940 00:32:17,898 --> 00:32:20,668 TO DO AN EXPERIMENT, SO THE 941 00:32:20,668 --> 00:32:23,170 CULTURE OF PHYSICIANS CLINICIANS 942 00:32:23,170 --> 00:32:24,371 VERSUS PHYSICIAN SCIENTISTS ARE 943 00:32:24,371 --> 00:32:25,673 A LITTLE BIT DIFFERENT. 944 00:32:25,673 --> 00:32:27,107 AND THEN ALSO LACK OF TIME. 945 00:32:27,107 --> 00:32:30,377 THEY DON'T HAVE TIME TO OFFER A 946 00:32:30,377 --> 00:32:31,579 PATIENT A CLINICAL TRIAL AND 947 00:32:31,579 --> 00:32:32,813 ASSESS ALL THESE SOCIAL 948 00:32:32,813 --> 00:32:34,548 DETERMINANTS AND TALK TO THEM 949 00:32:34,548 --> 00:32:38,686 ABOUT BEING IN A TRIAL. 950 00:32:38,686 --> 00:32:40,988 SO AGAIN, THE LAST THING IS 951 00:32:40,988 --> 00:32:42,756 RANDOMIZATION AND BARRIERS AND 952 00:32:42,756 --> 00:32:43,757 STUDY DESIGN. 953 00:32:43,757 --> 00:32:45,926 WE DEVELOP ALL THESE COMPLEX 954 00:32:45,926 --> 00:32:47,661 LEGAL DOCUMENTS AS CONSENT FORMS 955 00:32:47,661 --> 00:32:49,663 AND WE DON'T THINK ABOUT HOW CAN 956 00:32:49,663 --> 00:32:51,866 WE SIMPLIFY THIS. 957 00:32:51,866 --> 00:32:55,236 AND WORK WITH IRBs TO CHANGE 958 00:32:55,236 --> 00:32:56,770 SOME OF THIS WHICH IS VERY HARD, 959 00:32:56,770 --> 00:33:01,141 HOW WE CAN -- IT'S NOT ONE SIZE 960 00:33:01,141 --> 00:33:02,576 FITS ALL OF HOW WE DEVELOP 961 00:33:02,576 --> 00:33:03,777 CONSENT FORMS TO EVERY PERSON. 962 00:33:03,777 --> 00:33:06,413 PEOPLE DON'T UNDERSTAND 963 00:33:06,413 --> 00:33:06,947 RANDOMIZATION. 964 00:33:06,947 --> 00:33:09,917 WE THINK THAT PATIENTS THAT HAVE 965 00:33:09,917 --> 00:33:11,018 ALL THESE ISSUES IN THEIR LIFE 966 00:33:11,018 --> 00:33:13,087 AND TAKING CARE OF, I DON'T KNOW 967 00:33:13,087 --> 00:33:15,289 IF I'M GOING TO HAVE MY WORK 968 00:33:15,289 --> 00:33:17,258 TOMORROW, IF I GET OUT OF WORK 969 00:33:17,258 --> 00:33:18,559 FOR FOUR HOURS, I'M NOT GETTING 970 00:33:18,559 --> 00:33:19,660 PAID FOR THAT. 971 00:33:19,660 --> 00:33:22,263 I'M TAKING CARE OF MY GRANDKIDS. 972 00:33:22,263 --> 00:33:23,898 ALL THIS, WE THINK THAT THE 973 00:33:23,898 --> 00:33:25,733 PATIENT HAS ALL THE TIME FOR US 974 00:33:25,733 --> 00:33:28,068 TO DO THE TRIAL, BUT IT'S A BIG 975 00:33:28,068 --> 00:33:29,169 TIME COMMITMENT. 976 00:33:29,169 --> 00:33:31,238 AND AGAIN, AS I MENTIONED, 977 00:33:31,238 --> 00:33:33,107 SOMETIMES OUR STUDIES ARE VERY 978 00:33:33,107 --> 00:33:36,844 COMPLEX. 979 00:33:36,844 --> 00:33:38,679 SO COMING TO THAT, THEN WE 980 00:33:38,679 --> 00:33:41,882 RECRUIT THE PATIENTS BUT THEN WE 981 00:33:41,882 --> 00:33:43,417 CARE ABOUT RETAINING THEM. 982 00:33:43,417 --> 00:33:47,688 AND MAYBE THAT'S SOMETIMES THE 983 00:33:47,688 --> 00:33:52,726 BIAS THAT SOME PHYSICIANS DON'T 984 00:33:52,726 --> 00:33:54,361 OFFER CLINICAL TRIALS TO 985 00:33:54,361 --> 00:33:55,796 UNDERRESOURCED OR DIVERSE 986 00:33:55,796 --> 00:33:56,664 PATIENTS, BECAUSE THEY THINK 987 00:33:56,664 --> 00:33:57,531 THEY'RE NOT GOING TO BE ABLE TO 988 00:33:57,531 --> 00:33:58,966 STAY IN THE STUDY AND THEY CAN'T 989 00:33:58,966 --> 00:34:00,367 REPLACE THEM. 990 00:34:00,367 --> 00:34:01,669 SO SOME PATIENTS JUST LOSE 991 00:34:01,669 --> 00:34:04,738 INTEREST IF WE DON'T KEEP 992 00:34:04,738 --> 00:34:07,041 ENGAGING THEM, NOT ASSIGNED TO 993 00:34:07,041 --> 00:34:08,909 THE TREATMENT THEY WANT, MAYBE 994 00:34:08,909 --> 00:34:10,878 THEY HAVE -- THEY'RE OLDER AGE. 995 00:34:10,878 --> 00:34:13,047 THIS IS FROM THE LITERATURE. 996 00:34:13,047 --> 00:34:14,682 LOWER EDUCATION, ALL THE SOCIAL 997 00:34:14,682 --> 00:34:16,016 DETERMINANTS OF HEALTH THAT I 998 00:34:16,016 --> 00:34:18,986 TALKED ABOUT THAT CAN BE PART OF 999 00:34:18,986 --> 00:34:20,054 WE CAN'T RETAIN OUR 1000 00:34:20,054 --> 00:34:21,288 PARTICIPANTS. 1001 00:34:21,288 --> 00:34:24,558 SO TO DO THIS, WE HAVE A STUDY 1002 00:34:24,558 --> 00:34:29,964 THFUNDED BY NIMHD, THE NATIONAL 1003 00:34:29,964 --> 00:34:31,198 INSTITUTE OF MINORITY HEALTH AND 1004 00:34:31,198 --> 00:34:33,067 HEALTH DISPARITIES, TO FIND A 1005 00:34:33,067 --> 00:34:35,269 WAY TO ENHANCE MINORITY 1006 00:34:35,269 --> 00:34:37,571 PARTICIPATION IN CLINICAL TRIAL. 1007 00:34:37,571 --> 00:34:40,541 THE REASON WE DID THIS TRIAL 1008 00:34:40,541 --> 00:34:43,377 WITH OTHER SITES IS BECAUSE OUR 1009 00:34:43,377 --> 00:34:51,785 DATA AND OUR UAB CANCER CENTER 1010 00:34:51,785 --> 00:34:53,554 SHOWED OUR CATCHMENT AREA AT THE 1011 00:34:53,554 --> 00:34:55,622 TIME HAD 23.2% OF OUR CANCER 1012 00:34:55,622 --> 00:34:56,457 PATIENTS WERE AFRICAN AMERICAN 1013 00:34:56,457 --> 00:34:59,226 BUT WE WERE ONLY ABLE TO ENROLL 1014 00:34:59,226 --> 00:35:02,629 11% IN OUR CLINICAL TRIALS. 1015 00:35:02,629 --> 00:35:06,033 SO WE GOT WITH OTHER CANCER 1016 00:35:06,033 --> 00:35:08,869 CENTERS, AND WE APPLIED FOR THE 1017 00:35:08,869 --> 00:35:13,440 IMPACT STUDY, AND WE WANTED TO 1018 00:35:13,440 --> 00:35:18,379 NOT ONLY TEST A MODEL AT UAB BUT 1019 00:35:18,379 --> 00:35:20,080 ALSO TRY TO TEST THIS MODEL IN 1020 00:35:20,080 --> 00:35:22,016 FIVE CANCER CENTERS BECAUSE EACH 1021 00:35:22,016 --> 00:35:24,618 CANCER CENTER HAS DIFFERENT 1022 00:35:24,618 --> 00:35:28,322 POPULATIONS AND DIFFERENT 1023 00:35:28,322 --> 00:35:28,622 ENVIRONMENT. 1024 00:35:28,622 --> 00:35:33,260 SO WE DID ASSESSMENTS IN A PHASE 1025 00:35:33,260 --> 00:35:34,795 1 AND THEN PHASE 2, BUT BECAUSE 1026 00:35:34,795 --> 00:35:38,399 AS I MENTIONED WE KNEW THAT ALL 1027 00:35:38,399 --> 00:35:39,600 THESE BARRIERS THAT RELATED TO 1028 00:35:39,600 --> 00:35:42,569 THE COMMUNITY AND THE 1029 00:35:42,569 --> 00:35:43,871 INDIVIDUAL, WE WANTED TO DO AN 1030 00:35:43,871 --> 00:35:45,506 ASSESSMENT OF OUR OWN CANCER 1031 00:35:45,506 --> 00:35:49,009 CENTERS AND OUR OWN SYSTEMS. 1032 00:35:49,009 --> 00:35:50,511 WHAT ARE THE CHALLENGES AND THE 1033 00:35:50,511 --> 00:35:52,613 BARRIERS IN OUR SYSTEMS THAT 1034 00:35:52,613 --> 00:35:54,581 INCLUDE OUR CANCER CENTER 1035 00:35:54,581 --> 00:35:58,085 ENVIRONMENT, CANCER CENTER 1036 00:35:58,085 --> 00:35:59,987 LEADERS, INVESTIGATORS, SO WE 1037 00:35:59,987 --> 00:36:00,954 CAN KNOW WHAT TO DO. 1038 00:36:00,954 --> 00:36:02,356 BECAUSE WE LEARNED A LOT FROM 1039 00:36:02,356 --> 00:36:04,992 THE PATIENTS AND THE COMMUNITY 1040 00:36:04,992 --> 00:36:05,526 BEFORE. 1041 00:36:05,526 --> 00:36:07,428 AND WE DID A QUALITATIVE 1042 00:36:07,428 --> 00:36:09,696 ASSESSMENT AND QUANTITATIVE 1043 00:36:09,696 --> 00:36:09,997 ASSESSMENT. 1044 00:36:09,997 --> 00:36:13,667 SO FOR THE QUALITATIVE, WE 1045 00:36:13,667 --> 00:36:15,402 INTERVIEWED CANCER CENTER 1046 00:36:15,402 --> 00:36:16,737 DIRECTORS, INVESTIGATORS, NURSES 1047 00:36:16,737 --> 00:36:18,238 AND ADMINISTRATORS. 1048 00:36:18,238 --> 00:36:20,007 AND WHAT WE FOUND THAT THERE 1049 00:36:20,007 --> 00:36:24,144 WERE THREE THINGS THAT CAME UP 1050 00:36:24,144 --> 00:36:25,679 AS CHALLENGES IN OUR CANCER 1051 00:36:25,679 --> 00:36:26,980 CENTERS. 1052 00:36:26,980 --> 00:36:28,749 ONE, THE INVESTIGATOR SAID, YOU 1053 00:36:28,749 --> 00:36:30,284 KNOW, WE NEVER HAVE BEEN TRAINED 1054 00:36:30,284 --> 00:36:33,253 ON HOW TO APPROACH DIVERSE 1055 00:36:33,253 --> 00:36:33,754 POPULATIONS. 1056 00:36:33,754 --> 00:36:36,190 WE WERE JUST TOLD DO CLINICAL 1057 00:36:36,190 --> 00:36:36,657 TRIALS. 1058 00:36:36,657 --> 00:36:37,958 AND WE NEVER HAVE BEEN TRAINED 1059 00:36:37,958 --> 00:36:39,059 ON THAT. 1060 00:36:39,059 --> 00:36:41,562 AND THAT'S WHY WE DEVELOPED THAT 1061 00:36:41,562 --> 00:36:44,865 WEB PORTAL AS MODULES TO TRAIN 1062 00:36:44,865 --> 00:36:46,600 INVESTIGATORS AND RESEARCH 1063 00:36:46,600 --> 00:36:46,967 NURSE. 1064 00:36:46,967 --> 00:36:48,368 ALSO THE CANCER CENTERS, THEY 1065 00:36:48,368 --> 00:36:49,369 SAID WE DON'T KNOW WHAT'S 1066 00:36:49,369 --> 00:36:50,370 HAPPENING IN OUR CLINICAL 1067 00:36:50,370 --> 00:36:51,772 TRIALS, WE DON'T HAVE A DATA 1068 00:36:51,772 --> 00:36:55,042 SYSTEM THAT CAN GUIDE US TO SEE 1069 00:36:55,042 --> 00:36:57,077 WHERE ARE THE GAPS IN OUR 1070 00:36:57,077 --> 00:36:58,112 CLINICAL TRIALS. 1071 00:36:58,112 --> 00:37:02,516 BUT ANOTHER BIG COMPONENT WHICH 1072 00:37:02,516 --> 00:37:04,818 I'M GOING TO FOCUS ON, WHICH IS 1073 00:37:04,818 --> 00:37:06,220 THEY TOLD US, WE NEED SUPPORT, 1074 00:37:06,220 --> 00:37:08,088 WE DON'T HAVE TIME, WE'RE NOT 1075 00:37:08,088 --> 00:37:09,456 GOING TO BE TRAINED TO HAVE TO 1076 00:37:09,456 --> 00:37:10,657 ADDRESS ALL THESE SOCIAL 1077 00:37:10,657 --> 00:37:13,861 DETERMINANTS OF HEALTH WITHIN 1078 00:37:13,861 --> 00:37:17,097 OUR WALLS OF THE CANCER CENTERS 1079 00:37:17,097 --> 00:37:19,099 AND OUTSIDE OF THE COMMUNITY. 1080 00:37:19,099 --> 00:37:20,200 AND THAT IS WHERE WE CAME UP 1081 00:37:20,200 --> 00:37:21,702 WITH THE PATIENT NAVIGATION 1082 00:37:21,702 --> 00:37:24,438 MODEL FOR CLINICAL TRIAL. 1083 00:37:24,438 --> 00:37:26,406 AND SO OUR APPROACH WAS TO 1084 00:37:26,406 --> 00:37:28,475 DEVELOP SOMETHING INNOVATIVE 1085 00:37:28,475 --> 00:37:30,844 THAT WE BASED IT ON THE 1086 00:37:30,844 --> 00:37:32,980 COMMUNITY HEALTH ADVISORS MODEL 1087 00:37:32,980 --> 00:37:34,615 TO TRAIN THEM AS PATIENT 1088 00:37:34,615 --> 00:37:36,383 NAVIGATORS TO LINK THE PATIENT 1089 00:37:36,383 --> 00:37:38,118 WITH THE HEALTHCARE TEAM AND THE 1090 00:37:38,118 --> 00:37:39,786 COMMUNITY RESOURCES. 1091 00:37:39,786 --> 00:37:42,823 SO TO BE THAT BRIDGE. 1092 00:37:42,823 --> 00:37:44,992 AND AGAIN, IT'S BASED ON THE 1093 00:37:44,992 --> 00:37:46,460 COMMUNITY HEALTH ADVISORY MODEL 1094 00:37:46,460 --> 00:37:49,396 WHERE YOU HAVE A TRUSTED PERSON 1095 00:37:49,396 --> 00:37:50,831 THAT REPRESENTS THE COMMUNITY 1096 00:37:50,831 --> 00:37:54,101 MEMBERS TO IMPROVE THE HEALTH OR 1097 00:37:54,101 --> 00:37:55,602 THEY ARE NATURAL HELPERS IN 1098 00:37:55,602 --> 00:37:59,039 THEIR COMMUNITIES. 1099 00:37:59,039 --> 00:38:01,308 SO THOSE ADVISORS OR NAVIGATORS 1100 00:38:01,308 --> 00:38:04,645 CAN REACH THE POPULATION, SPREAD 1101 00:38:04,645 --> 00:38:08,448 EDUCATION INFORMATION, ENCOURAGE 1102 00:38:08,448 --> 00:38:10,317 HEALTHY BEHAVIOR, REDUCE 1103 00:38:10,317 --> 00:38:11,852 BARRIERS AND FACILITATE HEALTH 1104 00:38:11,852 --> 00:38:14,721 SERVICES. 1105 00:38:14,721 --> 00:38:16,223 SO THOSE NAVIGATORS, AFTER THEY 1106 00:38:16,223 --> 00:38:18,058 WERE TRAINED, THEY WERE PART OF 1107 00:38:18,058 --> 00:38:21,094 THE CLINICAL TRIAL TEAMS. 1108 00:38:21,094 --> 00:38:22,829 THEY LEARNED ABOUT THE RESEARCH 1109 00:38:22,829 --> 00:38:23,931 PROTOCOL, THEY LEARNED ABOUT 1110 00:38:23,931 --> 00:38:27,734 SAFETY ISSUES, THEY PROVIDED 1111 00:38:27,734 --> 00:38:29,937 FEEDBACK FROM PATIENTS TO THE 1112 00:38:29,937 --> 00:38:31,271 RESEARCH NURSES, AND THEY 1113 00:38:31,271 --> 00:38:32,239 OBTAINED REFERRAL FROM THE 1114 00:38:32,239 --> 00:38:33,607 RESEARCH NURSES AND THE 1115 00:38:33,607 --> 00:38:35,209 PHYSICIAN SCIENTISTS. 1116 00:38:35,209 --> 00:38:36,977 AND THEY WERE SPREAD IN OUR 1117 00:38:36,977 --> 00:38:41,014 ONCOLOGY CLINICS. 1118 00:38:41,014 --> 00:38:43,850 SO AGAIN, THAT'S WHERE THE 1119 00:38:43,850 --> 00:38:46,386 OBJECTIVES TO GET INFORMATION 1120 00:38:46,386 --> 00:38:48,855 ABOUT CLINICAL TRIALS TO OUR 1121 00:38:48,855 --> 00:38:49,990 AFRICAN AMERICAN PATIENTS, THEY 1122 00:38:49,990 --> 00:38:50,958 SUPPORTED THE PATIENTS TO ENROLL 1123 00:38:50,958 --> 00:38:53,527 IN THE TRIALS AND JUST ADDRESS 1124 00:38:53,527 --> 00:38:56,230 THEIR BARRIERS AND FIND 1125 00:38:56,230 --> 00:38:58,198 RESOURCES TO ADDRESS THESE 1126 00:38:58,198 --> 00:39:04,471 BARRIERS AND ALSO PROVIDE 1127 00:39:04,471 --> 00:39:05,439 EMOTIONAL SUPPORTS BECAUSE THOSE 1128 00:39:05,439 --> 00:39:06,540 ARE ALL CANCER PATIENTS. 1129 00:39:06,540 --> 00:39:10,811 SO WHAT WAS OUR IMPLEMENTATION? 1130 00:39:10,811 --> 00:39:13,947 AGAIN, THE NAVIGATORS PROVIDED 1131 00:39:13,947 --> 00:39:17,184 AND USED THE NCI BOOKLET TO 1132 00:39:17,184 --> 00:39:18,685 PROVIDE EDUCATION IN THE CLINICS 1133 00:39:18,685 --> 00:39:20,454 WHILE PATIENTS ARE WAITING FOR 1134 00:39:20,454 --> 00:39:21,221 THEIR APPOINTMENTS. 1135 00:39:21,221 --> 00:39:23,857 THEY WORKED WITH THE RESEARCH 1136 00:39:23,857 --> 00:39:24,858 NURSES TO IDENTIFY THOSE 1137 00:39:24,858 --> 00:39:28,262 PATIENTS THAT NEEDED TO BE -- 1138 00:39:28,262 --> 00:39:30,497 NEED SUPPORT TO ENROLL IN 1139 00:39:30,497 --> 00:39:32,733 CLINICAL TRIALS, AND THEY SAT 1140 00:39:32,733 --> 00:39:34,368 WITH EVERY PATIENT AND DID AN 1141 00:39:34,368 --> 00:39:36,803 ASSESSMENT TO SEE WHAT ARE THEIR 1142 00:39:36,803 --> 00:39:38,005 BARRIERS, WHY THEY CAN'T 1143 00:39:38,005 --> 00:39:38,972 PARTICIPATE IN THE CLINICAL 1144 00:39:38,972 --> 00:39:41,375 TRIAL SO THEY CAN DEVELOP A PLAN 1145 00:39:41,375 --> 00:39:44,811 FOR THESE PATIENTS. 1146 00:39:44,811 --> 00:39:47,314 SO AGAIN, THEY DID THE 1147 00:39:47,314 --> 00:39:48,615 EDUCATION, THEY DID COUNSELING 1148 00:39:48,615 --> 00:39:49,516 TO THE PATIENTS. 1149 00:39:49,516 --> 00:39:51,385 THEN THEY REVIEWED WITH THEM THE 1150 00:39:51,385 --> 00:39:54,087 TRIAL TREATMENT REGIMEN AND THE 1151 00:39:54,087 --> 00:39:58,692 TRIAL CALENDAR. 1152 00:39:58,692 --> 00:40:00,794 THEY IDENTIFY RESOURCES, A LOT 1153 00:40:00,794 --> 00:40:01,895 OF THOSE PATIENTS CAME FROM 1154 00:40:01,895 --> 00:40:03,297 RURAL COMMUNITIES OR THEY DIDN'T 1155 00:40:03,297 --> 00:40:04,398 HAVE TRANSPORTATION. 1156 00:40:04,398 --> 00:40:06,366 SOME OF THEM THAT THEY NEEDED 1157 00:40:06,366 --> 00:40:08,201 MAYBE RADIATION THERAPY, THEY 1158 00:40:08,201 --> 00:40:10,237 DON'T HAVE A PLACE TO STAY TO 1159 00:40:10,237 --> 00:40:14,374 GET THAT IN THE CANCER CENTER. 1160 00:40:14,374 --> 00:40:17,811 THEY IDENTIFIED LOW COST LODGING 1161 00:40:17,811 --> 00:40:20,414 LIKE THE AMERICAN CANCER SOCIETY 1162 00:40:20,414 --> 00:40:21,181 HOPE LODGE OR OTHERS. 1163 00:40:21,181 --> 00:40:23,383 THEY REFERRED THEM TO SOME 1164 00:40:23,383 --> 00:40:26,353 SERVICES, EVEN SERVICES FOR 1165 00:40:26,353 --> 00:40:28,622 COMMUNITY SERVICE AND RESOURCES. 1166 00:40:28,622 --> 00:40:29,790 AND THEY COUNSELED THE PATIENTS 1167 00:40:29,790 --> 00:40:31,158 TO BE PROACTIVE AND ASK 1168 00:40:31,158 --> 00:40:34,061 QUESTIONS. 1169 00:40:34,061 --> 00:40:35,562 AGAIN, THEY WERE THE BRIDGE, 1170 00:40:35,562 --> 00:40:38,165 THEY DID ORIENTATION TO 1171 00:40:38,165 --> 00:40:40,467 APPROPRIATE CLINICAL STAFF TO 1172 00:40:40,467 --> 00:40:41,802 UNDERSTAND, YOU KNOW, THE 1173 00:40:41,802 --> 00:40:45,305 CULTURE OF THE PATIENTS. 1174 00:40:45,305 --> 00:40:46,306 THEY WERE JUST PROBLEM SOLVING 1175 00:40:46,306 --> 00:40:48,241 AND HAVING A WAY TO GET THE 1176 00:40:48,241 --> 00:40:52,446 RESOURCES TO THE PATIENT. 1177 00:40:52,446 --> 00:40:53,780 THEY ALSO SERVED AS A PATIENT 1178 00:40:53,780 --> 00:40:55,415 ADVOCATE. 1179 00:40:55,415 --> 00:40:57,484 THEY WERE AN ADVOCATE FOR EVEN 1180 00:40:57,484 --> 00:40:58,585 CHARITY CARE OR WORKING WITH 1181 00:40:58,585 --> 00:40:59,486 INSURANCE OR WORKING WITH 1182 00:40:59,486 --> 00:41:01,988 ENTITIES TO HELP THE PATIENT 1183 00:41:01,988 --> 00:41:03,190 WITHIN OUR WALLS. 1184 00:41:03,190 --> 00:41:06,793 THEY PROVIDED SOCIAL SUPPORTS, 1185 00:41:06,793 --> 00:41:07,994 AND EVEN THEY VISITED THE 1186 00:41:07,994 --> 00:41:12,599 PATIENTS IN THE HOSPITAL WHEN -- 1187 00:41:12,599 --> 00:41:13,700 WHENEVER THEY BECAME INPATIENTS. 1188 00:41:13,700 --> 00:41:16,236 SO THESE ARE SOME OF THE CLINICS 1189 00:41:16,236 --> 00:41:19,172 AND SOME OF THE SERVICES THAT 1190 00:41:19,172 --> 00:41:23,877 THEY PROVIDED THAT YOU CAN SEE 1191 00:41:23,877 --> 00:41:26,313 THEY'RE MAINLY SERVICES 1192 00:41:26,313 --> 00:41:27,314 ADDRESSING SOCIAL DETERMINANTS 1193 00:41:27,314 --> 00:41:30,016 OF HEALTH. 1194 00:41:30,016 --> 00:41:31,651 YOU CAN SEE FROM OUR DATA THAT 1195 00:41:31,651 --> 00:41:36,390 AT THE BEGINNING, THE 1196 00:41:36,390 --> 00:41:37,491 ONCOLOGISTS, THEY DID NOT REFER 1197 00:41:37,491 --> 00:41:38,925 MANY PEOPLE TO US, BUT OVER 1198 00:41:38,925 --> 00:41:41,294 TIME, THEY STARTED TO REFER MORE 1199 00:41:41,294 --> 00:41:42,562 PATIENTS TO THE PATIENT 1200 00:41:42,562 --> 00:41:43,430 NAVIGATORS. 1201 00:41:43,430 --> 00:41:47,033 AND THEN YOU CAN SEE THAT FROM 1202 00:41:47,033 --> 00:41:48,135 THOSE THAT THEY WERE REFERRED TO 1203 00:41:48,135 --> 00:41:53,073 THE TRIALS, LIKE 70% OF THEM 1204 00:41:53,073 --> 00:41:55,242 WERE ENROLLED IN OUR STUDY. 1205 00:41:55,242 --> 00:41:58,111 SO THE MORE PATIENTS THEY 1206 00:41:58,111 --> 00:41:59,780 REFERRED, THE MORE PATIENTS 1207 00:41:59,780 --> 00:42:01,815 AGREED TO BE SUPPORTED BY THE 1208 00:42:01,815 --> 00:42:02,916 NAVIGATORS. 1209 00:42:02,916 --> 00:42:07,187 NOW, THIS IS SHOWING YOU THAT 1210 00:42:07,187 --> 00:42:08,722 FOR OUR ENROLLMENT OVER FIVE 1211 00:42:08,722 --> 00:42:11,024 YEARS PERIOD, WE STARTED AS I 1212 00:42:11,024 --> 00:42:12,659 MENTIONED IN THE CANCER CENTER 1213 00:42:12,659 --> 00:42:15,862 WITH 11% ENROLLMENT. 1214 00:42:15,862 --> 00:42:19,266 IT INCREASED TO OVER 22% WITH 1215 00:42:19,266 --> 00:42:19,833 NAVIGATOR SUPPORT. 1216 00:42:19,833 --> 00:42:21,334 BUT ALSO, THIS IS VERY IMPORTANT 1217 00:42:21,334 --> 00:42:25,172 TO SEE THAT THE NUMBER OF 1218 00:42:25,172 --> 00:42:26,440 OVERTIME IN THE CANCER CENTER 1219 00:42:26,440 --> 00:42:30,644 WHICH I CAN SAY IS A CULTURE 1220 00:42:30,644 --> 00:42:31,778 CHANGE OR SYSTEM CHANGE BECAUSE 1221 00:42:31,778 --> 00:42:33,947 WE HAD A LOT OF PUSHBACK FROM 1222 00:42:33,947 --> 00:42:35,715 OUR PHYSICIANS AT THE BEGINNING, 1223 00:42:35,715 --> 00:42:40,854 RELUCTANT TO OFFER TRIALS TO OLD 1224 00:42:40,854 --> 00:42:42,823 PATIENTS OR UNDERRESOURCED 1225 00:42:42,823 --> 00:42:44,291 PATIENTS OR MINORITY PATIENTS. 1226 00:42:44,291 --> 00:42:46,026 YOU KNOW, THE PERCEPTION WAS 1227 00:42:46,026 --> 00:42:46,927 REALLY THAT THOSE PATIENTS ARE 1228 00:42:46,927 --> 00:42:50,197 NOT GOING TO BE COMPLIANT. 1229 00:42:50,197 --> 00:42:52,933 SO IF YOU LOOK AT THE YELLOW 1230 00:42:52,933 --> 00:42:54,401 LINE TO SEE THAT WE INCREASED 1231 00:42:54,401 --> 00:42:55,535 THE NUMBER OF PATIENTS REFERRED 1232 00:42:55,535 --> 00:42:57,237 TO THE NAVIGATORS, YOU CAN SEE 1233 00:42:57,237 --> 00:43:00,774 THE GREEN LINE THAT THERE MORE 1234 00:43:00,774 --> 00:43:01,842 PATIENTS ACCEPTED CLINICAL 1235 00:43:01,842 --> 00:43:02,108 TRIALS. 1236 00:43:02,108 --> 00:43:05,078 THE RED LINE, LESS PATIENTS 1237 00:43:05,078 --> 00:43:06,046 DECLINED CLINICAL TRIALS, AND 1238 00:43:06,046 --> 00:43:08,682 THE PURPLE LINE, MORE PATIENTS 1239 00:43:08,682 --> 00:43:11,218 ENROLLED IN THE CLINICAL TRIAL. 1240 00:43:11,218 --> 00:43:13,320 BUT WHAT'S MOST IMPORTANT YOU 1241 00:43:13,320 --> 00:43:15,255 CAN SEE THAT THOSE AFRICAN 1242 00:43:15,255 --> 00:43:17,457 AMERICAN PATIENTS THAT THEY 1243 00:43:17,457 --> 00:43:21,394 CHOSE TO HAVE A PATIENT 1244 00:43:21,394 --> 00:43:25,232 NAVIGATOR SUPPORT HAD A MUCH 1245 00:43:25,232 --> 00:43:26,766 HIGHER COMPLETION OF THOSE 1246 00:43:26,766 --> 00:43:30,136 THERAPEUTIC TRIALS THAN THE 1247 00:43:30,136 --> 00:43:31,037 AFRICAN AMERICAN PATIENTS THAT 1248 00:43:31,037 --> 00:43:33,006 THEY REFUSED THE PATIENT 1249 00:43:33,006 --> 00:43:35,742 NAVIGATION SUPPORT AND THAT WAS 1250 00:43:35,742 --> 00:43:40,680 STATISTICALLY SIGNIFICANT. 1251 00:43:40,680 --> 00:43:45,051 SO WE PUBLISHED THIS INFORMATION 1252 00:43:45,051 --> 00:43:47,821 AND THE RESULTS OF OUR STUDY IN 1253 00:43:47,821 --> 00:43:49,022 THE JOURNAL OF ONCOLOGY 1254 00:43:49,022 --> 00:43:51,858 PRACTICE, AND WE WERE SO PROUD 1255 00:43:51,858 --> 00:43:53,560 THAT THE JOURNAL SELECTED THE 1256 00:43:53,560 --> 00:43:57,130 STUDY TO BE ON THEIR COVER -- OF 1257 00:43:57,130 --> 00:43:57,797 THE COVER OF THE JOURNAL. 1258 00:43:57,797 --> 00:43:59,866 YOU CAN SEE HERE THIS WOULD NOT 1259 00:43:59,866 --> 00:44:06,139 HAVE BEEN DONE WI WITHOUT THE 1260 00:44:06,139 --> 00:44:07,307 DEDICATED PATIENT NAVIGATORS. 1261 00:44:07,307 --> 00:44:08,208 THIS IS OUR TEAM. 1262 00:44:08,208 --> 00:44:09,643 AND WHAT IS REALLY IMPORTANT IS 1263 00:44:09,643 --> 00:44:10,844 THAT AFTER WE DID THIS TRIAL, 1264 00:44:10,844 --> 00:44:13,480 OUR HEALTH SYSTEM DECIDED TO 1265 00:44:13,480 --> 00:44:17,083 ADOPT THIS EVIDENCE-BASED 1266 00:44:17,083 --> 00:44:19,252 RESULTS AND NOW THE NAVIGATORS 1267 00:44:19,252 --> 00:44:20,921 BECAME PART OF THE CLINICAL 1268 00:44:20,921 --> 00:44:23,156 TRIAL TEAMS, THAT THEY'RE LINKED 1269 00:44:23,156 --> 00:44:24,791 TO EVERY CANCER PATIENT, AND 1270 00:44:24,791 --> 00:44:29,062 THEY ARE SUPPORTED -- THEY'RE 1271 00:44:29,062 --> 00:44:29,996 COMPENSATED AND BECAME EMPLOYED 1272 00:44:29,996 --> 00:44:32,265 BY THE CANCER CENTER. 1273 00:44:32,265 --> 00:44:36,069 BUT THERE ARE REAL CHALLENGES OF 1274 00:44:36,069 --> 00:44:38,171 DOING THIS, LIKE THE TRAINING 1275 00:44:38,171 --> 00:44:40,373 MODALITIES, YOU HAVE TO BE 1276 00:44:40,373 --> 00:44:41,341 ADAPTABLE AND CHANGE YOUR 1277 00:44:41,341 --> 00:44:42,442 TRAINING AND WE HAVE TO DO 1278 00:44:42,442 --> 00:44:43,577 TRAINING ALL THE TIME TO MAKE 1279 00:44:43,577 --> 00:44:44,344 CHANGES. 1280 00:44:44,344 --> 00:44:47,280 IT IS A RESOURCE INTENSIVE, 1281 00:44:47,280 --> 00:44:50,016 BECAUSE THOSE NAVIGATORS HAVE TO 1282 00:44:50,016 --> 00:44:56,489 BE LIKE THEY DIDN'T HAVE AN 8 TO 1283 00:44:56,489 --> 00:44:56,790 5 SCHEDULE. 1284 00:44:56,790 --> 00:44:57,824 THEY RESPONDED TO THE PATIENTS 1285 00:44:57,824 --> 00:44:59,125 AND THEIR FAMILIES ANY TIME THEY 1286 00:44:59,125 --> 00:45:00,560 NEEDED THEM. 1287 00:45:00,560 --> 00:45:03,430 AGAIN, SOME PATIENTS NEED A LOT 1288 00:45:03,430 --> 00:45:05,065 OF SUPPORT, SOME DON'T. 1289 00:45:05,065 --> 00:45:06,600 AND OUR PATIENT NAVIGATORS, YOU 1290 00:45:06,600 --> 00:45:08,134 KNOW, LIKE WE DIDN'T THINK ABOUT 1291 00:45:08,134 --> 00:45:10,670 THAT BUT THERE WAS SOME BURNOUT. 1292 00:45:10,670 --> 00:45:12,205 BECAUSE THE FAMILIES AND THE 1293 00:45:12,205 --> 00:45:14,507 PATIENTS BECAME SO ATTACHED TO 1294 00:45:14,507 --> 00:45:16,710 THEM THAT EVEN IF A PATIENT 1295 00:45:16,710 --> 00:45:17,911 PASSED AWAY, THIS FAMILY SAID, 1296 00:45:17,911 --> 00:45:19,879 YOU HAVE TO COME AND ATTEND THE 1297 00:45:19,879 --> 00:45:20,480 FUNERAL. 1298 00:45:20,480 --> 00:45:21,681 YOU HELPED MY MOTHER, YOU HELPED 1299 00:45:21,681 --> 00:45:23,283 MY BROTHER. 1300 00:45:23,283 --> 00:45:25,685 AND WE NEEDED TO DEVELOP 1301 00:45:25,685 --> 00:45:27,787 SOMETHING TO ADDRESS THE BURNOUT 1302 00:45:27,787 --> 00:45:31,958 OF THOSE PATIENT NAVIGATORS. 1303 00:45:31,958 --> 00:45:33,026 SO WHAT DID WE LEARN? 1304 00:45:33,026 --> 00:45:34,527 WE HAVE TO ENGAGE PHYSICIANS AND 1305 00:45:34,527 --> 00:45:35,562 NURSES IN THE PROCESS EARLY SO 1306 00:45:35,562 --> 00:45:36,463 THEY FEEL LIKE THEY'RE PART OF 1307 00:45:36,463 --> 00:45:39,499 THE SOLUTION. 1308 00:45:39,499 --> 00:45:41,034 WE IDENTIFIED SOME PHYSICIAN 1309 00:45:41,034 --> 00:45:41,835 CHAMPIONS BECAUSE AS I 1310 00:45:41,835 --> 00:45:43,837 MENTIONED, THERE WERE A LOT OF 1311 00:45:43,837 --> 00:45:45,438 OTHERS THAT THEY DIDN'T BELIEVE 1312 00:45:45,438 --> 00:45:50,910 THAT REALLY A MINORITY PATIENT 1313 00:45:50,910 --> 00:45:53,013 OR DIVERSE PATIENTS CAN REALLY 1314 00:45:53,013 --> 00:45:55,849 COMPLETE A TRIAL AND THEY WERE 1315 00:45:55,849 --> 00:45:57,250 SHY FROM OFFERING THIS TRIAL, SO 1316 00:45:57,250 --> 00:45:58,918 WE HAVE TO WORK WITH THOSE 1317 00:45:58,918 --> 00:46:00,787 PHYSICIAN CHAMPIONS SO THEY CAN 1318 00:46:00,787 --> 00:46:03,089 ADOPT AND CONVINCE THE OTHER 1319 00:46:03,089 --> 00:46:04,357 PHYSICIANS. 1320 00:46:04,357 --> 00:46:05,725 WE WERE -- OUR FLOW CHARTS, 1321 00:46:05,725 --> 00:46:09,029 WHERE THE NAVIGATORS WOULD START 1322 00:46:09,029 --> 00:46:10,764 AND WHERE TO END, WHO TO TALK 1323 00:46:10,764 --> 00:46:13,633 WITH AND WHERE THEY WERE HOUSED, 1324 00:46:13,633 --> 00:46:14,734 WE HAD TO MAKE CHANGES. 1325 00:46:14,734 --> 00:46:17,037 AND THEN WE HAD TO CLARIFY ROLES 1326 00:46:17,037 --> 00:46:17,771 AND RESPONSIBILITIES. 1327 00:46:17,771 --> 00:46:19,439 AT THE BEGINNING, THE SOCIAL 1328 00:46:19,439 --> 00:46:21,541 WORKERS DIDN'T KNOW HOW THE 1329 00:46:21,541 --> 00:46:22,776 NAVIGATORS ARE DIFFERENT THAN 1330 00:46:22,776 --> 00:46:26,046 THEIR ROLE, BUT AFTER THAT, THEY 1331 00:46:26,046 --> 00:46:28,048 BECAME REALLY WORKING TOGETHER 1332 00:46:28,048 --> 00:46:31,885 AS A TEAM. 1333 00:46:31,885 --> 00:46:33,086 WE'VE HAD TO LEVERAGE RESOURCES 1334 00:46:33,086 --> 00:46:34,954 WITH THE INSTITUTION, WORKING 1335 00:46:34,954 --> 00:46:36,823 WITH FOUNDATIONS AND OTHER 1336 00:46:36,823 --> 00:46:40,794 SUPPORT GROUPS TO HELP PROVIDE 1337 00:46:40,794 --> 00:46:43,730 VOUCHERS AND GUEST CARDS AND 1338 00:46:43,730 --> 00:46:46,132 LODGING. 1339 00:46:46,132 --> 00:46:48,001 AGAIN, WE HAD TO BE PATIENT 1340 00:46:48,001 --> 00:46:49,135 ADVOCATES AND SPEAK WITH THE 1341 00:46:49,135 --> 00:46:50,303 PATIENT. 1342 00:46:50,303 --> 00:46:53,239 EMPOWER THE PATIENTS TO ASK 1343 00:46:53,239 --> 00:46:54,541 QUESTIONS AND DEMAND THEIR 1344 00:46:54,541 --> 00:46:55,742 QUALITY CARE. 1345 00:46:55,742 --> 00:46:57,644 AND WE HAVE TO MEET WITH THE 1346 00:46:57,644 --> 00:47:01,581 NAVIGATORS ALL THE TIME TO HEAR 1347 00:47:01,581 --> 00:47:03,750 THEM AND GET FEEDBACK FROM THEM. 1348 00:47:03,750 --> 00:47:04,417 AND THANK YOU SO MUCH. 1349 00:47:04,417 --> 00:47:05,452 I THINK THE QUESTIONS ARE GOING 1350 00:47:05,452 --> 00:47:10,290 TO BE AT THE END. 1351 00:47:10,290 --> 00:47:10,790 >> GREAT. 1352 00:47:10,790 --> 00:47:12,659 THANK YOU SO MUCH, DR. FOUAD. 1353 00:47:12,659 --> 00:47:14,994 I'M NOW GOING TO TURN THIS OVER 1354 00:47:14,994 --> 00:47:16,396 TO DR. EGEDE. 1355 00:47:16,396 --> 00:47:17,530 PLEASE GO AHEAD. 1356 00:47:17,530 --> 00:47:18,498 >> OKAY. 1357 00:47:18,498 --> 00:47:20,934 THANK YOU, EVERYONE. 1358 00:47:20,934 --> 00:47:22,001 AND GOOD MORNING OR GOOD 1359 00:47:22,001 --> 00:47:23,103 AFTERNOON, DEPENDING ON WHERE 1360 00:47:23,103 --> 00:47:24,304 YOU ARE IN THIS PROCESS. 1361 00:47:24,304 --> 00:47:29,042 I'M GOING TO SHARE MY SLIDES. 1362 00:47:29,042 --> 00:47:33,213 AND MINE IS A LITTLE BIT 1363 00:47:33,213 --> 00:47:33,513 DIFFERENT. 1364 00:47:33,513 --> 00:47:34,714 I'LL GIVE YOU A LITTLE BIT ABOUT 1365 00:47:34,714 --> 00:47:35,815 MY BACKGROUND BECAUSE THAT WILL 1366 00:47:35,815 --> 00:47:37,050 HELP YOU UNDERSTAND SOME OF WHAT 1367 00:47:37,050 --> 00:47:38,351 I'M ACTUALLY GOING TO SHARE. 1368 00:47:38,351 --> 00:47:40,987 SO I'M A GENERAL INTERNIST BY 1369 00:47:40,987 --> 00:47:42,889 TRAINING, FELLOWSHIP IN HEALTH 1370 00:47:42,889 --> 00:47:44,257 SERVICES RESEARCH, I'VE DONE 1371 00:47:44,257 --> 00:47:48,528 CLINICAL TRIALS NOW SINCE 2006, 1372 00:47:48,528 --> 00:47:49,562 MULTIPLE NIH CLINICAL TRIALS, 1373 00:47:49,562 --> 00:47:51,531 BUT I ALSO TEACH STATISTICS. 1374 00:47:51,531 --> 00:47:52,932 SO NOT ONLY THINGS I'M DOING 1375 00:47:52,932 --> 00:47:55,201 HERE, THE CONVERGENCE OF ALL MY 1376 00:47:55,201 --> 00:47:59,439 DIFFERENT AREAS OF EXPERTISE. 1377 00:47:59,439 --> 00:48:02,375 SO SO MY TOPIC, AS I ALREADY 1378 00:48:02,375 --> 00:48:03,843 MENTIONED IS REALLY STUDY 1379 00:48:03,843 --> 00:48:05,478 EVALUATION WITH FOCUS ON 1380 00:48:05,478 --> 00:48:10,717 DIVERSITY AND INCLUSION METRICS. 1381 00:48:10,717 --> 00:48:13,019 SO A COUPLE OF THINGS THAT ARE 1382 00:48:13,019 --> 00:48:14,354 REALLY IMPORTANT AS YOU GET INTO 1383 00:48:14,354 --> 00:48:15,455 STUDIES, THIS IS SOMETHING THAT 1384 00:48:15,455 --> 00:48:17,657 HAPPENS A LOT, MOST OF US THAT 1385 00:48:17,657 --> 00:48:20,560 DO CLINICAL TRIALS, YOU ARE 1386 00:48:20,560 --> 00:48:21,761 OVERWHELMED WITH RECRUITMENT, 1387 00:48:21,761 --> 00:48:23,730 GETTING THINGS DONE, AND THEN 1388 00:48:23,730 --> 00:48:24,731 THE MOMENT YOU'RE DONE YOU'RE 1389 00:48:24,731 --> 00:48:26,266 THINKING ABOUT THE NEXT STUDY, 1390 00:48:26,266 --> 00:48:27,033 OR PUBLICATION. 1391 00:48:27,033 --> 00:48:28,134 I THINK IT'S REALLY IMPORTANT AT 1392 00:48:28,134 --> 00:48:30,103 THE END OF EVERY STUDY TO DO 1393 00:48:30,103 --> 00:48:31,437 SOME DEBRIEFING, SO THIS IS 1394 00:48:31,437 --> 00:48:32,438 SOMETHING WE'VE ACTUALLY 1395 00:48:32,438 --> 00:48:33,573 INCORPORATED INTO ALL OUR 1396 00:48:33,573 --> 00:48:36,109 CLINICAL TRIALS NOW. 1397 00:48:36,109 --> 00:48:39,112 AND WE HAVE IT IN SEQUENCE THAT 1398 00:48:39,112 --> 00:48:40,013 STARTS FROM WHEN THE STUDY 1399 00:48:40,013 --> 00:48:40,980 STARTS ALL THE WAY TO THE END OF 1400 00:48:40,980 --> 00:48:42,515 THE STUDY. 1401 00:48:42,515 --> 00:48:45,585 A COUPLE OF THINGS, THE FIRST 1402 00:48:45,585 --> 00:48:46,953 THING YOU ASK IS BECAUSE MOST OF 1403 00:48:46,953 --> 00:48:50,690 OUR WORK IS TIED TO EQUITY, 1404 00:48:50,690 --> 00:48:55,195 AFRICAN AMERICANS, HISPANICS, 1405 00:48:55,195 --> 00:48:58,097 ASIAN SUBPOPULATIONS AND NATIVE 1406 00:48:58,097 --> 00:48:59,232 AMERICANS AND SO WHAT WE 1407 00:48:59,232 --> 00:49:00,400 ACTUALLY ASK OURSELVES IS FIRST 1408 00:49:00,400 --> 00:49:02,335 OF ALL, BASED ON WHAT WE PLAN TO 1409 00:49:02,335 --> 00:49:04,170 DO, HOW DID MINORITY RECRUITMENT 1410 00:49:04,170 --> 00:49:06,673 GO RELATIVE TO PROJECTIONS? 1411 00:49:06,673 --> 00:49:09,509 SO MOST OF US ARE REQUIRED TO 1412 00:49:09,509 --> 00:49:11,044 DECLARE WHAT WE'RE DOING IN 1413 00:49:11,044 --> 00:49:12,412 TERMS OF DEI NUMBERS SO THE 1414 00:49:12,412 --> 00:49:14,113 QUESTION IS WHAT PROPORTION OF 1415 00:49:14,113 --> 00:49:15,448 RECRUITED SUBGROUPS WERE 1416 00:49:15,448 --> 00:49:16,416 RELATIVE TO WHAT YOU PLANNED? 1417 00:49:16,416 --> 00:49:18,484 WERE YOU SUCCESSFUL, WAS IT 1418 00:49:18,484 --> 00:49:20,186 ABOUT THE SAME NUMBER, DID YOU 1419 00:49:20,186 --> 00:49:21,387 ACTUALLY OVERRECRUIT, 1420 00:49:21,387 --> 00:49:23,957 UNDERRECRUIT, AND THEN LOOKING 1421 00:49:23,957 --> 00:49:26,492 AT SOME OF YOUR RACE/ETHNICITY 1422 00:49:26,492 --> 00:49:27,927 BREAK DOWNS, WHAT DOES IT LOOK 1423 00:49:27,927 --> 00:49:30,964 LIKE IN TERMS OF RACE/ETHNICITY, 1424 00:49:30,964 --> 00:49:32,565 IN TERMS OF SEX AND GENDER 1425 00:49:32,565 --> 00:49:33,733 BREAKDOWN, IN TERMS OF 1426 00:49:33,733 --> 00:49:34,033 INTERACTION. 1427 00:49:34,033 --> 00:49:35,568 SO AS YOU LOOK AT SUBGROUPS, AS 1428 00:49:35,568 --> 00:49:36,870 YOU ACTUALLY BEGIN TO ASK 1429 00:49:36,870 --> 00:49:42,242 YOURSELF, YOU KNOW, RACE BY SEX 1430 00:49:42,242 --> 00:49:43,476 AND GENDER AND WHAT DOES IT 1431 00:49:43,476 --> 00:49:44,143 ACTUALLY LOOK LIKE. 1432 00:49:44,143 --> 00:49:45,879 AND THEN QUESTIONS ABOUT -- AND 1433 00:49:45,879 --> 00:49:47,447 THESE ARE THINGS THAT SHOULD BE 1434 00:49:47,447 --> 00:49:48,548 HAPPENING AT THE LEVEL OF THE 1435 00:49:48,548 --> 00:49:49,949 TEAM BUT INVESTIGATORS ALSO TO 1436 00:49:49,949 --> 00:49:50,950 START. 1437 00:49:50,950 --> 00:49:51,451 UNEXPECTED LOW ACCRUAL. 1438 00:49:51,451 --> 00:49:53,186 WHAT HAPPENED TO CERTAIN 1439 00:49:53,186 --> 00:49:53,586 POPULATIONS? 1440 00:49:53,586 --> 00:49:57,657 SO WE HAVE THIS STUDY, AN NIDDK 1441 00:49:57,657 --> 00:50:00,093 STUDY WHERE WE'RE TRYING TO 1442 00:50:00,093 --> 00:50:02,061 RECRUIT EQUAL NUMBERS OF WHITES, 1443 00:50:02,061 --> 00:50:04,030 BLACKS, AFRICAN AMERICANS, AND 1444 00:50:04,030 --> 00:50:06,165 HISPANIC, BUT WE CHOOSE TO FOCUS 1445 00:50:06,165 --> 00:50:07,901 ON ENGLISH-SPEAKING HISPANICS. 1446 00:50:07,901 --> 00:50:09,769 IT TURNS OUT THAT AS TIME WENT, 1447 00:50:09,769 --> 00:50:12,405 WE REALIZED THAT WE ACTUALLY DID 1448 00:50:12,405 --> 00:50:14,274 NOT HAVE, IN OUR -- IN 1449 00:50:14,274 --> 00:50:17,877 MILWAUKEE, WE HAD A LOT MORE 1450 00:50:17,877 --> 00:50:18,344 NON-ENGLISH-SPEAKING. 1451 00:50:18,344 --> 00:50:19,345 SO THE QUESTION WE HAD TO DECIDE 1452 00:50:19,345 --> 00:50:21,214 ON WAS WHAT ARE WE GOING TO DO 1453 00:50:21,214 --> 00:50:22,615 NOW THAT THIS IS THE CASE, HOW 1454 00:50:22,615 --> 00:50:23,416 DOES THAT AFFECT US? 1455 00:50:23,416 --> 00:50:24,851 SO YOU ACTUALLY HAVE TO THINK 1456 00:50:24,851 --> 00:50:26,185 ABOUT THIS AND IT HAS TO BE 1457 00:50:26,185 --> 00:50:26,586 ONGOING. 1458 00:50:26,586 --> 00:50:28,922 YOU CAN'T JUST BE AT THE VERY 1459 00:50:28,922 --> 00:50:30,356 END OF THE STUDY, IT HAS TO BE 1460 00:50:30,356 --> 00:50:31,324 AN ONGOING PROCESS BUT 1461 00:50:31,324 --> 00:50:32,225 DEFINITELY AT THE END OF THE 1462 00:50:32,225 --> 00:50:33,559 STUDY, ASKING YOURSELF HOW DID 1463 00:50:33,559 --> 00:50:34,227 WE DO? 1464 00:50:34,227 --> 00:50:36,529 AND THEN YOU ALSO HAVE TO LOOK 1465 00:50:36,529 --> 00:50:39,499 AT DIFFERENTIAL LOSS TO 1466 00:50:39,499 --> 00:50:40,700 FOLLOW-UP BY SOME OF THESE 1467 00:50:40,700 --> 00:50:42,802 GROUPS. 1468 00:50:42,802 --> 00:50:44,637 CERTAIN GROUPS -- IF THEY 1469 00:50:44,637 --> 00:50:46,873 DROPPED OUT, WHY DID THEY DROP 1470 00:50:46,873 --> 00:50:47,307 OUT. 1471 00:50:47,307 --> 00:50:48,708 SO SOME OF THESE QUESTIONS AND 1472 00:50:48,708 --> 00:50:50,576 BUILDING THAT INTO YOUR STUDY, 1473 00:50:50,576 --> 00:50:51,811 ACTUALLY ALLOWS YOU TO ACTUALLY 1474 00:50:51,811 --> 00:50:53,246 HAVE A BETTER SENSE OF WHAT IS 1475 00:50:53,246 --> 00:50:58,051 HAPPENING IN TERMS OF DEI. 1476 00:50:58,051 --> 00:51:00,520 THE NEXT THING IS A PROCESS 1477 00:51:00,520 --> 00:51:01,721 EVALUATION, I THINK MOST PEOPLE 1478 00:51:01,721 --> 00:51:03,022 ARE NOT REQUIRED TO DO THIS. 1479 00:51:03,022 --> 00:51:04,590 WE DO THIS AS PART OF OUR 1480 00:51:04,590 --> 00:51:05,491 ROUTINE. 1481 00:51:05,491 --> 00:51:06,926 BUT PROCESS EVALUATION IS REALLY 1482 00:51:06,926 --> 00:51:08,227 ASKING QUESTIONS LIKE WHAT 1483 00:51:08,227 --> 00:51:09,595 WORKED WELL AND WHAT DID NOT GO 1484 00:51:09,595 --> 00:51:11,431 WELL WITH MINORITY RECRUITMENT. 1485 00:51:11,431 --> 00:51:14,067 YOU KNOW, THINGS LIKE ARE THERE 1486 00:51:14,067 --> 00:51:15,969 OBVIOUS GAPS, THINGS WE ACTUALLY 1487 00:51:15,969 --> 00:51:17,070 MISSED, THINGS WE DIDN'T THINK 1488 00:51:17,070 --> 00:51:17,503 ABOUT? 1489 00:51:17,503 --> 00:51:19,038 AND MOST OF THIS REALLY COMES 1490 00:51:19,038 --> 00:51:20,907 BACK FROM MULTIPLE SOURCES. 1491 00:51:20,907 --> 00:51:22,675 SO FEEDBACK FROM TEAM MEMBERS, 1492 00:51:22,675 --> 00:51:24,644 YOUR STUDY COORDINATORS, YOUR 1493 00:51:24,644 --> 00:51:26,546 PROGRAM ASSISTANTS, YOUR 1494 00:51:26,546 --> 00:51:27,213 EDUCATORS, YOUR COMMUNITY 1495 00:51:27,213 --> 00:51:29,615 PARTNERS, WHAT ACTUALLY WENT 1496 00:51:29,615 --> 00:51:31,484 WELL, WHAT DID NOT GO SO WELL, 1497 00:51:31,484 --> 00:51:32,518 WHAT COULD YOU DO DIFFERENTLY? 1498 00:51:32,518 --> 00:51:33,820 BUT THEN, REALLY IMPORTANT TO 1499 00:51:33,820 --> 00:51:36,756 TALK TO STUDY SITES. 1500 00:51:36,756 --> 00:51:38,691 SO IN A LOT OF OUR STUDIES, WE 1501 00:51:38,691 --> 00:51:40,860 HAVE -- AT ANY GIVEN STUDY, 1502 00:51:40,860 --> 00:51:43,062 WE'RE TALKING TO ABOUT 450, 500 1503 00:51:43,062 --> 00:51:45,164 COMMUNITY PARTNERS, WE'RE 1504 00:51:45,164 --> 00:51:46,399 ACTUALLY WORKING WITH HEALTH 1505 00:51:46,399 --> 00:51:48,234 SYSTEMS, SO WE HAVE A LOT OF 1506 00:51:48,234 --> 00:51:49,369 PEOPLE WE'RE ACTUALLY 1507 00:51:49,369 --> 00:51:50,436 INTERACTING WITH, SO GOING BACK 1508 00:51:50,436 --> 00:51:51,671 TO SOME OF THESE SITES, 1509 00:51:51,671 --> 00:51:53,773 ESPECIALLY THE BIGGER SITES, ASK 1510 00:51:53,773 --> 00:51:54,574 QUESTIONS, IS THERE SOMETHING 1511 00:51:54,574 --> 00:51:56,309 THAT WENT WRONG, DID YOU OBSERVE 1512 00:51:56,309 --> 00:51:56,642 SOMETHING? 1513 00:51:56,642 --> 00:51:59,045 OBVIOUSLY WE DO THIS ON AN 1514 00:51:59,045 --> 00:52:00,513 ONGOING BASIS BUT REALLY GETTING 1515 00:52:00,513 --> 00:52:02,148 FEEDBACK FROM THEM. 1516 00:52:02,148 --> 00:52:05,418 THEN WE BUILD IN FEEDBACK FROM 1517 00:52:05,418 --> 00:52:05,752 PARTICIPANTS. 1518 00:52:05,752 --> 00:52:07,120 SO WE ACTUALLY CALL 1519 00:52:07,120 --> 00:52:08,654 PARTICIPANTS, WE DO THIS ON AN 1520 00:52:08,654 --> 00:52:09,956 ONGOING BASIS, WE ACTUALLY CALL 1521 00:52:09,956 --> 00:52:11,491 PARTS ANTS AND ASK QUESTIONS 1522 00:52:11,491 --> 00:52:12,859 LIKE WHAT WENT WRONG WITH THIS 1523 00:52:12,859 --> 00:52:13,092 STUDY? 1524 00:52:13,092 --> 00:52:14,394 WHAT DID YOU LIKE ABOUT IT, WHAT 1525 00:52:14,394 --> 00:52:15,495 DIDN'T YOU LIKE ABOUT IT, WHAT 1526 00:52:15,495 --> 00:52:17,263 ARE SOME OF THE PROCESSES THAT 1527 00:52:17,263 --> 00:52:21,200 TOOK PLACE, ESPECIALLY MINORITY 1528 00:52:21,200 --> 00:52:23,302 PARTICIPANTS, WOMEN AND 1529 00:52:23,302 --> 00:52:29,142 MINORITIES, WE ASK QUESTIONS 1530 00:52:29,142 --> 00:52:31,444 WHERE -- ADEQUATE, DID THEY HAVE 1531 00:52:31,444 --> 00:52:32,245 TRANSPORTATION. 1532 00:52:32,245 --> 00:52:34,180 WE ACTUALLY DO HOME VISITS, 1533 00:52:34,180 --> 00:52:35,314 COMMUNITY-BASED RECRUITMENT, WE 1534 00:52:35,314 --> 00:52:36,516 ACTUALLY DELIVER THINGS OUT IN 1535 00:52:36,516 --> 00:52:37,650 THE COMMUNITY, SO WE ACTUALLY 1536 00:52:37,650 --> 00:52:39,052 ASK QUESTIONS LIKE WAS IT VEEPT 1537 00:52:39,052 --> 00:52:40,720 FOR YOU, WERE YOU ABLE TO GET 1538 00:52:40,720 --> 00:52:41,687 INVOLVED, AND HOW DID THIS WORK 1539 00:52:41,687 --> 00:52:42,455 OUT FOR YOU? 1540 00:52:42,455 --> 00:52:45,958 AND I THINK THAT LEVEL OF 1541 00:52:45,958 --> 00:52:47,193 DEBRIEFING IS REALLY IMPORTANT 1542 00:52:47,193 --> 00:52:49,462 TO GET CONTEXT TO UNDERSTAND 1543 00:52:49,462 --> 00:52:51,130 SOME OF THESE CHALLENGES 1544 00:52:51,130 --> 00:52:52,832 PARTICIPANTS FACE. 1545 00:52:52,832 --> 00:52:54,901 SO FOR EXAMPLE, WE'RE DOING 1546 00:52:54,901 --> 00:52:56,102 STUDIES IN THE MIDDLE OF THE 1547 00:52:56,102 --> 00:52:57,603 PANDEMIC, AND WE HAD TO ACTUALLY 1548 00:52:57,603 --> 00:53:00,073 ASK SOME OF OUR STUDIES WERE 1549 00:53:00,073 --> 00:53:03,376 FOOD DELIVERY, WE'RE DOING BOXES 1550 00:53:03,376 --> 00:53:04,043 TO PARTICIPANTS. 1551 00:53:04,043 --> 00:53:05,678 WHEN THE PANDEMIC HIT, WE HAD TO 1552 00:53:05,678 --> 00:53:07,346 MAKE A DECISION HOW DO WE MANAGE 1553 00:53:07,346 --> 00:53:07,780 THIS. 1554 00:53:07,780 --> 00:53:09,148 WE HAD TO COME UP WITH CREATIVE 1555 00:53:09,148 --> 00:53:11,884 WAYS TO MAKE SURE PARTICIPANTS 1556 00:53:11,884 --> 00:53:13,886 ACTUALLY GOT -- SO THAT FEEDBACK 1557 00:53:13,886 --> 00:53:15,788 IS REALLY IMPORTANT AND WE 1558 00:53:15,788 --> 00:53:17,090 LEARNED A LOT FROM SOME OF THE 1559 00:53:17,090 --> 00:53:17,990 FEEDBACK, THINGS ON THE SURFACE 1560 00:53:17,990 --> 00:53:19,759 THAT LOOK LIKE THEY'RE WORKING 1561 00:53:19,759 --> 00:53:20,960 AND PARTICIPANTS ARE TELLING YOU 1562 00:53:20,960 --> 00:53:22,462 THIS REALLY ISN'T WORKING AS 1563 00:53:22,462 --> 00:53:22,829 WELL. 1564 00:53:22,829 --> 00:53:26,799 BUT THEN ALSO YOUR PARTNERS, HOW 1565 00:53:26,799 --> 00:53:28,234 HAPPY ARE THEY WITH THE FLOW, 1566 00:53:28,234 --> 00:53:28,668 ENGAGEMENT? 1567 00:53:28,668 --> 00:53:29,669 PARTNERS ARE THE FIRST TO TELL 1568 00:53:29,669 --> 00:53:30,603 YOU ABOUT THE CENTERS. 1569 00:53:30,603 --> 00:53:32,004 ARE YOUR CENTERS FOR THE 1570 00:53:32,004 --> 00:53:33,206 PATIENTS -- ARE THE PATIENTS 1571 00:53:33,206 --> 00:53:34,507 HAPPY, ESPECIALLY FOR COMMUNITY 1572 00:53:34,507 --> 00:53:36,209 PARTNERS, MANY TIMES PEOPLE 1573 00:53:36,209 --> 00:53:38,010 DON'T ANTICIPATE THE COST OF 1574 00:53:38,010 --> 00:53:39,178 COMMUNITY RESEARCH. 1575 00:53:39,178 --> 00:53:41,214 THE IDEA THAT IT ACTUALLY COSTS 1576 00:53:41,214 --> 00:53:42,615 MONEY TO HAVE PARTNERS. 1577 00:53:42,615 --> 00:53:44,016 YOUR PARTNERS ARE PAYING 1578 00:53:44,016 --> 00:53:44,984 ELECTRICITY BILLS, THEY'RE 1579 00:53:44,984 --> 00:53:45,318 PAYING RENT. 1580 00:53:45,318 --> 00:53:47,120 HOW DO YOU SUPPORT THEM IN THAT 1581 00:53:47,120 --> 00:53:47,453 CONTEXT? 1582 00:53:47,453 --> 00:53:49,956 MOST OF OUR NIH GRANTS, WE'RE 1583 00:53:49,956 --> 00:53:50,990 NOT ALLOWED TO ACTUALLY BUILD 1584 00:53:50,990 --> 00:53:52,291 THAT IN, BUT WE HAVE TO FIND 1585 00:53:52,291 --> 00:53:55,361 WAYS TO ACTUALLY BE SUPPORTIVE 1586 00:53:55,361 --> 00:53:56,796 OF THOSE INDIVIDUALS AND REALLY 1587 00:53:56,796 --> 00:53:58,164 ASKING, YOU KNOW, WHAT ARE WE 1588 00:53:58,164 --> 00:54:01,667 DOING, HOW CAN WE MINIMIZE 1589 00:54:01,667 --> 00:54:03,970 DESTRUCTION TO THAT FLOW AND GED 1590 00:54:03,970 --> 00:54:05,404 FEEDBACK. 1591 00:54:05,404 --> 00:54:06,439 THEN ANY OBVIOUS LAPSES THAT 1592 00:54:06,439 --> 00:54:08,641 SHOULD BE ADDRESSED, THINGS THAT 1593 00:54:08,641 --> 00:54:10,343 ARE -- GAPS, GLARING CHALLENGES 1594 00:54:10,343 --> 00:54:12,311 THAT SHOULD BE ADDRESSED THAT 1595 00:54:12,311 --> 00:54:14,480 BECOME EVIDENT AS YOU DO THIS 1596 00:54:14,480 --> 00:54:16,149 PROCESS EVALUATION. 1597 00:54:16,149 --> 00:54:17,216 THE NEXT COMPLEMENT OF THIS IS 1598 00:54:17,216 --> 00:54:18,951 REALLY NOW LOOKING AT ANOTHER 1599 00:54:18,951 --> 00:54:21,020 PART OF PROCESS EVALUATION IS 1600 00:54:21,020 --> 00:54:21,888 OBJECTIVE AND SUBJECTIVE 1601 00:54:21,888 --> 00:54:23,723 MEASURES OF MINORITY RECRUITMENT 1602 00:54:23,723 --> 00:54:24,023 STRATEGIES. 1603 00:54:24,023 --> 00:54:28,094 AND THE QUESTION HERE IS, WHAT 1604 00:54:28,094 --> 00:54:29,495 ARE YOUR STRATEGIES? 1605 00:54:29,495 --> 00:54:30,796 HOW ARE YOU ACTUALLY GOING TO 1606 00:54:30,796 --> 00:54:32,198 GET MINORITY PARTICIPANTS? 1607 00:54:32,198 --> 00:54:33,432 HOW ARE YOU ACTUALLY GOING TO 1608 00:54:33,432 --> 00:54:35,568 GET UNDERREPRESENTED GROUPS? 1609 00:54:35,568 --> 00:54:36,736 AND WHERE ARE YOU GOING TO GET 1610 00:54:36,736 --> 00:54:37,537 THEM FROM? 1611 00:54:37,537 --> 00:54:41,007 WHAT LOCATIONS, SITES, PARTNERS, 1612 00:54:41,007 --> 00:54:42,108 PROCESSES ARE YOU GOING TO USE, 1613 00:54:42,108 --> 00:54:47,446 AND THEN LOOKING AT YOUR DATA, 1614 00:54:47,446 --> 00:54:49,081 ALL THOSE WHO PARTICIPATE, WE 1615 00:54:49,081 --> 00:54:49,682 ACTUALLY TRACK THOSE WITH THE 1616 00:54:49,682 --> 00:54:50,116 CLIENT. 1617 00:54:50,116 --> 00:54:52,818 WE FIND OUT JUST AS IMPORTANT AS 1618 00:54:52,818 --> 00:54:54,020 THOSE THAT AGREED TO PARTICIPATE 1619 00:54:54,020 --> 00:54:55,721 BECAUSE IT GIVES US A SENSE WHY 1620 00:54:55,721 --> 00:54:58,357 DID THEY DECLINE, WHY ARE THEY 1621 00:54:58,357 --> 00:54:59,258 CHOOSING NOT TO PARTICIPATE IN 1622 00:54:59,258 --> 00:55:00,026 THE STUDY? 1623 00:55:00,026 --> 00:55:01,594 SOMETIMES YOU REALIZE THAT SOME 1624 00:55:01,594 --> 00:55:03,563 PERCEPTIONS ABOUT THE STUDY, 1625 00:55:03,563 --> 00:55:06,966 PERCEPTIONS ABOUT WHAT THIS 1626 00:55:06,966 --> 00:55:08,134 ACTUALLY MEANS, EVEN THE 1627 00:55:08,134 --> 00:55:09,135 TERMINOLOGY YOU'RE USING. 1628 00:55:09,135 --> 00:55:11,737 THE FLYER, WE'VE ACTUALLY COME 1629 00:55:11,737 --> 00:55:12,939 ACROSS AND GIVE THE WRONG 1630 00:55:12,939 --> 00:55:14,674 IMPRESSION, SO THAT ABILITY TO 1631 00:55:14,674 --> 00:55:17,109 ASK PEOPLE AND GATHER 1632 00:55:17,109 --> 00:55:18,277 INFORMATION FROM THEM IS REALLY 1633 00:55:18,277 --> 00:55:18,778 CRITICAL. 1634 00:55:18,778 --> 00:55:21,314 THEN WE ALSO DO -- THE IDEA OF 1635 00:55:21,314 --> 00:55:22,515 DOING STRUCTURED INTERVIEWS FOR 1636 00:55:22,515 --> 00:55:22,848 COMPLETERS. 1637 00:55:22,848 --> 00:55:24,584 THIS IS REALLY IMPORTANT. 1638 00:55:24,584 --> 00:55:28,721 YOU KNOW, SO YOU HAVE PEOPLE -- 1639 00:55:28,721 --> 00:55:29,622 THESE ARE INDIVIDUALS, WHY DID 1640 00:55:29,622 --> 00:55:31,057 THEY AGREE TO PARTICIPATE? 1641 00:55:31,057 --> 00:55:32,258 WHAT MADE THEM STAY IN THE 1642 00:55:32,258 --> 00:55:32,558 STUDY? 1643 00:55:32,558 --> 00:55:37,964 AND SO WHEN YOU HAVE STUDIES 1644 00:55:37,964 --> 00:55:41,267 ONLINE, I'VE REACHED -- 300 TO 1645 00:55:41,267 --> 00:55:41,667 4050. 1646 00:55:41,667 --> 00:55:46,405 SO YOU'RE RANDOMIZING PEOPLE, 1647 00:55:46,405 --> 00:55:47,306 AND YOU'RE ASKING THE QUESTION, 1648 00:55:47,306 --> 00:55:49,141 WHY DID YOU STAY IN THE STUDY? 1649 00:55:49,141 --> 00:55:51,777 WHAT KEPT YOU IN THE STUDY, WHAT 1650 00:55:51,777 --> 00:55:53,012 DID YOU FIND USEFUL? 1651 00:55:53,012 --> 00:55:57,817 AND THEN WE ALSO REACH OUT TO 1652 00:55:57,817 --> 00:56:02,288 INDIVIDUALS -- DROPOUTS, WHY DID 1653 00:56:02,288 --> 00:56:05,024 YOU DECIDE TO DROP OUT, WHAT 1654 00:56:05,024 --> 00:56:06,425 COULD HAVE BEEN DONE DIFFERENTLY 1655 00:56:06,425 --> 00:56:08,494 TO KEEP YOU IN THE STUDY? 1656 00:56:08,494 --> 00:56:09,862 MANY TIMES IT'S SOMETHING AS 1657 00:56:09,862 --> 00:56:10,796 SIMPLE AS SUPPORTING PEOPLE 1658 00:56:10,796 --> 00:56:12,465 GOING TO THEIR HOMES TO HELP 1659 00:56:12,465 --> 00:56:14,867 THEM DO BLOOD DRAWS RATHER 1660 00:56:14,867 --> 00:56:15,768 THAN -- THEY HAVE TRANSPORTATION 1661 00:56:15,768 --> 00:56:16,168 CHALLENGES. 1662 00:56:16,168 --> 00:56:17,270 THEY MAY ACTUALLY HAVE 1663 00:56:17,270 --> 00:56:18,804 CHALLENGES WITH -- THEY GOT 1664 00:56:18,804 --> 00:56:20,072 ADMITTED IN THE HOSPITAL, AND NO 1665 00:56:20,072 --> 00:56:21,140 ONE WAS ACTUALLY TRACKING. 1666 00:56:21,140 --> 00:56:22,541 SO SOME OF THIS DATA MEANS THAT 1667 00:56:22,541 --> 00:56:23,843 YOU SHOULD TALK TO PEOPLE, IT 1668 00:56:23,843 --> 00:56:28,314 GIVES YOU A SENSE OF MINORITY 1669 00:56:28,314 --> 00:56:29,548 GROUPS, SOCIAL DETERMINANTS, 1670 00:56:29,548 --> 00:56:32,285 SOCIAL RISK FACTORS, CHALLENGES 1671 00:56:32,285 --> 00:56:34,687 WITH TRUST AND DISTRUST IN THE 1672 00:56:34,687 --> 00:56:35,454 HEALTHCARE SYSTEM, SO ALL OF 1673 00:56:35,454 --> 00:56:36,956 THIS STARTS TO COME OUT AS 1674 00:56:36,956 --> 00:56:41,560 YOU'RE DOING DEBRIEFING. 1675 00:56:41,560 --> 00:56:44,530 THE NEXT THING THAT'S IMPORTANT, 1676 00:56:44,530 --> 00:56:47,233 THIS IS A LOT OF TIMES -- I CALL 1677 00:56:47,233 --> 00:56:49,602 THEM STATISTICAL CONSIDERATIONS, 1678 00:56:49,602 --> 00:56:53,039 I'M GOING TO TALK ABOUT MULTIPLE 1679 00:56:53,039 --> 00:56:54,173 COMPONENTS OF THIS PROCESS. 1680 00:56:54,173 --> 00:56:56,008 SO YOU'RE DONE WITH YOUR STUDY, 1681 00:56:56,008 --> 00:57:01,414 YOU HAVE YOUR -- NOW YOUR 1682 00:57:01,414 --> 00:57:03,783 QUESTION IS, DO YOU STILL HAVE 1683 00:57:03,783 --> 00:57:05,851 POWER TO ACTUALLY ANSWER THE 1684 00:57:05,851 --> 00:57:06,952 QUESTIONS YOU'VE STILL GOT TO 1685 00:57:06,952 --> 00:57:07,386 ANSWER. 1686 00:57:07,386 --> 00:57:08,554 IT'S ACTUALLY TWO PART. 1687 00:57:08,554 --> 00:57:19,065 ONE OF THEM IS YOU -- BASED ON 1688 00:57:19,832 --> 00:57:21,634 ASSUMPTIONS, SO IT TYPICALLY 1689 00:57:21,634 --> 00:57:24,337 CALCULATED AFTER THE STUDY, AND 1690 00:57:24,337 --> 00:57:25,004 EVIDENCE SUGGESTS THAT MANY 1691 00:57:25,004 --> 00:57:27,973 STUDIES ARE UNDERPOWERED. 1692 00:57:27,973 --> 00:57:29,942 SO PROSPECTIVE SAMPLE SIZE 1693 00:57:29,942 --> 00:57:31,444 CALCULATION WE HAVE 1694 00:57:31,444 --> 00:57:32,278 UNDERESTIMATED EXPECTED 1695 00:57:32,278 --> 00:57:33,846 DIFFERENCE BETWEEN GROUPS. 1696 00:57:33,846 --> 00:57:36,215 SO A REMIT NUMBER -- MAYBE YOU 1697 00:57:36,215 --> 00:57:41,954 PLAN TO GET EQUAL NUMBERS, SO 1698 00:57:41,954 --> 00:57:43,789 POST HOC POWER ANALYSIS IS A 1699 00:57:43,789 --> 00:57:46,258 CALCULATION BASED ON OBSERVED 1700 00:57:46,258 --> 00:57:51,530 VALUE OF THE EFFECT SIZE, THIS 1701 00:57:51,530 --> 00:57:54,800 IS ACTUAL, THIS IS WHAT YOU 1702 00:57:54,800 --> 00:57:56,202 EXPECTED. 1703 00:57:56,202 --> 00:57:57,636 WHEN THERE'S NO DIFFERENCE, YOU 1704 00:57:57,636 --> 00:58:04,677 ARE TALKING ABOUT -- DO I HAVE 1705 00:58:04,677 --> 00:58:06,512 ADEQUATE POWER. 1706 00:58:06,512 --> 00:58:09,915 SO NO POWER -- SOMETIMES WE 1707 00:58:09,915 --> 00:58:11,016 ACTUALLY DON'T HAVE ENOUGH 1708 00:58:11,016 --> 00:58:11,350 POWER. 1709 00:58:11,350 --> 00:58:12,985 IN ALL THE CASES, YOU ACTUALLY 1710 00:58:12,985 --> 00:58:14,019 HAVE POWER BUT THE EFFECT IS 1711 00:58:14,019 --> 00:58:14,286 SMALL. 1712 00:58:14,286 --> 00:58:15,421 IT'S REALLY IMPORTANT TO KNOW 1713 00:58:15,421 --> 00:58:18,357 AND TO DIFFERENTIATE THE TWO. 1714 00:58:18,357 --> 00:58:25,798 SO IF POST HOC POWER IS HIGH, IT 1715 00:58:25,798 --> 00:58:27,032 ALSO HELPS YOU UNDERSTAND IF 1716 00:58:27,032 --> 00:58:31,604 YOU'RE RECRUITING AND YOU 1717 00:58:31,604 --> 00:58:35,975 HAVE - ASSUMPTIONS ABOUT EXPECTD 1718 00:58:35,975 --> 00:58:36,842 DIFFERENCES BETWEEN GROUPS, 1719 00:58:36,842 --> 00:58:39,578 CORRELATION WITHIN SUBJECTS, MAY 1720 00:58:39,578 --> 00:58:42,214 ACTUALLY -- YOU REALIZE THE 1721 00:58:42,214 --> 00:58:43,749 CORRELATION ACCOUNTED FOR A VERY 1722 00:58:43,749 --> 00:58:44,617 DIFFERENT -- THESE ARE THINGS 1723 00:58:44,617 --> 00:58:46,585 THAT HELP YOU AS YOU BEGIN TO 1724 00:58:46,585 --> 00:58:51,290 ACTUALLY ANALYZE YOUR DATA AND 1725 00:58:51,290 --> 00:58:52,291 DECIDE -- THE NEXT PIECE I WANT 1726 00:58:52,291 --> 00:58:57,096 TO TALK ABOUT IS STATISTICAL 1727 00:58:57,096 --> 00:58:57,963 ISSUES, HETEROGENEITY OF 1728 00:58:57,963 --> 00:58:58,431 TREATMENT EFFECT. 1729 00:58:58,431 --> 00:59:01,734 SO THIS IS NOT A VERY COMMON -- 1730 00:59:01,734 --> 00:59:03,702 IN MOST TRIALS AND EVEN 1731 00:59:03,702 --> 00:59:04,303 OBSERVATIONAL STUDIES BECAUSE 1732 00:59:04,303 --> 00:59:06,205 MOST STUDIES ARE REALLY FOCUSED 1733 00:59:06,205 --> 00:59:07,640 ON AVERAGE TREATMENT EFFECT. 1734 00:59:07,640 --> 00:59:10,376 THE ASSUMPTION IS THAT YOU'RE 1735 00:59:10,376 --> 00:59:12,244 TAKING TWO GROUPS, COMPARING 1736 00:59:12,244 --> 00:59:13,012 TREATMENT EFFECT BETWEEN THE TWO 1737 00:59:13,012 --> 00:59:13,579 GROUPS. 1738 00:59:13,579 --> 00:59:15,514 WE KNOW PEOPLE RESPOND DIFFERENT 1739 00:59:15,514 --> 00:59:16,615 EVEN WITHIN GROUPS. 1740 00:59:16,615 --> 00:59:17,750 SO HETEROGENEITY OF TREATMENT 1741 00:59:17,750 --> 00:59:20,553 EFFECT IS DEFINED AS NON-RANDOM 1742 00:59:20,553 --> 00:59:24,490 VARIABILITY IN THE DIRECTION 1743 00:59:24,490 --> 00:59:26,325 OF -- MEASURED USING CLINICAL 1744 00:59:26,325 --> 00:59:27,226 OUTCOMES. 1745 00:59:27,226 --> 00:59:28,194 THE TWO MAIN GOALS OF THESE 1746 00:59:28,194 --> 00:59:32,364 TYPES OF ANALYSIS, ONE IS TO -- 1747 00:59:32,364 --> 00:59:33,632 CLINICAL RELEVANT SUBGROUPS, 1748 00:59:33,632 --> 00:59:35,434 WHAT WE'LL CALL THE SUBGROUP 1749 00:59:35,434 --> 00:59:35,968 ANALYSIS. 1750 00:59:35,968 --> 00:59:38,838 BUT THE SECOND IS PREDICT WHAT 1751 00:59:38,838 --> 00:59:40,039 THAT INDIVIDUAL MIGHT BENEFIT 1752 00:59:40,039 --> 00:59:44,210 FROM TREATMENT, SO MOST OF US 1753 00:59:44,210 --> 00:59:45,778 THAT DO CLINICAL TRIALS WE DO 1754 00:59:45,778 --> 00:59:49,482 SOME KIND OF SUBGROUP ANALYSIS. 1755 00:59:49,482 --> 00:59:50,749 THE COMPONENT ACTUALLY LOOKING 1756 00:59:50,749 --> 00:59:52,084 AT THE IDEA OF WHO WILL ACTUALLY 1757 00:59:52,084 --> 00:59:53,018 BENEFIT FROM TREATMENT BASED ON 1758 00:59:53,018 --> 00:59:55,988 WHAT YOU HAVE. 1759 00:59:55,988 --> 00:59:57,723 SO IT'S ALWAYS WORTHWHILE TO 1760 00:59:57,723 --> 00:59:59,792 CONSIDER SUBGROUP ANALYSIS, 1761 00:59:59,792 --> 01:00:01,560 REALLY BEING ABLE TO LOOK AT 1762 01:00:01,560 --> 01:00:04,230 SOME ANALYSIS BY RACE/ETHNICITY, 1763 01:00:04,230 --> 01:00:05,731 BY AGE, SEX AND GENDER AND 1764 01:00:05,731 --> 01:00:07,266 SOMETIMES BY SES FACTORS. 1765 01:00:07,266 --> 01:00:08,267 THIS ALLOWS TO YOU ACTUALLY 1766 01:00:08,267 --> 01:00:12,171 BEGIN TO DEFINE OTHER SUBGROUPS. 1767 01:00:12,171 --> 01:00:13,706 NOW OBVIOUSLY I'M GOING TO TALK 1768 01:00:13,706 --> 01:00:16,709 ABOUT THIS IN MY NEXT SLIDE, YOU 1769 01:00:16,709 --> 01:00:20,412 HAVE TO RECOGNIZE THAT UNLESS 1770 01:00:20,412 --> 01:00:23,015 YOU ARE -- YOU MAY NOT HAVE 1771 01:00:23,015 --> 01:00:25,184 ACTUALLY HAVE POWER IN THIS 1772 01:00:25,184 --> 01:00:25,618 SUBGROUP ANALYSIS. 1773 01:00:25,618 --> 01:00:27,386 SO HOW DO YOU ADDRESS THAT? 1774 01:00:27,386 --> 01:00:31,223 THERE ARE FOUR MAIN WAYS TO LOOK 1775 01:00:31,223 --> 01:00:32,224 AT HETEROGENEITY OF TREATMENT 1776 01:00:32,224 --> 01:00:32,525 EFFECT. 1777 01:00:32,525 --> 01:00:34,560 ONE IS TO DO SUBGROUP ANALYSIS 1778 01:00:34,560 --> 01:00:36,028 AND ESTIMATE BENEFITS SEPARATELY 1779 01:00:36,028 --> 01:00:37,329 FOR SUBGROUPS. 1780 01:00:37,329 --> 01:00:45,538 PACED ON IF YOU COMPARE MEN VER, 1781 01:00:45,538 --> 01:00:47,306 MINORITY GROUP VERSUS OTHER 1782 01:00:47,306 --> 01:00:48,507 MINORITY GROUPS, THESE ARE 1783 01:00:48,507 --> 01:00:49,375 SUBGROUP ANALYSIS. 1784 01:00:49,375 --> 01:00:51,277 THE SECOND APPROACH IS TO USE 1785 01:00:51,277 --> 01:00:52,578 THE STATISTICAL MODEL THAT 1786 01:00:52,578 --> 01:00:55,781 ESTIMATES THE RELATIONSHIP. 1787 01:00:55,781 --> 01:00:58,717 SUCH A MODEL AS SIZE AND 1788 01:00:58,717 --> 01:01:01,453 MULTIVARIABLE SCOPE, YOU CAN 1789 01:01:01,453 --> 01:01:03,889 ACTUALLY DETERMINE WHAT HAPPENS 1790 01:01:03,889 --> 01:01:05,190 IN INDIVIDUAL PATIENTS. 1791 01:01:05,190 --> 01:01:08,127 THE THIRD IS TO CONSTRUCT THE 1792 01:01:08,127 --> 01:01:09,028 STATISTICAL MODEL. 1793 01:01:09,028 --> 01:01:10,563 YOU CAN ACTUALLY LOOK AT 1794 01:01:10,563 --> 01:01:14,500 TREATMENT EX-PORE SURE OF 1795 01:01:14,500 --> 01:01:15,134 BASELINE CHARACTERISTICS, 1796 01:01:15,134 --> 01:01:18,637 TREATMENT BY INTERACTION WITHIN 1797 01:01:18,637 --> 01:01:19,872 TREATMENT, SECOND SUBGROUP 1798 01:01:19,872 --> 01:01:21,073 ANALYSIS, AND THAT MODEL CAN 1799 01:01:21,073 --> 01:01:24,543 HELP YOU DETECT -- BUT THE 1800 01:01:24,543 --> 01:01:28,180 FOURTH APPROACH IS MORE THE 1801 01:01:28,180 --> 01:01:29,815 NEWER MACHINE LEARNING METHODS 1802 01:01:29,815 --> 01:01:31,350 THAT SEARCH ACROSS ALL POSSIBLE 1803 01:01:31,350 --> 01:01:33,118 COMBINATIONS OF POTENTIAL 1804 01:01:33,118 --> 01:01:34,219 PREDICTOR VARIABLES AND 1805 01:01:34,219 --> 01:01:36,422 INTERACTIONS TO PREDICT 1806 01:01:36,422 --> 01:01:38,924 VARIABILITY IN TREATMENT 1807 01:01:38,924 --> 01:01:39,258 RESPONSE. 1808 01:01:39,258 --> 01:01:42,995 NOW YOU CAN USE THE MACHINE 1809 01:01:42,995 --> 01:01:46,465 LANGUAGE YOU CAN SEE IF YOU 1810 01:01:46,465 --> 01:01:47,266 ACTUALLY PREDICT. 1811 01:01:47,266 --> 01:01:50,869 OBVIOUSLY THE KEY CHALLENGE 1812 01:01:50,869 --> 01:01:55,908 WHICH IS -- NOW I WANT TO 1813 01:01:55,908 --> 01:01:57,309 FORMALLY TALK ABOUT SUBGROUP 1814 01:01:57,309 --> 01:01:59,478 ANALYSIS, WHICH IS WHAT MOST 1815 01:01:59,478 --> 01:02:00,279 PEOPLE ACTUALLY DO. 1816 01:02:00,279 --> 01:02:01,614 IT'S THE MOST COMMONLY USED 1817 01:02:01,614 --> 01:02:04,550 APPROACH FOR EXAMINING 1818 01:02:04,550 --> 01:02:06,318 HETEROGENEITY. 1819 01:02:06,318 --> 01:02:08,487 IT DEVALUES OF TREATMENT FOR 1820 01:02:08,487 --> 01:02:11,290 SEVERAL SUBGROUPS ONE VARIABLE 1821 01:02:11,290 --> 01:02:16,161 AT A TIME, SO SUBGROUP VARIABLE 1822 01:02:16,161 --> 01:02:17,896 HAS STATISTICALLY SIGNIFICANT 1823 01:02:17,896 --> 01:02:19,765 INTERACTION WITH TREATMENT 1824 01:02:19,765 --> 01:02:20,099 INDICATOR. 1825 01:02:20,099 --> 01:02:22,935 IF THE INTERACTION IS 1826 01:02:22,935 --> 01:02:27,539 SIGNIFICANT -- SEPARATELY, SO IF 1827 01:02:27,539 --> 01:02:30,976 THERE IS AN EFFECT, AN 1828 01:02:30,976 --> 01:02:31,910 INTERACTION, TO ESTIMATE RESULTS 1829 01:02:31,910 --> 01:02:37,716 FROM DIFFERENT SUBGROUPS. 1830 01:02:37,716 --> 01:02:40,786 ALL GROUPS -- INTERACTION JUST 1831 01:02:40,786 --> 01:02:43,188 GENERALLY HAVE NO POWER TO 1832 01:02:43,188 --> 01:02:44,156 DETECT DIFFERENCES IN SUBGROUPS. 1833 01:02:44,156 --> 01:02:46,992 SO AN EXAMPLE IS IT TAKES ABOUT 1834 01:02:46,992 --> 01:02:48,761 FOUR TIMES SAMPLE SIZE TO DETECT 1835 01:02:48,761 --> 01:02:50,729 DIFFERENCE IN SUBGROUPS WHEN YOU 1836 01:02:50,729 --> 01:02:57,636 HAVE A 50/50 SPLIT. 1837 01:02:57,636 --> 01:02:58,871 16 TIMES YOU ACTUALLY HAVE A 1838 01:02:58,871 --> 01:02:59,505 DIFFERENT APPROACH. 1839 01:02:59,505 --> 01:03:01,907 SO A KEET CONSIDERATION IS AS 1840 01:03:01,907 --> 01:03:03,709 YOU DO THE SUBJECT ANALYSIS, 1841 01:03:03,709 --> 01:03:05,310 ONE, IF IT'S REALLY IMPORTANT TO 1842 01:03:05,310 --> 01:03:07,479 FIND THAT INFORMATION, THEY'LL 1843 01:03:07,479 --> 01:03:10,015 BUILD IT INTO YOUR SAMPLE SIZE 1844 01:03:10,015 --> 01:03:10,983 CALCULATION UP FRONT. 1845 01:03:10,983 --> 01:03:14,520 BUT EVEN WHEN YOU DON'T DO IT, 1846 01:03:14,520 --> 01:03:17,389 YOU CAN ALWAYS GO BACK AND TEST, 1847 01:03:17,389 --> 01:03:19,892 SO THESE ARE KIND OF THE THINGS 1848 01:03:19,892 --> 01:03:20,993 YOU DO AFTER THE STUDIES ARE 1849 01:03:20,993 --> 01:03:23,095 DONE, AND THEN IT GIVES YOU 1850 01:03:23,095 --> 01:03:24,196 INFORMATION AND POTENTIALLY HELP 1851 01:03:24,196 --> 01:03:25,631 YOU GUIDE FUTURE INTERVENTIONS 1852 01:03:25,631 --> 01:03:31,537 AS YOU MOVE FORWARD. 1853 01:03:31,537 --> 01:03:32,738 THE OTHER PART OF THIS IS 1854 01:03:32,738 --> 01:03:33,172 SECONDARY ANALYSIS. 1855 01:03:33,172 --> 01:03:34,807 DID YOU YOUR STUDY, WHETHER IT'S 1856 01:03:34,807 --> 01:03:37,209 CLINICAL TRIAL, LOTS OF DATA, 1857 01:03:37,209 --> 01:03:38,844 BUT MOST CLINICAL TRIALS 1858 01:03:38,844 --> 01:03:42,047 ACTUALLY ARE MAYBE -- NOW YOU'VE 1859 01:03:42,047 --> 01:03:44,349 COLLECTED DATA ON MOST OF THESE 1860 01:03:44,349 --> 01:03:46,485 ARE 4 TO 5 TIME POINTS, EVERY 1861 01:03:46,485 --> 01:03:48,153 THREE MONTHS FOR 12 MONTHS. 1862 01:03:48,153 --> 01:03:49,555 SOMETIMES WE GO UP TO 18 MONTHS. 1863 01:03:49,555 --> 01:03:52,224 WE HAVE ALL THIS DATA, WHAT DID 1864 01:03:52,224 --> 01:03:56,595 YOU DO WITH THAT INFORMATION. 1865 01:03:56,595 --> 01:03:58,464 YOU CAN USE CLINICAL TRIALS DATA 1866 01:03:58,464 --> 01:04:00,966 TO ANSWER ALL THOSE QUESTIONS, 1867 01:04:00,966 --> 01:04:01,867 AS LONG AS YOU ARE AWARE OF SOME 1868 01:04:01,867 --> 01:04:04,470 OF THE ISSUES THAT ARE TIED -- 1869 01:04:04,470 --> 01:04:06,905 IT'S ACTUALLY GIVES YOU A CHANCE 1870 01:04:06,905 --> 01:04:09,742 TO EXPLORE, YOU CAN USE IT FOR 1871 01:04:09,742 --> 01:04:11,276 EXPLORATORY ANALYSIS AND 1872 01:04:11,276 --> 01:04:13,479 HYPOTHESIS GENERATION. 1873 01:04:13,479 --> 01:04:15,013 SO DATA ON NEW THINGS YOU CAN 1874 01:04:15,013 --> 01:04:15,581 ACTUALLY DO. 1875 01:04:15,581 --> 01:04:18,751 IF YOU HAVE GRADUATE STUDENTS, 1876 01:04:18,751 --> 01:04:21,820 POSTDOC, MEDICAL STUDENTS, THIS 1877 01:04:21,820 --> 01:04:23,989 IS IT ON THE OPPORTUNITY TO GET 1878 01:04:23,989 --> 01:04:28,260 FEET WET IN TERMS OF DATA 1879 01:04:28,260 --> 01:04:29,261 ANALYSIS, AFTER YOU ANSWER SOME 1880 01:04:29,261 --> 01:04:30,462 PRIMARY QUESTIONS. 1881 01:04:30,462 --> 01:04:31,764 YOU HAVE SO MUCH DATA AT THE END 1882 01:04:31,764 --> 01:04:35,067 OF THE STUDY, YOU KIND OF -- 1883 01:04:35,067 --> 01:04:37,269 YOU'RE GETTING POSTDOC WHO 1884 01:04:37,269 --> 01:04:41,206 ACTUALLY SPENDS TIME DIVING IN, 1885 01:04:41,206 --> 01:04:42,107 ANSWERING QUESTIONS THAT ARE 1886 01:04:42,107 --> 01:04:42,775 REALLY INTERESTING. 1887 01:04:42,775 --> 01:04:46,411 YOU CAN ALSO USE IT AS PILOT 1888 01:04:46,411 --> 01:04:47,913 DATA FOR FUTURE GRANTS. 1889 01:04:47,913 --> 01:04:49,248 A LOT MORE EXPERIENCED PEOPLE, 1890 01:04:49,248 --> 01:04:51,216 THIS IS ONE OF THE ADVANTAGES OF 1891 01:04:51,216 --> 01:04:52,551 HAVING MORE GRANTS, BECAUSE YOU 1892 01:04:52,551 --> 01:04:54,853 ACTUALLY HAVE THIS DATA AND IT 1893 01:04:54,853 --> 01:04:58,190 GIVES YOU INSIGHT, YOU CAN LOOK 1894 01:04:58,190 --> 01:04:59,558 AT EFFECT SIZE, YOU CAN LOOK AT 1895 01:04:59,558 --> 01:05:00,092 CORRELATION BETWEEN 1896 01:05:00,092 --> 01:05:01,627 MEASUREMENTS, YOU CAN LOOK AT 1897 01:05:01,627 --> 01:05:06,031 MANY OF THE THINGS ACTUALLY -- 1898 01:05:06,031 --> 01:05:09,968 FEASIBILITY, IN TERMS OF PILOT 1899 01:05:09,968 --> 01:05:11,937 DATA FOR FUTURE GRANTS. 1900 01:05:11,937 --> 01:05:14,239 HOWEVER, CHALLENGES USING 1901 01:05:14,239 --> 01:05:16,475 CLINICAL TRIALS DATA, WHAT IS A 1902 01:05:16,475 --> 01:05:17,910 SAMPLE SIZE AND POWER MAY NOT BE 1903 01:05:17,910 --> 01:05:18,177 ADEQUATE. 1904 01:05:18,177 --> 01:05:19,945 SO IF YOU'RE ASKING QUESTIONS, 1905 01:05:19,945 --> 01:05:23,482 YOU REALLY -- IF YOU'RE LUCKY 1906 01:05:23,482 --> 01:05:24,817 AND THERE'S A SIGNIFICANT 1907 01:05:24,817 --> 01:05:25,784 DIFFERENCE, YOU'RE FINE. 1908 01:05:25,784 --> 01:05:31,924 BUT IF THERE'S NO DIFFERENCE, -- 1909 01:05:31,924 --> 01:05:35,994 DATA IS ALSO ALWAYS CORRELATED 1910 01:05:35,994 --> 01:05:40,232 ACROSS CLINICAL TRIALS, 1911 01:05:40,232 --> 01:05:41,133 MEASUREMENTS, HIGHLY CORRELATED 1912 01:05:41,133 --> 01:05:43,335 SO YOU NEED TO USE APPROPRIATE 1913 01:05:43,335 --> 01:05:44,203 STATISTICAL TESTS. 1914 01:05:44,203 --> 01:05:46,471 IT'S NOT SUFFICIENT TO DO 1915 01:05:46,471 --> 01:05:47,206 CROSS-SECTION ANALYSIS BECAUSE 1916 01:05:47,206 --> 01:05:48,607 AT THIS POINT IN TIME, THE 1917 01:05:48,607 --> 01:05:55,714 MEASUREMENTS ARE CORE -- THE 1918 01:05:55,714 --> 01:05:57,049 EXPERIENCE WITH DATA ANALYSIS IS 1919 01:05:57,049 --> 01:05:57,716 REALLY IMPORTANT. 1920 01:05:57,716 --> 01:06:00,319 YOU ALSO NEED TO ACCOUNT FOR 1921 01:06:00,319 --> 01:06:05,057 RANDOMIZATION AND GREURP 1922 01:06:05,057 --> 01:06:06,258 RANDOMIZATION AND GROUP 1923 01:06:06,258 --> 01:06:06,692 ASSIGNMENT. 1924 01:06:06,692 --> 01:06:08,327 WHEN WE HAVE DONE THAT ANALYSIS, 1925 01:06:08,327 --> 01:06:10,262 YOU HAVE TO ASK YOURSELF, HOW DO 1926 01:06:10,262 --> 01:06:12,130 I ACCOUNT FOR TREATMENT 1927 01:06:12,130 --> 01:06:13,232 ASSIGNMENT, HOW DO I ACCOUNT FOR 1928 01:06:13,232 --> 01:06:13,866 TIME? 1929 01:06:13,866 --> 01:06:15,267 ALL OF THESE PIECES ARE TO 1930 01:06:15,267 --> 01:06:16,368 BECOME USEFUL. 1931 01:06:16,368 --> 01:06:17,903 THAT'S WHY YOUR TEAM NEEDS 1932 01:06:17,903 --> 01:06:19,771 SOMEONE WITH EXPERIENCE DOING 1933 01:06:19,771 --> 01:06:21,740 THIS TYPE OF ANALYSIS TO HELP 1934 01:06:21,740 --> 01:06:24,109 YOU DO THAT. 1935 01:06:24,109 --> 01:06:32,985 YOUR WAYS ONCE YOU STARTLOOKINGY 1936 01:06:32,985 --> 01:06:33,986 NEED TO DO SELECTION BIAS. 1937 01:06:33,986 --> 01:06:36,488 THERE ARE ISSUES ABOUT NOT 1938 01:06:36,488 --> 01:06:39,725 EVERYONE WHO IS APPROACHED TO 1939 01:06:39,725 --> 01:06:40,359 PARTICIPATE IN CLINICAL TRIAL, 1940 01:06:40,359 --> 01:06:42,060 YOU HAVE A VERY SELECT GROUP OF 1941 01:06:42,060 --> 01:06:43,228 HIGHLY MOTIVATED INDIVIDUALS, SO 1942 01:06:43,228 --> 01:06:45,597 YOU HAVE TO ACCOUNT FOR THAT 1943 01:06:45,597 --> 01:06:46,465 SELECTION IN THAT CASE. 1944 01:06:46,465 --> 01:06:48,200 YOU ALSO HAVE TO LOOK AT 1945 01:06:48,200 --> 01:06:49,668 INTERNAL VERSUS EXTERNAL 1946 01:06:49,668 --> 01:06:50,102 VALIDITY. 1947 01:06:50,102 --> 01:06:51,303 THIS IS A GROUP OF INDIVIDUALS 1948 01:06:51,303 --> 01:06:56,675 WHO WERE SELECTED FOR -- NOW 1949 01:06:56,675 --> 01:06:58,076 HOW -- AND SOME OF THIS 1950 01:06:58,076 --> 01:06:59,645 ACCOUNTED FOR, ESPECIALLY WHEN 1951 01:06:59,645 --> 01:07:04,016 YOU'RE PRESENTING, YOU ARE 1952 01:07:04,016 --> 01:07:07,519 PUBLISHING THEM, BEING CLEAR AND 1953 01:07:07,519 --> 01:07:08,453 TRANSPARENT ABOUT THE TYPE OF 1954 01:07:08,453 --> 01:07:10,489 DATA YOU HAVE IS IMPORTANT. 1955 01:07:10,489 --> 01:07:12,658 YOU MAY ALSO NEED TO ACCOUNT FOR 1956 01:07:12,658 --> 01:07:13,325 MULTIPLICITY OF TESTING. 1957 01:07:13,325 --> 01:07:16,295 THIS IS REALLY -- IF YOU'RE NOT 1958 01:07:16,295 --> 01:07:19,598 CAREFUL, IT BECOMES A FISHING 1959 01:07:19,598 --> 01:07:24,403 EXPEDITION, BUILD IN RIGOROUS -- 1960 01:07:24,403 --> 01:07:26,805 HOW LIKELY IS THIS APPROACH -- 1961 01:07:26,805 --> 01:07:28,640 WHAT IS RANDOM, WHAT IS ACTUALLY 1962 01:07:28,640 --> 01:07:31,610 JUST ERROR, SO ACTUALLY BUILDING 1963 01:07:31,610 --> 01:07:33,845 THE RIGHT KIND OF MODELS WILL BE 1964 01:07:33,845 --> 01:07:35,580 VERY HELPFUL. 1965 01:07:35,580 --> 01:07:39,251 THEN MEARN TIMES MANY TIMES YOUE 1966 01:07:39,251 --> 01:07:41,653 MULTIPLE CLINICAL TRIALS DATA, 1967 01:07:41,653 --> 01:07:43,288 FROM MULTIPLE CLINICAL TRIALS, 1968 01:07:43,288 --> 01:07:45,724 INCREASED SAMPLE SIZE. 1969 01:07:45,724 --> 01:07:49,661 SO SYSTEMATIC -- SYSTEMATIC 1970 01:07:49,661 --> 01:07:52,164 REVIEWS, IF YOU'RE DOING -- IF 1971 01:07:52,164 --> 01:07:54,366 YOU'RE ACTUALLY ABLE TO -- FOR 1972 01:07:54,366 --> 01:07:55,300 MULTIPLE -- YOU CAN INCREASE 1973 01:07:55,300 --> 01:08:00,505 YOUR SAMPLE SIZE AND -- TO DO 1974 01:08:00,505 --> 01:08:03,442 MORE INTEREST -- ANALYSIS, AFTER 1975 01:08:03,442 --> 01:08:08,480 THE DATA IS AVAILABLE. 1976 01:08:08,480 --> 01:08:12,084 WHAT THEN DO YOU DO NOW THAT -- 1977 01:08:12,084 --> 01:08:14,052 HOW DO YOU INCORPORATE YOUR 1978 01:08:14,052 --> 01:08:15,253 LESSONS LEARNED INTO FUTURE 1979 01:08:15,253 --> 01:08:15,687 STUDIES? 1980 01:08:15,687 --> 01:08:18,323 FIRST QUESTION YOU HAVE TO ASK 1981 01:08:18,323 --> 01:08:21,393 IS WHAT NEEDS TO CHANGE BASED ON 1982 01:08:21,393 --> 01:08:22,361 YOUR EXPERIENCE? 1983 01:08:22,361 --> 01:08:23,161 MULTIPLE THINGS YOU LEARNED FROM 1984 01:08:23,161 --> 01:08:29,067 THIS, FROM YOUR PROCESS 1985 01:08:29,067 --> 01:08:33,572 EVALUATION, SECONDARY ANALYSIS, 1986 01:08:33,572 --> 01:08:34,573 HETEROGENEITY, HOW DO YOU BUILD 1987 01:08:34,573 --> 01:08:36,108 THAT INTO FUTURE STUDIES. 1988 01:08:36,108 --> 01:08:36,875 THE NEXT QUESTION IS WHERE DO 1989 01:08:36,875 --> 01:08:39,277 YOU INVEST RESOURCES TO BOLSTER 1990 01:08:39,277 --> 01:08:40,379 FUTURE RECRUITMENT EFFORTS? 1991 01:08:40,379 --> 01:08:44,783 SO YOU FIND THINGS THAT -- USING 1992 01:08:44,783 --> 01:08:46,318 BEST RESOURCES, AND HOW DO YOU 1993 01:08:46,318 --> 01:08:49,154 LEVERAGE THE PARTICIPATE TO 1994 01:08:49,154 --> 01:08:51,890 BUILD WORD OF MOUTH FOR FUTURE 1995 01:08:51,890 --> 01:08:52,357 STUDIES? 1996 01:08:52,357 --> 01:08:54,526 WE FIND A LOT OF OUR STUDIES, 1997 01:08:54,526 --> 01:08:55,961 BECAUSE OF GOODWILL THAT WAS 1998 01:08:55,961 --> 01:08:57,195 GENERATED, WE ACTUALLY GET 1999 01:08:57,195 --> 01:08:59,531 PEOPLE SAY OH, SOMEONE FROM ONE 2000 01:08:59,531 --> 01:09:00,699 OF THE STUDIES ACTUALLY HEARD 2001 01:09:00,699 --> 01:09:02,034 ABOUT YOUR TEAM FROM A STUDY 2002 01:09:02,034 --> 01:09:07,739 THAT YOU PARTICIPATED IN. 2003 01:09:07,739 --> 01:09:09,574 SO LEVERAGING THAT IS ACTUALLY 2004 01:09:09,574 --> 01:09:10,909 VERY IMPORTANT. 2005 01:09:10,909 --> 01:09:12,878 WE TEND TO DO WHAT WE CALL THE 2006 01:09:12,878 --> 01:09:13,645 COMMUNITY REPORT-OUT. 2007 01:09:13,645 --> 01:09:15,414 AFTER THE STUDY IS DONE, YOUR 2008 01:09:15,414 --> 01:09:18,784 RESULTS ARE AVAILABLE, WE INVITE 2009 01:09:18,784 --> 01:09:19,785 ALL THOSE THAT WERE IN THE STUDY 2010 01:09:19,785 --> 01:09:22,721 AND WE ALSO INVITE FOR THE 2011 01:09:22,721 --> 01:09:24,623 STAKEHOLDERS COMMUNITY PARTNERS 2012 01:09:24,623 --> 01:09:27,592 AND WE PROVIDE -- TO SHARE -- 2013 01:09:27,592 --> 01:09:29,995 IT'S REALLY IMPORTANT IN GETTING 2014 01:09:29,995 --> 01:09:32,197 FEEDBACK AND CLOSING DOWN THE 2015 01:09:32,197 --> 01:09:33,265 STUDY AND COMPLETION. 2016 01:09:33,265 --> 01:09:36,368 AND THEN HOW DO YOU USE YOUR 2017 01:09:36,368 --> 01:09:38,770 EXPERIENCE TO MODIFY A BUDGET 2018 01:09:38,770 --> 01:09:39,738 AND RESOURCE ALLOCATION FOR 2019 01:09:39,738 --> 01:09:40,672 FUTURE STUDIES? 2020 01:09:40,672 --> 01:09:42,074 LIKE I SAID, FOR THOSE 2021 01:09:42,074 --> 01:09:42,741 PARTICIPATING IN CLINICAL 2022 01:09:42,741 --> 01:09:44,976 TRIALS, NO MATTER HOW EFFICIENT 2023 01:09:44,976 --> 01:09:46,611 YOU ARE, YOU TEND TO 2024 01:09:46,611 --> 01:09:47,579 UNDERESTIMATE THE TRUE COST OF 2025 01:09:47,579 --> 01:09:48,547 THE STUDY. 2026 01:09:48,547 --> 01:09:49,848 THERE'S SO MUCH THAT HAPPENS AND 2027 01:09:49,848 --> 01:09:53,685 YOU ACTUALLY CANNOT ACCOUNT FOR. 2028 01:09:53,685 --> 01:10:01,259 SO WE CAN GO BACK -- WHERE DID 2029 01:10:01,259 --> 01:10:02,894 WE OVERSPEND, WHERE DID WE 2030 01:10:02,894 --> 01:10:05,030 UNDERSPEND, THAT ALLOWS US TO 2031 01:10:05,030 --> 01:10:06,998 DEFINE THE BUDGET. 2032 01:10:06,998 --> 01:10:08,166 TRANSPORTATION IS -- ESPECIALLY 2033 01:10:08,166 --> 01:10:10,735 IF YOU DO COMMUNITY -BASED WORK, 2034 01:10:10,735 --> 01:10:11,837 PARTNERS, HOW DO YOU KEEP 2035 01:10:11,837 --> 01:10:13,238 PARTNERS ENGAGED, SO ALL OF 2036 01:10:13,238 --> 01:10:14,573 THESE PARTNERS NEED TO BE 2037 01:10:14,573 --> 01:10:18,210 ACCOUNTED FOR AND IN FUTURE 2038 01:10:18,210 --> 01:10:19,644 STUDIES -- TO HELP YOU. 2039 01:10:19,644 --> 01:10:21,179 SO I THINK THIS IS MY LAST 2040 01:10:21,179 --> 01:10:21,613 SLIDE. 2041 01:10:21,613 --> 01:10:23,482 THESE ARE MY REFERENCES. 2042 01:10:23,482 --> 01:10:26,118 BUT I HOPE THIS INFORMATION IS 2043 01:10:26,118 --> 01:10:28,620 HELPFUL AS PEOPLE ACTUALLY START 2044 01:10:28,620 --> 01:10:30,422 TO THINK ABOUT WHAT TO DO WHEN 2045 01:10:30,422 --> 01:10:31,523 THE STUDIES ARE OVER. 2046 01:10:31,523 --> 01:10:31,823 THANK YOU. 2047 01:10:31,823 --> 01:10:35,460 >> THANK YOU SO MUCH, DR. EGEDE. 2048 01:10:35,460 --> 01:10:37,829 I THINK YOU PROVIDED REALLY 2049 01:10:37,829 --> 01:10:39,464 EXCELLENT INFORMATION AND 2050 01:10:39,464 --> 01:10:40,899 CONSIDERATIONS AND REALLY 2051 01:10:40,899 --> 01:10:42,667 INSIGHTFUL. 2052 01:10:42,667 --> 01:10:47,472 I THINK I ECHO THE CHAT COMMENTS 2053 01:10:47,472 --> 01:10:48,740 THAT THIS HAS BEEN REALLY 2054 01:10:48,740 --> 01:10:52,811 HELPFUL AND PEOPLE ARE THINKING 2055 01:10:52,811 --> 01:10:53,778 ALL THE SPEAKERS. 2056 01:10:53,778 --> 01:10:55,747 NOW WE DO HAVE DEDICATED TIME 2057 01:10:55,747 --> 01:11:00,685 FOR QUESTIONS AND ANSWERS. 2058 01:11:00,685 --> 01:11:02,220 I BELIEVE WE STILL HAVE ABOUT 15 2059 01:11:02,220 --> 01:11:02,988 TO 20 MINUTES LEFT. 2060 01:11:02,988 --> 01:11:06,791 I'M NOT SURE IF WE NEED TO PUT 2061 01:11:06,791 --> 01:11:09,961 UP THE INFORMATION ABOUT HOW TO 2062 01:11:09,961 --> 01:11:11,296 SUBMIT SOME QUESTIONS, I THINK 2063 01:11:11,296 --> 01:11:12,464 THROUGHOUT THE DISCUSSION AND 2064 01:11:12,464 --> 01:11:13,365 THROUGHOUT THE PRESENTATIONS, 2065 01:11:13,365 --> 01:11:14,432 THERE HAVE BEEN QUESTIONS COMING 2066 01:11:14,432 --> 01:11:16,835 IN. 2067 01:11:16,835 --> 01:11:17,936 OH, YES, HERE. 2068 01:11:17,936 --> 01:11:21,640 AND AGAIN, IF THERE -- THERE ARE 2069 01:11:21,640 --> 01:11:22,407 SEVERAL WAYS TO COMMIT 2070 01:11:22,407 --> 01:11:22,741 QUESTIONS. 2071 01:11:22,741 --> 01:11:24,476 YOU CAN RAISE YOUR HAND, 2072 01:11:24,476 --> 01:11:27,512 OBVIOUSLY ENTER IN THE CHAT OR 2073 01:11:27,512 --> 01:11:29,915 EMAIL THE ADDRESS HERE. 2074 01:11:29,915 --> 01:11:32,651 AND FOR THOSE WHO ARE VIEWING ON 2075 01:11:32,651 --> 01:11:34,519 VIDEOCAST, THEY CAN CLICK THE 2076 01:11:34,519 --> 01:11:35,720 LIVE FEEDBACK BUTTON. 2077 01:11:35,720 --> 01:11:38,990 I'M ACTUALLY GOING TO START WITH 2078 01:11:38,990 --> 01:11:41,159 ONE QUESTION, AND I THINK, 2079 01:11:41,159 --> 01:11:42,027 DR. EGEDE, YOU'VE SORT OF 2080 01:11:42,027 --> 01:11:43,228 TOUCHED ON THIS, BUT I THINK IT 2081 01:11:43,228 --> 01:11:44,863 WOULD BE HELPFUL FOR ALL THE 2082 01:11:44,863 --> 01:11:46,264 SPEAKERS TO SPEAK TO THIS. 2083 01:11:46,264 --> 01:11:47,799 YOU KNOW, THERE'S AN OBLIGATION 2084 01:11:47,799 --> 01:11:49,768 FOR RESEARCH FINDINGS TO BE MADE 2085 01:11:49,768 --> 01:11:51,937 AVAILABLE TO STUDY PARTICIPANTS. 2086 01:11:51,937 --> 01:11:53,672 AND THEN, YOU KNOW, TO GENERALLY 2087 01:11:53,672 --> 01:11:55,307 BE KEPT INFORMED ABOUT THE 2088 01:11:55,307 --> 01:11:58,343 OUTCOMES OF THE RESEARCH THEY 2089 01:11:58,343 --> 01:11:58,910 CONTRIBUTED TOWARDS. 2090 01:11:58,910 --> 01:12:02,681 SO WOULD YOU BE ABLE TO DESCRIBE 2091 01:12:02,681 --> 01:12:05,750 HOW INVESTIGATORS COULD 2092 01:12:05,750 --> 01:12:07,085 SUCCESSFULLY ACHIEVE THIS 2093 01:12:07,085 --> 01:12:07,686 DISSEMINATION PROCESS AND IF 2094 01:12:07,686 --> 01:12:09,888 THERE ARE ANY SORT OF CHALLENGES 2095 01:12:09,888 --> 01:12:11,856 AND BARRIERS TO DISSEMINATING 2096 01:12:11,856 --> 01:12:17,429 RESEARCH FINDINGS TO A DIVERSE E 2097 01:12:17,429 --> 01:12:27,639 POPULATIONS? 2098 01:12:29,441 --> 01:12:33,078 >> I CAN START AND THEN LET 2099 01:12:33,078 --> 01:12:36,248 OTHERS WEIGH. 2100 01:12:36,248 --> 01:12:39,084 SO I THINK TRADITIONAL 2101 01:12:39,084 --> 01:12:40,151 APPROACHES, PUBLICATIONS IN 2102 01:12:40,151 --> 01:12:41,920 JOURNALS, IS IMPORTANT. 2103 01:12:41,920 --> 01:12:42,787 ESSENTIALLY THIS COMMUNITY TENDS 2104 01:12:42,787 --> 01:12:44,189 TO GO TO JOURNALS TO FIND 2105 01:12:44,189 --> 01:12:48,059 INFORMATION. 2106 01:12:48,059 --> 01:12:49,327 RIGHT NOW THE COMMUNITY DOES NOT 2107 01:12:49,327 --> 01:12:56,334 RECENOTREAD JOURNALS, SO HOW DOT 2108 01:12:56,334 --> 01:12:57,202 THIS INFORMATION TO PEOPLE WHO 2109 01:12:57,202 --> 01:12:59,070 MAY NOT BE SCIENTIFICALLY 2110 01:12:59,070 --> 01:13:00,805 ORIENTED, BUT ALSO OUR POLICY 2111 01:13:00,805 --> 01:13:01,906 MAKERS MANY TIMES ARE NOT GOING 2112 01:13:01,906 --> 01:13:04,843 TO SPEND THE TIME TO REALLY DIVE 2113 01:13:04,843 --> 01:13:06,244 THROUGH, YOU KNOW, A SCIENTIFIC 2114 01:13:06,244 --> 01:13:06,578 PAPER. 2115 01:13:06,578 --> 01:13:08,013 SO HOW DO WE ACTUALLY TAKE THIS 2116 01:13:08,013 --> 01:13:10,749 INFORMATION AND BREAK IT DOWN 2117 01:13:10,749 --> 01:13:13,685 INTO MESSAGING THAT ACTUALLY IS 2118 01:13:13,685 --> 01:13:14,319 EASY TO INGEST? 2119 01:13:14,319 --> 01:13:15,320 AND I THINK THAT'S WHERE THE 2120 01:13:15,320 --> 01:13:18,823 SKILL IN TERMS OF GETTING 2121 01:13:18,823 --> 01:13:20,458 INFORMATION ON THIS, SO WE ARE 2122 01:13:20,458 --> 01:13:21,559 BEGINNING TO RECOGNIZE NOW THE 2123 01:13:21,559 --> 01:13:22,527 POLICY REALLY MATTERS. 2124 01:13:22,527 --> 01:13:23,528 I THINK EVERYBODY HAS ALWAYS 2125 01:13:23,528 --> 01:13:24,195 KNOWN THIS. 2126 01:13:24,195 --> 01:13:27,599 YOU PUBLISH ALL THESE PAPERS, 2127 01:13:27,599 --> 01:13:29,100 HOW DO WE GET THIS INFORMATION 2128 01:13:29,100 --> 01:13:32,137 TO COMMUNITY MEMBERS AND TO 2129 01:13:32,137 --> 01:13:32,804 PARTICIPANT MEMBERS, SO 2130 01:13:32,804 --> 01:13:36,541 DIFFERENT STRATEGIES, I THINK, 2131 01:13:36,541 --> 01:13:37,742 SOMEONE ELSE MAY WANT TO WEIGH 2132 01:13:37,742 --> 01:13:39,344 IN ON THIS BUT I THINK THERE ARE 2133 01:13:39,344 --> 01:13:40,779 DIFFERENT STRATEGIES. 2134 01:13:40,779 --> 01:13:44,182 WE DO WHITE PAPERS, WE DO 2135 01:13:44,182 --> 01:13:45,684 BRIEFINGS, AND THAT WAY WE GET 2136 01:13:45,684 --> 01:13:47,452 FEEDBACK FROM PARTICIPANTS, WE 2137 01:13:47,452 --> 01:13:48,753 GET FEEDBACK FROM COMMUNITY 2138 01:13:48,753 --> 01:13:50,221 MEMBERS, WE ALSO GET THIS OUT TO 2139 01:13:50,221 --> 01:13:51,756 POLICY MAKERS WHO ACTUALLY CAN 2140 01:13:51,756 --> 01:13:53,425 THEN USE THAT INFORMATION IN A 2141 01:13:53,425 --> 01:13:55,627 WAY THAT IS MEANINGFUL. 2142 01:13:55,627 --> 01:13:59,297 >> CAN I ALSO FOLLOW UP ON THAT, 2143 01:13:59,297 --> 01:14:00,965 ACTUALLY I LEARNED THIS FROM MY 2144 01:14:00,965 --> 01:14:03,134 MENTOR PROBABLY 15 YEARS AGO, 20 2145 01:14:03,134 --> 01:14:05,337 YEARS AGO. 2146 01:14:05,337 --> 01:14:10,041 HE ALWAYS, WHEN WE FINISHED A 2147 01:14:10,041 --> 01:14:12,811 TRIAL, WE WOULD PREPARE A 2148 01:14:12,811 --> 01:14:15,647 VERY -- A SHORT LETTER WITH A 2149 01:14:15,647 --> 01:14:18,116 VERY LAY LANGUAGE WITH THE 2150 01:14:18,116 --> 01:14:20,418 RESULTS OF THE STUDY AND WE SEND 2151 01:14:20,418 --> 01:14:23,254 TO ALL PARTICIPANTS. 2152 01:14:23,254 --> 01:14:25,190 THIS IS ONE THING WE DO. 2153 01:14:25,190 --> 01:14:26,958 BUT SOMETIMES WHEN THE STUDY 2154 01:14:26,958 --> 01:14:32,931 ENDS, YOU DON'T HAVE RESOURCES, 2155 01:14:32,931 --> 01:14:35,266 WHICH I'M GOING TO GO TO 2156 01:14:35,266 --> 01:14:38,103 DR. DOMINGO ABOUT THE RESOURCES 2157 01:14:38,103 --> 01:14:39,003 HERE, IT'S NOT IN THE BUDGET TO 2158 01:14:39,003 --> 01:14:41,339 DO THAT, BUT HE USED TO FIND THE 2159 01:14:41,339 --> 01:14:42,607 RESOURCES AND WE FOLLOWED HIM TO 2160 01:14:42,607 --> 01:14:45,744 DO THAT. 2161 01:14:45,744 --> 01:14:47,278 THE SECOND THING, WE DO MOST OF 2162 01:14:47,278 --> 01:14:49,447 OUR STUDIES, WE HAVE A COMMUNITY 2163 01:14:49,447 --> 01:14:49,881 ADVISORY BOARD. 2164 01:14:49,881 --> 01:14:52,384 SO WE GO BACK AND MEET WITH THE 2165 01:14:52,384 --> 01:14:54,018 COMMUNITY ADVISORY BOARD AND LET 2166 01:14:54,018 --> 01:14:58,690 THEM KNOW ABOUT THE FINDINGS 2167 01:14:58,690 --> 01:14:59,824 BECAUSE THEY WERE THE ONES LIKE 2168 01:14:59,824 --> 01:15:01,025 THE GATE KEEPERS THAT HELPED US 2169 01:15:01,025 --> 01:15:05,296 TO GET THE WORD OUT TO OUR 2170 01:15:05,296 --> 01:15:08,566 PARTICIPANTS OR PATIENT POOLS. 2171 01:15:08,566 --> 01:15:11,736 AND THEN WE TRY SOMETIMES IF WE 2172 01:15:11,736 --> 01:15:14,372 HAVE TOWN HALL MEETINGS IN OUR 2173 01:15:14,372 --> 01:15:16,541 COMMUNITY ENGAGEMENT ACTIVITIES, 2174 01:15:16,541 --> 01:15:19,043 WE ALSO TALK ABOUT FINDINGS OF 2175 01:15:19,043 --> 01:15:22,113 OUR CLINICAL TRIALS. 2176 01:15:22,113 --> 01:15:25,150 BUT THE DIRECT LETTER TO THOSE 2177 01:15:25,150 --> 01:15:26,017 PARTICIPANTS, I ALWAYS FOUND TO 2178 01:15:26,017 --> 01:15:27,786 BE VERY, VERY GOOD AND A LOT OF 2179 01:15:27,786 --> 01:15:28,987 THEM SEND US BACK AND SAY THANK 2180 01:15:28,987 --> 01:15:31,356 YOU FOR LETTING US KNOW THE 2181 01:15:31,356 --> 01:15:33,024 RESULTS OF WHAT WE PARTICIPATED 2182 01:15:33,024 --> 01:15:39,164 IN, WHAT WE CONTRIBUTED TO. 2183 01:15:39,164 --> 01:15:41,633 >> AND I WOULD JUST SAY, SO 2184 01:15:41,633 --> 01:15:44,169 WHILE WE DIDN'T ADDRESS IT 2185 01:15:44,169 --> 01:15:47,338 SPECIFICALLY IN THE REPORT, WHAT 2186 01:15:47,338 --> 01:15:51,910 THE REPORT FOCUSES ON IS THE -- 2187 01:15:51,910 --> 01:15:54,979 IF WE COULD IMAGINE THE IDEAL 2188 01:15:54,979 --> 01:15:58,383 WORLD WHERE THERE IS AN ONGOING 2189 01:15:58,383 --> 01:15:59,150 BIDIRECTIONAL COMMUNICATION 2190 01:15:59,150 --> 01:15:59,851 BETWEEN PEOPLE IN COMMUNITIES 2191 01:15:59,851 --> 01:16:01,319 WHO ARE PARTICIPATING IN STUDIES 2192 01:16:01,319 --> 01:16:03,254 AND STUDY INVESTIGATORS, THAT 2193 01:16:03,254 --> 01:16:07,525 IT'S DONE IN AN EQUITABLE WAY, 2194 01:16:07,525 --> 01:16:08,726 THAT -- AND THAT WE ARE THINKING 2195 01:16:08,726 --> 01:16:09,694 ABOUT THE TYPES OF 2196 01:16:09,694 --> 01:16:11,129 INFRASTRUCTURE TO SUPPORT THIS 2197 01:16:11,129 --> 01:16:14,399 WORK THAT FUNDERS CONTRIBUTE TO, 2198 01:16:14,399 --> 01:16:15,166 INVESTIGATORS CONTRIBUTE TO, 2199 01:16:15,166 --> 01:16:16,034 COMMUNITY MEMBERS CONTRIBUTE TO, 2200 01:16:16,034 --> 01:16:18,002 AND THAT IT DOESN'T GO JUST 2201 01:16:18,002 --> 01:16:21,272 STUDY TO STUDY BUT THAT THIS IS 2202 01:16:21,272 --> 01:16:22,273 SOME BIDIRECTIONAL WAY OF 2203 01:16:22,273 --> 01:16:25,543 COMMUNICATING STUDY FINDINGS 2204 01:16:25,543 --> 01:16:28,046 THAT EXISTS ACROSS MULTIPLE 2205 01:16:28,046 --> 01:16:29,481 STUDIES, NOT JUST STUDY TO 2206 01:16:29,481 --> 01:16:35,086 STUDY. 2207 01:16:35,086 --> 01:16:36,354 >> GREAT, THANK YOU. 2208 01:16:36,354 --> 01:16:38,122 I'M GOING TO TURN THIS OVER TO 2209 01:16:38,122 --> 01:16:38,656 MY COLLEAGUE JARRETT. 2210 01:16:38,656 --> 01:16:39,858 I THINK THERE HAVE BEEN SEVERAL 2211 01:16:39,858 --> 01:16:43,928 QUESTIONS IN THE CHAT. 2212 01:16:43,928 --> 01:16:44,996 >> SURE. 2213 01:16:44,996 --> 01:16:45,663 THANKS, KATRINA. 2214 01:16:45,663 --> 01:16:47,198 AGAIN, I'LL JUST SAY TO ALL THE 2215 01:16:47,198 --> 01:16:50,902 SPEAKERS, THANK YOU SO MUCH. 2216 01:16:50,902 --> 01:16:52,203 IT BEEN VERY INSIGHTFUL. 2217 01:16:52,203 --> 01:16:56,474 SO OUR FIRST QUESTION IS FOR DR. 2218 01:16:56,474 --> 01:17:00,411 LET ME JUST NAVIGATE PROPERLY TO 2219 01:17:00,411 --> 01:17:04,115 MAKE SURE -- OKAY, SO THIS 2220 01:17:04,115 --> 01:17:05,984 QUESTION SENT FROM THE AUDIENCE 2221 01:17:05,984 --> 01:17:08,953 SAYS, IS THERE STILL MOVEMENT TO 2222 01:17:08,953 --> 01:17:10,255 INCLUDE GENDER IDENTITY IN OUR 2223 01:17:10,255 --> 01:17:10,822 REPORTING? 2224 01:17:10,822 --> 01:17:13,658 FROM MY EXPERIENCE, THERE'S AN 2225 01:17:13,658 --> 01:17:15,960 UNDERREPRESENTATION OF 2226 01:17:15,960 --> 01:17:17,195 TRANSGENDER INDIVIDUALS, 2227 01:17:17,195 --> 01:17:20,865 ESPECIALLY IN PHASE 1 STUDIES 2228 01:17:20,865 --> 01:17:22,100 WHERE OVERNIGHT HOUSE IS 2229 01:17:22,100 --> 01:17:22,500 REQUIRED. 2230 01:17:22,500 --> 01:17:26,437 I'VE LONG WONDERED IF WE'RE 2231 01:17:26,437 --> 01:17:27,972 BEING -- I'M SORRY -- I'VE LONG 2232 01:17:27,972 --> 01:17:32,977 WONDERED IF WE ARE MISSING BEING 2233 01:17:32,977 --> 01:17:35,480 INCLUSIVE OF A HISTORICALLY 2234 01:17:35,480 --> 01:17:36,381 HIDDEN POPULATION. 2235 01:17:36,381 --> 01:17:37,348 HOPEFULLY THAT CAME ACROSS CLEAR 2236 01:17:37,348 --> 01:17:39,484 TO YOU, DR. BIBBINS-DOMINGO. 2237 01:17:39,484 --> 01:17:40,418 >> THANK YOU FOR THAT QUESTION. 2238 01:17:40,418 --> 01:17:41,586 ONE OF THE THINGS THAT WE NOTED 2239 01:17:41,586 --> 01:17:44,789 AT THE OUTSET IN THIS COMMITTEE 2240 01:17:44,789 --> 01:17:47,525 REPORT IS THAT OUR CHARGE WAS TO 2241 01:17:47,525 --> 01:17:49,260 LOOK AT THE REPRESENTATION FOR 2242 01:17:49,260 --> 01:17:50,695 RACIAL AND ETHNIC MINORITIES AND 2243 01:17:50,695 --> 01:17:50,995 WOMEN. 2244 01:17:50,995 --> 01:17:53,531 THAT WAS THE CHARGE. 2245 01:17:53,531 --> 01:17:55,366 WHAT WE DID NOTE, WE SPENT A LOT 2246 01:17:55,366 --> 01:17:57,268 OF TIME AS A COMMITTEE THINKING 2247 01:17:57,268 --> 01:17:59,971 ABOUT THE MANY POPULATIONS THAT 2248 01:17:59,971 --> 01:18:01,272 ARE UNDERREPRESENTED IN 2249 01:18:01,272 --> 01:18:02,240 RESEARCH. 2250 01:18:02,240 --> 01:18:04,642 AND THAT WE WANTED TO NOTE THAT 2251 01:18:04,642 --> 01:18:08,913 SOME OF THE PRINCIPLES THAT WE 2252 01:18:08,913 --> 01:18:10,448 OUTLINED IN THIS REPORT DO APPLY 2253 01:18:10,448 --> 01:18:12,717 TO A NUMBER OF OTHER 2254 01:18:12,717 --> 01:18:14,819 UNDERREPRESENTED POPULATIONS, 2255 01:18:14,819 --> 01:18:16,120 INCLUDING SEXUAL AND GENDER 2256 01:18:16,120 --> 01:18:17,555 MINORITY POPULATIONS, WHAT THE 2257 01:18:17,555 --> 01:18:18,523 QUESTION IS REFERENCING. 2258 01:18:18,523 --> 01:18:19,724 WE DIDN'T FEEL WE COULD DO 2259 01:18:19,724 --> 01:18:20,925 JUSTICE TO BROADEN THE SCOPE OF 2260 01:18:20,925 --> 01:18:22,126 OUR REPORT BY TALKING ABOUT ALL 2261 01:18:22,126 --> 01:18:24,429 THESE GROUPS BECAUSE 2262 01:18:24,429 --> 01:18:25,863 CONSIDERATIONS ARE DIFFERENT FOR 2263 01:18:25,863 --> 01:18:29,033 EACH, BUT THE GENERAL PRINCIPLE 2264 01:18:29,033 --> 01:18:30,902 OF THE IMPORTANCE OF THESE 2265 01:18:30,902 --> 01:18:32,637 POPULATIONS, THE IMPORTANCE OF 2266 01:18:32,637 --> 01:18:35,807 DOING ONGOING ENGAGEMENT WERE 2267 01:18:35,807 --> 01:18:37,342 THERE, AND SO THAT'S A COMMENT 2268 01:18:37,342 --> 01:18:38,543 WE MAKE IN THIS REPORT. 2269 01:18:38,543 --> 01:18:40,178 FOR THE OTHER SPECIFIC THING 2270 01:18:40,178 --> 01:18:41,613 THAT YOU MENTION, I THINK IT'S 2271 01:18:41,613 --> 01:18:45,216 REALLY STRIKING HOW MUCH DATA 2272 01:18:45,216 --> 01:18:46,884 COLLECTION IS, OF COURSE, NOT 2273 01:18:46,884 --> 01:18:49,053 THE END RESULT BUT IT IS AN 2274 01:18:49,053 --> 01:18:50,154 ESSENTIAL ELEMENT FOR KNOWING 2275 01:18:50,154 --> 01:18:51,990 WHETHER WE'RE MAKING PROGRESS, 2276 01:18:51,990 --> 01:18:55,393 HOW WE UNDERSTAND WHAT 2277 01:18:55,393 --> 01:18:56,127 REPRESENTATION MEANS, AND WHAT 2278 01:18:56,127 --> 01:18:57,695 WAS REALLY STRIKING TO US AS A 2279 01:18:57,695 --> 01:18:58,997 COMMITTEE IS THAT WE COULDN'T 2280 01:18:58,997 --> 01:19:02,700 REALLY EVEN MEASURE PROGRESS ON 2281 01:19:02,700 --> 01:19:04,268 REPORTING FOR RACIAL AND ETHNIC 2282 01:19:04,268 --> 01:19:07,205 MINORITIES FOR WOMEN IN STUDIES, 2283 01:19:07,205 --> 01:19:08,640 AND THOSE ARE ONES WHERE WE'VE 2284 01:19:08,640 --> 01:19:10,508 HAD CRITERIA FOR REPORTING FOR 2285 01:19:10,508 --> 01:19:13,444 QUITE SOME TIME, AND IF WE DON'T 2286 01:19:13,444 --> 01:19:15,313 HAVE DATA COLLECTED AND 2287 01:19:15,313 --> 01:19:18,483 CONSISTENT REPORTING ON THOSE TO 2288 01:19:18,483 --> 01:19:19,584 UNDERSTAND REPRESENTATION IN 2289 01:19:19,584 --> 01:19:22,987 STUDIES, WE ARE CERTAINLY 2290 01:19:22,987 --> 01:19:23,988 LACKING THAT FOR OTHERS, AND I 2291 01:19:23,988 --> 01:19:25,757 THINK FOR SEXUAL AND GENDER 2292 01:19:25,757 --> 01:19:26,724 MINORITY POPULATIONS THAT YOU'RE 2293 01:19:26,724 --> 01:19:28,059 POINTING OUT, I THINK THAT THIS 2294 01:19:28,059 --> 01:19:29,594 IS A VERY REAL ISSUE, AND THAT 2295 01:19:29,594 --> 01:19:31,863 DATA COLLECTION IS A VERY REAL 2296 01:19:31,863 --> 01:19:34,198 THING THAT NEEDS TO BE FOCUSED 2297 01:19:34,198 --> 01:19:38,569 ON AS WELL. 2298 01:19:38,569 --> 01:19:40,638 >> THANK YOU SO MUCH FOR THAT 2299 01:19:40,638 --> 01:19:40,872 ANSWER. 2300 01:19:40,872 --> 01:19:43,608 SO WE DO HAVE SOME RAISED HANDS, 2301 01:19:43,608 --> 01:19:49,947 SO I'LL NAVIGATE TO ONE OF THESE 2302 01:19:49,947 --> 01:19:53,217 FIRST AND THEN GO BACK TO SOME 2303 01:19:53,217 --> 01:19:53,584 OTHER QUESTION. 2304 01:19:53,584 --> 01:19:57,288 SO PARTICIPANTS HERE, GOKUL DAS. 2305 01:19:57,288 --> 01:19:59,157 CAN YOU UNMUTE, PLEASE? 2306 01:19:59,157 --> 01:19:59,791 THERE YOU GO. 2307 01:19:59,791 --> 01:20:00,692 >> THANK YOU. 2308 01:20:00,692 --> 01:20:07,265 SO MY QUESTION IS TO -- OR 2309 01:20:07,265 --> 01:20:08,266 ANYONE ELSE ON THE PANEL. 2310 01:20:08,266 --> 01:20:10,334 SO IF THERE'S AN INVESTIGATOR, 2311 01:20:10,334 --> 01:20:14,272 IF I'M PLANNING A CLINICAL 2312 01:20:14,272 --> 01:20:17,608 TRIAL, LET'S SAY ABOUT 50 2313 01:20:17,608 --> 01:20:19,510 PATIENTS, WHY 50 PATIENTS, 2314 01:20:19,510 --> 01:20:20,712 BECAUSE FOR EXAMPLE IF I'M 2315 01:20:20,712 --> 01:20:25,983 WRITING A CLINICAL TRIAL R01 AT 2316 01:20:25,983 --> 01:20:26,751 NCI, GIVEN THE LIMIT OF THE 2317 01:20:26,751 --> 01:20:29,454 AMOUNT FOR A FIVE-YEAR GRANT, 2318 01:20:29,454 --> 01:20:31,289 THAT'S THE NUMBER OF PATIENTS 2319 01:20:31,289 --> 01:20:33,725 ONE CAN RECRUIT. 2320 01:20:33,725 --> 01:20:39,630 SO IF IT IS, YOU KNOW, 2321 01:20:39,630 --> 01:20:40,264 MULTI-INSTITUTIONAL IN ORDER TO 2322 01:20:40,264 --> 01:20:43,034 GET THE SUFFICIENT 2323 01:20:43,034 --> 01:20:45,336 REPRESENTATION OF DIFFERENT 2324 01:20:45,336 --> 01:20:46,204 ETHNICITIES, FOR EXAMPLE, IF I'M 2325 01:20:46,204 --> 01:20:48,740 JUST FOCUSING ON AFRICAN 2326 01:20:48,740 --> 01:20:50,108 AMERICAN, CAUCASIAN -AMERICAN AND 2327 01:20:50,108 --> 01:20:51,008 AFRICAN AMERICAN PATIENTS NEED 2328 01:20:51,008 --> 01:20:56,380 TO BE INCLUDED, THEN IT BECOMES 2329 01:20:56,380 --> 01:20:58,449 A CHALLENGE BECAUSE AS YOU KNOW 2330 01:20:58,449 --> 01:21:00,318 FROM THE STATISTICAL APPROACH 2331 01:21:00,318 --> 01:21:03,588 YOU'VE DESCRIBED EARLIER, YOU 2332 01:21:03,588 --> 01:21:05,156 NEED A REASONABLE NUMBER OF 2333 01:21:05,156 --> 01:21:09,160 PEOPLE TO GET STATISTICAL ROBUST 2334 01:21:09,160 --> 01:21:09,927 IN YOUR DATA. 2335 01:21:09,927 --> 01:21:14,732 SO IF YOU WANT TO HAVE GOOD DATA 2336 01:21:14,732 --> 01:21:17,168 FROM BOTH THE RACIAL 2337 01:21:17,168 --> 01:21:19,036 BACKGROUNDS, YOU NEED TO 2338 01:21:19,036 --> 01:21:23,407 PROBABLY -- IF THE 2339 01:21:23,407 --> 01:21:25,910 STATISTICIANS -- 50, IF YOU NEED 2340 01:21:25,910 --> 01:21:28,780 TWO ETHNIC POPULATIONS, RACIAL 2341 01:21:28,780 --> 01:21:31,182 POPULATIONS, YOU MAY HAVE TO AT 2342 01:21:31,182 --> 01:21:31,783 LEAST DOUBLE IT. 2343 01:21:31,783 --> 01:21:34,585 SO HOW DO YOU PRAGMATICALLY 2344 01:21:34,585 --> 01:21:37,488 APPROACH SUCH A CHALLENGE, OR IN 2345 01:21:37,488 --> 01:21:38,289 ONE CHALLENGE, OF COURSE, YOU 2346 01:21:38,289 --> 01:21:39,824 NEED TO HAVE ACCESSIBILITY TO 2347 01:21:39,824 --> 01:21:42,460 THESE PATIENTS MEANS YOU HAVE TO 2348 01:21:42,460 --> 01:21:44,862 INCLUDE -- YOU HAVE TO HAVE A 2349 01:21:44,862 --> 01:21:45,463 MULTI-INSTITUTIONAL TRIAL TO 2350 01:21:45,463 --> 01:21:47,598 BEGIN WITH, THAT ITSELF WILL -- 2351 01:21:47,598 --> 01:21:49,567 IN DIRECT COST WILL, YOU KNOW, 2352 01:21:49,567 --> 01:21:51,102 INCREASE VERY MUCH. 2353 01:21:51,102 --> 01:21:53,938 PLUS THE NUMBER OF PATIENTS HAVE 2354 01:21:53,938 --> 01:21:55,139 TO BE INCREASED. 2355 01:21:55,139 --> 01:21:57,575 SO HOW DO YOU APPROACH THIS 2356 01:21:57,575 --> 01:22:07,718 DILEMMA? 2357 01:22:08,920 --> 01:22:11,355 >> WHO IS THE QUESTION FOR? 2358 01:22:11,355 --> 01:22:13,191 IS IT FOR DR. EGEDE? 2359 01:22:13,191 --> 01:22:16,360 >> DR. EGEDE CAN ANSWER IT OR 2360 01:22:16,360 --> 01:22:17,929 ANYONE WHO FEELS COMFORTABLE 2361 01:22:17,929 --> 01:22:18,429 ANSWERERRING IT. 2362 01:22:18,429 --> 01:22:19,564 >> I CAN START. 2363 01:22:19,564 --> 01:22:21,532 I DON'T THINK THAT ANY EASY 2364 01:22:21,532 --> 01:22:24,602 ANSWERS TO THIS BECAUSE 2365 01:22:24,602 --> 01:22:25,903 DEPENDING ON THE KIND OF STUDY 2366 01:22:25,903 --> 01:22:26,904 YOU'RE CONDUCTING, IF IT'S A 2367 01:22:26,904 --> 01:22:29,073 CLINICAL TRIAL, OBVIOUSLY YOU 2368 01:22:29,073 --> 01:22:32,243 HAVE SAMPLE SIZE -- BUDGET 2369 01:22:32,243 --> 01:22:32,577 LIMITATIONS. 2370 01:22:32,577 --> 01:22:35,413 SO I THINK YOU HAVE TO A PRIORI 2371 01:22:35,413 --> 01:22:38,182 DECIDE WHAT IS IMPORTANT TO YOU. 2372 01:22:38,182 --> 01:22:39,584 AND WHAT IS IMPORTANT TO THE 2373 01:22:39,584 --> 01:22:40,251 QUESTION YOU'RE TRYING TO 2374 01:22:40,251 --> 01:22:40,551 ANSWER. 2375 01:22:40,551 --> 01:22:42,587 SO IF YOU ARE -- SO FOR EXAMPLE, 2376 01:22:42,587 --> 01:22:44,188 WHEN YOU DO STUDIES THAT COMPARE 2377 01:22:44,188 --> 01:22:47,592 RACIAL GROUPS, THE SAMPLE SIZE 2378 01:22:47,592 --> 01:22:48,693 BY DEFINITION HAS TO BE LARGER 2379 01:22:48,693 --> 01:22:50,328 THAN A STUDY THAT DOES NOT DO 2380 01:22:50,328 --> 01:22:51,195 ANY RACIAL GROUP COMPARISON. 2381 01:22:51,195 --> 01:22:53,631 SO THAT INCREASES THE COST OF 2382 01:22:53,631 --> 01:22:55,032 YOUR STUDY. 2383 01:22:55,032 --> 01:22:56,567 THE OTHER THING THAT YOU COULD 2384 01:22:56,567 --> 01:22:58,436 ACTUALLY DO IS AFTER YOUR STUDY 2385 01:22:58,436 --> 01:23:00,338 IS DONE, YOU COULD ACTUALLY GO 2386 01:23:00,338 --> 01:23:04,675 IN AND REVIEW SO MAYBE BUILD IN 2387 01:23:04,675 --> 01:23:05,343 QUALITATIVE INTERVIEWS, SO YOU 2388 01:23:05,343 --> 01:23:07,578 CAN GET CONTEXT FOR MINORITY 2389 01:23:07,578 --> 01:23:07,812 GROUPS. 2390 01:23:07,812 --> 01:23:10,381 SO YOU MAY NOT HAVE THE SAMPLE 2391 01:23:10,381 --> 01:23:12,016 SIZE TO DO A FULL-FLEDGED 2392 01:23:12,016 --> 01:23:13,251 ANALYSIS OF COMPARISON, BUT YOU 2393 01:23:13,251 --> 01:23:15,086 CAN ACTUALLY DO SOME QUALITATIVE 2394 01:23:15,086 --> 01:23:16,954 WORK TO ACTUALLY SEE 2395 01:23:16,954 --> 01:23:18,389 PERSPECTIVES, BARRIERS THAT ARE 2396 01:23:18,389 --> 01:23:20,992 UNIQUE TO SPECIFIC GROUPS, BUT 2397 01:23:20,992 --> 01:23:24,996 YOU COATHIRD THING YOU COULD ACY 2398 01:23:24,996 --> 01:23:27,398 DO IS BASED ON INFORMATION -- 2399 01:23:27,398 --> 01:23:29,867 COW DO A FOCUSED STUDY FOCUSED 2400 01:23:29,867 --> 01:23:30,635 ON ONE PARTICULAR GROUP. 2401 01:23:30,635 --> 01:23:32,503 SO ALL OF THESE ARE THINGS YOU 2402 01:23:32,503 --> 01:23:34,171 HAVE TO THINK ABOUT AS YOU WRITE 2403 01:23:34,171 --> 01:23:36,574 THAT GRANT, AS YOU DEVELOP THAT 2404 01:23:36,574 --> 01:23:37,508 PROTOCOL GOING FORWARD. 2405 01:23:37,508 --> 01:23:40,077 >> AND THEN CAN I ALSO SAY, THIS 2406 01:23:40,077 --> 01:23:41,512 IS A QUESTION THAT CAME UP 2407 01:23:41,512 --> 01:23:43,381 OFTENTIMES IN THE REPORT, WE 2408 01:23:43,381 --> 01:23:47,652 WERE FOCUSED IN THE REPORT ON 2409 01:23:47,652 --> 01:23:48,853 TRACKING, SURVEILLING AND USING 2410 01:23:48,853 --> 01:23:52,256 TO MODIFY PROGRAMS ACROSS AN 2411 01:23:52,256 --> 01:23:55,860 ENTIRE NIH PORTFOLIO TO LOOK AT 2412 01:23:55,860 --> 01:23:56,761 REPRESENTATION. 2413 01:23:56,761 --> 01:23:58,496 DOES THIS MEAN THAT EVERY STUDY 2414 01:23:58,496 --> 01:24:01,432 OF 50 PARTICIPANTS WHERE THAT'S 2415 01:24:01,432 --> 01:24:02,333 THE APPROPRIATE SAMPLE SIZE FOR 2416 01:24:02,333 --> 01:24:05,303 THE STUDY QUESTION SHOULD 2417 01:24:05,303 --> 01:24:09,874 HAVE -- SHOULD MEET CRITERIA FOR 2418 01:24:09,874 --> 01:24:11,876 ALL OF THE HIGHER LEVEL 2419 01:24:11,876 --> 01:24:14,578 REPRESENTATION THAT A PARTICULAR 2420 01:24:14,578 --> 01:24:15,346 INSTITUTE, FOR EXAMPLE, IS 2421 01:24:15,346 --> 01:24:16,480 TRYING TO ACHIEVE? 2422 01:24:16,480 --> 01:24:18,983 NO, THAT'S NOT POSSIBLE, AND IT 2423 01:24:18,983 --> 01:24:20,284 SPEAKS TO WHAT DR. EGEDE IS 2424 01:24:20,284 --> 01:24:21,385 SAYING, IF THE GOAL OF YOUR 2425 01:24:21,385 --> 01:24:22,987 STUDY IS TO TEST FOR DIFFERENCES 2426 01:24:22,987 --> 01:24:23,788 ACROSS GROUPS, YOU HAVE TO 2427 01:24:23,788 --> 01:24:29,126 DESIGN A STUDY TO DO THAT. 2428 01:24:29,126 --> 01:24:33,297 BUT I WOULD SAY THAT THE -- AND 2429 01:24:33,297 --> 01:24:35,599 SOME STUDIES WHERE YOU ARE 2430 01:24:35,599 --> 01:24:37,468 LOOKING AT THE SPECIFIC ISSUES 2431 01:24:37,468 --> 01:24:41,205 IN A PARTICULAR POPULATION, 2432 01:24:41,205 --> 01:24:44,141 SHOULD HAVE SOMETHING THAT'S 2433 01:24:44,141 --> 01:24:45,009 COMPATIBLE. 2434 01:24:45,009 --> 01:24:47,111 WE DID NOT MEAN TO BE THAT EVERY 2435 01:24:47,111 --> 01:24:49,180 SINGLE STUDY HAS TO DO EXACTLY 2436 01:24:49,180 --> 01:24:50,181 THE SAME THING. 2437 01:24:50,181 --> 01:24:54,251 IT DOES NEED TO CONSIDER THE 2438 01:24:54,251 --> 01:24:55,119 POPULATIONS THAT ARE AFFECTED BY 2439 01:24:55,119 --> 01:24:58,055 THE CONDITION THAT'S BEING 2440 01:24:58,055 --> 01:24:59,156 STUDIED, ENSURING THAT THE 2441 01:24:59,156 --> 01:25:02,126 PEOPLE WHO ARE INVOLVED IN THE 2442 01:25:02,126 --> 01:25:04,862 STUDY, THAT IT'S COMPATIBLE WITH 2443 01:25:04,862 --> 01:25:06,063 THE DEMOGRAPHICS FOR THE 2444 01:25:06,063 --> 01:25:07,631 CONDITION THAT'S BEING STUDIED, 2445 01:25:07,631 --> 01:25:10,568 AND THAT OVERALL, FUNDERS LIKE 2446 01:25:10,568 --> 01:25:12,636 THE NIH WHO ARE LOOKING ACROSS A 2447 01:25:12,636 --> 01:25:13,971 LARGE PORTFOLIO HAVE TO MAKE 2448 01:25:13,971 --> 01:25:17,375 SURE THAT ACROSS MULTIPLE STU 2449 01:25:17,375 --> 01:25:21,746 STUDIES THAT THEY DO HAVE THAT 2450 01:25:21,746 --> 01:25:22,413 IN PLACE. 2451 01:25:22,413 --> 01:25:24,482 AND FOR THE INVESTIGATOR, IN 2452 01:25:24,482 --> 01:25:26,484 YOUR STUDY IT REALLY MATCHES THE 2453 01:25:26,484 --> 01:25:28,252 COMPOSITION OF THAT. 2454 01:25:28,252 --> 01:25:30,187 >> THANK YOU TO UR OH PANELISTS. 2455 01:25:30,187 --> 01:25:32,623 WE HAVE TO MOVE ON TO OUR NEXT 2456 01:25:32,623 --> 01:25:33,257 QUESTION. 2457 01:25:33,257 --> 01:25:35,226 EDWARD, PLEASE GO AHEAD AND 2458 01:25:35,226 --> 01:25:36,127 UNMUTE. 2459 01:25:36,127 --> 01:25:36,394 GO FOR IT. 2460 01:25:36,394 --> 01:25:37,495 THANK YOU. 2461 01:25:37,495 --> 01:25:38,329 >> THANK YOU. 2462 01:25:38,329 --> 01:25:39,196 MY NAME IS ED. 2463 01:25:39,196 --> 01:25:41,732 I'M A NURSE PRACTITIONER AND I 2464 01:25:41,732 --> 01:25:44,668 WORK IN AN ONCOLOGY CLINICAL 2465 01:25:44,668 --> 01:25:45,202 TRIAL. 2466 01:25:45,202 --> 01:25:47,204 THE QUESTION IS FOR EITHER 2467 01:25:47,204 --> 01:25:48,172 DR. BIBBINS-DOMINGO OR DR. EGEDE 2468 01:25:48,172 --> 01:25:48,939 OR ANYONE ELSE. 2469 01:25:48,939 --> 01:25:53,744 IN COLLECTING RACE /ETHNICITY AND 2470 01:25:53,744 --> 01:25:54,745 SOGE DATA, THERE'S SO MUCH 2471 01:25:54,745 --> 01:25:55,946 VARIANCE IN WHAT PATIENTS 2472 01:25:55,946 --> 01:25:57,148 SELF-REPORT AND THE METHODS THAT 2473 01:25:57,148 --> 01:25:59,316 THE DATA IS COLLECTED, SO FOR 2474 01:25:59,316 --> 01:26:00,684 INSTANCE, IN ONE CLINIC, THEY 2475 01:26:00,684 --> 01:26:02,753 MIGHT ASK THE PATIENTS, ANOTHER 2476 01:26:02,753 --> 01:26:04,522 THEY MIGHT SELF-REPORT. 2477 01:26:04,522 --> 01:26:06,590 WORST-CASE SCENARIO, SOMETIMES 2478 01:26:06,590 --> 01:26:07,558 SOMEONE AT A DIFFERENT DESK 2479 01:26:07,558 --> 01:26:08,759 DECIDES WHAT THEY THINK SOMEONE 2480 01:26:08,759 --> 01:26:12,296 IS, AND THIS ALL CREATES -- OR I 2481 01:26:12,296 --> 01:26:14,031 THINK JUST REALLY IMPEDE US 2482 01:26:14,031 --> 01:26:17,334 REALLY COLLECTING DATA 2483 01:26:17,334 --> 01:26:18,169 ACCURATELY. 2484 01:26:18,169 --> 01:26:22,139 ANY MAYBE TIPS OR STRATEGIES TO 2485 01:26:22,139 --> 01:26:24,208 HELP AT AN INSTITUTIONAL LEVEL 2486 01:26:24,208 --> 01:26:26,977 GET PAST THAT? 2487 01:26:26,977 --> 01:26:28,946 >> WELL, I WOULD JUST SAY THAT 2488 01:26:28,946 --> 01:26:29,613 COMMITTEE CAME -- SO THANK YOU 2489 01:26:29,613 --> 01:26:30,581 FOR THE QUESTION. 2490 01:26:30,581 --> 01:26:32,683 THE COMMITTEE CAME DOWN VERY 2491 01:26:32,683 --> 01:26:33,551 STRONGLY ENDORSING WHAT I THINK 2492 01:26:33,551 --> 01:26:34,785 THE LITERATURE SUPPORTS, WHICH 2493 01:26:34,785 --> 01:26:38,622 IS USING SELF-REPORT OF 2494 01:26:38,622 --> 01:26:39,590 RACE/ETHNICITY, BUT THAT ACROSS 2495 01:26:39,590 --> 01:26:41,592 A STUDY, THE PRAGMATIC NATURE OF 2496 01:26:41,592 --> 01:26:43,327 IS IT SELF-REPORT ON A WRITTEN 2497 01:26:43,327 --> 01:26:44,962 FORM OR SELF-REPORT BECAUSE 2498 01:26:44,962 --> 01:26:47,832 SOMEBODY ASKED, I THINK THAT -- 2499 01:26:47,832 --> 01:26:49,033 BUT IT IS -- SELF-REPORT IS 2500 01:26:49,033 --> 01:26:50,468 GRANTED SO THE IDEA OF MULTIPLE 2501 01:26:50,468 --> 01:26:52,870 WAYS OF GETTING AT THAT 2502 01:26:52,870 --> 01:26:54,505 INCLUDING SOMEONE ELSE'S BEST 2503 01:26:54,505 --> 01:26:57,041 GUESS AT WHAT A PERSON'S 2504 01:26:57,041 --> 01:26:57,975 RACE/ETHNICITY IS, THAT WOULD 2505 01:26:57,975 --> 01:27:01,278 NOT BE CONSIDERED APPROPRIATE. 2506 01:27:01,278 --> 01:27:06,584 BUT I THINK THAT WE -- WE BOTH 2507 01:27:06,584 --> 01:27:08,652 ENDORSED SELF-REPORT OF 2508 01:27:08,652 --> 01:27:10,421 RACE/ETHNICITY AND THEN 2509 01:27:10,421 --> 01:27:11,322 UNDERSTANDING THAT THE STUDIES 2510 01:27:11,322 --> 01:27:13,390 THAT ARE DOING THIS WELL REALLY 2511 01:27:13,390 --> 01:27:15,493 THINK ABOUT THE WAYS TO GET AT 2512 01:27:15,493 --> 01:27:17,661 THE QUESTION IN A WAY THAT'S 2513 01:27:17,661 --> 01:27:18,996 COMPATIBLE WITH THE DESIGN OF 2514 01:27:18,996 --> 01:27:20,164 THEIR STUDY. 2515 01:27:20,164 --> 01:27:24,969 >> SO I AGREE WITH DR. DOMINGO, 2516 01:27:24,969 --> 01:27:26,303 WE ALWAYS JUST TAKE THE 2517 01:27:26,303 --> 01:27:27,204 SELF-REPORT BECAUSE THE PERSON 2518 01:27:27,204 --> 01:27:32,343 KNOWS, YOU KNOW, THEIR RACE AND 2519 01:27:32,343 --> 01:27:32,877 ETHNICITY. 2520 01:27:32,877 --> 01:27:36,180 WHEN YOU IS DEVELOP YOUR STUDY 2521 01:27:36,180 --> 01:27:37,481 PROTOCOL, YOU HAVE TO PUT A 2522 01:27:37,481 --> 01:27:38,816 GUIDELINES HOW YOU'RE COLLECTING 2523 01:27:38,816 --> 01:27:41,018 SO YOU HAVE A STANDARDIZED 2524 01:27:41,018 --> 01:27:43,120 METHOD, HOW YOU'RE COLLECTING 2525 01:27:43,120 --> 01:27:44,321 DEMOGRAPHICS AND RACE AND 2526 01:27:44,321 --> 01:27:44,655 ETHNICITY. 2527 01:27:44,655 --> 01:27:46,624 SO THIS IS PART OF -- WE DO A 2528 01:27:46,624 --> 01:27:49,994 LOT OF QUALITY CONTROL ON THAT, 2529 01:27:49,994 --> 01:27:51,896 AND THIS HAS TO BE PART OF YOUR 2530 01:27:51,896 --> 01:27:53,531 PROTOCOL. 2531 01:27:53,531 --> 01:27:55,833 I AGREE, IF YOU ARE DOING A 2532 01:27:55,833 --> 01:27:58,135 TRIAL USING ELECTRONIC HEALTH 2533 01:27:58,135 --> 01:28:00,671 RECORDS OR IT'S NOT LIKE YOU'RE 2534 01:28:00,671 --> 01:28:03,174 DOING -- COLLECTING THE DATA 2535 01:28:03,174 --> 01:28:04,708 YOURSELF FOR YOUR TRIAL, THIS 2536 01:28:04,708 --> 01:28:06,610 GETS A LITTLE BIT MURKY BECAUSE 2537 01:28:06,610 --> 01:28:10,748 YOU ARE RELYING ON INFORMATION 2538 01:28:10,748 --> 01:28:12,716 IN THE EHR THAT YOU DIDN'T KNOW 2539 01:28:12,716 --> 01:28:15,286 HOW IT WAS COLLECTED, BUT FOR 2540 01:28:15,286 --> 01:28:17,154 THEN, YOU JUST TAKE WHAT'S 2541 01:28:17,154 --> 01:28:18,923 THERE, BUT IF YOU ARE DESIGNING 2542 01:28:18,923 --> 01:28:20,858 YOUR OWN STUDY AND YOU'RE DOING 2543 01:28:20,858 --> 01:28:22,159 YOUR OWN ORIGINAL DATA 2544 01:28:22,159 --> 01:28:23,260 COLLECTION, I WOULD RECOMMEND 2545 01:28:23,260 --> 01:28:25,496 THAT THIS CAN BE PART OF THE 2546 01:28:25,496 --> 01:28:26,564 TRAINING AND CERTIFICATION OF 2547 01:28:26,564 --> 01:28:28,566 STAFF. 2548 01:28:28,566 --> 01:28:30,734 >> THANK YOU. 2549 01:28:30,734 --> 01:28:31,502 THAT'S SIMILAR TO WHAT WE DO 2550 01:28:31,502 --> 01:28:32,770 NOW, WE HAVE BASICALLY FORMS 2551 01:28:32,770 --> 01:28:34,171 THAT WE CREATED FOR EVERYONE WHO 2552 01:28:34,171 --> 01:28:36,440 ENTERS ON ANY OF OUR TRIALS, 2553 01:28:36,440 --> 01:28:38,042 THEY SELF-REPORT. 2554 01:28:38,042 --> 01:28:41,512 BUT IT'S OFTEN -- VERY OFTEN IN 2555 01:28:41,512 --> 01:28:43,480 CONFLICT WITH WHAT'S IN THE EMR. 2556 01:28:43,480 --> 01:28:45,249 >> AND YOU DON'T KNOW HOW THE 2557 01:28:45,249 --> 01:28:46,150 EMR WAS COLLECTED. 2558 01:28:46,150 --> 01:28:47,017 THAT'S THE THING. 2559 01:28:47,017 --> 01:28:49,286 BUT AT LEAST YOU CAN MAKE SURE 2560 01:28:49,286 --> 01:28:52,389 WITH SOME QA AND QUALITY, YOU 2561 01:28:52,389 --> 01:28:54,825 KNOW, WE DO LISTEN TO SOME OF 2562 01:28:54,825 --> 01:28:57,294 THOSE AND DO WHATEVER OUR BEST 2563 01:28:57,294 --> 01:29:00,164 TO DO, BUT AGAIN, IT'S ONE OF 2564 01:29:00,164 --> 01:29:01,932 THIS NOT THE HARD DATA BUT I A 2565 01:29:01,932 --> 01:29:06,403 GIAGREE WITH DR. DOMINGO, WHAT 2566 01:29:06,403 --> 01:29:07,871 EVERYBODY USES AS THE 2567 01:29:07,871 --> 01:29:09,640 SELF-REPORT. 2568 01:29:09,640 --> 01:29:10,174 >> THANK YOU. 2569 01:29:10,174 --> 01:29:15,646 THANK YOU ALL. 2570 01:29:15,646 --> 01:29:17,715 >> THANK YOU SO MUCH. 2571 01:29:17,715 --> 01:29:18,482 UNFORTUNATELY WE WON'T BE ABLE 2572 01:29:18,482 --> 01:29:19,817 TO GET TO ALL OF THE QUESTIONS. 2573 01:29:19,817 --> 01:29:20,784 HOPEFULLY SOME OF THE QUESTIONS 2574 01:29:20,784 --> 01:29:23,554 HAVE BEEN ANSWERED VIA CHAT. 2575 01:29:23,554 --> 01:29:25,289 THERE ARE SPECIFIC ONES TO EACH 2576 01:29:25,289 --> 01:29:29,126 OF THE PANELISTS AND SPEAKERS. 2577 01:29:29,126 --> 01:29:30,227 AGAIN I WANT TO THANK THE 2578 01:29:30,227 --> 01:29:33,764 PANELISTS FOR THEIR EXCELLENT 2579 01:29:33,764 --> 01:29:34,632 PRESENTATIONS, AND THE AUDIENCE 2580 01:29:34,632 --> 01:29:35,833 FOR THEIR ENGAGEMENT AND 2581 01:29:35,833 --> 01:29:36,934 QUESTIONS. 2582 01:29:36,934 --> 01:29:39,436 I THINK NOW WE ARE GOING TO A 2583 01:29:39,436 --> 01:29:40,971 SHORT BREAK. 2584 01:29:40,971 --> 01:29:44,375 THANK YOU SO MUCH, EVERYBODY. 2585 01:29:44,375 --> 01:29:46,910 YES, WE HAVE NOW A 5-MINUTE 2586 01:29:46,910 --> 01:29:57,021 BREAK. 2587 01:29:58,737 --> 01:30:00,005 I AM A SENIOR PORTFOLIO MANAGER 2588 01:30:00,005 --> 01:30:02,074 IN THE NATIONAL INSTITUTE FOR 2589 01:30:02,074 --> 01:30:04,276 NEUROLOGICAL DISTORDERS IN 2590 01:30:04,276 --> 01:30:04,810 STROKE. 2591 01:30:04,810 --> 01:30:06,145 I AM ALSO FOUNDER AND CHAIR OF 2592 01:30:06,145 --> 01:30:07,780 THE SPECIAL POPULATIONS RESEARCH 2593 01:30:07,780 --> 01:30:09,448 FORMS CLINICAL RESEARCH 2594 01:30:09,448 --> 01:30:11,283 RECOMMENDATION COMMITTEE. 2595 01:30:11,283 --> 01:30:12,618 THE COMODERATOR FOR THIS PANEL 2596 01:30:12,618 --> 01:30:16,221 DISCUSSION IS MY COLLEAGUE, 2597 01:30:16,221 --> 01:30:20,559 DR. JENNIFER ALVIDREZ IN THE 2598 01:30:20,559 --> 01:30:23,462 OFFICE OF THE DIRECTOR HERE AT 2599 01:30:23,462 --> 01:30:24,530 NIH. 2600 01:30:24,530 --> 01:30:26,098 WE'LL FOCUS ON SHARING BEST 2601 01:30:26,098 --> 01:30:26,999 PRACTICES FOR PERFORMING 2602 01:30:26,999 --> 01:30:28,500 CLINICAL RESEARCH IN SPECIAL 2603 01:30:28,500 --> 01:30:29,601 POPULATIONS. 2604 01:30:29,601 --> 01:30:30,602 OUR FIRST PANEL DISCUSSION WILL 2605 01:30:30,602 --> 01:30:32,471 COVER BEST PRACTICES FOR 2606 01:30:32,471 --> 01:30:34,106 PERFORMING CLINICAL RESEARCH IN 2607 01:30:34,106 --> 01:30:34,974 UNDERREPRESENTED RACIAL AND 2608 01:30:34,974 --> 01:30:37,276 ETHNIC POPULATIONS. 2609 01:30:37,276 --> 01:30:38,944 THIS IS A 40-MINUTE PANEL AND IT 2610 01:30:38,944 --> 01:30:42,214 WILL END AT 1:15. 2611 01:30:42,214 --> 01:30:43,515 IF YOU HAVE ANY QUESTIONS, 2612 01:30:43,515 --> 01:30:44,450 PLEASE USE ANY OF THE METHODS 2613 01:30:44,450 --> 01:30:47,686 THAT HAVE BEEN CITED PREVIOUSLY. 2614 01:30:47,686 --> 01:30:49,221 YOU CAN PUT YOUR QUESTIONS IN 2615 01:30:49,221 --> 01:30:51,357 THE CHAT BOX IF YOU ARE ON ZOOM. 2616 01:30:51,357 --> 01:30:55,127 USE THE LIVE FEEDBACK OPTION IF 2617 01:30:55,127 --> 01:30:56,996 YOU'RE WATCHING BY VIDEOCAST OR 2618 01:30:56,996 --> 01:30:59,732 RAISE YOUR HAND AND JENNIFER OUR 2619 01:30:59,732 --> 01:31:01,467 COMODERATOR WILL HELP COORDINATE 2620 01:31:01,467 --> 01:31:03,235 GETTING YOUR QUESTION ASKED. 2621 01:31:03,235 --> 01:31:05,004 SO LET'S GET STARTED. 2622 01:31:05,004 --> 01:31:09,508 I'D LIKE TO INTRODUCE OUR 2623 01:31:09,508 --> 01:31:09,842 PANELISTS. 2624 01:31:09,842 --> 01:31:12,011 I'D ASK THAT EACH PROVIDE A 2625 01:31:12,011 --> 01:31:21,787 BRIEF DU INTRODUCTORY REMARK. 2626 01:31:21,787 --> 01:31:25,290 DR. LUCILE ADAMS-CAMPBELL. 2627 01:31:25,290 --> 01:31:26,058 SENIOR ASSOCIATE DEAN FOR 2628 01:31:26,058 --> 01:31:28,360 COMMUNITY OUTREACH AND 2629 01:31:28,360 --> 01:31:29,795 ENGAGEMENT, AND PROFESSOR OF 2630 01:31:29,795 --> 01:31:31,230 ONCOLOGY AT THE LOMBARDI 2631 01:31:31,230 --> 01:31:32,598 COMPREHENSIVE CANCER CENTER AT 2632 01:31:32,598 --> 01:31:33,399 GEORGETOWN UNIVERSITY MEDICAL 2633 01:31:33,399 --> 01:31:35,501 CENTER. 2634 01:31:35,501 --> 01:31:36,802 >> GOOD AFTERNOON. 2635 01:31:36,802 --> 01:31:37,803 THANK YOU VERY MUCH FOR HAVING 2636 01:31:37,803 --> 01:31:39,004 ME ON THIS PANEL. 2637 01:31:39,004 --> 01:31:40,739 I AM VERY ENGAGED IN CLINICAL 2638 01:31:40,739 --> 01:31:44,610 TRIALS FOCUSED ON AFRICAN 2639 01:31:44,610 --> 01:31:45,711 AMERICANS, BLACKS IN PARTICULAR, 2640 01:31:45,711 --> 01:31:47,679 AND ALSO HISPANICS. 2641 01:31:47,679 --> 01:31:54,353 I AM THE P.I. OF THE NCORP GRANT 2642 01:31:54,353 --> 01:31:55,921 AT GEORGETOWN LOMBARDI CANCER 2643 01:31:55,921 --> 01:31:57,122 CENTER AND WE ARE REALLY 2644 01:31:57,122 --> 01:32:03,128 REACHING OUT BECAUSE WE ARE 2645 01:32:03,128 --> 01:32:05,097 MINORITY -- WE HAVE MADE MANY 2646 01:32:05,097 --> 01:32:06,465 STRIDES IN INCREASING AND 2647 01:32:06,465 --> 01:32:07,766 OVERCOMING MANY BARRIERS LINKED 2648 01:32:07,766 --> 01:32:10,903 TO CLINICAL TRIALS. 2649 01:32:10,903 --> 01:32:12,671 >> THANK YOU, 2650 01:32:12,671 --> 01:32:13,105 DR. ADAMS-CAMPBELL. 2651 01:32:13,105 --> 01:32:19,144 NEXT WE HAVE DR. DENISE DILLARD, 2652 01:32:19,144 --> 01:32:20,946 PROFESSOR AND CO -DIRECTOR OF THE 2653 01:32:20,946 --> 01:32:21,680 INSTITUTE FOR RESEARCH AND 2654 01:32:21,680 --> 01:32:22,714 EDUCATION TO ADVANCE COMMUNITY 2655 01:32:22,714 --> 01:32:23,515 HEALTH AT WASHINGTON STATE 2656 01:32:23,515 --> 01:32:26,085 UNIVERSITY. 2657 01:32:26,085 --> 01:32:28,020 >> GOOD MORNING OR GOOD 2658 01:32:28,020 --> 01:32:28,687 AFTERNOON, DEPENDING ON WHERE 2659 01:32:28,687 --> 01:32:30,889 PEOPLE ARE IN THE COUNTRY. 2660 01:32:30,889 --> 01:32:35,027 SO MY NAME IS DENISE DILLARD. 2661 01:32:35,027 --> 01:32:40,632 I AMY MOTHER WAS FROM KING ISLA, 2662 01:32:40,632 --> 01:32:41,934 ALASKA, A SMALL ISLAND. 2663 01:32:41,934 --> 01:32:45,370 I'VE SPENT THE 30 YEARS OF MY 2664 01:32:45,370 --> 01:32:47,239 CAREER EITHER PROVIDING CLINICAL 2665 01:32:47,239 --> 01:32:49,408 SERVICES OR DOING RESEARCH WITH 2666 01:32:49,408 --> 01:32:51,743 AMERICAN INDIAN AND ALASKA 2667 01:32:51,743 --> 01:32:52,277 NATIVE PEOPLE. 2668 01:32:52,277 --> 01:32:53,812 MUCH OF MY WORK HAS BEEN BASED 2669 01:32:53,812 --> 01:32:56,648 IN ALASKA, BUT I'VE ALSO 2670 01:32:56,648 --> 01:32:59,518 PARTNERED WITH MULTIPLE TRIBES 2671 01:32:59,518 --> 01:33:01,253 ACROSS THE NATION. 2672 01:33:01,253 --> 01:33:03,555 MY PORTFOLIO IS VERY DIVERSE. 2673 01:33:03,555 --> 01:33:06,191 I'M A PSYCHOLOGIST BY TRAINING, 2674 01:33:06,191 --> 01:33:08,727 BUT I HAVE LED DIFFERENT EFFORTS 2675 01:33:08,727 --> 01:33:12,664 THAT ARE IN PARTNERSHIP WITH 2676 01:33:12,664 --> 01:33:14,733 CONTENT EXPERTS IN VERY DIVERSE 2677 01:33:14,733 --> 01:33:16,602 AREAS TO INCLUDE 2678 01:33:16,602 --> 01:33:18,837 PHARMACOGENETICS OR 2679 01:33:18,837 --> 01:33:21,540 CARDIOVASCULAR DISEASE, AND MY 2680 01:33:21,540 --> 01:33:24,176 PORTFOLIO IS PURPOSEFULLY 2681 01:33:24,176 --> 01:33:25,611 DIVERSE IN ORDER TO REALLY 2682 01:33:25,611 --> 01:33:28,013 RESPOND TO THE NEEDS THAT 2683 01:33:28,013 --> 01:33:34,286 COMMUNITY MEMBERS RAISE. 2684 01:33:34,286 --> 01:33:39,725 >> THANK YOU, DR. DILLARD. 2685 01:33:39,725 --> 01:33:44,429 DR. MAY SUDDENHINARASET. 2686 01:33:44,429 --> 01:33:46,532 >> GOOD MORNING, AFTERNOON, 2687 01:33:46,532 --> 01:33:46,999 EVERYONE. 2688 01:33:46,999 --> 01:33:48,967 I'M ASSOCIATE PROFESSOR AND VICE 2689 01:33:48,967 --> 01:33:50,102 CHAIR IN COMMUNITY HEALTH 2690 01:33:50,102 --> 01:33:51,970 SCIENCES AT THE FIELDING SCHOOL 2691 01:33:51,970 --> 01:33:54,239 OF PUBLIC HEALTH AT UCLA. 2692 01:33:54,239 --> 01:33:56,642 I'M A SOCIAL EPIDEMIOLOGIST BY 2693 01:33:56,642 --> 01:33:57,876 TRAINING AND CONDUCT RESEARCH 2694 01:33:57,876 --> 01:33:59,845 WITH IMGRANT POPULATION, 2695 01:33:59,845 --> 01:34:01,046 SPECIFICALLY ASIAN GROUPS ACROSS 2696 01:34:01,046 --> 01:34:02,514 DIFFERENT IMMIGRATION STATUSES, 2697 01:34:02,514 --> 01:34:03,815 INCLUDING THOSE WHO ARE 2698 01:34:03,815 --> 01:34:04,249 UNDOCUMENTED. 2699 01:34:04,249 --> 01:34:06,118 I'M CURRENTLY LEADING A STUDY 2700 01:34:06,118 --> 01:34:07,419 CALLED THE BRAVE STUDY WHICH 2701 01:34:07,419 --> 01:34:08,554 STANDS FOR BUILDING COMMUNITY 2702 01:34:08,554 --> 01:34:11,190 RAISING ALL IMMIGRANT VOICES FOR 2703 01:34:11,190 --> 01:34:11,723 HEALTH EQUITY. 2704 01:34:11,723 --> 01:34:13,926 THIS FOCUSES ON UPLIFTING ASIAN 2705 01:34:13,926 --> 01:34:15,561 IMMIGRANT VOICES AND 2706 01:34:15,561 --> 01:34:16,995 UNDERSTANDING HOW IMMIGRATION 2707 01:34:16,995 --> 01:34:19,164 STATUS STRUCTURES REPRODUCTIVE 2708 01:34:19,164 --> 01:34:20,399 RIGHTS, IMMIGRANTS' RIGHTS AND 2709 01:34:20,399 --> 01:34:21,833 SEXUAL AND REPRODUCTIVE 2710 01:34:21,833 --> 01:34:24,670 HEALTHCARE USE ACROSS THE U.S. 2711 01:34:24,670 --> 01:34:27,439 ASIANS ARE CRITICALLY 2712 01:34:27,439 --> 01:34:29,308 UNDERREPRESENTED IN NIH RESEARCH 2713 01:34:29,308 --> 01:34:31,276 STUDIES DESPITE BEING THE 2714 01:34:31,276 --> 01:34:32,711 FASTEST GROWING RACIAL AND 2715 01:34:32,711 --> 01:34:33,712 ETHNIC GROUP IN THE U.S., AND 2716 01:34:33,712 --> 01:34:34,479 I'M LOOKING FORWARD TO THIS 2717 01:34:34,479 --> 01:34:35,581 DISCUSSION. 2718 01:34:35,581 --> 01:34:36,648 >> THANK YOU. 2719 01:34:36,648 --> 01:34:41,153 NEXT WE HAVE DR. GREG TALAVERA, 2720 01:34:41,153 --> 01:34:42,821 PROFESSOR IN THE DEPARTMENT OF 2721 01:34:42,821 --> 01:34:44,156 PSYCHOLOGY AT SAN DIEGO STATE 2722 01:34:44,156 --> 01:34:46,792 UNIVERSITY, ALSO THE FOUNDER AND 2723 01:34:46,792 --> 01:34:48,527 CO-DIRECTOR OF THE SOUTH DE 2724 01:34:48,527 --> 01:34:53,699 LATINO RESEARCH CENTER. 2725 01:34:53,699 --> 01:35:00,872 >> GOOD DAY, EVERYBODY. 2726 01:35:00,872 --> 01:35:03,275 I AM A FACULTY MEMBER AT 2727 01:35:03,275 --> 01:35:05,877 SAN DIEGO STATE BUT MY RESEARCH 2728 01:35:05,877 --> 01:35:08,347 FOCUSES ON THE LATINO COMMUNITY 2729 01:35:08,347 --> 01:35:10,282 AND THE SOUTH BAY REGION OF 2730 01:35:10,282 --> 01:35:14,586 SAN DIEGO NEAR THE BORDER. 2731 01:35:14,586 --> 01:35:18,991 SO THESE ARE LATINOS BY NATIONAL 2732 01:35:18,991 --> 01:35:19,858 BACKGROUND AND BORDER HEALTH 2733 01:35:19,858 --> 01:35:21,059 ISSUES, THEY CROSS THE BORDER 2734 01:35:21,059 --> 01:35:26,832 QUITE A BIT, AND MY ABILITY TO 2735 01:35:26,832 --> 01:35:28,200 DO RESEARCH AND REACH THIS HARD 2736 01:35:28,200 --> 01:35:29,301 TO REACH POPULATION IS THAT I 2737 01:35:29,301 --> 01:35:32,371 WORK WITH A LARGE COMMUNITY 2738 01:35:32,371 --> 01:35:33,372 HEALTH CENTER RIGHT ON THE 2739 01:35:33,372 --> 01:35:35,140 BORDER WHICH HAS 100,000 2740 01:35:35,140 --> 01:35:36,775 REGISTERED PATIENTS, AND I HAVE 2741 01:35:36,775 --> 01:35:38,410 DEVELOPED A 20 -YEAR RELATIONSHIP 2742 01:35:38,410 --> 01:35:42,114 WITH THEM CONDUCTING RANDOMIZED 2743 01:35:42,114 --> 01:35:43,782 CLINICAL TRIALS, MOSTLY FOCUSED 2744 01:35:43,782 --> 01:35:47,319 ON DIABETES, BUT ASSISTED THEM 2745 01:35:47,319 --> 01:35:48,854 WITH LONGITUDINAL RESEARCH 2746 01:35:48,854 --> 01:35:53,091 PROGRAMS ALSO FOCUSING ON 2747 01:35:53,091 --> 01:35:55,160 LATINOS, AND MOST RECENTLY 2748 01:35:55,160 --> 01:36:00,032 ASSISTING THEM WITH THE COVID 2749 01:36:00,032 --> 01:36:01,533 RESPONSE FUNDING THAT CAME DOWN 2750 01:36:01,533 --> 01:36:03,935 DURING THE EPIDEMIC TO REACH THE 2751 01:36:03,935 --> 01:36:04,736 SPANISH SPEAKING COMMUNITY IN 2752 01:36:04,736 --> 01:36:08,407 OUR AREA. 2753 01:36:08,407 --> 01:36:11,910 AND I AM A VIZ BY TRAINING, 2754 01:36:11,910 --> 01:36:16,315 TRTRAIN -- APHYSICIAN BY TRAINI. 2755 01:36:16,315 --> 01:36:19,051 MY CLINICAL TRIAL WORK ALSO 2756 01:36:19,051 --> 01:36:21,086 FOCUSES ON THE INTEGRATION OF 2757 01:36:21,086 --> 01:36:21,720 BEHAVIORAL AND MEDICAL CARE. 2758 01:36:21,720 --> 01:36:23,188 THANK YOU FOR INVITING ME. 2759 01:36:23,188 --> 01:36:24,923 >> THANK YOU. 2760 01:36:24,923 --> 01:36:30,095 AND LAST BUT NOT LEAST, WE HAVE 2761 01:36:30,095 --> 01:36:33,598 MR. VA' A TOFAEONO, PRINCIPAL 2762 01:36:33,598 --> 01:36:39,538 INVESTIGATOR AT THE AMERICAN 2763 01:36:39,538 --> 01:36:40,839 SAMOA CANCER COALITION. 2764 01:36:40,839 --> 01:36:44,242 >> GREETINGS, EVERYONE. 2765 01:36:44,242 --> 01:36:48,780 I WAS THE MPI FOR INDIGENOUS 2766 01:36:48,780 --> 01:36:51,049 SAMOAN PARTNERSHIP TO INITIATE 2767 01:36:51,049 --> 01:36:51,717 RESEARCH EXCELLENCE WHICH LOOKED 2768 01:36:51,717 --> 01:36:54,353 TO BUILD CAPACITY HERE IN 2769 01:36:54,353 --> 01:36:58,323 AMERICAN SAMOA AND ALSO STUDY 2770 01:36:58,323 --> 01:36:59,424 HEALTH LITERACY AS A 2771 01:36:59,424 --> 01:37:01,626 CONTRIBUTING FACTOR TO 2772 01:37:01,626 --> 01:37:02,828 COLORECTAL CANCER SCREENING. 2773 01:37:02,828 --> 01:37:07,532 THAT ALSO LED TO OUR FIRST 2774 01:37:07,532 --> 01:37:09,501 R01 AWARD WE JUST GOT LAST YEAR 2775 01:37:09,501 --> 01:37:11,636 THAT IS NOW LOOKING AT 2776 01:37:11,636 --> 01:37:13,071 ALZHEIMER'S DISEASE AND RELATED 2777 01:37:13,071 --> 01:37:16,375 DEMENTIA OF PREVALENCE ON 2778 01:37:16,375 --> 01:37:17,676 ISLAND. 2779 01:37:17,676 --> 01:37:19,211 A MAJORITY OF OUR POPULATION 2780 01:37:19,211 --> 01:37:21,213 HERE IS SAMOAN, BUT WE ALSO DO 2781 01:37:21,213 --> 01:37:22,514 HAVE OTHER PACIFIC ISLANDER 2782 01:37:22,514 --> 01:37:26,585 POPULATIONS SUCH AS FIJI AND 2783 01:37:26,585 --> 01:37:28,353 FILIPINO, WHO ARE ALSO 2784 01:37:28,353 --> 01:37:31,923 UNDERREPRESENTED IN NIH STUDIES. 2785 01:37:31,923 --> 01:37:33,325 SO GLAD TO BE PART OF THE PANEL 2786 01:37:33,325 --> 01:37:34,559 AND LOOKING FORWARD TO THE 2787 01:37:34,559 --> 01:37:34,860 DISCUSSION. 2788 01:37:34,860 --> 01:37:39,831 >> THANK YOU ALL. 2789 01:37:39,831 --> 01:37:40,932 FIRST FOR YOUR COMMITMENT OF THE 2790 01:37:40,932 --> 01:37:44,970 WORK YOU DO FOR THIS VERY 2791 01:37:44,970 --> 01:37:45,337 IMPORTANT WORK. 2792 01:37:45,337 --> 01:37:46,338 THANK YOU FOR PROVIDING THAT 2793 01:37:46,338 --> 01:37:47,339 BACKGROUND INFORMATION. 2794 01:37:47,339 --> 01:37:49,207 LET'S DIVE RIGHT INTO OUR 2795 01:37:49,207 --> 01:37:49,508 DISCUSSION. 2796 01:37:49,508 --> 01:37:51,042 IT IS OFTEN SAID THAT CERTAIN 2797 01:37:51,042 --> 01:37:52,744 POPULATIONS ARE HARD TO REACH. 2798 01:37:52,744 --> 01:37:53,912 BUT EACH OF YOU HAVE BEEN 2799 01:37:53,912 --> 01:37:55,247 SUCCESSFUL IN PERFORMING 2800 01:37:55,247 --> 01:37:57,649 RESEARCH IN UNDERREPRESENTED 2801 01:37:57,649 --> 01:37:58,550 POPULATIONS. 2802 01:37:58,550 --> 01:37:59,217 DEMONSTRATING THAT IT IS 2803 01:37:59,217 --> 01:38:01,620 FEASIBLE TO REACH THESE 2804 01:38:01,620 --> 01:38:01,920 POPULATIONS. 2805 01:38:01,920 --> 01:38:03,255 CAN YOU PLEASE DESCRIBE THE 2806 01:38:03,255 --> 01:38:04,089 STRATEGIES AND TOOLS THAT YOU 2807 01:38:04,089 --> 01:38:07,259 HAVE USED FOR OUTREACH TO THESE 2808 01:38:07,259 --> 01:38:08,026 POPULATIONS? 2809 01:38:08,026 --> 01:38:14,800 AND ANYONE CAN START FIRST. 2810 01:38:14,800 --> 01:38:18,103 >> I'LL START FIRST IF I MAY. 2811 01:38:18,103 --> 01:38:20,405 I THINK THAT'S A MISNOMER, IT'S 2812 01:38:20,405 --> 01:38:21,106 LABOR-INTENSIVE. 2813 01:38:21,106 --> 01:38:23,842 I THINK THAT'S A BIG 2814 01:38:23,842 --> 01:38:24,376 DISTINCTION. 2815 01:38:24,376 --> 01:38:25,811 I WOULD LIKE TO HEAR THAT 2816 01:38:25,811 --> 01:38:27,546 THEY'RE LABOR -INTENSIVE, THEY DO 2817 01:38:27,546 --> 01:38:29,448 NOT UTILIZE THE SAME METHODOLOGY 2818 01:38:29,448 --> 01:38:31,316 THAT MAJORITY POPULATIONS USE, 2819 01:38:31,316 --> 01:38:34,386 WHICH MEANS THEY REQUIRE MORE -- 2820 01:38:34,386 --> 01:38:37,055 YOU CAN'T DO CODE MAILINGS, YOU 2821 01:38:37,055 --> 01:38:38,790 HAVE TO HAVE MORE DIRECT 2822 01:38:38,790 --> 01:38:39,658 CONTACT, MORE TRUST BUILDING IN 2823 01:38:39,658 --> 01:38:41,693 THE COMMUNITY, INVOLVE MORE AND 2824 01:38:41,693 --> 01:38:42,661 ENGAGE MORE WITH THE LEADERSHIP 2825 01:38:42,661 --> 01:38:44,763 IN THE COMMUNITY, AND BE PART OF 2826 01:38:44,763 --> 01:38:47,866 THE COMMUNITY AND NOT JUST DO 2827 01:38:47,866 --> 01:38:48,333 HELICOPTER SCIENCE. 2828 01:38:48,333 --> 01:38:49,401 SO WHEN I THINK ABOUT REACHING 2829 01:38:49,401 --> 01:38:50,335 OUT AND WORKING IN THE COMMUNITY 2830 01:38:50,335 --> 01:38:53,371 AS WE DO, MY OFFICE EVEN IS 2831 01:38:53,371 --> 01:38:54,406 LOCATED IN THE COMMUNITY NOW, SO 2832 01:38:54,406 --> 01:38:56,174 THAT WE ARE PART OF THE FABRIC 2833 01:38:56,174 --> 01:38:57,142 OF THE COMMUNITY. 2834 01:38:57,142 --> 01:38:59,311 WE HAVE A LOT OF EDUCATIONAL 2835 01:38:59,311 --> 01:39:01,446 PROGRAMS SO THAT WE CAN EDUCATE 2836 01:39:01,446 --> 01:39:02,647 THEM ABOUT CLINICAL TRIALS IN 2837 01:39:02,647 --> 01:39:02,981 PARTICULAR. 2838 01:39:02,981 --> 01:39:05,150 AND WE HAVE SUCCESS BECAUSE WE 2839 01:39:05,150 --> 01:39:06,718 REALLY WORK WITH THE COMMUNITY, 2840 01:39:06,718 --> 01:39:08,487 FINDING OUT WHAT THEY NEED, 2841 01:39:08,487 --> 01:39:09,921 UTILIZING OUR COMMUNITY ADVISORY 2842 01:39:09,921 --> 01:39:12,224 COUNCIL THAT IS VERY 2843 01:39:12,224 --> 01:39:13,925 INSTRUMENTAL IN REACHING OUT TO 2844 01:39:13,925 --> 01:39:15,660 THE COMMUNITY, HAVING THEIR 2845 01:39:15,660 --> 01:39:16,761 FINGERS ON THE PULSE OF THE 2846 01:39:16,761 --> 01:39:18,497 COMMUNITY, KNOWING WHAT'S OF 2847 01:39:18,497 --> 01:39:20,198 INTEREST AND HOW WE SHOULD BRING 2848 01:39:20,198 --> 01:39:22,400 PEOPLE IN AND START DISCUSSING 2849 01:39:22,400 --> 01:39:23,468 UPCOMING CLINICAL TRIALS AND 2850 01:39:23,468 --> 01:39:24,870 CURRENTLY ONGOING CLINICAL 2851 01:39:24,870 --> 01:39:25,370 TRIALS. 2852 01:39:25,370 --> 01:39:27,038 SO I THINK HARD TO REACH SHOULD 2853 01:39:27,038 --> 01:39:29,207 NOT BE THE WORD GOING FORWARD. 2854 01:39:29,207 --> 01:39:32,077 IT'S JUST LABOR-INTENSIVE. 2855 01:39:32,077 --> 01:39:35,380 >> I'LL GO NEXT. 2856 01:39:35,380 --> 01:39:39,684 I AGREE, IN FACT, MY APPROACH IS 2857 01:39:39,684 --> 01:39:40,952 ONE WHERE I'D SAY IT'S HARD NOT 2858 01:39:40,952 --> 01:39:42,287 TO REACH. 2859 01:39:42,287 --> 01:39:45,390 I'VE BEEN WORKING WITH COMMUNITY 2860 01:39:45,390 --> 01:39:46,591 HEALTH CENTERS FOR OVER 30 2861 01:39:46,591 --> 01:39:47,659 YEARS, AND WHEN YOU DO THAT KIND 2862 01:39:47,659 --> 01:39:54,065 OF WORK, IT VERY GENERALIZABLE 2863 01:39:54,065 --> 01:39:56,234 BECAUSE THERE ARE OVER 1,400 2864 01:39:56,234 --> 01:39:57,369 COMMUNITY HEALTH CENTERS IN THE 2865 01:39:57,369 --> 01:39:59,037 UNITED STATES SERVING 30 MILLION 2866 01:39:59,037 --> 01:40:00,672 PATIENTS. 2867 01:40:00,672 --> 01:40:03,408 20% OF THE SAMPLE IS UNINSURED, 2868 01:40:03,408 --> 01:40:06,011 59% ARE PUBLICLY INSURED, 90% 2869 01:40:06,011 --> 01:40:08,480 ARE LOW INCOME, MANY OF THEM 2870 01:40:08,480 --> 01:40:12,617 SPEAK DIFFERENT LANGUAGES, AND 2871 01:40:12,617 --> 01:40:14,052 SOME OF THEM ARE RURAL. 2872 01:40:14,052 --> 01:40:16,288 SO I'VE ALWAYS BEEN A BIG 2873 01:40:16,288 --> 01:40:18,456 PROMOTER OF WORKING WITH THOSE 2874 01:40:18,456 --> 01:40:20,992 HEALTH CENTERS BECAUSE YOU 2875 01:40:20,992 --> 01:40:23,795 ELIMINATE THE HARD TO REACH, 2876 01:40:23,795 --> 01:40:24,629 BECAUSE IT'S HARD TO REACH THE 2877 01:40:24,629 --> 01:40:25,864 GENERAL POPULATION IF YOU'RE 2878 01:40:25,864 --> 01:40:27,832 SAMPLING FROM THAT COHORT. 2879 01:40:27,832 --> 01:40:29,434 BUT THE OTHER THING, TOO, IS 2880 01:40:29,434 --> 01:40:31,937 THAT THEY'RE COMMUNITY-BASED, 2881 01:40:31,937 --> 01:40:34,439 AND SO WHAT I DID WAS RATHER 2882 01:40:34,439 --> 01:40:37,542 THAN SET UP MY RESEARCH LAB ON 2883 01:40:37,542 --> 01:40:38,643 CAMPUS AT A UNIVERSITY DISTANT 2884 01:40:38,643 --> 01:40:41,046 FROM THE TARGET POPULATION, I 2885 01:40:41,046 --> 01:40:42,247 CREATED ONE IN THE COMMUNITY 2886 01:40:42,247 --> 01:40:48,520 WHERE THIS HEALTH CENTER IS TO 2887 01:40:48,520 --> 01:40:49,854 FACILITATE CLINICAL TRIALS AND 2888 01:40:49,854 --> 01:40:50,755 LONGITUDINAL STUDIES AND HAVE 2889 01:40:50,755 --> 01:40:51,990 THE SPACE AND THE EQUIPMENT TO 2890 01:40:51,990 --> 01:40:52,824 DO THE KIND OF RESEARCH THAT I 2891 01:40:52,824 --> 01:40:57,329 DO. 2892 01:40:57,329 --> 01:40:58,530 SO I ALWAYS RECOMMEND IF YOU'RE 2893 01:40:58,530 --> 01:40:59,564 TRYING TO REACH THE HARD TO 2894 01:40:59,564 --> 01:41:00,632 REACH, DEFINITELY THE COMMUNITY 2895 01:41:00,632 --> 01:41:01,967 HEALTH CENTERS ARE A GOOD WAY TO 2896 01:41:01,967 --> 01:41:04,903 DO THAT. 2897 01:41:04,903 --> 01:41:06,137 THE OTHER BENEFIT IS THEY 2898 01:41:06,137 --> 01:41:07,105 ALREADY HAVE ACCESS TO CARE IN 2899 01:41:07,105 --> 01:41:08,807 SOME FORM, SO IF YOU DO DETECT 2900 01:41:08,807 --> 01:41:10,675 HEALTH CONDITIONS OR SCREEN FOR 2901 01:41:10,675 --> 01:41:14,446 THE THINGS THAT THEY DON'T KNOW, 2902 01:41:14,446 --> 01:41:15,647 THEY HAVE ACCESS TO CARE AND 2903 01:41:15,647 --> 01:41:16,615 THAT'S NOT AN ISSUE. 2904 01:41:16,615 --> 01:41:18,483 SO THAT'S BEEN MY MODEL FOR 2905 01:41:18,483 --> 01:41:19,250 TRYING TO REACH THE HARD TO 2906 01:41:19,250 --> 01:41:21,720 REACH. 2907 01:41:21,720 --> 01:41:23,555 >> SO I WANTED TO JUMP IN HERE 2908 01:41:23,555 --> 01:41:24,823 AND JUST ADD THAT I THINK, YOU 2909 01:41:24,823 --> 01:41:28,226 KNOW, IF YOU'RE DOING, YOU KNOW, 2910 01:41:28,226 --> 01:41:29,728 CROSS-SITE WORK WHERE IT'S NOT 2911 01:41:29,728 --> 01:41:34,065 POTENTIALLY FEASIBLE TO HAVE A 2912 01:41:34,065 --> 01:41:35,367 KIND OF BRICK AND MORTAR 2913 01:41:35,367 --> 01:41:36,668 LOCATION, YOU KNOW, WITHIN THE 2914 01:41:36,668 --> 01:41:37,902 COMMUNITIES THAT YOU'RE WORKING, 2915 01:41:37,902 --> 01:41:40,572 I THINK TIME IN THE COMMUNITY IS 2916 01:41:40,572 --> 01:41:43,842 REALLY CRITICAL, AND REALLY 2917 01:41:43,842 --> 01:41:46,578 WORKING WITH, I THINK, NIH AND 2918 01:41:46,578 --> 01:41:48,179 OTHER FUNDERS TO REALLY 2919 01:41:48,179 --> 01:41:50,582 UNDERSTAND THAT THIS -- THE 2920 01:41:50,582 --> 01:41:59,224 TRAVEL FUNDING REALLY IS 2921 01:41:59,224 --> 01:42:00,425 NECESSARY, AND THAT IT'S A 2922 01:42:00,425 --> 01:42:01,393 CRITICAL PART OF THE WORK SO YOU 2923 01:42:01,393 --> 01:42:03,361 HAVE RESOURCES TO SPEND TIME IN 2924 01:42:03,361 --> 01:42:09,000 THE COMMUNITY SO IT'S NOT AS DRD 2925 01:42:09,000 --> 01:42:10,201 HELICOPTER, WE CALL IT MOS 2926 01:42:10,201 --> 01:42:11,603 RESEARCH WHERE YOU FLY IN, TAKE 2927 01:42:11,603 --> 01:42:14,639 YOUR SAMPLES, DATA, AND FLY BACK 2928 01:42:14,639 --> 01:42:15,106 OUT. 2929 01:42:15,106 --> 01:42:18,977 I ALSO THINK EVERYTHING THAT THE 2930 01:42:18,977 --> 01:42:20,278 PANELISTS HAVE SAID IN TERMS OF 2931 01:42:20,278 --> 01:42:23,648 REALLY LISTENING TO WHAT THE 2932 01:42:23,648 --> 01:42:24,416 COMMUNITIES NEED AND REALLY 2933 01:42:24,416 --> 01:42:27,652 BUILDING ON THAT. 2934 01:42:27,652 --> 01:42:28,987 SO YOU MAY START IN A CERTAIN 2935 01:42:28,987 --> 01:42:31,122 AREA BUT REALLY BE LISTENING TO 2936 01:42:31,122 --> 01:42:32,757 WHAT COMMUNITIES NEED. 2937 01:42:32,757 --> 01:42:34,292 AND IF YOU AREN'T ABLE TO REALLY 2938 01:42:34,292 --> 01:42:40,565 RESPOND TO THAT NEED, YOU KNOW, 2939 01:42:40,565 --> 01:42:41,800 REALLY HELPING TO IDENTIFY 2940 01:42:41,800 --> 01:42:42,767 PARTNERS THAT REALLY COULD 2941 01:42:42,767 --> 01:42:49,274 RESPOND TO THOSE NEEDS. 2942 01:42:49,274 --> 01:42:50,608 >> I'D LIKE TO ADD ONE MORE 2943 01:42:50,608 --> 01:42:51,142 THING. 2944 01:42:51,142 --> 01:42:52,911 I THINK -- I FORGOT TO MENTION 2945 01:42:52,911 --> 01:42:54,846 THE CONCEPT OF COMMUNITY-BASED 2946 01:42:54,846 --> 01:42:56,281 PARTICIPATORY RESEARCH, WHICH 2947 01:42:56,281 --> 01:42:58,383 HAS BEEN THEMATIC THROUGHOUT 2948 01:42:58,383 --> 01:43:00,485 BOTH DAYS OF THIS CONFERENCE. 2949 01:43:00,485 --> 01:43:02,620 SO MY RESEARCH HAS NOT BEEN 2950 01:43:02,620 --> 01:43:04,355 FOCUSED ON THINGS THAT I WANT TO 2951 01:43:04,355 --> 01:43:04,522 DO. 2952 01:43:04,522 --> 01:43:06,458 IT'S ALWAYS BEEN WHAT THE CLINIC 2953 01:43:06,458 --> 01:43:09,127 NEEDS FOR THEIR COMMUNITY TO 2954 01:43:09,127 --> 01:43:12,363 HELP UNDERSTAND THE HEALTH 2955 01:43:12,363 --> 01:43:14,232 CONDITIONS, THROUGH EPIDEMIOLOGY 2956 01:43:14,232 --> 01:43:15,867 AND TO DESIGN INTERVENTIONS FOR 2957 01:43:15,867 --> 01:43:17,402 CHRONIC DISEASE THAT COULD 2958 01:43:17,402 --> 01:43:22,040 POSSIBLY BE IMPLEMENTED BASED ON 2959 01:43:22,040 --> 01:43:22,741 THE ECONOMIC ENVIRONMENT THAT 2960 01:43:22,741 --> 01:43:24,342 THEY'RE WORKING, THE CHANGING 2961 01:43:24,342 --> 01:43:26,811 DEMANDS OF HRSA, WHICH KIND OF 2962 01:43:26,811 --> 01:43:27,679 DICTATE WHAT DIRECTION THEY 2963 01:43:27,679 --> 01:43:31,416 SHOULD BE GOING, SO SITTING DOWN 2964 01:43:31,416 --> 01:43:34,619 WITH THEM, FICKING FIGURING OUT 2965 01:43:34,619 --> 01:43:36,054 THEY WANT TO DO, WHAT THEY NEED, 2966 01:43:36,054 --> 01:43:37,956 AND THEN LOOKING FOR THE 2967 01:43:37,956 --> 01:43:38,890 FUNDING, RATHER THAN VICE VERSA 2968 01:43:38,890 --> 01:43:42,160 IS ALSO A GOOD STRATEGY. 2969 01:43:42,160 --> 01:43:46,064 >> GREAT. 2970 01:43:46,064 --> 01:43:46,231 MAY? 2971 01:43:46,231 --> 01:43:47,732 >> I'LL JUST ADD TO THAT. 2972 01:43:47,732 --> 01:43:49,467 LIKE OUR PREVIOUS PANELISTS SAID 2973 01:43:49,467 --> 01:43:50,969 AND I THINK THROUGHOUT THESE 2974 01:43:50,969 --> 01:43:52,370 PAST TWO DAYS IS THAT 2975 01:43:52,370 --> 01:43:53,037 PRIORITIZING THE STRUCTURE OF 2976 01:43:53,037 --> 01:43:55,140 THE TEAM IS VERY CRITICAL, SO 2977 01:43:55,140 --> 01:43:56,574 INCLUDING COMMUNITY MEMBERS AS 2978 01:43:56,574 --> 01:44:01,045 EQUAL PARTS IN THE STUDY FROM 2979 01:44:01,045 --> 01:44:04,048 QUESTION DEVELOPMENT TO FUNDING, 2980 01:44:04,048 --> 01:44:05,683 DATA ANALYSES AND DISSEMINATION. 2981 01:44:05,683 --> 01:44:07,452 I KNOW FOR ASIAN POPULATIONS, 2982 01:44:07,452 --> 01:44:08,920 ENSURING THAT THERE'S A COVERAGE 2983 01:44:08,920 --> 01:44:10,889 OF CULTURAL, LINGUISTIC, 2984 01:44:10,889 --> 01:44:13,091 IMMIGRATION STATUSES, THAT MEETS 2985 01:44:13,091 --> 01:44:15,426 THE NEEDS OF THE COMMUNITY ALSO 2986 01:44:15,426 --> 01:44:16,528 ENSURE SUCCESS IN TERMS OF 2987 01:44:16,528 --> 01:44:17,829 OUTREACH AND RECRUITMENT. 2988 01:44:17,829 --> 01:44:19,564 WE KNOW THAT OUTREACH IS BEST 2989 01:44:19,564 --> 01:44:20,598 ACCOMPLISHED THROUGH OUR 2990 01:44:20,598 --> 01:44:22,033 COMMUNITY PARTNERS, THOSE WHO 2991 01:44:22,033 --> 01:44:24,002 ARE ACTUALLY FROM THE COMMUNITY 2992 01:44:24,002 --> 01:44:25,403 ORGANIZATIONS WHO HAVE TRUSTED 2993 01:44:25,403 --> 01:44:26,771 RELATIONSHIPS AND HAVE NETWORKS 2994 01:44:26,771 --> 01:44:28,973 ALREADY IN PLACE. 2995 01:44:28,973 --> 01:44:33,344 AND INFORMING STUDENTS THAT 2996 01:44:33,344 --> 01:44:36,447 AOPPORTUNITIES THATALREADY EXIS. 2997 01:44:36,447 --> 01:44:37,749 I'D ALSO SAY IN TERMS OF 2998 01:44:37,749 --> 01:44:39,384 OUTREACH AND THINKING ABOUT THE 2999 01:44:39,384 --> 01:44:40,552 POPULATIONS THAT WE'RE TRYING TO 3000 01:44:40,552 --> 01:44:44,022 FOCUS ON, I THINK THAT DOING 3001 01:44:44,022 --> 01:44:45,456 STRATEGIES LIKE COMMUNITY 3002 01:44:45,456 --> 01:44:47,926 MAPPING, AND SO TRIANGULATING 3003 01:44:47,926 --> 01:44:51,663 EXISTING DATA USING CENSUS TRACT 3004 01:44:51,663 --> 01:44:53,832 DATA WITH KEY INFORMANT 3005 01:44:53,832 --> 01:44:55,633 INTERVIEWS, WITH GOOGLE 3006 01:44:55,633 --> 01:44:56,601 METADATA, THINKING ABOUT THE 3007 01:44:56,601 --> 01:44:58,136 DIFFERENT LANDSCAPES OF AREAS 3008 01:44:58,136 --> 01:45:00,238 WHERE YOUR POPULATIONS MIGHT 3009 01:45:00,238 --> 01:45:02,473 SPEND TIME, I THINK IS ANOTHER 3010 01:45:02,473 --> 01:45:04,909 WAY TO COMPREHENSIVELY 3011 01:45:04,909 --> 01:45:06,744 UNDERSTAND HOW BEST TO RECRUIT 3012 01:45:06,744 --> 01:45:08,046 FOLKS. 3013 01:45:08,046 --> 01:45:10,014 AND I WOULD ALSO JUST ECHO KIND 3014 01:45:10,014 --> 01:45:11,716 OF MEETING THE PARTICIPANTS 3015 01:45:11,716 --> 01:45:16,521 WHERE THEY ARE SO HAVING HYBRID 3016 01:45:16,521 --> 01:45:19,490 STUDY PROCEDURES, TRANSPORTATION 3017 01:45:19,490 --> 01:45:20,859 REIMBURSEMENTS, PROVIDING MEALS 3018 01:45:20,859 --> 01:45:22,927 DURING GROUP DISCUSSIONS. 3019 01:45:22,927 --> 01:45:24,596 AND ACCOMMODATING FOR 3020 01:45:24,596 --> 01:45:26,664 PARTICIPANT TIME IS REALLY 3021 01:45:26,664 --> 01:45:28,566 CRITICAL TO MEETING COMMUNITIES 3022 01:45:28,566 --> 01:45:32,971 WHERE THEY'RE AT. 3023 01:45:32,971 --> 01:45:35,240 >> THANK YOU. 3024 01:45:35,240 --> 01:45:36,908 VA'A, DID YOU WANT TO ADD 3025 01:45:36,908 --> 01:45:37,175 SOMETHING? 3026 01:45:37,175 --> 01:45:40,912 >> SURE, I AGREE WITH EVERYTHING 3027 01:45:40,912 --> 01:45:41,646 EVERYONE HAS SHARED. 3028 01:45:41,646 --> 01:45:42,647 KIND OF PUTTING THAT INTO 3029 01:45:42,647 --> 01:45:45,416 PRACTICE FOR OUR STUDY, WE USE 3030 01:45:45,416 --> 01:45:46,384 RESPONDENT-DRIVEN SAMPLING TO 3031 01:45:46,384 --> 01:45:47,485 CONNECT WITH OUR COMMUNITY. 3032 01:45:47,485 --> 01:45:49,354 AND WE DID ACTUALLY HAVE A 3033 01:45:49,354 --> 01:45:50,722 CONVERSATION WITH SOME COMMUNITY 3034 01:45:50,722 --> 01:45:53,358 MEMBERS ABOUT THAT BEFORE. 3035 01:45:53,358 --> 01:45:55,326 SO IT'S KIND OF LIKE A SNOWBALL 3036 01:45:55,326 --> 01:45:58,830 SAMPLING DESIGN. 3037 01:45:58,830 --> 01:46:00,431 WE LIMIT TO THREE PEOPLE, SO IF 3038 01:46:00,431 --> 01:46:02,400 A PERSON WOULD COME IN, TAKE OUR 3039 01:46:02,400 --> 01:46:03,635 SURVEY, AND THEN THEY WOULD GET 3040 01:46:03,635 --> 01:46:07,038 THREE COUPONS -- I'M SORRY, ONCE 3041 01:46:07,038 --> 01:46:09,007 THEY COMPLETE THE SURVEY, THEY 3042 01:46:09,007 --> 01:46:10,541 WOULD RECEIVE AN INCENTIVE, A 3043 01:46:10,541 --> 01:46:12,110 CASH INCENTIVE OF $25. 3044 01:46:12,110 --> 01:46:13,645 THEN THEY WOULD GET THREE 3045 01:46:13,645 --> 01:46:14,178 COUPONS. 3046 01:46:14,178 --> 01:46:16,948 AND THOSE COUPONS, IF THOSE 3047 01:46:16,948 --> 01:46:19,017 THREE PEOPLE CAME IN, THEY GOT 3048 01:46:19,017 --> 01:46:20,251 AN ADDITIONAL $15 PER PERSON FOR 3049 01:46:20,251 --> 01:46:22,153 THOSE PEOPLE THAT CAME IN, AND 3050 01:46:22,153 --> 01:46:23,354 THEN THE WAVES CONTINUED LIKE 3051 01:46:23,354 --> 01:46:26,224 THAT. 3052 01:46:26,224 --> 01:46:27,959 WE FELT THAT INCENTIVIZING WAS A 3053 01:46:27,959 --> 01:46:31,029 GOOD WAY TO CONNECT WITH THEM AS 3054 01:46:31,029 --> 01:46:32,764 WELL, BUT ALSO ALLOWING THEM TO 3055 01:46:32,764 --> 01:46:33,965 USE THEIR SOCIAL NETWORKS AND 3056 01:46:33,965 --> 01:46:35,466 WAYS OF COMMUNICATING TO RECRUIT 3057 01:46:35,466 --> 01:46:36,868 PEOPLE BACK INTO OUR STUDY. 3058 01:46:36,868 --> 01:46:42,273 OUR SAMPLE SIZE WAS 78 780 PEOE 3059 01:46:42,273 --> 01:46:43,508 WITHIN OUR FIRST GROUP, AND 3060 01:46:43,508 --> 01:46:45,376 WE'VE ACHIEVED OUR SAMPLE WITHIN 3061 01:46:45,376 --> 01:46:48,413 50 DAYS OF STARTING, 50 BUSINESS 3062 01:46:48,413 --> 01:46:50,148 DAYS. 3063 01:46:50,148 --> 01:46:52,216 SO IT WAS REALLY -- WELL, IT WAS 3064 01:46:52,216 --> 01:46:55,687 SUCCESSFUL FOR US AND OTHER 3065 01:46:55,687 --> 01:46:59,257 PARTNERS THAT WE HAD AND SOME 3066 01:46:59,257 --> 01:47:01,326 OTHER INSTITUTIONS REALLY HAD 3067 01:47:01,326 --> 01:47:02,327 PROBLEMS CONNECTING WITH THE 3068 01:47:02,327 --> 01:47:04,395 SAME GROUP. 3069 01:47:04,395 --> 01:47:08,132 SO AGAIN, WHAT EVERYONE ELSE IS 3070 01:47:08,132 --> 01:47:09,701 KIND OF SHARING HERE, WE KIND OF 3071 01:47:09,701 --> 01:47:11,669 PUT THAT INTO PRACTICE, AND IT 3072 01:47:11,669 --> 01:47:13,571 WORKED OUT WELL FOR US. 3073 01:47:13,571 --> 01:47:14,439 >> THANK YOU. 3074 01:47:14,439 --> 01:47:16,240 YOU GUYS ARE VERY CLEARLY 3075 01:47:16,240 --> 01:47:17,675 ARTICULATING WHY IT'S NOT HARD 3076 01:47:17,675 --> 01:47:20,778 TO REACH, IT'S REALLY 3077 01:47:20,778 --> 01:47:21,212 LABOR-INTENSIVE. 3078 01:47:21,212 --> 01:47:23,281 I WANT TO GO TO JENNIFER, 3079 01:47:23,281 --> 01:47:25,483 BECAUSE I KNOW THAT THERE ARE 3080 01:47:25,483 --> 01:47:27,285 SOME QUESTIONS COMING IN FROM 3081 01:47:27,285 --> 01:47:28,052 THE CHAT. 3082 01:47:28,052 --> 01:47:29,721 JENNIFER? 3083 01:47:29,721 --> 01:47:31,789 >> SURE. 3084 01:47:31,789 --> 01:47:33,324 SO ONE QUESTION I THINK MAY BE 3085 01:47:33,324 --> 01:47:35,493 DIRECTED TO GREG. 3086 01:47:35,493 --> 01:47:36,894 BUT ALSO OTHERS. 3087 01:47:36,894 --> 01:47:38,062 IS THERE COMMUNITY 3088 01:47:38,062 --> 01:47:40,164 REPRESENTATION ON THE CLINIC'S 3089 01:47:40,164 --> 01:47:42,233 BOARD AND INVOLVED IN 3090 01:47:42,233 --> 01:47:45,803 DECISION-MAKING? 3091 01:47:45,803 --> 01:47:48,206 >> YEAH, THAT'S A GOOD POINT. 3092 01:47:48,206 --> 01:47:49,841 MY FEDERAL REGULATION, IF YOU'RE 3093 01:47:49,841 --> 01:47:52,810 A FEDERALLY QUALIFIED COMMUNITY 3094 01:47:52,810 --> 01:47:53,745 HEALTH CENTER, YOU'RE SUPPOSED 3095 01:47:53,745 --> 01:47:59,317 TO HAVE TO BE 1% -- WELL, NOT 3096 01:47:59,317 --> 01:48:00,852 COMMUNITY, ACTUALLY REGISTERED 3097 01:48:00,852 --> 01:48:02,687 PATIENTS ON YOUR BOARD. 3098 01:48:02,687 --> 01:48:04,422 SO THE CHAIR OF THE BOARD OF 3099 01:48:04,422 --> 01:48:05,523 DIRECTORS FOR OUR COMMUNITY 3100 01:48:05,523 --> 01:48:08,259 HEALTH CENTER IS A PATIENT -- 3101 01:48:08,259 --> 01:48:09,827 ACTUAL PATIENT AND A PARTICIPANT 3102 01:48:09,827 --> 01:48:12,830 OF ONE OF MY -- MATCHED TRIALS 3103 01:48:12,830 --> 01:48:13,331 ON THE BOARD. 3104 01:48:13,331 --> 01:48:14,432 SO THEY'RE AWARE OF THE RESEARCH 3105 01:48:14,432 --> 01:48:20,872 THAT'S GOING ON, BUT ABOUT 20 3106 01:48:20,872 --> 01:48:22,607 YEARS AGO, WE CREATED A RESEARCH 3107 01:48:22,607 --> 01:48:24,275 DEPARTMENT WITHIN THE COMMUNITY 3108 01:48:24,275 --> 01:48:30,481 HEALTH CENTER, SEPARATE LINE 3109 01:48:30,481 --> 01:48:31,983 ITEM/ENTITY WITHIN THERE 3110 01:48:31,983 --> 01:48:34,085 COMPOSED OF STAFF MEMBERS FROM 3111 01:48:34,085 --> 01:48:35,319 THE HEALTH CENTER, AND THEY 3112 01:48:35,319 --> 01:48:35,987 CHANNEL THE INFORMATION UP TO 3113 01:48:35,987 --> 01:48:39,290 THE CEO AND OFTEN OUR DIRECTOR 3114 01:48:39,290 --> 01:48:41,959 OF RESEARCH PRESENTS TO THE 3115 01:48:41,959 --> 01:48:43,961 BOARD OF DIRECTORS, SO THEY'RE 3116 01:48:43,961 --> 01:48:45,663 AWARE AND VERY INTERESTED IN THE 3117 01:48:45,663 --> 01:48:47,765 RESEARCH PROJECTS THAT ARE BEING 3118 01:48:47,765 --> 01:48:49,734 CONDUCTED WITH THE PATIENTS OF 3119 01:48:49,734 --> 01:48:51,669 THE HEALTH CENTER. 3120 01:48:51,669 --> 01:48:52,437 HOPE THAT ANSWERED YOUR 3121 01:48:52,437 --> 01:48:59,010 QUESTION. 3122 01:48:59,010 --> 01:48:59,977 >> THANK YOU. 3123 01:48:59,977 --> 01:49:01,612 JENNIFER, DO YOU WANT TO GO TO A 3124 01:49:01,612 --> 01:49:02,814 QUESTION IN THE CHAT? 3125 01:49:02,814 --> 01:49:04,348 >> SURE. 3126 01:49:04,348 --> 01:49:05,983 ANOTHER QUESTION IS, I THINK 3127 01:49:05,983 --> 01:49:08,286 THIS IS FOR EVERYBODY, CAN YOU 3128 01:49:08,286 --> 01:49:10,421 COMMENT ON RECRUITING 3129 01:49:10,421 --> 01:49:13,057 COMMUNITIES WHO MAY HAVE LOW 3130 01:49:13,057 --> 01:49:14,926 LEVELS OF LITERACY OR EDUCATION 3131 01:49:14,926 --> 01:49:16,327 OR KNOWLEDGE ABOUT THE CONDITION 3132 01:49:16,327 --> 01:49:17,261 YOU'RE STUDYING? 3133 01:49:17,261 --> 01:49:21,899 IS THERE ROOM FOR EDUCATION? 3134 01:49:21,899 --> 01:49:23,401 >> I WILL START. 3135 01:49:23,401 --> 01:49:25,436 THE ANSWER IS YES. 3136 01:49:25,436 --> 01:49:25,837 RESOUNDING YES. 3137 01:49:25,837 --> 01:49:30,141 I DON'T THINK ANYBODY CAN BE 3138 01:49:30,141 --> 01:49:31,242 TARGETED TO BE LEFT BEHIND. 3139 01:49:31,242 --> 01:49:32,877 WE HAVE A STUDY ON GENETICS, SO 3140 01:49:32,877 --> 01:49:35,012 IF YOU THINK ABOUT GENETICS, 3141 01:49:35,012 --> 01:49:38,049 GENETIC TESTING, GENETIC 3142 01:49:38,049 --> 01:49:41,119 COUNSELING, MANY MINORITIES, 3143 01:49:41,119 --> 01:49:42,753 UNDERSERVED, LOW HEALTH LITERACY 3144 01:49:42,753 --> 01:49:44,822 AND LOW LITERACY IN GENERAL KNOW 3145 01:49:44,822 --> 01:49:46,090 NOTHING ABOUT GENETIC TESTING 3146 01:49:46,090 --> 01:49:46,624 AND COUNSELING. 3147 01:49:46,624 --> 01:49:48,493 WE HAVE SPENT A WHOLE LAST 3148 01:49:48,493 --> 01:49:50,428 COUPLE OF YEARS FOCUSING ON 3149 01:49:50,428 --> 01:49:52,063 EDUCATING THE COMMUNITY ABOUT 3150 01:49:52,063 --> 01:49:53,598 GENETIC TESTING. 3151 01:49:53,598 --> 01:49:53,898 COUNSELING. 3152 01:49:53,898 --> 01:49:55,967 AS IT RELATES TO BREAST CANCER. 3153 01:49:55,967 --> 01:49:58,569 AND YOU'D BE SURPRISED THE 3154 01:49:58,569 --> 01:49:59,470 COMMUNITIES, WE'RE IN PUBLIC 3155 01:49:59,470 --> 01:50:00,571 HOUSING, WE'RE IN AREAS WHERE 3156 01:50:00,571 --> 01:50:02,807 THE LITERACY LEVEL IS QUITE LOW, 3157 01:50:02,807 --> 01:50:06,310 AND YOU BECOME VERY ENGAGED WITH 3158 01:50:06,310 --> 01:50:09,814 THOSE IN THE COMMUNITY BY HAVING 3159 01:50:09,814 --> 01:50:12,416 INFO GRAPHICS, HAVING SMALL 3160 01:50:12,416 --> 01:50:13,518 DISCUSSION GROUPS, HAVING THINGS 3161 01:50:13,518 --> 01:50:16,721 VERY COLORFUL, HAVING PEOPLE 3162 01:50:16,721 --> 01:50:20,091 TALK IN LAY TERMINOLOGY. 3163 01:50:20,091 --> 01:50:21,926 AND WE ACTUALLY HAD A VERY 3164 01:50:21,926 --> 01:50:23,461 SUCCESSFUL CLINICAL TRIAL 3165 01:50:23,461 --> 01:50:25,196 FOCUSING ON GENETICS AND 3166 01:50:25,196 --> 01:50:25,863 COUNSELING. 3167 01:50:25,863 --> 01:50:28,866 BUT IT TAKES TIME. 3168 01:50:28,866 --> 01:50:30,501 AGAIN, I JUST REITERATE, 3169 01:50:30,501 --> 01:50:31,002 LABOR-INTENSIVE. 3170 01:50:31,002 --> 01:50:33,237 YOU CAN DO A LOT, EVEN WITH LOW 3171 01:50:33,237 --> 01:50:34,005 LITERACY, WE ALWAYS SAY FROM THE 3172 01:50:34,005 --> 01:50:36,073 NIH PERSPECTIVE, WE ALWAYS READ 3173 01:50:36,073 --> 01:50:37,408 ABOUT YOU SHOULD HAVE EVERYTHING 3174 01:50:37,408 --> 01:50:38,976 AT AN 8TH GRADE LEVEL. 3175 01:50:38,976 --> 01:50:40,411 8TH GRADE IS PRETTY HIGH FOR 3176 01:50:40,411 --> 01:50:42,046 SOME PEOPLE. 3177 01:50:42,046 --> 01:50:44,882 BULL THE IDEA OF TALKING AND 3178 01:50:44,882 --> 01:50:46,384 COMMUNICATING AND DRILLING DOWN 3179 01:50:46,384 --> 01:50:47,818 AND MEETING PEOPLE WHERE THEY 3180 01:50:47,818 --> 01:50:50,121 ARE, YOU CAN BEGIN TO EXPLAIN. 3181 01:50:50,121 --> 01:50:52,356 WE DO A STUDY WITH THE HUMAN 3182 01:50:52,356 --> 01:50:55,026 GENOME RESEARCH INSTITUTE CALLED 3183 01:50:55,026 --> 01:50:55,359 FAMILY SHARES. 3184 01:50:55,359 --> 01:50:57,261 AND IN THAT STUDY, THEY LEARN 3185 01:50:57,261 --> 01:50:58,796 ABOUT THEIR FAMILY HISTORY, 3186 01:50:58,796 --> 01:50:59,797 ABOUT GENETICS. 3187 01:50:59,797 --> 01:51:02,667 THEY EVEN ARE GIVEN A BOOKLET TO 3188 01:51:02,667 --> 01:51:04,135 TAKE HOME AFTER THEY HAVE GOTTEN 3189 01:51:04,135 --> 01:51:06,504 THEIR FAMILY TO PARTICIPATE IN 3190 01:51:06,504 --> 01:51:07,705 IDENTIFYING WHAT DISEASES DO YOU 3191 01:51:07,705 --> 01:51:09,540 HAVE, WHAT THINGS DO YOU HAVE? 3192 01:51:09,540 --> 01:51:11,442 THEY NOW OWN BOOKLETS THAT THEY 3193 01:51:11,442 --> 01:51:13,578 CAN TAKE TO THEIR PRIMARY CARE 3194 01:51:13,578 --> 01:51:15,746 DOCTOR OR SOMEBODY THAT THEY 3195 01:51:15,746 --> 01:51:16,948 HELPED DEVELOP WITH THE 3196 01:51:16,948 --> 01:51:18,783 SCIENTISTS, WITH THE COMMUNITY, 3197 01:51:18,783 --> 01:51:20,218 WITH THEIR FAMILY MEMBERS THAT 3198 01:51:20,218 --> 01:51:21,619 THEY SAID THEY WOULD NEVER HAVE 3199 01:51:21,619 --> 01:51:22,887 KNOWN ABOUT THEIR FAMILY HISTORY 3200 01:51:22,887 --> 01:51:24,455 OR ANYTHING ABOUT GENETICS. 3201 01:51:24,455 --> 01:51:27,191 SOME HAVE BEEN TESTED FOR 3202 01:51:27,191 --> 01:51:28,793 BRCA1 AND BRCA2, BUT THEY LEARN 3203 01:51:28,793 --> 01:51:30,228 ALL OF THIS AND THEN THEY CARRY 3204 01:51:30,228 --> 01:51:31,429 THIS BOOKLET THAT'S BEING GIVEN 3205 01:51:31,429 --> 01:51:33,331 TO THEM, SO THEY GET A CHANCE TO 3206 01:51:33,331 --> 01:51:34,865 REALLY, REALLY DELVE INTO 3207 01:51:34,865 --> 01:51:36,100 SOMETHING THEY HAVE NEVER HAD AN 3208 01:51:36,100 --> 01:51:37,068 INTEREST IN AND NEVER KNEW 3209 01:51:37,068 --> 01:51:39,704 ANYTHING ABOUT. 3210 01:51:39,704 --> 01:51:44,041 WE ALL ARE TEACHABLE. 3211 01:51:44,041 --> 01:51:47,778 >> I AGREE. 3212 01:51:47,778 --> 01:51:48,980 >> ONE OF THE THINGS WE 3213 01:51:48,980 --> 01:51:51,549 RECOGNIZED TOO WITH LOW LITERACY 3214 01:51:51,549 --> 01:51:53,851 IS THE VALIDITY OF THE DATA, AND 3215 01:51:53,851 --> 01:51:57,121 WHEN WE CAN, AND IT'S EXPENSIVE, 3216 01:51:57,121 --> 01:51:58,522 WE PREFER TO DO INTERYOU HAVE 3217 01:51:58,522 --> 01:52:02,293 ADMININTERVIEWADMINISTERED QUESO 3218 01:52:02,293 --> 01:52:04,328 WE CAN ELIMINATE SOME OF THE 3219 01:52:04,328 --> 01:52:06,597 MISUNDERSTANDING OR THE ROUTINE 3220 01:52:06,597 --> 01:52:08,032 YES/NO CHECK ANSWERS, THINGS 3221 01:52:08,032 --> 01:52:08,299 LIKE THAT. 3222 01:52:08,299 --> 01:52:10,768 SO IF YOU CAN AFFORD IT FOR LOW 3223 01:52:10,768 --> 01:52:12,503 LITERACY, INTERVIEW ADMINISTERED 3224 01:52:12,503 --> 01:52:16,741 IS MORE RELIABLE. 3225 01:52:16,741 --> 01:52:18,175 >> CAN I JUST ADD ON ONE THING, 3226 01:52:18,175 --> 01:52:19,510 YOU SAID THE WORD AFFORD. 3227 01:52:19,510 --> 01:52:23,314 WHEN WE WRITE GRANTS, WE ARE 3228 01:52:23,314 --> 01:52:24,749 EXPECTED TO REACH A CERTAIN 3229 01:52:24,749 --> 01:52:26,717 NUMBER OF MINORITIES, 3230 01:52:26,717 --> 01:52:27,985 UNDERSERVED, WHATEVER THE 3231 01:52:27,985 --> 01:52:30,955 POPULATION MAY BE. 3232 01:52:30,955 --> 01:52:32,923 BUT WE NEED NIH TO SUPPORT THAT 3233 01:52:32,923 --> 01:52:33,991 FINANCIALLY, BECAUSE WE NEED TO 3234 01:52:33,991 --> 01:52:34,892 PAY PEOPLE. 3235 01:52:34,892 --> 01:52:36,494 WHEN THEY SIT ON MY COMMUNITY 3236 01:52:36,494 --> 01:52:37,895 ADVISORY COUNCIL OR BOARD, I PAY 3237 01:52:37,895 --> 01:52:39,764 THEM AN HONORARIUM, BECAUSE 3238 01:52:39,764 --> 01:52:41,465 THEIR TIME IS JUST AS VALUABLE 3239 01:52:41,465 --> 01:52:43,134 AS OUR TIME. 3240 01:52:43,134 --> 01:52:45,236 IF HE WITH DON'T HAVE OUR 3241 01:52:45,236 --> 01:52:46,637 FINGERS -- IF WE DON'T HAVE OUR 3242 01:52:46,637 --> 01:52:47,538 FINGERS ON THE PULSE OF THE 3243 01:52:47,538 --> 01:52:49,140 COMMUNITY, WE WON'T HAVE 3244 01:52:49,140 --> 01:52:49,640 SUCCESS. 3245 01:52:49,640 --> 01:52:50,975 AND WHEN WE PUT IN COMMUNITY 3246 01:52:50,975 --> 01:52:52,043 PARTNERS, WE'VE SEEN THOSE 3247 01:52:52,043 --> 01:52:54,979 PARTNERS BE OMITTED FROM THE 3248 01:52:54,979 --> 01:52:56,147 GRANTS. 3249 01:52:56,147 --> 01:52:57,281 YOU JUST DON'T UNDERSTAND HOW 3250 01:52:57,281 --> 01:52:58,883 VALUABLE IT IS, HAVING THOSE 3251 01:52:58,883 --> 01:52:59,550 PARTNERSHIPS AND REALLY 3252 01:52:59,550 --> 01:53:00,651 RESPECTING THEIR INPUT, 3253 01:53:00,651 --> 01:53:01,519 RESPECTING THEIR VALUE SO THAT 3254 01:53:01,519 --> 01:53:03,254 WE CAN BE SUCCESSFUL. 3255 01:53:03,254 --> 01:53:05,122 SO YOU GIVE US THE MONEY AND WE 3256 01:53:05,122 --> 01:53:06,757 WANT TO GIVE IT OR SHARE IT WITH 3257 01:53:06,757 --> 01:53:10,161 THE COMMUNITY PARTNERS, AND THEY 3258 01:53:10,161 --> 01:53:11,896 SAID NO, WE'LL TAKE THAT OUT, 3259 01:53:11,896 --> 01:53:13,531 WE'LL CUT THE BUDGET BY THIS%. 3260 01:53:13,531 --> 01:53:16,133 YOU CUT THE COMMUNITY NEARTS BY 3261 01:53:16,133 --> 01:53:17,968 15%, 10%, WHATEVER, WE HAVE TO 3262 01:53:17,968 --> 01:53:19,603 WORK TWICE AS HARD TO GET THINGS 3263 01:53:19,603 --> 01:53:20,371 DONE. 3264 01:53:20,371 --> 01:53:21,372 AND SOMETIMES THEY'RE NOT HAPPY 3265 01:53:21,372 --> 01:53:25,943 WITH US. 3266 01:53:25,943 --> 01:53:26,911 THAT'S IT. 3267 01:53:26,911 --> 01:53:29,747 >> I'D LIKE JUST TO ADD ON TOO. 3268 01:53:29,747 --> 01:53:32,550 FOR US, WITH OUR HEALTH LITERACY 3269 01:53:32,550 --> 01:53:36,721 ASSESSMENT TOOL, WE'VE FOUND 3270 01:53:36,721 --> 01:53:39,123 THAT OVER 60% OF THE SAMPLE HAD 3271 01:53:39,123 --> 01:53:42,360 INADEQUATE OR MARGINAL HEALTH 3272 01:53:42,360 --> 01:53:43,094 LITERACY. 3273 01:53:43,094 --> 01:53:45,329 SO MOVING FORWARD, WE HAVE TO 3274 01:53:45,329 --> 01:53:46,630 REALLY CONSIDER THAT EVERYBODY 3275 01:53:46,630 --> 01:53:48,933 HAS LOW HEALTH LITERACY. 3276 01:53:48,933 --> 01:53:50,768 AND REALLY HAVE TO ADDRESS OUR 3277 01:53:50,768 --> 01:53:54,372 APPROACH TO THAT. 3278 01:53:54,372 --> 01:53:56,474 OTHER THINGS WE NEED TO CONSIDER 3279 01:53:56,474 --> 01:53:57,975 ESPECIALLY IN INDIGENOUS 3280 01:53:57,975 --> 01:53:58,943 POPULATIONS ARE THEIR 3281 01:53:58,943 --> 01:53:59,810 TRADITIONAL WAYS OF SHARING 3282 01:53:59,810 --> 01:54:00,144 KNOWLEDGE. 3283 01:54:00,144 --> 01:54:01,912 FOR US, PACIFIC ISLANDERS 3284 01:54:01,912 --> 01:54:04,949 MOSTLY, IT'S ABOUT ORAL SHARING. 3285 01:54:04,949 --> 01:54:06,450 SO LIKE DR. CAMPBELL MENTIONED, 3286 01:54:06,450 --> 01:54:08,552 IT'S ABOUT DISCUSSION, IT'S 3287 01:54:08,552 --> 01:54:11,255 ABOUT WE ARE MOVING FORWARD WITH 3288 01:54:11,255 --> 01:54:13,224 OUR ALZHEIMER'S PROJECT USING 3289 01:54:13,224 --> 01:54:15,059 COMMUNITY TALKS. 3290 01:54:15,059 --> 01:54:16,994 ON THE VILLAGE LEVEL AND REALLY 3291 01:54:16,994 --> 01:54:17,862 APPROACHING THE PEOPLE, MAKING 3292 01:54:17,862 --> 01:54:21,799 SURE THAT THEY UNDERSTAND WHAT 3293 01:54:21,799 --> 01:54:23,134 THE GENETIC APPROACH IS, WHAT'S 3294 01:54:23,134 --> 01:54:24,502 GOING TO HAPPEN WITH THEIR 3295 01:54:24,502 --> 01:54:25,603 SAMPLES, THEY HAVE THE SAY ON 3296 01:54:25,603 --> 01:54:29,440 WHAT'S GOING TO REALLY -- HOW 3297 01:54:29,440 --> 01:54:31,275 THE RESEARCH IS GOING TO BE USED 3298 01:54:31,275 --> 01:54:32,109 AND HOW DISSEMINATION IS GOING 3299 01:54:32,109 --> 01:54:33,010 TO HAPPEN. 3300 01:54:33,010 --> 01:54:37,882 SO THAT'S REALLY IMPORTANT. 3301 01:54:37,882 --> 01:54:39,784 >> LET ME JUST ADD ONE THING. 3302 01:54:39,784 --> 01:54:40,985 THIS WEEKEND OUR COMMUNITY 3303 01:54:40,985 --> 01:54:42,620 PARTNER INVITED US TO THEIR 3304 01:54:42,620 --> 01:54:43,354 HOUSE BECAUSE WE HAVE THE 3305 01:54:43,354 --> 01:54:44,555 PAPER -- I'M NOT ON THE PAPER, 3306 01:54:44,555 --> 01:54:47,525 MY TEAM IS, BUT THE COMMUNITY 3307 01:54:47,525 --> 01:54:50,127 PARTNERS ARE CO -INVESTIGATORS ON 3308 01:54:50,127 --> 01:54:52,863 THE PAPER WITH OUR INVESTIGATORS 3309 01:54:52,863 --> 01:54:54,598 FROM OUR -- FROM LOMBARDI, AND 3310 01:54:54,598 --> 01:54:57,334 THE PAPER IS BEING PUBLISHED ON 3311 01:54:57,334 --> 01:54:58,502 GENETICS IN CANCER. 3312 01:54:58,502 --> 01:55:00,604 THEY HAD A HUGE PARTY, LIKE NINE 3313 01:55:00,604 --> 01:55:01,372 OF US THERE. 3314 01:55:01,372 --> 01:55:04,341 THE COMMUNITY WAS SO EXCITED. 3315 01:55:04,341 --> 01:55:05,743 THE COMMUNITY PARTNERS WERE SO 3316 01:55:05,743 --> 01:55:06,177 EXCITED. 3317 01:55:06,177 --> 01:55:09,246 THEY EVEN HAD THE ARTICLE BOUND. 3318 01:55:09,246 --> 01:55:10,681 SO WE TALK ABOUT DISSEMINATION, 3319 01:55:10,681 --> 01:55:12,183 JUST THINK, HAVING THEM AS 3320 01:55:12,183 --> 01:55:12,683 CO-AUTHORS. 3321 01:55:12,683 --> 01:55:13,918 I MEAN, ELATED. 3322 01:55:13,918 --> 01:55:15,953 THEY'RE ASKING US NOW, WHAT'S 3323 01:55:15,953 --> 01:55:16,153 NEXT? 3324 01:55:16,153 --> 01:55:19,824 SO I THINK, YOU KNOW, THAT HAS 3325 01:55:19,824 --> 01:55:21,158 BEEN A CULTIVATION OF TIME, BUT 3326 01:55:21,158 --> 01:55:22,760 IT WORKS, AND SEEING THEM ON 3327 01:55:22,760 --> 01:55:25,396 PAPERS IS GOING TO BE A VERY BIG 3328 01:55:25,396 --> 01:55:26,697 AND VERY POSITIVE STATEMENT. 3329 01:55:26,697 --> 01:55:27,565 AND WE'VE BEEN DOING THIS 3330 01:55:27,565 --> 01:55:28,532 BEFORE, BUT THIS WAS JUST 3331 01:55:28,532 --> 01:55:30,634 UNUSUAL, THAT THEY REALLY HAD 3332 01:55:30,634 --> 01:55:32,136 A -- THEY REALLY BELIEVED THAT 3333 01:55:32,136 --> 01:55:33,971 WE WERE TAKING THEM THE RIGHT 3334 01:55:33,971 --> 01:55:34,972 DIRECTION, AND WE TAUGHT THEM A 3335 01:55:34,972 --> 01:55:38,809 LOT. 3336 01:55:38,809 --> 01:55:39,543 >> THANK YOU. 3337 01:55:39,543 --> 01:55:40,978 MAY, I THINK YOU WANTED TO ADD 3338 01:55:40,978 --> 01:55:41,245 SOMETHING? 3339 01:55:41,245 --> 01:55:41,645 >> YES. 3340 01:55:41,645 --> 01:55:43,481 I THINK FOR IMMIGRANT 3341 01:55:43,481 --> 01:55:47,651 POPULATIONS IN PARTICULAR, WE 3342 01:55:47,651 --> 01:55:48,853 NEED TO ALSO CONSIDER THE 3343 01:55:48,853 --> 01:55:49,787 MISINFORMATION THAT OUR 3344 01:55:49,787 --> 01:55:51,455 POPULATIONS ARE RECEIVING, NOT 3345 01:55:51,455 --> 01:55:53,524 JUST LOW LITERACY OR LACK OF 3346 01:55:53,524 --> 01:55:55,493 KNOWLEDGE. 3347 01:55:55,493 --> 01:55:56,460 FOR IMMIGRANTS, THERE'S A 3348 01:55:56,460 --> 01:55:58,028 HISTORY OF LACK OF INFORMED 3349 01:55:58,028 --> 01:56:01,198 CONSENT RELATED TO REPRODUCTIVE 3350 01:56:01,198 --> 01:56:04,101 RIGHTS INJUSTICE, THERE'S BEEN 3351 01:56:04,101 --> 01:56:04,869 NON-CONSENTED STERILIZATION, IN 3352 01:56:04,869 --> 01:56:06,070 CALIFORNIA, THERE'S A LOT OF 3353 01:56:06,070 --> 01:56:06,504 MISTRUST. 3354 01:56:06,504 --> 01:56:08,939 EVEN MORE RECENTLY, PUBLIC 3355 01:56:08,939 --> 01:56:11,442 CHARGE AND LOTS OF 3356 01:56:11,442 --> 01:56:12,109 MISINFORMATION DURING THAT TIME 3357 01:56:12,109 --> 01:56:14,078 ON WHAT BENEFITS, YOU KNOW, 3358 01:56:14,078 --> 01:56:15,246 IMMIGRANTS COULD OR COULDN'T 3359 01:56:15,246 --> 01:56:15,479 ACCESS. 3360 01:56:15,479 --> 01:56:16,981 AND SO I THINK ONE THING FOR US 3361 01:56:16,981 --> 01:56:20,150 TO JUST BE CLEAR ABOUT IS 3362 01:56:20,150 --> 01:56:23,754 THINKING ABOUT OUR LANGUAGE, 3363 01:56:23,754 --> 01:56:24,588 MATERIALS, GIVING INFORMATION IN 3364 01:56:24,588 --> 01:56:28,659 A WAY THAT IS EASY TO 3365 01:56:28,659 --> 01:56:29,627 UNDERSTAND, WORKING WITH 3366 01:56:29,627 --> 01:56:30,961 COMMUNITY-BASED ORGANIZATIONS 3367 01:56:30,961 --> 01:56:33,797 AND TRUSTED PARTNERS TO PROVIDE 3368 01:56:33,797 --> 01:56:34,999 THAT INFORMATION AND TIMELY 3369 01:56:34,999 --> 01:56:38,269 INFORMATION WHEN THERE IS 3370 01:56:38,269 --> 01:56:40,471 MISINFORMATION OUT THERE IN THE 3371 01:56:40,471 --> 01:56:42,339 NEWS, COMMUNITY NAVIGATORS ARE 3372 01:56:42,339 --> 01:56:43,007 CRITICALLY IMPORTANT. 3373 01:56:43,007 --> 01:56:44,074 AND THEN THE LAST THING I JUST 3374 01:56:44,074 --> 01:56:45,142 WANTED TO NOTE IS JUST THE IDEA 3375 01:56:45,142 --> 01:56:49,079 OF INFORMED CONSENT AS WELL, AND 3376 01:56:49,079 --> 01:56:50,814 JUST ENSURING THAT DEFINITIONS 3377 01:56:50,814 --> 01:56:52,716 OF INFORMED CONSENT IS THE SAME 3378 01:56:52,716 --> 01:56:55,286 FOR PATIENTS AS IT IS FOR 3379 01:56:55,286 --> 01:56:57,488 RESEARCHERS OR PROVIDERS, AND 3380 01:56:57,488 --> 01:56:58,455 SPECIFICALLY TRAINING 3381 01:56:58,455 --> 01:57:01,225 RESEARCHERS AND ALSO PROVIDERS 3382 01:57:01,225 --> 01:57:02,660 TO UNDERSTAND WHAT INFORMED 3383 01:57:02,660 --> 01:57:03,594 CONSENT ACTUALLY MEANS 3384 01:57:03,594 --> 01:57:07,765 THROUGHOUT THE ENTIRE CLINICAL 3385 01:57:07,765 --> 01:57:10,200 PROCEDURE AND PROCESSES. 3386 01:57:10,200 --> 01:57:17,141 >> I ALSO WANTED TO KIND OF 3387 01:57:17,141 --> 01:57:18,142 OFFER A COUPLE OF COMMENTS. 3388 01:57:18,142 --> 01:57:19,209 I THINK THAT SOME OF THE 3389 01:57:19,209 --> 01:57:21,645 LANGUAGE THAT WE SOMETIMES USE 3390 01:57:21,645 --> 01:57:28,285 CAN BE VERY OFF-PUTTING TO 3391 01:57:28,285 --> 01:57:30,120 PARTICIPANTS, AND WHEN WE 3392 01:57:30,120 --> 01:57:31,121 DESCRIBE COMMUNITY, SO I 3393 01:57:31,121 --> 01:57:32,289 PERSONALLY DON'T LIKE THE 3394 01:57:32,289 --> 01:57:33,958 TERMINOLOGY OF LOW LITERACY. 3395 01:57:33,958 --> 01:57:35,693 I THINK, YOU KNOW, MANY 3396 01:57:35,693 --> 01:57:36,994 RESEARCHERS HAVE LOW LITERACY ON 3397 01:57:36,994 --> 01:57:39,830 HOW TO COMMUNICATE, LIKE, WITH 3398 01:57:39,830 --> 01:57:41,031 OTHER PEOPLE WHO ARE NOT 3399 01:57:41,031 --> 01:57:45,302 TECHNICAL EXPERTS. 3400 01:57:45,302 --> 01:57:47,171 BECAUSE WE KNOW THAT EDUCATIONAL 3401 01:57:47,171 --> 01:57:49,807 OPPORTUNITIES ARE NOT EQUALLY 3402 01:57:49,807 --> 01:57:52,843 AFFORDED TO ALL COMMUNITIES, AND 3403 01:57:52,843 --> 01:57:54,378 THEN WITH INDIGENOUS 3404 01:57:54,378 --> 01:57:56,547 POPULATIONS, YOU KNOW, THE 3405 01:57:56,547 --> 01:57:59,383 RELATIONSHIP WITH EDUCATION, 3406 01:57:59,383 --> 01:58:01,151 IT'S NOT A GOOD HISTORY. 3407 01:58:01,151 --> 01:58:02,553 IT'S ALSO NOT A GOOD HISTORY 3408 01:58:02,553 --> 01:58:04,722 WHEN YOU LOOK AT RELATIONSHIPS 3409 01:58:04,722 --> 01:58:10,294 WITH PROVIDERS WHO, YOU KNOW, 3410 01:58:10,294 --> 01:58:13,330 MAY HAVE, YOU KNOW, HAD VERY 3411 01:58:13,330 --> 01:58:15,733 STEREOTYPICAL VIEWS OR, YOU 3412 01:58:15,733 --> 01:58:17,434 KNOW, FORCED STERILIZATION, 3413 01:58:17,434 --> 01:58:18,569 THOSE TYPES OF THINGS HAPPENED 3414 01:58:18,569 --> 01:58:22,706 IN AMERICAN INDIAN, AND WITH 3415 01:58:22,706 --> 01:58:25,542 ALASKA NATIVE PEOPLE, AND PART 3416 01:58:25,542 --> 01:58:27,544 OF WHAT I THINK IS REALLY 3417 01:58:27,544 --> 01:58:30,914 CRITICAL IN THIS WORK IS HAVING 3418 01:58:30,914 --> 01:58:34,618 AN ATTITUDE OF HUMILITY AND THAT 3419 01:58:34,618 --> 01:58:35,285 EVERYBODY BRINGS KNOWLEDGE TO 3420 01:58:35,285 --> 01:58:37,921 THE TABLE AND I HAVE LEARNED SO 3421 01:58:37,921 --> 01:58:39,990 MUCH FROM COMMUNITY MEMBERS. 3422 01:58:39,990 --> 01:58:42,526 YOU KNOW, SO I VIEW LEARNING 3423 01:58:42,526 --> 01:58:46,230 VERY MUCH AS BIDIRECTIONAL, BUT 3424 01:58:46,230 --> 01:58:47,097 RESEARCHERS AND PROVIDERS NEED 3425 01:58:47,097 --> 01:58:51,335 TO BE OPEN AND YOU NEED TO 3426 01:58:51,335 --> 01:58:53,537 REALLY LISTEN TO KIND OF 3427 01:58:53,537 --> 01:58:57,007 APPROACH THE RELATIONSHIP KIND 3428 01:58:57,007 --> 01:58:59,309 OF WITH RESPECT AND WITH KIND OF 3429 01:58:59,309 --> 01:59:02,279 THIS SPIRIT OF KIND OF 3430 01:59:02,279 --> 01:59:07,651 COLLABORATION AND PARTNERSHIP. 3431 01:59:07,651 --> 01:59:08,318 >> THANK YOU. 3432 01:59:08,318 --> 01:59:09,186 JENNIFER, I THINK WE HAVE TIME 3433 01:59:09,186 --> 01:59:09,787 FOR ONE MORE QUESTION. 3434 01:59:09,787 --> 01:59:10,621 >> OKAY. 3435 01:59:10,621 --> 01:59:14,658 AND I WILL NOTE THERE ARE MOSTLY 3436 01:59:14,658 --> 01:59:15,726 AFFIRMATIONINGS IN THE CHAT OF 3437 01:59:15,726 --> 01:59:16,927 WHAT EVERYONE IS SAYING MORE 3438 01:59:16,927 --> 01:59:18,228 THAN QUESTIONS. 3439 01:59:18,228 --> 01:59:19,930 THERE ARE A COUPLE QUESTIONS, 3440 01:59:19,930 --> 01:59:21,965 AND LUCILE, YOU TOUCHED ON THIS 3441 01:59:21,965 --> 01:59:24,635 A LITTLE REGARDING THE BUDGET, 3442 01:59:24,635 --> 01:59:25,536 BUT THERE ARE QUESTIONS ABOUT 3443 01:59:25,536 --> 01:59:26,403 BUDGET. 3444 01:59:26,403 --> 01:59:30,007 HOW DO YOU THINK ABOUT THE 3445 01:59:30,007 --> 01:59:33,377 BUDGET AND ENGAGING COMMUNITY 3446 01:59:33,377 --> 01:59:35,245 PARTNERS, EITHER STAFFING OR 3447 01:59:35,245 --> 01:59:36,580 ADDRESSING BARRIERS TO 3448 01:59:36,580 --> 01:59:37,247 RECRUITMENT? 3449 01:59:37,247 --> 01:59:38,115 DOES ANYONE WANT TO SPEAK TO 3450 01:59:38,115 --> 01:59:39,316 THAT? 3451 01:59:39,316 --> 01:59:40,984 >> WELL, I'M A FIRM BELIEVER 3452 01:59:40,984 --> 01:59:42,619 THAT YOU SHOULD BUDGET FOR WHAT 3453 01:59:42,619 --> 01:59:46,690 YOU REALLY NEED. 3454 01:59:46,690 --> 01:59:48,192 WE CAN'T DO STUDIES IN THE 3455 01:59:48,192 --> 01:59:49,059 COMMUNITY WITHOUT THE COMMUNITY. 3456 01:59:49,059 --> 01:59:51,462 SO WE ACTUALLY ADEQUATELY BUDGET 3457 01:59:51,462 --> 01:59:54,398 FOR OUR PARTNERSHIPS. 3458 01:59:54,398 --> 01:59:58,769 TIME, EFFORT, AND THE 3459 01:59:58,769 --> 02:00:00,104 RECRUITMENT -- WE CAN'T GO FROM 3460 02:00:00,104 --> 02:00:01,271 GEORGETOWN AND WALK INTO 3461 02:00:01,271 --> 02:00:02,072 COMMUNITIES AND SAY LET ME 3462 02:00:02,072 --> 02:00:02,506 RECRUIT. 3463 02:00:02,506 --> 02:00:03,507 I HAVE HIRED PEOPLE FROM THE 3464 02:00:03,507 --> 02:00:04,775 COMMUNITY TO BE PART OF THE 3465 02:00:04,775 --> 02:00:06,176 STUDY, PART OF THE SOLUTION, NOT 3466 02:00:06,176 --> 02:00:08,579 PART OF THE PROBLEM, PART OF THE 3467 02:00:08,579 --> 02:00:10,347 SOLUTION, AND PUT THE MONEY IN. 3468 02:00:10,347 --> 02:00:14,151 AND A CLASSIC EXAMPLE IS THE 3469 02:00:14,151 --> 02:00:15,152 WOMEN'S SELF INITIATIVE. 3470 02:00:15,152 --> 02:00:17,988 I GO BACK THAT FAR BECAUSE WE 3471 02:00:17,988 --> 02:00:18,956 HAVE ONE OF THE UNIQUE 3472 02:00:18,956 --> 02:00:20,157 RECRUITMENT ASPECTS, IT WAS A 3473 02:00:20,157 --> 02:00:23,494 MINORITY SITE, KIND OF -- 40 3474 02:00:23,494 --> 02:00:24,528 WOMEN INITIATIVE SITES WERE 3475 02:00:24,528 --> 02:00:24,828 MINORITY. 3476 02:00:24,828 --> 02:00:26,396 WE HAD A MINORITY SITE, AND I 3477 02:00:26,396 --> 02:00:27,931 KNEW THE LABOR INTENSITY THAT 3478 02:00:27,931 --> 02:00:30,100 WAS NEEDED, SO WE ASKED FOR LIKE 3479 02:00:30,100 --> 02:00:32,369 FIVE RECRUITERS, AND WHEN WE 3480 02:00:32,369 --> 02:00:34,872 WERE SITE VISITED, THEY SAID WHY 3481 02:00:34,872 --> 02:00:35,639 WOULD YOU WANT THAT? 3482 02:00:35,639 --> 02:00:37,508 I SAID BECAUSE WE'D NOT BE 3483 02:00:37,508 --> 02:00:39,376 PUTTING THE TYPICAL WHITE WOMAN 3484 02:00:39,376 --> 02:00:41,678 IN A STUDY -- ANY STUDY THAT 3485 02:00:41,678 --> 02:00:42,880 GOES ALONG OR READ ABOUT. 3486 02:00:42,880 --> 02:00:44,381 WE HAVE TO GO OUT AND EDUCATE 3487 02:00:44,381 --> 02:00:44,848 PEOPLE. 3488 02:00:44,848 --> 02:00:46,016 SO IT'S VERY IMPORTANT, AND I 3489 02:00:46,016 --> 02:00:47,417 ALWAYS HAVE MY KREE KREUTERS -- 3490 02:00:47,417 --> 02:00:48,986 I HAVE AT LEAST ONE RECRUITER IN 3491 02:00:48,986 --> 02:00:51,021 EVERY GRANT, BUT BY HAVING THE 3492 02:00:51,021 --> 02:00:53,357 COMMUNITY ADVISORY COUNCIL, AND 3493 02:00:53,357 --> 02:00:54,858 HAVING A WIDER SPREAD AND WE 3494 02:00:54,858 --> 02:00:57,094 HAVE NAVIGATORS AND COMMUNITY -- 3495 02:00:57,094 --> 02:00:58,896 I HAVE A LARGE STAFFING THAT 3496 02:00:58,896 --> 02:01:00,230 ADDRESSES THE COMMUNITY AND 3497 02:01:00,230 --> 02:01:01,665 THEY'RE OUT IN THE COMMUNITY 3498 02:01:01,665 --> 02:01:03,167 EVERY DAY OF THE WEEK. 3499 02:01:03,167 --> 02:01:06,370 SO WE HAVE A BIG GRASP BUT 3500 02:01:06,370 --> 02:01:07,771 STILL, WE WANT TO PAY HOMAGE TO 3501 02:01:07,771 --> 02:01:08,772 THE COMMUNITY WE'RE WORKING WITH 3502 02:01:08,772 --> 02:01:10,073 AND MAKE CERTAIN THAT WE PROVIDE 3503 02:01:10,073 --> 02:01:14,545 SUPPORT AND FUNDING FOR THEM AS 3504 02:01:14,545 --> 02:01:16,847 WELL. 3505 02:01:16,847 --> 02:01:19,783 >> IN MY MODEL OF WORKING WITH 3506 02:01:19,783 --> 02:01:21,752 THE COMMUNITY HEALTH CENTER, WE 3507 02:01:21,752 --> 02:01:22,853 ALWAYS CUT A SUBCONTRACT TO 3508 02:01:22,853 --> 02:01:24,488 THEM, AND IT GOES -- THAT COMES 3509 02:01:24,488 --> 02:01:28,525 WITH A P.I., SOMEONE IN THE 3510 02:01:28,525 --> 02:01:29,626 RESEARCH DEPARTMENT, A PROGRAM 3511 02:01:29,626 --> 02:01:32,896 MANAGER, A RECRUITER, AND 3512 02:01:32,896 --> 02:01:33,764 INTERVENTION SPECIALIST. 3513 02:01:33,764 --> 02:01:36,266 BECAUSE NOT ONLY DOES THAT BIAS 3514 02:01:36,266 --> 02:01:39,536 TRUST AND MUTUAL RELATION -- BUY 3515 02:01:39,536 --> 02:01:40,938 US TRUSS AND MUTUAL 3516 02:01:40,938 --> 02:01:42,039 RELATIONSHIP, BUT IF THE 3517 02:01:42,039 --> 02:01:43,473 INTERVENTION IS SUCCESSFUL, THE 3518 02:01:43,473 --> 02:01:44,875 CURRICULUM, THE METHODOLOGIES 3519 02:01:44,875 --> 02:01:46,643 RESIDE WITH THE ORGANIZATION FOR 3520 02:01:46,643 --> 02:01:47,845 FUTURE INCORPORATE INTO THEIR 3521 02:01:47,845 --> 02:01:49,379 HEALTH EDUCATION PROGRAMS AND 3522 02:01:49,379 --> 02:01:53,183 DEPARTMENT. 3523 02:01:53,183 --> 02:01:54,651 SO THAT'S ANOTHER STRATEGY TO 3524 02:01:54,651 --> 02:01:54,985 THINK ABOUT. 3525 02:01:54,985 --> 02:01:57,321 >> MAY? 3526 02:01:57,321 --> 02:01:58,622 WOULD YOU LIKE TO ADD SOMETHING? 3527 02:01:58,622 --> 02:02:00,190 >> YES. 3528 02:02:00,190 --> 02:02:01,491 I THINK THERE'S A LOT AROUND 3529 02:02:01,491 --> 02:02:02,359 THIS, RIGHT? 3530 02:02:02,359 --> 02:02:05,629 SO I THINK THE FIRST THING IS 3531 02:02:05,629 --> 02:02:06,930 THAT IT'S REALLY IMPORTANT TO 3532 02:02:06,930 --> 02:02:11,969 TALK TO COMMUNITY MEMBERS WAY 3533 02:02:11,969 --> 02:02:13,837 BEFORE YOU'RE DOING THE WORK, 3534 02:02:13,837 --> 02:02:14,037 RIGHT? 3535 02:02:14,037 --> 02:02:16,473 SO AT THE PLANNING PHASE, 3536 02:02:16,473 --> 02:02:19,142 CONSULT WITH THEM. 3537 02:02:19,142 --> 02:02:21,545 UNDERSTAND HOW THEY WILL BE 3538 02:02:21,545 --> 02:02:22,512 INVOLVED IN THE PROJECT AND THEN 3539 02:02:22,512 --> 02:02:24,615 PAY THEM ACCORDINGLY. 3540 02:02:24,615 --> 02:02:35,292 I THINK, LI SOME COINVESTIGATOR 3541 02:02:36,927 --> 02:02:37,594 COMMUNITY ORGANIZATIONS ARE ABLE 3542 02:02:37,594 --> 02:02:39,463 TO DO A SUBCONTRACT, SMALLER 3543 02:02:39,463 --> 02:02:40,664 ORGANIZATIONS MIGHT FIND THAT 3544 02:02:40,664 --> 02:02:45,903 VERY CUMBERSOME AND SO BEING A 3545 02:02:45,903 --> 02:02:47,337 VENDOR MIGHT ACTUALLY BE MORE 3546 02:02:47,337 --> 02:02:48,505 FEASIBLE, SO UNDERSTANDING THAT 3547 02:02:48,505 --> 02:02:52,376 BEFORE YOU ACTUALLY EVEN 3548 02:02:52,376 --> 02:02:53,677 IMPLEMENT THE STUDY, I THINK IS 3549 02:02:53,677 --> 02:02:54,678 REALLY IMPORTANT BECAUSE AS WE 3550 02:02:54,678 --> 02:02:56,413 ALL KNOW, SUBCONTRACTS CAN TAKE 3551 02:02:56,413 --> 02:03:00,350 WEEKS TO MONTHS TO IMPLEMENT. 3552 02:03:00,350 --> 02:03:03,420 I WOULD ALSO SAY, TO ME, IT'S 3553 02:03:03,420 --> 02:03:05,289 REALLY IMPORTANT TO THINK ABOUT 3554 02:03:05,289 --> 02:03:08,558 BUDGET IN TERMS OF HOW CAN WE 3555 02:03:08,558 --> 02:03:11,461 FUND AND SUPPORT OUR COMMUNITIES 3556 02:03:11,461 --> 02:03:13,797 AND ORGANIZATIONS SO THAT IT 3557 02:03:13,797 --> 02:03:14,898 DOESN'T DISRUPT THE FLOW OF 3558 02:03:14,898 --> 02:03:17,301 THEIR ACTIVITIES AND WORK, AND 3559 02:03:17,301 --> 02:03:19,703 THAT MIGHT MEAN, YOU KNOW, 3560 02:03:19,703 --> 02:03:21,672 HIRING A RESEARCH MANAGER, OR 3561 02:03:21,672 --> 02:03:23,941 FUNDING A PART-TIME OF A 3562 02:03:23,941 --> 02:03:25,042 RESEARCH MANAGER WITHIN THE 3563 02:03:25,042 --> 02:03:27,210 ORGANIZATION. 3564 02:03:27,210 --> 02:03:29,313 ABSOLUTELY BUDGETING FOR 3565 02:03:29,313 --> 02:03:30,714 TRANSPORTATION, BUDGETING FOR 3566 02:03:30,714 --> 02:03:31,715 SLOW RECRUITMENT, RIGHT? 3567 02:03:31,715 --> 02:03:32,549 LIKE THAT'S SOMETHING THAT WE 3568 02:03:32,549 --> 02:03:34,985 MIGHT BUFFER WITHIN OUR BUDGETS. 3569 02:03:34,985 --> 02:03:38,355 WE NEED TO ALSO BUDGET THAT WITH 3570 02:03:38,355 --> 02:03:40,123 COMMUNITY ORGANIZATIONS, OTHER 3571 02:03:40,123 --> 02:03:42,426 PERSONNEL TIMES. 3572 02:03:42,426 --> 02:03:43,961 THE OTHER THING I JUST WANTED TO 3573 02:03:43,961 --> 02:03:47,431 NOTE IS THAT WITH NIH BUDGET 3574 02:03:47,431 --> 02:03:49,199 CUTS, WHICH I THINK IS PRETTY 3575 02:03:49,199 --> 02:03:52,569 STANDARD ACROSS THE BOARD, 3576 02:03:52,569 --> 02:03:55,205 UNIVERSITIES MIGHT BE ABLE TO 3577 02:03:55,205 --> 02:03:56,940 TAKE THAT HIT, BUT OUR 3578 02:03:56,940 --> 02:03:57,975 COMMUNITY-BASED ORGANIZATIONS 3579 02:03:57,975 --> 02:04:00,610 AREN'T, AND SO BUFFERING FOR 3580 02:04:00,610 --> 02:04:01,745 THAT, I THINK IS ALSO REALLY 3581 02:04:01,745 --> 02:04:02,012 IMPORTANT. 3582 02:04:02,012 --> 02:04:02,946 >> THANK YOU FOR THAT. 3583 02:04:02,946 --> 02:04:04,815 WE'VE GOT ONE MORE MINUTE LEFT. 3584 02:04:04,815 --> 02:04:09,086 I WANTED TO GIVE DENISE OR VA'A 3585 02:04:09,086 --> 02:04:10,053 AN OPPORTUNITY TO ADD ANY 3586 02:04:10,053 --> 02:04:11,722 COMMENTS THEY MIGHT HAVE. 3587 02:04:11,722 --> 02:04:13,590 >> I DON'T HAVE A LOT TO ADD IN 3588 02:04:13,590 --> 02:04:17,194 TERMS OF BUDGET, BUT YOU KNOW, I 3589 02:04:17,194 --> 02:04:18,729 AGREE, SUBCONTRACTS, LIKE HAVING 3590 02:04:18,729 --> 02:04:22,099 THE INFRASTRUCTURE TO DO 3591 02:04:22,099 --> 02:04:22,833 SUBCONTRACTS, SOMETIMES THAT'S 3592 02:04:22,833 --> 02:04:26,136 JUST REALLY NOT PRESENT, YOU 3593 02:04:26,136 --> 02:04:26,803 KNOW, WITHIN SOME ORGANIZATIONS 3594 02:04:26,803 --> 02:04:29,006 THAT YOU MAY WORK WITH, AND SO I 3595 02:04:29,006 --> 02:04:32,809 THINK WORKING WITH NIH AS WELL 3596 02:04:32,809 --> 02:04:36,113 AS WITHIN UNIVERSITIES -- HOW 3597 02:04:36,113 --> 02:04:38,181 CAN WE STILL HAVE SOUND FISCAL 3598 02:04:38,181 --> 02:04:40,884 APPROACHES, BUT ALSO TO BE AS 3599 02:04:40,884 --> 02:04:43,854 FLEXIBLE AS POSSIBLE, BECAUSE 3600 02:04:43,854 --> 02:04:45,522 SOMETIMES THERE'S A LOT OF 3601 02:04:45,522 --> 02:04:47,924 BARRIERS PUT UP LIKE WAYS TO 3602 02:04:47,924 --> 02:04:50,127 FUND LIKE OFFERING A SMALL GIFT, 3603 02:04:50,127 --> 02:04:52,529 YOU KNOW, TO A COMMUNITY MEMBER 3604 02:04:52,529 --> 02:04:56,333 WHO MAYBE HAS VOLUNTEERED THEIR 3605 02:04:56,333 --> 02:05:00,270 TIME, AND THAT'S AN IMPORTANT 3606 02:05:00,270 --> 02:05:01,338 ACKNOWLEDGMENT BUT CULTURALLY, 3607 02:05:01,338 --> 02:05:04,775 SO HOW DO YOU PAY FOR THAT, AND 3608 02:05:04,775 --> 02:05:05,976 SO ALL OF THOSE TYPES OF THINGS 3609 02:05:05,976 --> 02:05:07,944 ARE REALLY -- ARE REALLY 3610 02:05:07,944 --> 02:05:10,147 CRITICAL. 3611 02:05:10,147 --> 02:05:13,283 >> I JUST WANTED TO ADD, I AGREE 3612 02:05:13,283 --> 02:05:14,818 WITH WHAT EVERYONE IS SAYING. 3613 02:05:14,818 --> 02:05:16,787 ON THE FEDERAL SIDE, BECAUSE WE 3614 02:05:16,787 --> 02:05:20,057 ARE A COMMUNITY-BASED 3615 02:05:20,057 --> 02:05:23,226 ORGANIZATION. 3616 02:05:23,226 --> 02:05:25,762 AND I THINK NIH NEEDS TO SUPPORT 3617 02:05:25,762 --> 02:05:28,065 MORE FUNDING FOR COMMUNITY-BASED 3618 02:05:28,065 --> 02:05:29,299 ORGANIZATIONS AND WHAT WE SERVE. 3619 02:05:29,299 --> 02:05:30,600 I'M PUTTING A PLUG FOR JENNIFER 3620 02:05:30,600 --> 02:05:31,701 BECAUSE SHE WAS MY PROGRAM 3621 02:05:31,701 --> 02:05:34,337 OFFICER FOR OUR U24 GRANT. 3622 02:05:34,337 --> 02:05:35,472 BUT THAT BUILT OUR FOUNDATION 3623 02:05:35,472 --> 02:05:38,141 BECAUSE IT ALLOWED -- IT WAS 3624 02:05:38,141 --> 02:05:39,242 BUILDING RESEARCH CAPACITY 3625 02:05:39,242 --> 02:05:42,746 SPECIFICALLY IN PACIFIC ISLANDS, 3626 02:05:42,746 --> 02:05:44,114 AND THE ORGANIZATION HAD TO BE 3627 02:05:44,114 --> 02:05:46,349 IN THE ISLANDS AND COULD NOT -- 3628 02:05:46,349 --> 02:05:48,218 IT COULDN'T BE ANOTHER 3629 02:05:48,218 --> 02:05:49,519 INSTITUTION FROM OFF ISLAND, 3630 02:05:49,519 --> 02:05:52,022 LIKE WAS MENTIONED BEFORE, LIKE 3631 02:05:52,022 --> 02:05:53,790 THAT MOSQUITO APPROACH. 3632 02:05:53,790 --> 02:05:55,659 SO IT REALLY ALLOWED US TO DO 3633 02:05:55,659 --> 02:05:56,560 THAT, BUILD OUR INFRASTRUCTURE, 3634 02:05:56,560 --> 02:05:57,727 BUILD WITHIN THE COMMUNITY, AND 3635 02:05:57,727 --> 02:05:59,262 THEN DO THE RESEARCH -- THE 3636 02:05:59,262 --> 02:06:00,564 STUDY AS WE NEEDED. 3637 02:06:00,564 --> 02:06:03,867 AND LIKE I MENTIONED, THAT 3638 02:06:03,867 --> 02:06:06,837 ALLOWED US TO GET OUR DEMENTIA 3639 02:06:06,837 --> 02:06:09,439 GRANT, WHICH THIS IS THE FIRST 3640 02:06:09,439 --> 02:06:10,874 R01 THAT'S HAPPENING IN OUR 3641 02:06:10,874 --> 02:06:11,308 COMMUNITY. 3642 02:06:11,308 --> 02:06:13,944 WE HAVE OTHER INSTITUTIONS DOING 3643 02:06:13,944 --> 02:06:15,912 R01s COMING IN, GRABBING 3644 02:06:15,912 --> 02:06:17,314 SAMPLES AND THEY'RE LEAVING, BUT 3645 02:06:17,314 --> 02:06:19,082 THIS ALLOWS US THE OPPORTUNITY 3646 02:06:19,082 --> 02:06:21,051 TO CONTROL THE STUDIES AND 3647 02:06:21,051 --> 02:06:23,887 WHAT'S HAPPENING WITH THE DATA. 3648 02:06:23,887 --> 02:06:25,789 THANK YOU. 3649 02:06:25,789 --> 02:06:26,623 >> THANK YOU SO MUCH. 3650 02:06:26,623 --> 02:06:29,659 THAT BRINGS US TO THE END OF OUR 3651 02:06:29,659 --> 02:06:30,460 FIRST PANEL DISCUSSION FOR 3652 02:06:30,460 --> 02:06:30,794 SESSION 4. 3653 02:06:30,794 --> 02:06:32,896 I WANT TO THANK OUR PANELISTS 3654 02:06:32,896 --> 02:06:34,531 FOR SHARING THEIR WORDS OF 3655 02:06:34,531 --> 02:06:36,433 WISDOM AND THEIR BEST PRACTICES 3656 02:06:36,433 --> 02:06:38,468 AS FAR AS PERFORMING INCLUSIVE 3657 02:06:38,468 --> 02:06:40,203 RESEARCH ON UNDERREPRESENTED 3658 02:06:40,203 --> 02:06:40,737 POPULATIONS. 3659 02:06:40,737 --> 02:06:41,538 THANK YOU SO MUCH FOR THE WORK 3660 02:06:41,538 --> 02:06:42,305 THAT YOU'RE DOING. 3661 02:06:42,305 --> 02:06:44,374 IT'S TRULY INSPIRING. 3662 02:06:44,374 --> 02:06:46,910 AND THANK YOU TO THE AUDIENCE 3663 02:06:46,910 --> 02:06:48,545 FOR TUNING IN AND SENDING IN 3664 02:06:48,545 --> 02:06:49,079 QUESTIONS. 3665 02:06:49,079 --> 02:06:50,180 PLEASE STAY AROUND FOR OUR NEXT 3666 02:06:50,180 --> 02:06:54,117 PANEL DISCUSSION. 3667 02:06:54,117 --> 02:06:56,853 WE'LL NOW HAVE A 5-MINUTE 3668 02:06:56,853 --> 02:06:57,893 BREAK. 3669 02:06:57,893 --> 02:06:59,228 GOOD AFTERNOON. 3670 02:06:59,228 --> 02:07:00,762 WE JUST HAD A GREAT SESSION ON 3671 02:07:00,762 --> 02:07:02,497 BEST PRACTICES FOR CONDUCTING 3672 02:07:02,497 --> 02:07:04,266 CLINICAL RESEARCH WITH SPECIAL 3673 02:07:04,266 --> 02:07:06,001 POPULATIONS, AND NOW I WELCOME 3674 02:07:06,001 --> 02:07:13,775 YOU TO SESSION 4, SPECIAL 3675 02:07:13,775 --> 02:07:14,276 CONSENT CONSIDERATIONS. 3676 02:07:14,276 --> 02:07:15,444 WE WILL HAVE 30 MINUTES ON THIS 3677 02:07:15,444 --> 02:07:15,878 TOPIC. 3678 02:07:15,878 --> 02:07:21,016 MY NAME IS SONIA ARTEAGA, 3679 02:07:21,016 --> 02:07:23,218 PROGRAM OFFICER FOR THE ECHO 3680 02:07:23,218 --> 02:07:23,986 PROGRAM IN THE OFFICE OF THE 3681 02:07:23,986 --> 02:07:25,587 DIRECTOR AT NIH. 3682 02:07:25,587 --> 02:07:28,257 MY CO-MODERATOR IS DR. KATRINA 3683 02:07:28,257 --> 02:07:30,525 SERRANO, PROGRAM DIRECTOR AT THE 3684 02:07:30,525 --> 02:07:31,293 NATIONAL INSTITUTE OF DIABETES 3685 02:07:31,293 --> 02:07:34,263 AND DIGESTIVE AND KIDNEY 3686 02:07:34,263 --> 02:07:34,963 DISEASES. 3687 02:07:34,963 --> 02:07:35,931 EACH PANELIST WILL HAVE A MINUTE 3688 02:07:35,931 --> 02:07:38,433 OR SO TO GIVE A BRIEF 3689 02:07:38,433 --> 02:07:39,167 INTRODUCTORY REMARK REGARDING 3690 02:07:39,167 --> 02:07:39,868 THEIR TOPIC. 3691 02:07:39,868 --> 02:07:42,170 AFTER EACH PANELIST SPEAKS, I 3692 02:07:42,170 --> 02:07:43,505 WILL BEGIN WITH QUESTIONS AND 3693 02:07:43,505 --> 02:07:45,340 THEN ASK THE ATTENDEES TO ALSO 3694 02:07:45,340 --> 02:07:48,410 SUBMIT THEIR QUESTIONS. 3695 02:07:48,410 --> 02:07:49,745 OUR PANELISTS TODAY INCLUDE, AND 3696 02:07:49,745 --> 02:07:53,582 I WILL BEGIN WITH DR. HENGAMEH 3697 02:07:53,582 --> 02:07:53,815 RAISSY. 3698 02:07:53,815 --> 02:07:54,883 SHE IS THE INTERIM VICE 3699 02:07:54,883 --> 02:07:56,151 PRESIDENT FOR RESEARCH AT THE 3700 02:07:56,151 --> 02:07:59,888 UNIVERSITY OF NEW MEXICO, HEALTH 3701 02:07:59,888 --> 02:08:00,689 SCIENCES CENTER. 3702 02:08:00,689 --> 02:08:01,290 RESEARCH PROFESSOR IN THE 3703 02:08:01,290 --> 02:08:02,557 DEPARTMENT OF PEDIATRIC IN THE 3704 02:08:02,557 --> 02:08:04,393 SCHOOL OF MEDICINE. 3705 02:08:04,393 --> 02:08:08,964 DR. RAISSY. 3706 02:08:08,964 --> 02:08:10,465 >> HELLO. 3707 02:08:10,465 --> 02:08:11,800 IT'S GREAT TO BE HERE, AND THANK 3708 02:08:11,800 --> 02:08:15,370 YOU FOR THE INVITE. 3709 02:08:15,370 --> 02:08:21,510 SO TODAY I AM GOING TO SHARE MY 3710 02:08:21,510 --> 02:08:22,844 EXPERIENCE AND THOUGHTS ABOUT 3711 02:08:22,844 --> 02:08:26,515 CONSENTING ADOLESCENT AND 3712 02:08:26,515 --> 02:08:27,316 PEDIATRIC PATIENTS. 3713 02:08:27,316 --> 02:08:29,918 WE WOULD ALSO LIKE TO TALK TO 3714 02:08:29,918 --> 02:08:31,687 YOU ABOUT A SPECIAL POPULATION, 3715 02:08:31,687 --> 02:08:35,390 SPECIFICALLY WE CAN TALK ABOUT 3716 02:08:35,390 --> 02:08:38,794 PATIENTS THAT DO NOT SPEAK 3717 02:08:38,794 --> 02:08:39,995 ENGLISH, WHAT WOULD BE AN 3718 02:08:39,995 --> 02:08:41,964 APPROPRIATE WAY TO CONSENT THEM 3719 02:08:41,964 --> 02:08:43,065 OR MAYBE -- WELL, APPROPRIATE 3720 02:08:43,065 --> 02:08:46,001 WAYS TO HAVE THE CONSENT -- 3721 02:08:46,001 --> 02:08:47,869 LANGUAGE BUT WHO SHOULD BE THE 3722 02:08:47,869 --> 02:08:49,271 SUPPORT SYSTEM, IS THIS ENOUGH 3723 02:08:49,271 --> 02:08:51,273 TO HAVE JUST A COORDINATOR THAT 3724 02:08:51,273 --> 02:08:52,908 SPEAKS THE LANGUAGE OR SHOULD WE 3725 02:08:52,908 --> 02:08:57,079 HAVE INVESTIGATORS THAT HAVE -- 3726 02:08:57,079 --> 02:08:58,814 THAT THEY ALSO SPEAK THE 3727 02:08:58,814 --> 02:09:01,650 LANGUAGE IN ORDER TO BUILD TRUST 3728 02:09:01,650 --> 02:09:03,852 AND COMFORT WITH THE PATIENTS. 3729 02:09:03,852 --> 02:09:05,721 IN ADDITION, WE ARE GOING TO 3730 02:09:05,721 --> 02:09:10,792 TALK ABOUT DIFFERENT METHODS OF 3731 02:09:10,792 --> 02:09:12,227 PATIENT RECRUITMENT AND HOW 3732 02:09:12,227 --> 02:09:15,197 THERE ISN'T ONE MODEL THAT WOULD 3733 02:09:15,197 --> 02:09:19,134 WORK FOR ONE PLACE, ONE STATE 3734 02:09:19,134 --> 02:09:19,735 VERSUS ANOTHER. 3735 02:09:19,735 --> 02:09:20,202 >> GREAT. 3736 02:09:20,202 --> 02:09:21,870 THANK YOU SO MUCH. 3737 02:09:21,870 --> 02:09:25,374 SO NEXT WE HAVE DR. CAREY 3738 02:09:25,374 --> 02:09:27,009 NIEMAN, ASSOCIATE PROFESSOR IN 3739 02:09:27,009 --> 02:09:29,344 THE DEPARTMENT OF OTOLARYNGOLOGY 3740 02:09:29,344 --> 02:09:31,513 HEAD AND NECK SURGERY AT JOHNS 3741 02:09:31,513 --> 02:09:34,449 HOPKINS AND IS CORE FACULTY AT 3742 02:09:34,449 --> 02:09:35,484 THE JOHNS HOPKINS COCHLEAR 3743 02:09:35,484 --> 02:09:37,119 CENTER FOR HEARING IN PUBLIC 3744 02:09:37,119 --> 02:09:39,654 HEALTH. 3745 02:09:39,654 --> 02:09:40,322 DR. NIEMAN. 3746 02:09:40,322 --> 02:09:41,156 >> WONDERFUL. 3747 02:09:41,156 --> 02:09:41,923 THANK YOU VERY MUCH. 3748 02:09:41,923 --> 02:09:44,893 I'M EXCITED TO BE HERE TO SHARE 3749 02:09:44,893 --> 02:09:46,762 THE PERSPECTIVE OF WORKING WITH 3750 02:09:46,762 --> 02:09:47,329 OLDER ADULTS. 3751 02:09:47,329 --> 02:09:52,934 SO AS I REFLECTED ON, WAY LOT OF 3752 02:09:52,934 --> 02:09:54,369 OUR WORK IS FOCUSED ON WORKING 3753 02:09:54,369 --> 02:09:55,570 WITH OLDER ADULTS WITH HEARING 3754 02:09:55,570 --> 02:09:56,671 LOSS AND SOME OF THOSE 3755 02:09:56,671 --> 02:09:58,073 INDIVIDUALS ALSO HAVE COGNITIVE 3756 02:09:58,073 --> 02:09:58,874 IMPAIRMENT, TWO THINGS REALLY 3757 02:09:58,874 --> 02:10:01,143 STOOD OUT FOR ME THAT I THINK 3758 02:10:01,143 --> 02:10:02,677 ALSO CARRY FORWARD FROM THE 3759 02:10:02,677 --> 02:10:04,112 DISCUSSION BEFORE US AND REALLY 3760 02:10:04,112 --> 02:10:06,548 KIND OF THROUGHOUT THIS TIME, IS 3761 02:10:06,548 --> 02:10:08,049 THINKING ABOUT THE MORE THAT WE 3762 02:10:08,049 --> 02:10:09,584 UNDERSTAND THE GROUP THAT WE ARE 3763 02:10:09,584 --> 02:10:11,453 WORKING WITH IN TERMS OF THE 3764 02:10:11,453 --> 02:10:12,888 POTENTIAL PARTICIPANTS, THE 3765 02:10:12,888 --> 02:10:14,856 COHORT, THE COMMUNITY, THE 3766 02:10:14,856 --> 02:10:15,957 POPULATION, THE MORE THAT WE 3767 02:10:15,957 --> 02:10:17,159 UNDERSTAND KIND OF THEIR NEEDS 3768 02:10:17,159 --> 02:10:19,127 AND THEIR PRIORITIES, ESPECIALLY 3769 02:10:19,127 --> 02:10:21,763 WHEN IT COMES TO WHAT CONSENT 3770 02:10:21,763 --> 02:10:23,198 MAY MEAN FOR THEM IN THE CONTEXT 3771 02:10:23,198 --> 02:10:25,167 OF RESEARCH, I THINK THE BETTER, 3772 02:10:25,167 --> 02:10:27,035 AND I WOULD ALSO SAY, YOU KNOW, 3773 02:10:27,035 --> 02:10:29,237 WHENEVER IN DOUBT ABOUT ANY OF 3774 02:10:29,237 --> 02:10:30,672 THAT, TO REMEMBER TO ASK. 3775 02:10:30,672 --> 02:10:33,842 YOU KNOW, YOU COU DO NOT HAVE TO 3776 02:10:33,842 --> 02:10:35,377 NAVIGATE THIS ALONE IN TERMS OF 3777 02:10:35,377 --> 02:10:36,478 PARTNERING WITH THE GROUPS THAT 3778 02:10:36,478 --> 02:10:38,346 YOU ARE LOOKING TO RECRUIT AND 3779 02:10:38,346 --> 02:10:39,915 INVOLVE IN YOUR RESEARCH. 3780 02:10:39,915 --> 02:10:41,216 AND I WOULD SAY THEN THE SECOND 3781 02:10:41,216 --> 02:10:43,185 THING I THINK THAT IS ALWAYS 3782 02:10:43,185 --> 02:10:44,519 IMPORTANT TO CONSIDER AND KEEP 3783 02:10:44,519 --> 02:10:46,154 IN MIND IS IF WE ARE WORKING TO 3784 02:10:46,154 --> 02:10:48,690 MAKE THE CONSENT PROCESS MORE 3785 02:10:48,690 --> 02:10:50,325 ACCESSIBLE FOR ONE PARTICULAR 3786 02:10:50,325 --> 02:10:51,293 GROUP, WHETHER WE'RE TALKING 3787 02:10:51,293 --> 02:10:53,295 ABOUT INDIVIDUALS WITH COGNITIVE 3788 02:10:53,295 --> 02:10:55,397 IMPAIRMENT, AND INCLUDING THEIR 3789 02:10:55,397 --> 02:10:56,898 CARE PARTNERS OR WHETHER WE'RE 3790 02:10:56,898 --> 02:10:57,899 TALKING ABOUT INDIVIDUALS WITH 3791 02:10:57,899 --> 02:10:59,100 HEARING LOSS, OFTENTIMES, THE 3792 02:10:59,100 --> 02:11:00,869 CHANGES THAT WE'RE MAKING IN 3793 02:11:00,869 --> 02:11:03,171 THAT PROCESS ARE GOING TO 3794 02:11:03,171 --> 02:11:04,106 BENEFIT EVERYBODY IN TERMS OF 3795 02:11:04,106 --> 02:11:04,706 THE CONSENT PROCESS. 3796 02:11:04,706 --> 02:11:06,141 SO I THINK THOSE THINGS ARE 3797 02:11:06,141 --> 02:11:07,008 HOPEFULLY THINGS WE CAN ALSO 3798 02:11:07,008 --> 02:11:09,211 TALK A LITTLE BIT MORE, BUT I 3799 02:11:09,211 --> 02:11:10,779 THINK ARE A GOOD STARTING POINT 3800 02:11:10,779 --> 02:11:11,413 WHEN THINKING ABOUT OLDER 3801 02:11:11,413 --> 02:11:11,746 ADULTS. 3802 02:11:11,746 --> 02:11:12,547 SO THANK YOU. 3803 02:11:12,547 --> 02:11:12,981 >> GREAT. 3804 02:11:12,981 --> 02:11:14,616 THANK YOU SO MUCH. 3805 02:11:14,616 --> 02:11:17,219 NEXT WE HAVE DR. EMILY WANG, 3806 02:11:17,219 --> 02:11:18,854 SHE'S A PROFESSOR IN THE YALE 3807 02:11:18,854 --> 02:11:21,156 SCHOOL OF MEDICINE, DIRECTOR OF 3808 02:11:21,156 --> 02:11:22,491 THE CENTER FOR HEALTH AND 3809 02:11:22,491 --> 02:11:23,892 JUSTICE, DIRECTOR OF THE HEALTH 3810 02:11:23,892 --> 02:11:25,760 JUSTICE LAB AND CO-FOUNDER OF 3811 02:11:25,760 --> 02:11:28,263 THE TRANSITIONS CLINIC NETWORK. 3812 02:11:28,263 --> 02:11:29,064 DR. WANG. 3813 02:11:29,064 --> 02:11:29,397 >> HI. 3814 02:11:29,397 --> 02:11:30,932 IT'S REALLY EXCITING TO BE HERE 3815 02:11:30,932 --> 02:11:34,002 AND I'VE ENJOYED THE AGENDA AS 3816 02:11:34,002 --> 02:11:36,838 OF YET, AND SO I'M HERE, THE 3817 02:11:36,838 --> 02:11:39,674 FOCUS OF OUR WORK IS REALLY 3818 02:11:39,674 --> 02:11:41,877 IMPROVING THE HEALTH OF THOSE 3819 02:11:41,877 --> 02:11:43,512 DISPROPORTIONATELY IMPACTED BY 3820 02:11:43,512 --> 02:11:44,279 MASS INCARCERATION. 3821 02:11:44,279 --> 02:11:45,847 SO CURRENTLY THERE ARE ALMOST 3822 02:11:45,847 --> 02:11:48,483 2 MILLION PEOPLE THAT ARE BEHIND 3823 02:11:48,483 --> 02:11:49,651 BARS, 5 MILLION OR SO THAT ARE 3824 02:11:49,651 --> 02:11:52,721 UNDER A SYSTEM OF COMMUNITY 3825 02:11:52,721 --> 02:11:55,590 CORRECTIONS, AND GIVEN THE 3826 02:11:55,590 --> 02:11:57,325 HISTORY OF TRIALS IN THIS 3827 02:11:57,325 --> 02:11:58,860 COUNTRY, IN THE 1970s AS MANY 3828 02:11:58,860 --> 02:12:00,862 OF YOU ALL KNOW, THERE WERE 3829 02:12:00,862 --> 02:12:04,032 FEDERAL REGULATIONS PUT INTO 3830 02:12:04,032 --> 02:12:06,101 PLACE TO RESTRICT THE UNETHICAL 3831 02:12:06,101 --> 02:12:08,170 PRACTICES OF RESEARCH THAT WAS 3832 02:12:08,170 --> 02:12:09,638 TAKING PLACE. 3833 02:12:09,638 --> 02:12:10,839 THIS IS IN THE 1970s. 3834 02:12:10,839 --> 02:12:12,240 SINCE THEN, WE'VE SEEN FIVE 3835 02:12:12,240 --> 02:12:13,875 DECADES OF MASS INCARCERATION 3836 02:12:13,875 --> 02:12:16,211 THAT GET US TO THIS POINT. 3837 02:12:16,211 --> 02:12:17,612 WHEREBY WE INCARCERATE MORE 3838 02:12:17,612 --> 02:12:18,513 PEOPLE THAN ALMOST ANY COUNTRY 3839 02:12:18,513 --> 02:12:22,784 THE IN THE WORLD. 3840 02:12:22,784 --> 02:12:24,619 THESE ARE INDIVIDUALS 3841 02:12:24,619 --> 02:12:25,520 DISPROPORTIONATELY OF 3842 02:12:25,520 --> 02:12:27,155 MINORITIZED POPULATIONS, 3843 02:12:27,155 --> 02:12:28,023 DISPROPORTIONATELY POOR, AND 3844 02:12:28,023 --> 02:12:30,025 SHARE A LARGE BURDEN OF CHRONIC 3845 02:12:30,025 --> 02:12:32,327 HEALTH CONDITIONS THAT ARE 3846 02:12:32,327 --> 02:12:32,994 INCREASINGLY WORSENING AND I 3847 02:12:32,994 --> 02:12:34,863 THINK DRIVING A LOT OF THE 3848 02:12:34,863 --> 02:12:35,830 DISPARITIES WE SEE IN THIS 3849 02:12:35,830 --> 02:12:36,164 COUNTRY. 3850 02:12:36,164 --> 02:12:38,033 AND THE REAL CRUX HERE IS THAT 3851 02:12:38,033 --> 02:12:39,367 BECAUSE OF THE FEDERAL 3852 02:12:39,367 --> 02:12:42,837 RESTRICTIONS THAT HAVE BEEN PUT 3853 02:12:42,837 --> 02:12:44,706 INTO PLACE, WE KNOW SO LITTLE 3854 02:12:44,706 --> 02:12:46,808 ABOUT HOW MASS INCARCERATION HAS 3855 02:12:46,808 --> 02:12:48,677 AFFECTED HEALTH AND HOW BEST TO 3856 02:12:48,677 --> 02:12:50,312 MITIGATE THE HEALTH HARMS OF 3857 02:12:50,312 --> 02:12:51,746 MASS INCARCERATION. 3858 02:12:51,746 --> 02:12:52,647 SO THIS CONVERSATION ABOUT 3859 02:12:52,647 --> 02:12:53,848 CONSENT, I JUST WANT TO PUT IN 3860 02:12:53,848 --> 02:12:55,250 THAT FRAMEWORK OF REALLY 3861 02:12:55,250 --> 02:12:56,151 UNDERSTANDING OUR HISTORY, OUR 3862 02:12:56,151 --> 02:12:58,920 CURRENT POLICIES, AND HOW THAT 3863 02:12:58,920 --> 02:13:02,290 MAY REALLY PLAY INTO KIND OF 3864 02:13:02,290 --> 02:13:03,692 THESE ISSUES OF CONSENT AS WE 3865 02:13:03,692 --> 02:13:12,834 MOVE FORWARD. 3866 02:13:12,834 --> 02:13:23,144 >> GREAT. 3867 02:13:23,144 --> 02:13:23,645 SORRY ABOUT THAT. 3868 02:13:23,645 --> 02:13:25,046 I HAD A BIT OF TECHNICAL 3869 02:13:25,046 --> 02:13:26,948 DIFFICULTIES. 3870 02:13:26,948 --> 02:13:29,017 NEXT WE HAVE DR. TUNG NGUYEN. 3871 02:13:29,017 --> 02:13:30,619 HE'S A PROFESSOR OF MEDICINE AT 3872 02:13:30,619 --> 02:13:32,053 THE UNIVERS UNIVERSITY OF CALIFA 3873 02:13:32,053 --> 02:13:32,854 SAN FRANCISCO. 3874 02:13:32,854 --> 02:13:34,422 WHERE HE PROVIDES PRIMARY CARE 3875 02:13:34,422 --> 02:13:36,825 TO A DIVERSE PATIENT POPULATION. 3876 02:13:36,825 --> 02:13:39,027 HIS RESEARCH FOCUSES ON 3877 02:13:39,027 --> 02:13:40,895 ACHIEVING HEALTH EQUITY, USING 3878 02:13:40,895 --> 02:13:42,998 COMMUNITY-BASED PARTICIPATORY 3879 02:13:42,998 --> 02:13:45,066 RESEARCH, PATIE PATIENT-CENTERED 3880 02:13:45,066 --> 02:13:46,268 OUTCOMES RESEARCH AND OTHER 3881 02:13:46,268 --> 02:13:47,369 STAKEHOLDER ENGAGED METHODS. 3882 02:13:47,369 --> 02:13:49,371 DR. NGUYEN. 3883 02:13:49,371 --> 02:13:49,804 >> THANK YOU. 3884 02:13:49,804 --> 02:13:51,339 THANK YOU FOR INVITING ME TO 3885 02:13:51,339 --> 02:13:53,074 TALK ON THIS IMPORTANT TOPIC. 3886 02:13:53,074 --> 02:13:54,943 I WANTED TO SAY THAT I'VE BEEN 3887 02:13:54,943 --> 02:13:56,711 WORKING WITH PEOPLE WHO SPEAK 3888 02:13:56,711 --> 02:13:58,213 OTHER LANGUAGES EVER SINCE THE 3889 02:13:58,213 --> 02:13:59,881 FIRST WAVE OF RESEARCH ON 3890 02:13:59,881 --> 02:14:00,982 RECRUITMENT FOR MINORITIES 3891 02:14:00,982 --> 02:14:04,519 AROUND THE TURN OF THE CENTURY. 3892 02:14:04,519 --> 02:14:06,888 AND AS A CTSA CONSULTANT, I 3893 02:14:06,888 --> 02:14:08,456 STILL SEE PEOPLE MAKE THE SAME 3894 02:14:08,456 --> 02:14:09,357 MISTAKES WITH MINORITY 3895 02:14:09,357 --> 02:14:10,458 RECRUITMENT THAT HE THIS MADE 20 3896 02:14:10,458 --> 02:14:12,327 YEARS AGO, AND THE FACT THAT WE 3897 02:14:12,327 --> 02:14:13,328 ARE STILL STRUGGLING WITH THIS 3898 02:14:13,328 --> 02:14:14,963 MEANS THAT THERE ARE FUNDAMENTAL 3899 02:14:14,963 --> 02:14:15,930 PROBLEMS THAT HAVE TO CHANGE. 3900 02:14:15,930 --> 02:14:18,233 WE HAVE TO LOOK AT THE THREE 3901 02:14:18,233 --> 02:14:19,834 Ps, PARADIGM, POLICY AND 3902 02:14:19,834 --> 02:14:21,469 PRACTICE, AND FOR NOW, I'LL JUST 3903 02:14:21,469 --> 02:14:22,904 FOCUS ON PARADIGM. 3904 02:14:22,904 --> 02:14:25,407 IN THE PRIOR SESSION, I THINK 3905 02:14:25,407 --> 02:14:27,075 THE PARADIGM OF INVOLVING THE 3906 02:14:27,075 --> 02:14:28,176 COMMUNITY, I THINK IS REALLY 3907 02:14:28,176 --> 02:14:28,610 IMPORTANT. 3908 02:14:28,610 --> 02:14:29,911 I WON'T TALK TOO MUCH ABOUT 3909 02:14:29,911 --> 02:14:30,412 THAT. 3910 02:14:30,412 --> 02:14:31,513 BUT THE THREE THAT I WANTED TO 3911 02:14:31,513 --> 02:14:33,581 TALK ABOUT IN TERMS OF WORKING 3912 02:14:33,581 --> 02:14:36,051 WITH PEOPLE, QUOTE-UNQUOTE, 3913 02:14:36,051 --> 02:14:36,685 NON-ENGLISH SPEAKERS, THE FIRST 3914 02:14:36,685 --> 02:14:37,752 IS THAT WE HAVE TO CHANGE THE 3915 02:14:37,752 --> 02:14:39,521 PARADIGM OF BEING 3916 02:14:39,521 --> 02:14:39,954 ENGLISH-CENTRIC. 3917 02:14:39,954 --> 02:14:42,824 WE START WITH NOT USING THE TERM 3918 02:14:42,824 --> 02:14:44,025 NON-ENGLISH SPEAKERS, OR EVEN 3919 02:14:44,025 --> 02:14:45,560 THE TERM LIMITED ENGLISH 3920 02:14:45,560 --> 02:14:46,394 PROFICIENT. 3921 02:14:46,394 --> 02:14:47,362 NO ONE SHOULD BE DEFINED BY WHAT 3922 02:14:47,362 --> 02:14:48,463 THEY ARE NOT. 3923 02:14:48,463 --> 02:14:49,998 OR HOW THEY COME UP SHORT ON 3924 02:14:49,998 --> 02:14:51,399 SOMEBODY'S SCALE. 3925 02:14:51,399 --> 02:14:52,967 WE TALK ABOUT RECRUITMENT OF 3926 02:14:52,967 --> 02:14:54,836 WOMEN, NOT NON-MEN OR LIMITED 3927 02:14:54,836 --> 02:14:56,905 MALE PROFICIENCY. 3928 02:14:56,905 --> 02:14:58,907 THE SECOND IS THE ISSUE AROUND 3929 02:14:58,907 --> 02:15:00,775 SCIENTIFIC VALIDITY AND 3930 02:15:00,775 --> 02:15:01,443 EXCLUSION CRITERIA. 3931 02:15:01,443 --> 02:15:02,844 IF LANGUAGE IS NOT RELEVANT TO 3932 02:15:02,844 --> 02:15:06,348 THE TOPIC BEING STUDIED, PEOPLE 3933 02:15:06,348 --> 02:15:07,148 SHOULDN'T BE EXCLUDED BECAUSE 3934 02:15:07,148 --> 02:15:08,550 THEY SPEAK ANOTHER LANGUAGE. 3935 02:15:08,550 --> 02:15:09,651 YET SCIENCE AS A FIELD THINK 3936 02:15:09,651 --> 02:15:12,120 THAT THIS IS SCIENTIFICALLY 3937 02:15:12,120 --> 02:15:12,721 VALID. 3938 02:15:12,721 --> 02:15:14,689 RECENT REVIEWS, EMERGENCY 3939 02:15:14,689 --> 02:15:16,124 MEDICINE AND PEDIATRIC RESEARCH 3940 02:15:16,124 --> 02:15:17,559 SHOW THAT MANY STUDIES DON'T 3941 02:15:17,559 --> 02:15:19,094 REPORT THE LANGUAGES USED, WHICH 3942 02:15:19,094 --> 02:15:21,963 IN AN ENGLISH-CENTRIC WORLD 3943 02:15:21,963 --> 02:15:24,466 PROBABLY MEANS ONLY ENGLISH AND 3944 02:15:24,466 --> 02:15:25,367 MANY OTHERS SPECIFICALLY EXCLUDE 3945 02:15:25,367 --> 02:15:26,234 PEOPLE THAT SPEAK OTHER 3946 02:15:26,234 --> 02:15:27,035 LANGUAGES. 3947 02:15:27,035 --> 02:15:28,303 IN MY VIEW, IF THAT'S GOING TO 3948 02:15:28,303 --> 02:15:29,404 HAPPEN THEN THE TITLE OF THE 3949 02:15:29,404 --> 02:15:31,272 STUDY SHOULD RECOGNIZE THAT. 3950 02:15:31,272 --> 02:15:36,878 A RANDOMIZE THE TRIAL OF DRUG X 3951 02:15:36,878 --> 02:15:40,048 ON PEOPLE WHO SPEAK ENGLISH. 3952 02:15:40,048 --> 02:15:40,815 THE THIRD IS ETHICS. 3953 02:15:40,815 --> 02:15:41,950 WE TEND TO THINK OF PEOPLE WHO 3954 02:15:41,950 --> 02:15:43,485 SPEAK OTHER LANGUAGES AS A 3955 02:15:43,485 --> 02:15:45,553 CATEGORY TO BE PROTECTED. 3956 02:15:45,553 --> 02:15:47,889 THIS MAKES SENSE IN AN ENGLISH 3957 02:15:47,889 --> 02:15:48,423 CENTRIC WORLD. 3958 02:15:48,423 --> 02:15:50,191 TESTIMONY MY RESEARCH TEAM ONLY 3959 02:15:50,191 --> 02:15:51,059 SPEAKS CHINESE AND HAVE THEIR 3960 02:15:51,059 --> 02:15:52,927 DOCUMENTS IN CHINESE THEN THE 3961 02:15:52,927 --> 02:15:54,262 ENGLISH SPEAKERS ARE THE 3962 02:15:54,262 --> 02:15:54,696 PROTECTED CATEGORY. 3963 02:15:54,696 --> 02:15:56,765 AND YOU WOULD SAY TUNG, WHY 3964 02:15:56,765 --> 02:15:57,532 WOULD YOU DO THAT? 3965 02:15:57,532 --> 02:15:59,734 I WOULD THEN SAY, BUT WE ALL ARE 3966 02:15:59,734 --> 02:16:00,401 DOING THAT. 3967 02:16:00,401 --> 02:16:01,703 AND I'LL TAKE IT A STEP FURTHER 3968 02:16:01,703 --> 02:16:03,705 THAT RESEARCH ETHICS IS NOT ONLY 3969 02:16:03,705 --> 02:16:04,906 ABOUT PROTECTION OR RESEARCH 3970 02:16:04,906 --> 02:16:06,341 BURDEN, IT'S ALSO ABOUT BENEFIT. 3971 02:16:06,341 --> 02:16:09,411 SO MY CONTENTION IS THAT 3972 02:16:09,411 --> 02:16:11,045 EXCLUDING PEOPLE OR INADEQUATELY 3973 02:16:11,045 --> 02:16:12,580 RECRUITING THEM IS UNETHICAL, 3974 02:16:12,580 --> 02:16:14,883 AND THAT RESEARCH BUDGETS THAT 3975 02:16:14,883 --> 02:16:16,317 DON'T ACCOUNT FOR THIS IS 3976 02:16:16,317 --> 02:16:17,652 VIOLATING THE PRINCIPLE OF 3977 02:16:17,652 --> 02:16:19,053 DISTRIBUTIVE AND ALLOCATIVE 3978 02:16:19,053 --> 02:16:19,287 JUSTICE. 3979 02:16:19,287 --> 02:16:20,922 AND YOU MAY THINK I'M BEING 3980 02:16:20,922 --> 02:16:22,791 RATHER EXTREME ABOUT THIS, BUT 3981 02:16:22,791 --> 02:16:25,326 AS UCSF OUR IRB IS STARTING TO 3982 02:16:25,326 --> 02:16:29,531 SEND BACK STUDIES THAT HAVE 3983 02:16:29,531 --> 02:16:31,599 INADEQUATE JUSTIFICATION FOR 3984 02:16:31,599 --> 02:16:32,667 LANGUAGE EXCLUSION. 3985 02:16:32,667 --> 02:16:35,103 >> THANK YOU FOR YOUR REMARKS. 3986 02:16:35,103 --> 02:16:36,337 I'M GOING TO START OFF BY ASKING 3987 02:16:36,337 --> 02:16:37,539 A QUESTION FOR ALL OF YOU. 3988 02:16:37,539 --> 02:16:38,940 FOR EACH OF THE POPULATIONS 3989 02:16:38,940 --> 02:16:40,108 YOU'RE REPRESENTING, WHAT ARE 3990 02:16:40,108 --> 02:16:41,342 THE UNIQUE CONSENT CHALLENGES 3991 02:16:41,342 --> 02:16:42,710 AND HOW CAN THOSE CHALLENGES BE 3992 02:16:42,710 --> 02:16:43,144 ADDRESSED? 3993 02:16:43,144 --> 02:16:44,512 I KNOW SOME OF YOU TOUCHED ON 3994 02:16:44,512 --> 02:16:45,780 THAT A LITTLE BIT, BUT CAN YOU 3995 02:16:45,780 --> 02:16:46,981 ALSO TALK ABOUT HOW CAN WE 3996 02:16:46,981 --> 02:16:56,558 ADDRESS THOSE CHALLENGES? 3997 02:16:56,558 --> 02:16:57,425 DR. RAISSY, WOULD YOU LIKE TO 3998 02:16:57,425 --> 02:16:57,959 START US OFF? 3999 02:16:57,959 --> 02:16:59,394 >> SURE. 4000 02:16:59,394 --> 02:17:02,130 I'D BE HAPPY TO DO THAT. 4001 02:17:02,130 --> 02:17:04,432 SO ONE OF THE CHALLENGES THAT WE 4002 02:17:04,432 --> 02:17:07,402 FACE, OTHER THAN THE LANGUAGE 4003 02:17:07,402 --> 02:17:08,403 BARRIER THAT WAS TOUCHED BEFORE, 4004 02:17:08,403 --> 02:17:13,007 JUST BECAUSE WE TONIGHT HAVE DOE 4005 02:17:13,007 --> 02:17:14,642 ENOUGH PERSONNEL TO BE ABLE TO 4006 02:17:14,642 --> 02:17:16,411 FLUENTLY SPEAK THE LANGUAGE, 4007 02:17:16,411 --> 02:17:17,512 OTHER LANGUAGES OTHER THAN 4008 02:17:17,512 --> 02:17:19,481 ENGLISH IS THE PROCESS AND 4009 02:17:19,481 --> 02:17:20,915 ASSENT AND CONSENT WHEN IT COMES 4010 02:17:20,915 --> 02:17:21,783 TO CHILDREN. 4011 02:17:21,783 --> 02:17:24,519 I THINK WE SHOULD ALWAYS BE VERY 4012 02:17:24,519 --> 02:17:26,721 MINDFUL AND CONSIDER THE CHILD 4013 02:17:26,721 --> 02:17:29,457 THAT IS PARTICIPATING IN THE 4014 02:17:29,457 --> 02:17:31,125 STUDY, JUST BECAUSE A PARENT 4015 02:17:31,125 --> 02:17:33,127 DECIDES A CHILD HAS TO BE IN THE 4016 02:17:33,127 --> 02:17:35,430 STUDY, WE HAVE TO FIND A WAY TO 4017 02:17:35,430 --> 02:17:36,531 COMMUNICATE AND SPEND TIME WITH 4018 02:17:36,531 --> 02:17:37,866 THE CHILD SO THEY WOULD FEEL 4019 02:17:37,866 --> 02:17:38,967 COMFORTABLE TO BE PART OF THE 4020 02:17:38,967 --> 02:17:40,468 STUDY TOO. 4021 02:17:40,468 --> 02:17:42,971 SO WE TAKE OUR TIME FOR THAT 4022 02:17:42,971 --> 02:17:45,073 PROCESS, AND WE WILL TRY TO 4023 02:17:45,073 --> 02:17:46,508 HAVE, YOU KNOW, FOR THE CHILD TO 4024 02:17:46,508 --> 02:17:47,809 FEEL COMFORTABLE TO SHARE WITH 4025 02:17:47,809 --> 02:17:49,744 US IF THEY WANT TO DO THIS OR 4026 02:17:49,744 --> 02:17:50,278 NOT. 4027 02:17:50,278 --> 02:17:51,713 WE ALSO TELL THEM, AND WE MAKE 4028 02:17:51,713 --> 02:17:53,181 IT VERY CLEAR THAT AT ANY POINT 4029 02:17:53,181 --> 02:17:55,550 IN THE STUDY IF THEY DON'T WANT 4030 02:17:55,550 --> 02:17:57,085 TO BE POKED OR SO, THEY DON'T 4031 02:17:57,085 --> 02:17:57,519 HAVE TO. 4032 02:17:57,519 --> 02:17:59,487 SO WE TRY TO MAKE THEM FEEL 4033 02:17:59,487 --> 02:18:03,024 COMFORTABLE AND ALSO TO DEVELOP 4034 02:18:03,024 --> 02:18:04,392 THAT TRUST THAT AT ANY POINT 4035 02:18:04,392 --> 02:18:05,860 DURING THE STUDY IF THEY DON'T 4036 02:18:05,860 --> 02:18:07,128 WANT TO DO THE STUDY, PARENTS 4037 02:18:07,128 --> 02:18:10,298 ARE NOT GOING TO MAKE THEM TO 4038 02:18:10,298 --> 02:18:11,633 CONTINUE. 4039 02:18:11,633 --> 02:18:14,536 >> THANK YOU. 4040 02:18:14,536 --> 02:18:14,836 DR. NIEMAN? 4041 02:18:14,836 --> 02:18:15,303 >> SURE. 4042 02:18:15,303 --> 02:18:17,639 SO WHEN THINKING ABOUT OLDER 4043 02:18:17,639 --> 02:18:19,607 ADULTS, WE DO NEED TO KEEP IN 4044 02:18:19,607 --> 02:18:21,676 MIND AS A DEMOGRAPHIC TO OLDER 4045 02:18:21,676 --> 02:18:23,144 ADULTS HAVE SOME OF THE HIGHEST 4046 02:18:23,144 --> 02:18:24,679 LEVELS OF LIMITED HEALTH 4047 02:18:24,679 --> 02:18:25,446 LITERACY. 4048 02:18:25,446 --> 02:18:27,415 SO JUST IN GENERAL, WHEN YOU'RE 4049 02:18:27,415 --> 02:18:28,850 THINKING ABOUT OLDER ADULTS, 4050 02:18:28,850 --> 02:18:31,152 REALLY PUSHING FOR AS CLEAR AND 4051 02:18:31,152 --> 02:18:32,787 PLAIN LANGUAGE AS POSSIBLE, 4052 02:18:32,787 --> 02:18:34,255 WHICH OBVIOUSLY, AGAIN, BENEFITS 4053 02:18:34,255 --> 02:18:35,323 EVERYBODY AND WE SHOULD ALWAYS 4054 02:18:35,323 --> 02:18:37,091 BE PUSHING FOR THAT. 4055 02:18:37,091 --> 02:18:38,593 BUT THEN WE'RE ALSO THINKING IN 4056 02:18:38,593 --> 02:18:40,461 TERMS OF COGNITIVE IMPAIRMENT, 4057 02:18:40,461 --> 02:18:41,129 RIGHT? 4058 02:18:41,129 --> 02:18:42,931 AGE IS THE BIGGEST RISK FACTOR 4059 02:18:42,931 --> 02:18:44,332 FOR COGNITIVE IMPAIRMENT, SO 4060 02:18:44,332 --> 02:18:48,536 THEN, YOU KNOW, WE CAN'T JUST 4061 02:18:48,536 --> 02:18:49,637 BLANKET ASSUME THAT INDIVIDUALS 4062 02:18:49,637 --> 02:18:50,939 CAN'T PARTICIPATE IN RESEARCH. 4063 02:18:50,939 --> 02:18:52,907 WE SHOULD BE GIVING INDIVIDUALS 4064 02:18:52,907 --> 02:18:53,775 AN OPPORTUNITY. 4065 02:18:53,775 --> 02:18:55,577 AND HAVING A LITTLE BIT MORE 4066 02:18:55,577 --> 02:18:57,211 SPECIFICITY OF UNDERSTANDING 4067 02:18:57,211 --> 02:18:58,613 WHETHER OR NOT THEY ARE ABLE TO 4068 02:18:58,613 --> 02:19:00,582 CONSENT FOR THEMSELVES. 4069 02:19:00,582 --> 02:19:02,584 SO THERE ARE A NUMBER OF 4070 02:19:02,584 --> 02:19:04,786 VALIDATED TOOLS AND MEASUREMENTS 4071 02:19:04,786 --> 02:19:06,588 THERE THAT HAVE BEEN USED BUT WE 4072 02:19:06,588 --> 02:19:08,423 KNOW THAT ARE UNDERUTILIZED WHEN 4073 02:19:08,423 --> 02:19:09,424 IT COMES TO UNDERSTANDING 4074 02:19:09,424 --> 02:19:10,525 SOMEBODY'S ABILITY TO CONSENT TO 4075 02:19:10,525 --> 02:19:12,293 THE RESEARCH PROCESS AND 4076 02:19:12,293 --> 02:19:13,027 UNDERSTAND. 4077 02:19:13,027 --> 02:19:13,962 SO FOR EXAMPLE, THERE CAN BE 4078 02:19:13,962 --> 02:19:15,463 SOME REALLY QUICK AND EASY TOOLS 4079 02:19:15,463 --> 02:19:17,565 THAT ARE OUT THERE, SO FOR 4080 02:19:17,565 --> 02:19:18,299 EXAMPLE, UNIVERSITY OF 4081 02:19:18,299 --> 02:19:19,867 CALIFORNIA SAN DIEGO'S BRIEF 4082 02:19:19,867 --> 02:19:21,069 ASSESSMENT OF CAPACITY TO 4083 02:19:21,069 --> 02:19:24,038 CONSENT OR THE UBACC IS A TOOL 4084 02:19:24,038 --> 02:19:25,607 THAT'S OUT THERE THAT'S LESS 4085 02:19:25,607 --> 02:19:26,574 THAN FIVE MINUTES AND REALLY 4086 02:19:26,574 --> 02:19:29,677 TRIES TO GET AT WHETHER SOMEBODY 4087 02:19:29,677 --> 02:19:31,613 UNDERSTANDS AND APPRECIATES, 4088 02:19:31,613 --> 02:19:32,647 WHICH ARE TWO FUNDAMENTAL PIECES 4089 02:19:32,647 --> 02:19:34,816 OF THE CONSENT PROCESS, SO 4090 02:19:34,816 --> 02:19:37,018 TRYING TO PUSH OURSELVES TO USE 4091 02:19:37,018 --> 02:19:38,419 SOME OF THESE VALIDATED 4092 02:19:38,419 --> 02:19:39,020 ASSESSMENTS THAT ARE OUT THERE 4093 02:19:39,020 --> 02:19:40,989 THAT HAD BEEN PROVEN CAN BE ONE 4094 02:19:40,989 --> 02:19:43,191 TOOL BECAUSE, AGAIN, WE DO, JUST 4095 02:19:43,191 --> 02:19:44,859 LIKE THINKING ABOUT POPULATIONS 4096 02:19:44,859 --> 02:19:46,194 WITH DIFFERENT LANGUAGES, WE 4097 02:19:46,194 --> 02:19:48,830 WANT TO INCLUDE AS MANY OLDER 4098 02:19:48,830 --> 02:19:50,832 ADULTS REGARDLESS OF MAYBE 4099 02:19:50,832 --> 02:19:51,833 THEIR DEGREE OF COGNITIVE 4100 02:19:51,833 --> 02:19:53,468 IMPAIRMENT OR SOME OF THEIR 4101 02:19:53,468 --> 02:19:55,336 SENSORY LIMITATIONS WITHIN OUR 4102 02:19:55,336 --> 02:19:57,572 RESEARCH PROCESS AS WE PUSH, YOU 4103 02:19:57,572 --> 02:19:59,073 KNOW, OBVIOUSLY FOR EXTERNAL 4104 02:19:59,073 --> 02:19:59,407 VALIDITY. 4105 02:19:59,407 --> 02:20:00,508 SO I THINK THOSE ARE SOME THINGS 4106 02:20:00,508 --> 02:20:01,542 TO KEEP IN MIND. 4107 02:20:01,542 --> 02:20:02,977 AND THEN ALSO REALLY PUSHING IN 4108 02:20:02,977 --> 02:20:04,812 TERMS OF WAYS IN WHICH WE MAY 4109 02:20:04,812 --> 02:20:06,581 PRESENT INFORMATION AROUND 4110 02:20:06,581 --> 02:20:08,249 CONSENT IN TERMS OF HAVING 4111 02:20:08,249 --> 02:20:09,584 MULTIPLE MODALITIES, WHETHER 4112 02:20:09,584 --> 02:20:11,419 IT'S WRITTEN, WHETHER IT'S 4113 02:20:11,419 --> 02:20:12,854 AUDIO, WHETHER THERE'S VIDEOS, 4114 02:20:12,854 --> 02:20:13,821 WHETHER THERE'S FIGURES, IN 4115 02:20:13,821 --> 02:20:15,523 TERMS OF SUPPORTING THE ACTUAL 4116 02:20:15,523 --> 02:20:18,593 INFORMATION. 4117 02:20:18,593 --> 02:20:20,795 >> THANK YOU SO MUCH. 4118 02:20:20,795 --> 02:20:21,062 DR. WANG? 4119 02:20:21,062 --> 02:20:21,596 >> SURE. 4120 02:20:21,596 --> 02:20:23,564 AND I'LL SAY THAT CERTAINLY KIND 4121 02:20:23,564 --> 02:20:24,866 OF IN THINKING ABOUT 4122 02:20:24,866 --> 02:20:25,867 INCARCERATED POPULATIONS AND 4123 02:20:25,867 --> 02:20:27,535 THEN THOSE THAT HAVE JUSTICE 4124 02:20:27,535 --> 02:20:29,303 INVOLVEMENT, THERE ARE ALL SORTS 4125 02:20:29,303 --> 02:20:31,372 OF PROCESS MEASURES THAT, YOU 4126 02:20:31,372 --> 02:20:33,041 KNOW, AGAIN IN THE PROCEDURES OF 4127 02:20:33,041 --> 02:20:35,677 INFORMED CONSENT THAT DR. NIEMAN 4128 02:20:35,677 --> 02:20:36,778 IDENTIFIED THAT WOULD BE 4129 02:20:36,778 --> 02:20:38,646 IMPORTANT FOR ATTENDING TO 4130 02:20:38,646 --> 02:20:39,647 ESPECIALLY THINKING ABOUT KIND 4131 02:20:39,647 --> 02:20:42,483 OF WHO IS INCARCERATED AND HOW 4132 02:20:42,483 --> 02:20:43,051 THEY'RE INCARCERATED. 4133 02:20:43,051 --> 02:20:44,552 I THINK FOR THIS POPULATION IN 4134 02:20:44,552 --> 02:20:45,119 PARTICULAR, I THINK IT'S 4135 02:20:45,119 --> 02:20:46,587 IMPORTANT TO JUST THINK ABOUT 4136 02:20:46,587 --> 02:20:47,889 WHAT IT IS -- WHAT CONSENT IS, 4137 02:20:47,889 --> 02:20:51,159 YOU KNOW, AND HOW IT IS THAT 4138 02:20:51,159 --> 02:20:52,427 PEOPLE ARE ABLE TO APPROPRIATELY 4139 02:20:52,427 --> 02:20:54,162 MEASURE THEIR RISKS AND BENEFITS 4140 02:20:54,162 --> 02:20:57,365 OF PARTICIPATION AND ULTIMATELY 4141 02:20:57,365 --> 02:20:59,467 KIND OF MULTIPLY IN 4142 02:20:59,467 --> 02:21:00,334 CONVERSATIONS IT GOES TO THESE 4143 02:21:00,334 --> 02:21:02,537 ISSUES OF COERCION AND 4144 02:21:02,537 --> 02:21:03,404 ESPECIALLY STRUCTURAL COERCION. 4145 02:21:03,404 --> 02:21:06,941 TO ME, WHAT IS PROBLEMATIC ABOUT 4146 02:21:06,941 --> 02:21:09,711 CURRENT GU GUIDANCE, WHAT I THIK 4147 02:21:09,711 --> 02:21:10,478 REALLY NEEDS TO CHANGE IS A 4148 02:21:10,478 --> 02:21:11,913 NUMBER OF ISSUES. 4149 02:21:11,913 --> 02:21:13,548 AGAIN, GIVEN FIVE DECADES OF 4150 02:21:13,548 --> 02:21:15,450 MASS INCARCERATION IS THAT 4151 02:21:15,450 --> 02:21:19,520 CONCERNS OF COERCION ARE 4152 02:21:19,520 --> 02:21:20,788 ACTUALLY -- IF YOU'VE SEEN ONE 4153 02:21:20,788 --> 02:21:22,223 JAIL OR PRI SORNTION YOU'VE SEEN 4154 02:21:22,223 --> 02:21:23,958 ONE JAIL OR PRISON. 4155 02:21:23,958 --> 02:21:25,359 THERE'S 6,000 PLUS OF THEM OF 4156 02:21:25,359 --> 02:21:26,594 OUR PRISONS AND JAILS. 4157 02:21:26,594 --> 02:21:28,696 AND BECAUSE OF WHO WE'VE 4158 02:21:28,696 --> 02:21:29,697 INCARCERATED AND HOW WE'VE 4159 02:21:29,697 --> 02:21:30,898 INCARCERATED, THE EXPERIENCE OF 4160 02:21:30,898 --> 02:21:31,666 INCARCERATION IS VERY DIFFERENT 4161 02:21:31,666 --> 02:21:33,000 FOR A PERSON THAT'S IN AND OUT 4162 02:21:33,000 --> 02:21:35,603 OF JAILS VERSUS A PERSON THAT'S 4163 02:21:35,603 --> 02:21:36,404 BEEN -- PATIENTS OF MINE THAT 4164 02:21:36,404 --> 02:21:39,240 HAVE BEEN IN THERE 40, 50 YEARS. 4165 02:21:39,240 --> 02:21:41,275 THEIR EXPERIENCE OF THAT PLACE, 4166 02:21:41,275 --> 02:21:42,910 THEIR EXPERIENCE OF COERCION IS 4167 02:21:42,910 --> 02:21:43,978 REALLY DIFFERENT, AND OUR 4168 02:21:43,978 --> 02:21:45,947 POLICIES RIGHT NOW ARE ONES THAT 4169 02:21:45,947 --> 02:21:48,082 MAKE THAT EXPERIENCE ENTIRELY 4170 02:21:48,082 --> 02:21:48,616 MONOLITHIC. 4171 02:21:48,616 --> 02:21:50,251 THEY DO NOT INCLUDE INCARCERATED 4172 02:21:50,251 --> 02:21:51,586 PEOPLE, THEY'VE NEVER BEEN IN 4173 02:21:51,586 --> 02:21:53,221 THIS DECISION-MAKING PROCESS, 4174 02:21:53,221 --> 02:21:55,123 AND SO TO ME, I THINK IT'S 4175 02:21:55,123 --> 02:21:58,392 BROADER ISSUES OF HOW IT IS THAT 4176 02:21:58,392 --> 02:21:59,927 WE SEE THEIR PERSONHOOD, CAN 4177 02:21:59,927 --> 02:22:01,362 PEOPLE ACTUALLY GIVE CONSENT 4178 02:22:01,362 --> 02:22:02,663 WHEN THEY'RE INCARCERATED, AND 4179 02:22:02,663 --> 02:22:05,466 IF SO, CAN WE SEE NUANCE IN THE 4180 02:22:05,466 --> 02:22:09,070 LAYERS OF STRUCTURAL COERCION 4181 02:22:09,070 --> 02:22:11,239 FOR DIFFERENT PEOPLE AS THEY'RE 4182 02:22:11,239 --> 02:22:12,607 INCARCERATED IN DIFFERENT SORTS 4183 02:22:12,607 --> 02:22:13,274 OF SETTINGS. 4184 02:22:13,274 --> 02:22:15,143 A PRISON IN ALABAMA IS GOING TO 4185 02:22:15,143 --> 02:22:18,279 LOOK REALLY DIFFERENT THAN AN 4186 02:22:18,279 --> 02:22:19,847 ICE FACILITY UP NORTH WHICH 4187 02:22:19,847 --> 02:22:20,648 LOOKS REALLY DIFFERENT THAN A 4188 02:22:20,648 --> 02:22:21,716 JAIL, LET'S SAY, IN NEW YORK 4189 02:22:21,716 --> 02:22:22,316 CITY. 4190 02:22:22,316 --> 02:22:25,453 >> THANK YOU. 4191 02:22:25,453 --> 02:22:25,753 DR. NGUYEN? 4192 02:22:25,753 --> 02:22:28,356 >> YES, THANK YOU. 4193 02:22:28,356 --> 02:22:29,857 I DO AGREE WHEN WE TALKED ABOUT 4194 02:22:29,857 --> 02:22:32,293 OTHER LANGUAGES, WE START WITH 4195 02:22:32,293 --> 02:22:33,394 THE SOURCE MATERIAL, WHICH IS 4196 02:22:33,394 --> 02:22:35,163 THE ENGLISH, AND I LIKE TO SAY 4197 02:22:35,163 --> 02:22:36,597 THAT IS NOT ACTUALLY ENGLISH 4198 02:22:36,597 --> 02:22:37,999 THAT WE PUT IN OUR CONSENT IN 4199 02:22:37,999 --> 02:22:39,801 THE RESEARCH DOCUMENT, IT'S 4200 02:22:39,801 --> 02:22:41,002 USUALLY SCIENTIFIC ENGLISH. 4201 02:22:41,002 --> 02:22:42,570 AND THE WAY TO DO THAT IS, OF 4202 02:22:42,570 --> 02:22:43,771 COURSE, YOU NEED TO MAKE SURE 4203 02:22:43,771 --> 02:22:47,508 YOUR ENGLISH MATERIAL IS LOW -- 4204 02:22:47,508 --> 02:22:49,010 AT LEAST -- THE APPROPRIATE 4205 02:22:49,010 --> 02:22:50,578 LITERACY LEVEL, AND IT'S EASY TO 4206 02:22:50,578 --> 02:22:51,345 DO THAT THESE DAYS. 4207 02:22:51,345 --> 02:22:54,749 YOU KNOW, MICROSOFT WORD WOULD 4208 02:22:54,749 --> 02:22:56,951 GIVE YOU A KINCAID LITERACY 4209 02:22:56,951 --> 02:22:58,085 LEVEL ON ANY DOCUMENT YOU STICK 4210 02:22:58,085 --> 02:23:01,022 IN IT, AND MOST OF THE TIME IT'S 4211 02:23:01,022 --> 02:23:02,924 22 -- GRADE 22 OR HIGHER, MOST 4212 02:23:02,924 --> 02:23:03,925 OF THE RESEARCH THINGS I SEE, 4213 02:23:03,925 --> 02:23:04,692 WHICH MEANS THAT YOU HAVE TO 4214 02:23:04,692 --> 02:23:08,963 HAVE A PH.D. TO UNDERSTAND IT. 4215 02:23:08,963 --> 02:23:10,298 SO IF YOU'RE GOING DO THAT, 4216 02:23:10,298 --> 02:23:11,732 YOU'RE GOING TO GET TRANSLATED 4217 02:23:11,732 --> 02:23:12,633 DOCUMENTS THAT SUCK BECAUSE 4218 02:23:12,633 --> 02:23:15,069 PEOPLE REALLY CAN'T TRANSLATE 4219 02:23:15,069 --> 02:23:15,937 GRADE 22 MATERIALS TO OTHER 4220 02:23:15,937 --> 02:23:18,773 LANGUAGES IN A WAY THAT MAKES 4221 02:23:18,773 --> 02:23:20,208 SENSE. 4222 02:23:20,208 --> 02:23:21,442 THEN OF COURSE ONCE YOU 4223 02:23:21,442 --> 02:23:22,877 TRANSLATE IT YOU HAVE TO MAKE 4224 02:23:22,877 --> 02:23:23,878 SURE IT'S THE APPROPRIATE 4225 02:23:23,878 --> 02:23:26,714 LITERACY LEVEL FOR THE OTHER 4226 02:23:26,714 --> 02:23:27,381 LANGUAGE. 4227 02:23:27,381 --> 02:23:30,818 AND OBVIOUS OBVIOUSLY THERE'S SE 4228 02:23:30,818 --> 02:23:32,553 REGULATORY THINGS, USING 4229 02:23:32,553 --> 02:23:35,089 CERTIFIED TRANSLATORS BUT EVEN 4230 02:23:35,089 --> 02:23:36,991 CERTIFIED TRANSLATORS ARE NO 4231 02:23:36,991 --> 02:23:37,658 GUARANTEE OF APPROPRIATE 4232 02:23:37,658 --> 02:23:39,493 DOCUMENTS BECAUSE FOR ONE, GIVEN 4233 02:23:39,493 --> 02:23:41,696 THE FACT THAT MANY LANGUAGE 4234 02:23:41,696 --> 02:23:44,298 GROUPS ARE VERY HETEROGENEOUS A 4235 02:23:44,298 --> 02:23:45,666 PERSON MAY BE REALLY GOOD AT THE 4236 02:23:45,666 --> 02:23:47,101 LANGUAGE AND GET CERTIFIED MAY 4237 02:23:47,101 --> 02:23:48,536 ACTUALLY NOT USE THE RIGHT 4238 02:23:48,536 --> 02:23:50,438 DIALECT OR USE THE RIGHT TYPES 4239 02:23:50,438 --> 02:23:52,840 OF WORDS, IMMIGRANTS USE 4240 02:23:52,840 --> 02:23:54,809 DIFFERENT WORDS, WHICH I 4241 02:23:54,809 --> 02:23:56,878 THINK -- SPANISH, PERSON FROM 4242 02:23:56,878 --> 02:23:58,446 SPAIN TO TRANSLATE SOMETHING MAY 4243 02:23:58,446 --> 02:23:59,881 NOT READ VERY WELL WITH A 4244 02:23:59,881 --> 02:24:01,082 MEXICAN PARTICIPANT AND SO ON 4245 02:24:01,082 --> 02:24:01,515 AND SO FORTH. 4246 02:24:01,515 --> 02:24:04,752 SO YOU ACTUALLY ALSO NEED -- 4247 02:24:04,752 --> 02:24:05,953 AFTER THE TRANSLATION IS DONE, 4248 02:24:05,953 --> 02:24:07,521 YOU NEED REVIEWS AND TYPICALLY 4249 02:24:07,521 --> 02:24:09,824 COMMUNITY REVIEWS, PEOPLE FROM 4250 02:24:09,824 --> 02:24:10,725 THE COMMUNITY THAT YOU'RE TRYING 4251 02:24:10,725 --> 02:24:12,360 TO REACH TO MAKE SURE THAT THE 4252 02:24:12,360 --> 02:24:14,862 THING ACTUALLY MAKES SENSE IN 4253 02:24:14,862 --> 02:24:17,531 THE LANGUAGE THAT YOU'RE AIMING 4254 02:24:17,531 --> 02:24:18,599 FOR. 4255 02:24:18,599 --> 02:24:19,767 OTHER THINGS, I REALLY LIKE THE 4256 02:24:19,767 --> 02:24:22,403 IDEA OF VIDEO CONSENT NOWADAYS 4257 02:24:22,403 --> 02:24:23,271 BECAUSE -- FOR TWO REASONS. 4258 02:24:23,271 --> 02:24:25,806 ONE, IT DOESN'T PRESUME THAT THE 4259 02:24:25,806 --> 02:24:27,108 PERSON IS LITERAL IN THEIR OWN 4260 02:24:27,108 --> 02:24:27,608 LANGUAGE. 4261 02:24:27,608 --> 02:24:29,143 SO THERE ARE MANY PEOPLE WHO ARE 4262 02:24:29,143 --> 02:24:30,878 NOT LITERATE IN EITHER ENGLISH 4263 02:24:30,878 --> 02:24:32,213 OR THEIR NATIVE LANGUAGE. 4264 02:24:32,213 --> 02:24:33,714 AND SO A PIECE OF PAPER WILL 4265 02:24:33,714 --> 02:24:36,050 JUST, YOU KNOW, BE NO GOOD. 4266 02:24:36,050 --> 02:24:37,585 AND SECOND, THERE IS ALSO THE 4267 02:24:37,585 --> 02:24:39,220 POSSIBILITY OF HAVING A PERSON 4268 02:24:39,220 --> 02:24:42,156 WHO HAS SOME PROXY TRUST ASKING 4269 02:24:42,156 --> 02:24:43,991 FOR CONSENT OR DESCRIBING THE 4270 02:24:43,991 --> 02:24:45,326 INFORMATION, SO A PERSON WHO'S A 4271 02:24:45,326 --> 02:24:47,561 TRUSTED HEALTH PROFESSIONAL OR A 4272 02:24:47,561 --> 02:24:48,663 COMMUNITY LEADER OR SOMEBODY WHO 4273 02:24:48,663 --> 02:24:49,430 LOOKS LIKE THE PERSON THAT 4274 02:24:49,430 --> 02:24:52,099 YOU'RE TRYING TO REACH TELLING 4275 02:24:52,099 --> 02:24:54,402 THEM ABOUT THE STUDY, EVEN AT 4276 02:24:54,402 --> 02:24:56,270 THE CONSENT LEVEL IN A VIDEO, 4277 02:24:56,270 --> 02:24:58,339 THAT WOULD HELP QUITE A BIT. 4278 02:24:58,339 --> 02:25:00,141 THERE ARE OTHER THINGS REALLY 4279 02:25:00,141 --> 02:25:02,543 THAT ARE MUCH MORE SUBTLE AND 4280 02:25:02,543 --> 02:25:03,945 SOPHISTICATED, THINGS AROUND THE 4281 02:25:03,945 --> 02:25:06,314 KIND OF WORD CHOICES THAT YOU 4282 02:25:06,314 --> 02:25:09,684 USE THAT CAN REALLY HURT 4283 02:25:09,684 --> 02:25:11,352 RECRUITMENT, THINGS AROUND 4284 02:25:11,352 --> 02:25:12,086 RANDOMIZATION, FOR EXAMPLE, THAT 4285 02:25:12,086 --> 02:25:15,756 ARE VERY TRICKY TO EXPLAIN 4286 02:25:15,756 --> 02:25:16,524 CONCEPTUALLY, AND ALSO THINGS 4287 02:25:16,524 --> 02:25:18,159 ABOUT BEING IN CONTROL GROUPS. 4288 02:25:18,159 --> 02:25:20,061 AND AGAIN, GOING BACK TO 4289 02:25:20,061 --> 02:25:21,696 COMMUNITY-BASED PARTICIPATORY 4290 02:25:21,696 --> 02:25:22,697 RESEARCH, COMMUNITY ENGAGED 4291 02:25:22,697 --> 02:25:23,898 RESEARCH, HAVING PEOPLE WHO KNOW 4292 02:25:23,898 --> 02:25:25,066 HOW TO WORK IN THOSE AREAS CAN 4293 02:25:25,066 --> 02:25:26,500 HELP YOUR DOCUMENTS AND YOUR 4294 02:25:26,500 --> 02:25:29,337 CONSENT PROCESSES. 4295 02:25:29,337 --> 02:25:31,372 >> THANK YOU SO MUCH. 4296 02:25:31,372 --> 02:25:32,573 SO DR. NGUYEN, YOU TOUCHED A 4297 02:25:32,573 --> 02:25:34,742 LITTLE BIT ON VIDEO CONSENT AND 4298 02:25:34,742 --> 02:25:37,111 I WANT TO ASK ALL OF THE 4299 02:25:37,111 --> 02:25:38,412 PANELISTS ABOUT REMOTE 4300 02:25:38,412 --> 02:25:39,080 CONSENTING. 4301 02:25:39,080 --> 02:25:41,582 SO WE KNOW IT BECAME MUCH MORE 4302 02:25:41,582 --> 02:25:43,784 COMMON DUE TO COVID-19. 4303 02:25:43,784 --> 02:25:46,587 WHAT ARE SOME OF THE CHALLENGES, 4304 02:25:46,587 --> 02:25:47,822 TECHNOLOGICAL AND OTHERWISE 4305 02:25:47,822 --> 02:25:49,623 OTHER CHALLENGES, RELATED TO 4306 02:25:49,623 --> 02:25:53,527 REMOTE CONSENTING? 4307 02:25:53,527 --> 02:25:54,195 >> I CAN START. 4308 02:25:54,195 --> 02:25:57,031 I MEAN, IT'S HARD BECAUSE, 4309 02:25:57,031 --> 02:25:58,132 AGAIN, WHEN YOU WORK WITH 4310 02:25:58,132 --> 02:26:00,534 CERTAIN POPULATIONS, TRUST IS 4311 02:26:00,534 --> 02:26:00,801 PARAMOUNT. 4312 02:26:00,801 --> 02:26:01,836 YOU CAN'T EVEN GET TO THE POINT 4313 02:26:01,836 --> 02:26:03,104 OF TALKING ABOUT RESEARCH UNLESS 4314 02:26:03,104 --> 02:26:06,540 THEY HAVE SOME TRUST OF YOU. 4315 02:26:06,540 --> 02:26:07,942 AND REMOTELY, IT'S JUST HARDER 4316 02:26:07,942 --> 02:26:08,709 TO ESTABLISH TRUST. 4317 02:26:08,709 --> 02:26:10,244 EVEN THOUGH ON ZOOM, IT'S HARD 4318 02:26:10,244 --> 02:26:12,079 TO GET TRUST BUILT, RIGHT? 4319 02:26:12,079 --> 02:26:17,651 SO I THINK IT'S NECESSARY. IT 4320 02:26:17,651 --> 02:26:18,552 COULD BE GOOD IN A SENSE THAT 4321 02:26:18,552 --> 02:26:22,089 YOU COULD EXPAND THE REACH OF 4322 02:26:22,089 --> 02:26:23,924 WHO YOU CAN TALK TO IN CONSENT. 4323 02:26:23,924 --> 02:26:26,427 IT CAN ALSO ALLOW YOU, FOR 4324 02:26:26,427 --> 02:26:27,828 EXAMPLE, IF YOU HAVE A 4325 02:26:27,828 --> 02:26:29,563 TRANSLATOR, IT'S EASIER FOR THE 4326 02:26:29,563 --> 02:26:31,098 TRANSLATOR OR INTERPRETER TO DO 4327 02:26:31,098 --> 02:26:31,799 IT REMOTELY, RIGHT? 4328 02:26:31,799 --> 02:26:33,000 BECAUSE YOU DON'T HAVE TO GO 4329 02:26:33,000 --> 02:26:34,635 FROM ONE CLINIC TO ANOTHER, WE 4330 02:26:34,635 --> 02:26:36,103 DO THIS IN CLINICAL CARE TOO, 4331 02:26:36,103 --> 02:26:37,004 IT'S THE SAME PROBLEM. 4332 02:26:37,004 --> 02:26:38,539 WHEN YOU GO FROM ONE CLINIC TO 4333 02:26:38,539 --> 02:26:40,241 ANOTHER, IT'S THE INTERPRETER'S 4334 02:26:40,241 --> 02:26:41,142 TIME THAT BECOMES THE PROBLEM, 4335 02:26:41,142 --> 02:26:42,410 NOT THE PROVIDER'S TIME. 4336 02:26:42,410 --> 02:26:43,611 SAME THING WITH CONSENT. 4337 02:26:43,611 --> 02:26:45,246 IF YOU CAN DO IT REMOTELY, THAT 4338 02:26:45,246 --> 02:26:49,016 CAN BE REALLY, REALLY HELPFUL. 4339 02:26:49,016 --> 02:26:51,218 BUT REALLY, IT REALLY RAISES UP 4340 02:26:51,218 --> 02:26:52,586 THE WHOLE PROBLEM OF TRUST. 4341 02:26:52,586 --> 02:26:54,555 AND DO YOU HAVE TRUST WITH THESE 4342 02:26:54,555 --> 02:26:55,890 PEOPLE AND THEN AGAIN THAT GOES 4343 02:26:55,890 --> 02:26:57,792 BACK TO COMMUNITY ENGAGED 4344 02:26:57,792 --> 02:26:59,527 PRINCIPLE, IF YOU'RE WORKING 4345 02:26:59,527 --> 02:27:01,829 WITH PEOPLE THROUGH WHAT I CALL 4346 02:27:01,829 --> 02:27:02,797 PROXY TRUST THAT THEY ARE 4347 02:27:02,797 --> 02:27:03,697 TRUSTING THE COMMUNITY 4348 02:27:03,697 --> 02:27:04,231 ORGANIZATIONS THAT YOU'RE 4349 02:27:04,231 --> 02:27:04,865 WORKING WITH, THEN YOU HAVE A 4350 02:27:04,865 --> 02:27:08,269 BETTER CHANCE. 4351 02:27:08,269 --> 02:27:09,670 >> GREAT, THANK YOU. 4352 02:27:09,670 --> 02:27:11,238 >> I'LL ADD TO THIS. 4353 02:27:11,238 --> 02:27:15,276 DURING COVID, WE HAVE RECEIVED 4354 02:27:15,276 --> 02:27:20,981 FUNDING TO LOOK AT WHAT WERE THE 4355 02:27:20,981 --> 02:27:22,750 BEST MITIGATION STRATEGIES 4356 02:27:22,750 --> 02:27:27,788 WITHIN CARCERAL SYSTEMS. 4357 02:27:27,788 --> 02:27:29,824 WE WERE UNABLE TO GO IN AND DO 4358 02:27:29,824 --> 02:27:30,958 FOCUS GROUPS SO ENDED UP HAVING 4359 02:27:30,958 --> 02:27:34,261 TO SWITCH TO VIDEO INTERVIEWING, 4360 02:27:34,261 --> 02:27:35,129 VIDEO CONSENT. 4361 02:27:35,129 --> 02:27:38,299 SO CERTAIN ISSUES PRESENTED 4362 02:27:38,299 --> 02:27:39,733 THEMSELVES INCLUDING BUT NOT 4363 02:27:39,733 --> 02:27:41,435 LIMITED TO, YOU KNOW, MANY 4364 02:27:41,435 --> 02:27:42,736 PRISONS AND JAILS DON'T PERMIT 4365 02:27:42,736 --> 02:27:44,939 KIND OF ANY SORT OF VIDEO 4366 02:27:44,939 --> 02:27:46,173 INTERACTION, SO HOW DO YOU KIND 4367 02:27:46,173 --> 02:27:48,642 OF SET THAT UP. 4368 02:27:48,642 --> 02:27:50,578 SECONDARILY, THERE WERE CONCERNS 4369 02:27:50,578 --> 02:27:52,346 ALSO THAT WE COULDN'T, AS 4370 02:27:52,346 --> 02:27:53,848 RESEARCHERS, REALLY KIND OF SEE 4371 02:27:53,848 --> 02:27:54,915 IF THERE WEREN'T, YOU KNOW, 4372 02:27:54,915 --> 02:27:57,651 TRYING TO CREATE A SPECIAL SPACE 4373 02:27:57,651 --> 02:27:59,053 WHERE CORRECTIONAL OFFICERS 4374 02:27:59,053 --> 02:28:00,454 WOULDN'T BE LET IN, SO FOR THE 4375 02:28:00,454 --> 02:28:01,889 JAIL AND PRISON ADMINISTRATORS, 4376 02:28:01,889 --> 02:28:03,157 THEY HAD TO FIND AN OFFICE WHERE 4377 02:28:03,157 --> 02:28:06,293 IT WAS QUIET, WHERE THE 4378 02:28:06,293 --> 02:28:08,162 INCARCERATED PERSON OR THE 4379 02:28:08,162 --> 02:28:09,029 CORRECTIONAL WORKER COULD SIT 4380 02:28:09,029 --> 02:28:12,766 AND TALK TO US FACE-TO-FACE AND 4381 02:28:12,766 --> 02:28:13,734 MAKE CERTAIN THERE WAS NO ONE 4382 02:28:13,734 --> 02:28:14,768 ELSE IN THE ROOM. 4383 02:28:14,768 --> 02:28:17,505 AND THEN THIRDLY, TO KIND OF 4384 02:28:17,505 --> 02:28:19,740 CONTEND WITH PRISON POLICIES OF 4385 02:28:19,740 --> 02:28:22,710 HOW IT IS THAT THEY WANTED TO 4386 02:28:22,710 --> 02:28:24,011 SEE THAT WE WEREN'T 4387 02:28:24,011 --> 02:28:25,546 COMMUNICATING ANYTHING UNDUE OR 4388 02:28:25,546 --> 02:28:29,750 BRINGING ANYTHING INTO THE SPACE 4389 02:28:29,750 --> 02:28:31,519 THAT WAS AGAINST PRISON 4390 02:28:31,519 --> 02:28:31,919 POLICIES. 4391 02:28:31,919 --> 02:28:32,720 SO THERE WERE UNIQUE 4392 02:28:32,720 --> 02:28:33,587 CONSIDERATIONS THAT WE HAD TO 4393 02:28:33,587 --> 02:28:35,623 MAKE OF HOW BEST TO MAKE CERTAIN 4394 02:28:35,623 --> 02:28:38,459 THAT CONFIDENTIALITY WAS 4395 02:28:38,459 --> 02:28:41,629 PRESERVED AND ALSO KEEP WITH THE 4396 02:28:41,629 --> 02:28:42,696 POLICIES OF THE CORRECTIONAL 4397 02:28:42,696 --> 02:28:42,930 SYSTEMS. 4398 02:28:42,930 --> 02:28:44,231 >> THANK YOU. 4399 02:28:44,231 --> 02:28:46,734 >> SO I CAN ALSO ADD A FEW 4400 02:28:46,734 --> 02:28:47,735 COMMENTS ABOUT THIS. 4401 02:28:47,735 --> 02:28:49,637 WE HAVE TO BE MINDFUL WITH THIS 4402 02:28:49,637 --> 02:28:50,838 E-CONSENTING THAT IT BECOMES 4403 02:28:50,838 --> 02:28:52,039 SOMETIMES VERY CONVENIENT FOR 4404 02:28:52,039 --> 02:28:53,741 THE PATIENTS AND THEY MAY SIGN A 4405 02:28:53,741 --> 02:28:56,377 CONSENT FORM WITHOUT HAVING A 4406 02:28:56,377 --> 02:28:57,478 GOOD UNDERSTANDING OF WHAT THEY 4407 02:28:57,478 --> 02:28:58,112 ARE CONSENTING TO. 4408 02:28:58,112 --> 02:29:00,381 SO WE HAVE TO MAKE SURE THAT THE 4409 02:29:00,381 --> 02:29:01,782 CONSENT PROCESS IS STILL IN 4410 02:29:01,782 --> 02:29:04,118 PLACE. 4411 02:29:04,118 --> 02:29:08,656 EITHER VIA ZOOM OR VIA PHONE 4412 02:29:08,656 --> 02:29:09,957 CALL DESCRIBING THE STUDY, EVEN 4413 02:29:09,957 --> 02:29:12,459 IF THEY JUST SIGN THE CONSENT 4414 02:29:12,459 --> 02:29:13,761 FORM AND SEND IT TO YOU, WE DO 4415 02:29:13,761 --> 02:29:15,196 NOT ACCEPT IT UNTIL WE ACTUALLY 4416 02:29:15,196 --> 02:29:17,131 HAVE THAT CONVERSATION TO MAKE 4417 02:29:17,131 --> 02:29:19,200 SURE WE GO OVER IMPORTANT 4418 02:29:19,200 --> 02:29:20,701 FACTORS IN THE CONSENT FORM, 4419 02:29:20,701 --> 02:29:21,769 ANSWER QUESTIONS IF THERE IS 4420 02:29:21,769 --> 02:29:23,537 ANY, SO AGAIN, HAVING THE 4421 02:29:23,537 --> 02:29:25,506 CONSENT PROCESS FOR THESE 4422 02:29:25,506 --> 02:29:27,575 E-CONSENTING IS VERY IMPORTANT. 4423 02:29:27,575 --> 02:29:30,411 THE LIMITATION THAT THESE 4424 02:29:30,411 --> 02:29:32,513 E-CONSENTING AS VAWL EU 4425 02:29:32,513 --> 02:29:36,417 ESPECIALLY IF IT'S H ECHO PROGR, 4426 02:29:36,417 --> 02:29:37,851 WE TRY TO RECRUIT FAMILY FROM 4427 02:29:37,851 --> 02:29:38,719 RURAL AREAS. 4428 02:29:38,719 --> 02:29:40,554 OF COURSE ACCESS TO TECHNOLOGY 4429 02:29:40,554 --> 02:29:44,792 IS ALWAYS CHALLENGING. 4430 02:29:44,792 --> 02:29:45,960 >> THANK YOU. 4431 02:29:45,960 --> 02:29:47,428 >> I CAN ADD A LITTLE BIT IN 4432 02:29:47,428 --> 02:29:49,697 TERMS OF JUST FOR OLDER ADULTS, 4433 02:29:49,697 --> 02:29:50,664 JUST LIKE WE'RE DISCUSSING, YOU 4434 02:29:50,664 --> 02:29:53,367 KNOW, I THINK IT IS A MIXED BAG. 4435 02:29:53,367 --> 02:29:55,736 I THINK ON ONE SIDE, FOR MANY 4436 02:29:55,736 --> 02:29:56,937 OLDER ADULTS WHO ARE FACING 4437 02:29:56,937 --> 02:29:58,372 TRANSPORTATION CHALLENGES, 4438 02:29:58,372 --> 02:29:59,573 MOBILITY LIMITATIONS, YOU KNOW, 4439 02:29:59,573 --> 02:30:02,476 BEING ABLE TO CONNECT AND 4440 02:30:02,476 --> 02:30:03,677 ELIMINATE ONE MORE VISIT OR 4441 02:30:03,677 --> 02:30:05,546 OUTING, I THINK CAN BE A VERY 4442 02:30:05,546 --> 02:30:06,814 POWERFUL TOOL IN TERMS OF 4443 02:30:06,814 --> 02:30:07,915 INCREASING ACCESSIBILITY. 4444 02:30:07,915 --> 02:30:09,550 YOU KNOW, IN TERMS OF FROM A 4445 02:30:09,550 --> 02:30:11,785 SENSORY PERSPECTIVE, YOU KNOW, 4446 02:30:11,785 --> 02:30:13,087 WHILE AUTOMATED CAPTIONING ON 4447 02:30:13,087 --> 02:30:14,955 ZOOM OR WHATNOT MAY NOT BE 4448 02:30:14,955 --> 02:30:17,391 PERFECT, BUT IT IS A SUPPORT AND 4449 02:30:17,391 --> 02:30:18,192 A SUPPLEMENT FOR INDIVIDUALS WHO 4450 02:30:18,192 --> 02:30:19,293 MAY BE STRUGGLING A LITTLE BIT 4451 02:30:19,293 --> 02:30:22,396 IN TERMS OF HEARING, SO TAKING 4452 02:30:22,396 --> 02:30:23,964 ADVANTAGE OF THAT AND HAVING 4453 02:30:23,964 --> 02:30:25,699 THEIR OWN ABILITY TO KIND OF 4454 02:30:25,699 --> 02:30:27,434 ADJUST THE AMPLIFICATION NEEDED. 4455 02:30:27,434 --> 02:30:29,470 I WILL ALSO SAY, THOUGH, YOU 4456 02:30:29,470 --> 02:30:31,772 KNOW, IN TERMS OF THINKING ABOUT 4457 02:30:31,772 --> 02:30:32,640 TECHNOLOGY, ACCESS THAT'S 4458 02:30:32,640 --> 02:30:36,143 REQUIRED FOR A LOT OF THIS, ON 4459 02:30:36,143 --> 02:30:40,281 ONE SIDE OLDER ADULTS FOR MANY 4460 02:30:40,281 --> 02:30:41,649 POPULATIONS, THERE ARE THE 4461 02:30:41,649 --> 02:30:43,617 DIGITAL DIVIDE IS VERY REAL IN 4462 02:30:43,617 --> 02:30:44,718 TERMS OF BEING ABLE TO REACH AND 4463 02:30:44,718 --> 02:30:47,021 HAVE THE ABILITY TO CONNECT WITH 4464 02:30:47,021 --> 02:30:48,389 STABLE INTERNET AND WHATNOT. 4465 02:30:48,389 --> 02:30:49,590 BUT ON THE OTHER SIDE ALSO KIND 4466 02:30:49,590 --> 02:30:52,559 OF CHECKING, KIND OF AGES 4467 02:30:52,559 --> 02:30:54,094 PERSPECTIVES ABOUT ASSUMPTIONS 4468 02:30:54,094 --> 02:30:54,695 ABOUT WHETHER OR NOT THE GROUP 4469 02:30:54,695 --> 02:30:55,663 THAT YOU WOULD LIKE TO BE 4470 02:30:55,663 --> 02:30:57,097 WORKING WITH, YOU KNOW, WHAT IS 4471 02:30:57,097 --> 02:30:59,833 THEIR LEVEL OF TECHNOLOGY USE 4472 02:30:59,833 --> 02:31:01,302 AND COMFORT AND NOT JUST 4473 02:31:01,302 --> 02:31:02,202 NECESSARILY ASSUMING BECAUSE 4474 02:31:02,202 --> 02:31:03,404 THEY'RE OLDER ADULTS THAT THEY 4475 02:31:03,404 --> 02:31:04,772 DON'T HAVE INTEREST OR ACCESS OR 4476 02:31:04,772 --> 02:31:06,307 THE SAVVINESS, YOU KNOW, TO 4477 02:31:06,307 --> 02:31:06,940 NAVIGATE ZOOM. 4478 02:31:06,940 --> 02:31:09,877 SO I THINK CIRCLING BACK TO 4479 02:31:09,877 --> 02:31:10,611 KNOWING WHO YOU'RE WORKING WITH, 4480 02:31:10,611 --> 02:31:12,279 BUT I THINK THOSE ARE SOME 4481 02:31:12,279 --> 02:31:13,247 CONSIDERATIONS WHEN IT COMES TO 4482 02:31:13,247 --> 02:31:15,182 OLDER ADULTS. 4483 02:31:15,182 --> 02:31:15,449 >> GREAT. 4484 02:31:15,449 --> 02:31:17,051 THANK YOU SO MUCH. 4485 02:31:17,051 --> 02:31:21,188 SO NOW I'M GOING TO ASK 4486 02:31:21,188 --> 02:31:22,289 DR. SERRANO TO BRING UP ANY 4487 02:31:22,289 --> 02:31:26,660 DISCUSSIONS FROM THE CHAT. 4488 02:31:26,660 --> 02:31:27,294 >> THANK YOU. 4489 02:31:27,294 --> 02:31:30,464 AND THERE WAS ONE ON THE TOPIC 4490 02:31:30,464 --> 02:31:31,332 OF CONSENT. 4491 02:31:31,332 --> 02:31:32,900 THERE IS A PARTICIPANT WHO SAID, 4492 02:31:32,900 --> 02:31:34,435 YOU KNOW, I VERY MUCH WANT TO 4493 02:31:34,435 --> 02:31:36,303 USE VIDEO CONSENT FOR A TRIAL I 4494 02:31:36,303 --> 02:31:39,640 HAVE FUNDED TO IMPROVE DISCHARGE 4495 02:31:39,640 --> 02:31:40,074 TEACHING. 4496 02:31:40,074 --> 02:31:43,143 HOW DO YOU GO ABOUT AND MAKE THE 4497 02:31:43,143 --> 02:31:43,577 VIDEOS? 4498 02:31:43,577 --> 02:31:44,878 BECAUSE THIS PERSON HAD 4499 02:31:44,878 --> 02:31:47,114 CONSIDERED JUST DOING A ZOOM 4500 02:31:47,114 --> 02:31:48,949 RECORDING, BUT WHEN SHE WAS 4501 02:31:48,949 --> 02:31:50,984 QUOTED FOR IT FROM A PRODUCTION 4502 02:31:50,984 --> 02:31:54,121 COMPANY, IT WOULD BE $15,000 FOR 4503 02:31:54,121 --> 02:31:56,490 FOUR LANGUAGES. 4504 02:31:56,490 --> 02:31:59,793 SO CAN SPEAKERS COMMENT ON THAT? 4505 02:31:59,793 --> 02:32:02,129 >> I THINK ZOOM HAS BEEN GREAT 4506 02:32:02,129 --> 02:32:02,396 FOR THIS. 4507 02:32:02,396 --> 02:32:04,098 I MEAN, EVERYONE IS SO USED TO 4508 02:32:04,098 --> 02:32:05,733 BEING ON CAMERA AND TALKING AND 4509 02:32:05,733 --> 02:32:07,534 RECORDING IS SO EASY THAT I 4510 02:32:07,534 --> 02:32:09,403 DON'T SEE WHY YOU HAVE TO PAY 4511 02:32:09,403 --> 02:32:09,803 ANYBODY. 4512 02:32:09,803 --> 02:32:10,971 IF YOU HAVE STAFF THAT ACTUALLY 4513 02:32:10,971 --> 02:32:13,374 SPEAKS THE LANGUAGE, JUST RECORD 4514 02:32:13,374 --> 02:32:13,807 THEM. 4515 02:32:13,807 --> 02:32:15,342 IF YOU DON'T, YOU KNOW, WORK 4516 02:32:15,342 --> 02:32:17,311 WITH SOME COMMUNITY PARTNERS 4517 02:32:17,311 --> 02:32:19,012 WHO'S WILLING TO DO THAT FOR A 4518 02:32:19,012 --> 02:32:19,413 LOT LESS. 4519 02:32:19,413 --> 02:32:23,851 THE MAIN THING WITH A THE VIDEO 4520 02:32:23,851 --> 02:32:25,519 THING, BESIDES THE TRANSLATION, 4521 02:32:25,519 --> 02:32:29,356 IS ABOUT SORT OF HOW TO MAKE IT 4522 02:32:29,356 --> 02:32:29,923 MORE ACCESSIBLE. 4523 02:32:29,923 --> 02:32:32,159 WHAT YOU DON'T WANT TO DO IS GET 4524 02:32:32,159 --> 02:32:32,926 ON VIDEO AND JUST READ THE WHOLE 4525 02:32:32,926 --> 02:32:33,827 THING. 4526 02:32:33,827 --> 02:32:36,230 IT'S BORING, IT'S HARD TO FOLLOW 4527 02:32:36,230 --> 02:32:37,431 AND SO ON AND SO FORTH. 4528 02:32:37,431 --> 02:32:40,868 BUT I THINK STRUCTURE, A 4529 02:32:40,868 --> 02:32:42,736 QUESTION AND ANSWER FORMAT. 4530 02:32:42,736 --> 02:32:44,805 I FORGOT TO MENTION THAT IN SOME 4531 02:32:44,805 --> 02:32:47,741 CULTURES, DECISION -MAKING ISN'T 4532 02:32:47,741 --> 02:32:48,142 INDIVIDUAL-BASED. 4533 02:32:48,142 --> 02:32:50,277 IT CAN BE GROUP BASED. 4534 02:32:50,277 --> 02:32:51,712 OFTENTIMES YOU GET A NO WHEN YOU 4535 02:32:51,712 --> 02:32:52,312 CONSENT BECAUSE YOU HAVE THE 4536 02:32:52,312 --> 02:32:53,614 WRONG PEOPLE IN THE ROOM OR YOU 4537 02:32:53,614 --> 02:32:54,281 DON'T HAVE ENOUGH PEOPLE IN THE 4538 02:32:54,281 --> 02:32:54,715 ROOM. 4539 02:32:54,715 --> 02:32:56,950 SO YOU CAN MODEL THAT IN YOUR 4540 02:32:56,950 --> 02:32:59,286 CONSENT VIDEOS BY HAVING SEVERAL 4541 02:32:59,286 --> 02:33:02,523 PEOPLE ASKING QUESTIONS OF 4542 02:33:02,523 --> 02:33:04,258 FAMILY MEMBER ALONG WITH THE 4543 02:33:04,258 --> 02:33:04,992 PARTICIPANT, SO THERE ARE WAYS 4544 02:33:04,992 --> 02:33:06,760 TO USE THIS IN A VERY 4545 02:33:06,760 --> 02:33:12,032 INEXPENSIVE WAY. 4546 02:33:12,032 --> 02:33:13,200 >> THANK YOU. 4547 02:33:13,200 --> 02:33:16,136 ANY OTHER THOUGHTS REGARDING 4548 02:33:16,136 --> 02:33:20,707 VIDEO CONSENTING? 4549 02:33:20,707 --> 02:33:22,242 IF NOT, WE CAN GO ON TO THE NEXT 4550 02:33:22,242 --> 02:33:23,610 QUESTION. 4551 02:33:23,610 --> 02:33:24,211 DR. SERRANO, WAS THERE ANOTHER 4552 02:33:24,211 --> 02:33:25,379 QUESTION IN THE CHAT? 4553 02:33:25,379 --> 02:33:28,449 >> YEAH, THIS ONE IS GOING BACK 4554 02:33:28,449 --> 02:33:30,851 TO VALIDATION TOOLS. 4555 02:33:30,851 --> 02:33:32,653 THIS PARTICIPANT SAYS ONE OF THE 4556 02:33:32,653 --> 02:33:34,521 ARGUMENTS I'VE SEEN FOR NOT 4557 02:33:34,521 --> 02:33:35,989 RECRUITING INDIVIDUALS WHO 4558 02:33:35,989 --> 02:33:37,691 READ/WRITE ENGLISH ARE 4559 02:33:37,691 --> 02:33:40,260 QUESTIONNAIRES AND ASSESSMENTS 4560 02:33:40,260 --> 02:33:41,028 TRANSLATIONS THAT ARE BEING USED 4561 02:33:41,028 --> 02:33:43,130 BY THE STUDY TEAM ARE NOT 4562 02:33:43,130 --> 02:33:44,631 AVAILABLE IN THE LANGUAGE THAT 4563 02:33:44,631 --> 02:33:47,100 IS COMMON IN THEIR AREA. 4564 02:33:47,100 --> 02:33:48,702 SO FOR EXAMPLE, ARABIC, CHINESE, 4565 02:33:48,702 --> 02:33:49,870 ET CETERA. 4566 02:33:49,870 --> 02:33:52,005 AS ALREADY MENTIONED, EVEN IF A 4567 02:33:52,005 --> 02:33:54,174 CERTIFIED TRANSLATOR IS USED, A 4568 02:33:54,174 --> 02:33:55,609 TRANSLATION OF 4569 02:33:55,609 --> 02:33:57,110 QUESTIONNAIRE /ASSESSMENT IS NOT 4570 02:33:57,110 --> 02:33:59,046 VALIDATED SCIENTIFICALLY. 4571 02:33:59,046 --> 02:34:01,114 AND MOST TRANSLATORS ARE NOT 4572 02:34:01,114 --> 02:34:02,549 SCIENTISTS OR HAVE A STRONG 4573 02:34:02,549 --> 02:34:03,917 SCIENTIFIC BACKGROUND. 4574 02:34:03,917 --> 02:34:05,352 SO HOW WOULD YOU ENCOURAGE STUDY 4575 02:34:05,352 --> 02:34:08,755 TEAMS TO ADAPT OR HAVE OTHER 4576 02:34:08,755 --> 02:34:10,157 OPTIONS FOR POTENTIAL 4577 02:34:10,157 --> 02:34:11,658 PARTICIPANTS WHO SPEAK ANOTHER 4578 02:34:11,658 --> 02:34:13,727 LANGUAGE TO PARTICIPATE IN THE 4579 02:34:13,727 --> 02:34:17,130 STUDY? 4580 02:34:17,130 --> 02:34:18,866 >> I CAN TAKE A FIRST CRACK AT 4581 02:34:18,866 --> 02:34:19,066 THAT. 4582 02:34:19,066 --> 02:34:21,301 SO THIS IS A REALLY IMPORTANT 4583 02:34:21,301 --> 02:34:23,437 POINT ACTUALLY, VALIDATION. 4584 02:34:23,437 --> 02:34:25,072 BUT I SOMETIMES THINK THAT A 4585 02:34:25,072 --> 02:34:26,206 LITTLE KNOWLEDGE IS A DANGEROUS 4586 02:34:26,206 --> 02:34:28,108 THING WITH VALIDATION TOOLS, 4587 02:34:28,108 --> 02:34:29,510 BECAUSE THEN YOU END UP 4588 02:34:29,510 --> 02:34:30,844 EXCLUDING PEOPLE, BECAUSE YOU'RE 4589 02:34:30,844 --> 02:34:34,281 SO WORRIED ABOUT INTERNAL 4590 02:34:34,281 --> 02:34:38,218 VALIDITY, YOU LOSE VALIDITY BY 4591 02:34:38,218 --> 02:34:38,619 EXCLUDING PEOPLE. 4592 02:34:38,619 --> 02:34:39,786 SO I WANT TO MAKE THAT A BIG 4593 02:34:39,786 --> 02:34:40,187 POINT. 4594 02:34:40,187 --> 02:34:41,255 LIKE ANYTHING ELSE IN RESEARCH, 4595 02:34:41,255 --> 02:34:42,222 YOU'RE MAKING DECISIONS. 4596 02:34:42,222 --> 02:34:44,424 YOU'RE MAKING RISK/BENEFIT 4597 02:34:44,424 --> 02:34:45,792 CHOICES, AND JUST MAKE SURE THAT 4598 02:34:45,792 --> 02:34:47,861 YOU UNDERSTAND WHAT RISK AND 4599 02:34:47,861 --> 02:34:48,962 BENEFIT CHOICES YOU'RE MAKING. 4600 02:34:48,962 --> 02:34:53,300 SECOND THING ABOUT TRANSLATION 4601 02:34:53,300 --> 02:34:54,735 COMPLETELY TRUE, EVEN A GOOD 4602 02:34:54,735 --> 02:34:56,270 TRANSLATOR DOING A SINGLE DIRECT 4603 02:34:56,270 --> 02:34:57,337 TRANSLATION MAY ACTUALLY GET TO 4604 02:34:57,337 --> 02:34:59,172 A DOCUMENT THAT IS NOT 4605 02:34:59,172 --> 02:35:00,707 CONCEPTUALLY VALID, RIGHT? 4606 02:35:00,707 --> 02:35:02,743 SO WE HAVE CLASSICALLY -- WE 4607 02:35:02,743 --> 02:35:03,410 TEACH THINGS LIKE IN THE OLD 4608 02:35:03,410 --> 02:35:05,812 DAYS, THEY SAY DO YOU FEEL BLUE, 4609 02:35:05,812 --> 02:35:08,315 BECAUSE THAT'S HOW ENGLISH 4610 02:35:08,315 --> 02:35:09,383 SPEAKERS COLLOQUIALLY REFER TO 4611 02:35:09,383 --> 02:35:10,717 BEING DEPRESSED, THEN YOU 4612 02:35:10,717 --> 02:35:12,786 TRANSLATE TO ANOTHER LANGUAGE, 4613 02:35:12,786 --> 02:35:14,888 YOU BACKTRANSLATE IT AND IT 4614 02:35:14,888 --> 02:35:15,489 BECOMES ARE YOU A COLOR OR 4615 02:35:15,489 --> 02:35:15,923 SOMETHING. 4616 02:35:15,923 --> 02:35:17,124 SO IT'S SORT OF VERY IMPORTANT 4617 02:35:17,124 --> 02:35:19,092 TO UNDERSTAND CONCEPTUAL 4618 02:35:19,092 --> 02:35:21,261 VALIDITY. 4619 02:35:21,261 --> 02:35:23,330 BUT WHAT YOU CAN'T DO IS DO THE 4620 02:35:23,330 --> 02:35:24,531 GOLD STANDARD, WHICH IS FORWARD 4621 02:35:24,531 --> 02:35:25,866 AND BACKWARD TRANSLATION, 4622 02:35:25,866 --> 02:35:27,267 BECAUSE IN A MULTILINGUAL WORLD, 4623 02:35:27,267 --> 02:35:28,902 IF YOU DO FORWARD AND BACKWARD 4624 02:35:28,902 --> 02:35:30,437 TRANSLATION, YOU GO CRAZY. 4625 02:35:30,437 --> 02:35:31,872 FIRST OF ALL, IT WOULD TAKE YOU 4626 02:35:31,872 --> 02:35:32,372 FOREVER. 4627 02:35:32,372 --> 02:35:35,976 HOW ARE YOU REQUESTING TO RECONE 4628 02:35:35,976 --> 02:35:39,112 FORWARD AND WHACK WARD BACKWARD 4629 02:35:39,112 --> 02:35:40,314 TRANSLATION, SO I WOULD 4630 02:35:40,314 --> 02:35:41,748 RECOMMEND FORWARD BACKWARD 4631 02:35:41,748 --> 02:35:44,084 TRANSLATION AND THEN COMMUNITY 4632 02:35:44,084 --> 02:35:44,318 REVIEW. 4633 02:35:44,318 --> 02:35:46,753 THAT'S HOW THE -- SURVEY DOES 4634 02:35:46,753 --> 02:35:48,188 IT, WHEN THEY HAVE SIX OR EIGHT 4635 02:35:48,188 --> 02:35:48,956 DIFFERENT LANGUAGES. 4636 02:35:48,956 --> 02:35:50,657 AND THEN, YOU KNOW, WHAT YOU CAN 4637 02:35:50,657 --> 02:35:53,527 SAY THEN IS, OH, MAYBE THE 4638 02:35:53,527 --> 02:35:54,928 INSTRUMENT HASN'T BEEN VALIDATED 4639 02:35:54,928 --> 02:35:56,863 IN HMONG OR CHINESE. 4640 02:35:56,863 --> 02:35:58,932 I'LL DO THE VALIDATION. 4641 02:35:58,932 --> 02:35:59,266 RIGHT? 4642 02:35:59,266 --> 02:36:01,468 BECAUSE I DON'T THINK AS A 4643 02:36:01,468 --> 02:36:02,869 SCIENTIST YOU SHOULD BE 4644 02:36:02,869 --> 02:36:03,370 RESTRICTED BY THE TOOL. 4645 02:36:03,370 --> 02:36:04,838 IF THE TOOL IS LIMITING YOU, YOU 4646 02:36:04,838 --> 02:36:07,240 SHOULD EXPAND THE TOOL. 4647 02:36:07,240 --> 02:36:11,378 NOT ACCEPT THAT AS A LIMITATION. 4648 02:36:11,378 --> 02:36:11,912 >> GREAT. 4649 02:36:11,912 --> 02:36:12,679 THANK YOU SO MUCH. 4650 02:36:12,679 --> 02:36:14,114 THIS HAS BEEN A REALLY 4651 02:36:14,114 --> 02:36:16,516 INFORMATIVE PANEL. 4652 02:36:16,516 --> 02:36:18,018 BECAUSE WE WANT TO MAKE SURE OUR 4653 02:36:18,018 --> 02:36:18,885 PARTICIPANTS ARE WELL INFORMED 4654 02:36:18,885 --> 02:36:20,420 AND AWARE OF WHAT THEY'RE 4655 02:36:20,420 --> 02:36:20,854 CONSENTING TO. 4656 02:36:20,854 --> 02:36:22,389 SO I WANT TO THANK THE PANELISTS 4657 02:36:22,389 --> 02:36:24,424 FOR YOUR VALUABLE INSIGHTS ON 4658 02:36:24,424 --> 02:36:25,626 SPECIAL CONSIDERATIONS FOR THE 4659 02:36:25,626 --> 02:36:26,393 CONSENT PROCESS. 4660 02:36:26,393 --> 02:36:30,397 AND I'D LIKE TO THANK ALSO 4661 02:36:30,397 --> 02:36:31,365 CO-MODERATOR DR. SERRANO, AND 4662 02:36:31,365 --> 02:36:33,133 THANK YOU TO AUDIENCE MEMBERS 4663 02:36:33,133 --> 02:36:36,403 FOR YOUR QUESTIONS AND 4664 02:36:36,403 --> 02:36:37,137 PARTICIPATION. 4665 02:36:37,137 --> 02:36:38,905 SO NOW WE WILL TAKE A BRIEF 4666 02:36:38,905 --> 02:36:39,206 BREAK. 4667 02:36:39,206 --> 02:36:49,683 THANK YOU SO MUCH, EVERYONE. 4668 02:37:09,202 --> 02:37:10,170 SO THERE'S ACTUALLY -- THERE 4669 02:37:10,170 --> 02:37:11,338 WILL NOT BE A BREAK, AND WE ARE 4670 02:37:11,338 --> 02:37:13,073 ABOUT TO START THE NEXT SESSION, 4671 02:37:13,073 --> 02:37:18,245 SO DR. MENDOZA. 4672 02:37:18,245 --> 02:37:20,047 THANK YOU SO MUCH. 4673 02:37:20,047 --> 02:37:23,750 CAN EVERYONE HEAR ME? 4674 02:37:23,750 --> 02:37:24,084 YES? 4675 02:37:24,084 --> 02:37:26,053 I'LL TAKE THAT AS A YES. 4676 02:37:26,053 --> 02:37:26,920 OKAY. 4677 02:37:26,920 --> 02:37:29,556 SO GOOD AFTERNOON, EVERYONE, AND 4678 02:37:29,556 --> 02:37:32,292 WELCOME TO PANEL DISCUSSION 3 ON 4679 02:37:32,292 --> 02:37:35,529 BEST PRACTICES FOR CONDUCTING 4680 02:37:35,529 --> 02:37:36,630 CLINICAL RESEARCH WITH 4681 02:37:36,630 --> 02:37:38,165 POPULATIONS REQUIRING SPECIAL 4682 02:37:38,165 --> 02:37:38,932 CONSIDERATIONS, SPECIAL 4683 02:37:38,932 --> 02:37:39,700 POPULATIONS. 4684 02:37:39,700 --> 02:37:45,038 SO OUR PANEL WILL GO TO ABOUT 4685 02:37:45,038 --> 02:37:45,472 2:25 TODAY. 4686 02:37:45,472 --> 02:37:47,207 I'M DR. MARTIN MENDOZA, DIRECTOR 4687 02:37:47,207 --> 02:37:48,475 OF HEALTH EQUITY FOR THE 4688 02:37:48,475 --> 02:37:49,142 ALL-OF-US RESEARCH PROGRAM HERE 4689 02:37:49,142 --> 02:37:50,343 AT NIH. 4690 02:37:50,343 --> 02:37:52,412 I'M ALSO PLEASED TO BE JOINED BY 4691 02:37:52,412 --> 02:37:54,915 MY CO-MODERATOR, DR. DEBBIE 4692 02:37:54,915 --> 02:38:03,523 VITALIS, WHO IS A POLICY FELLOW 4693 02:38:03,523 --> 02:38:04,725 AT THE NATIONAL HEART, LUNG AND 4694 02:38:04,725 --> 02:38:06,026 BLOOD INSTITUTE HERE AT NIH. 4695 02:38:06,026 --> 02:38:07,761 SO WE REALLY HAVE A FANTASTIC 4696 02:38:07,761 --> 02:38:11,798 SESSION FOCUSED ON SPECIAL 4697 02:38:11,798 --> 02:38:12,132 POPULATIONS. 4698 02:38:12,132 --> 02:38:13,767 THERE'S BEEN A REALLY LARGE 4699 02:38:13,767 --> 02:38:19,339 FOCUS ON FO THOSE WHO 4700 02:38:19,339 --> 02:38:20,340 SELF-IDENTIFY -- WHILE THIS IS 4701 02:38:20,340 --> 02:38:21,708 REALLY SUPER IMPORTANT FOR 4702 02:38:21,708 --> 02:38:23,176 OBVIOUS REASONS THERE ARE MANY 4703 02:38:23,176 --> 02:38:24,478 OTHER EQUALLY IMPORTANT 4704 02:38:24,478 --> 02:38:26,446 POPULATIONS THAT ALSO NEED TO BE 4705 02:38:26,446 --> 02:38:27,814 INCLUDED AND CONSIDERED IN ORDER 4706 02:38:27,814 --> 02:38:31,118 TO HAVE A TRULY DIVERSE 4707 02:38:31,118 --> 02:38:32,085 POPULATION WITHIN THE STUDY AND 4708 02:38:32,085 --> 02:38:34,020 ENSURE THAT ANY MEDICAL PRODUCTS 4709 02:38:34,020 --> 02:38:35,789 OR BREAKTHROUGHS THAT COME 4710 02:38:35,789 --> 02:38:37,090 FROM THAT RESEARCH WILL WORK AND 4711 02:38:37,090 --> 02:38:41,261 BE RELEVANT FOR EVERYONE. 4712 02:38:41,261 --> 02:38:42,562 SO WHAT WE'RE GOING TO DO NOW IS 4713 02:38:42,562 --> 02:38:46,733 I'M GOING TO BRIEFLY INTRODUCE 4714 02:38:46,733 --> 02:38:49,669 EACH PANELIST, AND FOR OUR 4715 02:38:49,669 --> 02:38:51,104 PANELISTS, AFTER I SAY YOUR NAME 4716 02:38:51,104 --> 02:38:55,575 AND AFFILIATION, PLEASE TAKE A 4717 02:38:55,575 --> 02:38:58,411 MINUTE TO SELF-INTRODUCE 4718 02:38:58,411 --> 02:38:58,678 YOURSELF. 4719 02:38:58,678 --> 02:39:01,014 AND THEN WE'LL GO FROM THERE. 4720 02:39:01,014 --> 02:39:04,084 SO FIRST PANELIST THAT I WANT TO 4721 02:39:04,084 --> 02:39:09,322 INTRODUCE IS DR. BILLY CACERES. 4722 02:39:09,322 --> 02:39:14,728 AND DR. CACERES IS FROM THE 4723 02:39:14,728 --> 02:39:16,096 COLUMBIA UNIVERSITY SCHOOL OF 4724 02:39:16,096 --> 02:39:16,863 NURSING. 4725 02:39:16,863 --> 02:39:18,398 CAN YOU PLEASE TAKE A MINUTE TO 4726 02:39:18,398 --> 02:39:20,000 TELL US A LITTLE BIT MORE ABOUT 4727 02:39:20,000 --> 02:39:21,668 YOURSELF, DR. CACERES? 4728 02:39:21,668 --> 02:39:22,736 >> SURE. 4729 02:39:22,736 --> 02:39:24,638 SO I'M ASSISTANT PROFESSOR AT 4730 02:39:24,638 --> 02:39:25,872 COLUMBIA UNIVERSITY SCHOOL OF 4731 02:39:25,872 --> 02:39:26,573 NURSING. 4732 02:39:26,573 --> 02:39:28,208 I'M A CLINICAL NURSE BY TRAINING 4733 02:39:28,208 --> 02:39:30,177 AND MY RESEARCH FOCUSES ON 4734 02:39:30,177 --> 02:39:32,445 CARDIOVASCULAR HEALTH. 4735 02:39:32,445 --> 02:39:34,514 AMONG SEXUAL AND GENDER MINORITY 4736 02:39:34,514 --> 02:39:37,918 POPULATIONS WITH FOCUS ON 4737 02:39:37,918 --> 02:39:39,085 INTERSECTIONAL APPROACHES TO 4738 02:39:39,085 --> 02:39:41,288 STUDY CARDIOVASCULAR HEALTH. 4739 02:39:41,288 --> 02:39:44,090 >> THANK YOU SO MUCH. 4740 02:39:44,090 --> 02:39:48,461 OUR NEXT PANELIST IS DR. SINDHU 4741 02:39:48,461 --> 02:39:53,633 SRINIVAS. 4742 02:39:53,633 --> 02:39:59,239 AND DR. SRINIVAS IS FROM THE 4743 02:39:59,239 --> 02:40:02,342 UNIVERSITY OF PENNSYLVANIA. 4744 02:40:02,342 --> 02:40:02,676 DR. SRINIVAS. 4745 02:40:02,676 --> 02:40:03,310 >> GOOD AFTERNOON. 4746 02:40:03,310 --> 02:40:04,845 THANK YOU SO MUCH. 4747 02:40:04,845 --> 02:40:06,046 MY NAME IS SINDHU SRINIVAS. 4748 02:40:06,046 --> 02:40:08,748 AND I'M A PROFESSOR OF 4749 02:40:08,748 --> 02:40:09,850 MATERNAL-FETAL MEDICINE AND VICE 4750 02:40:09,850 --> 02:40:11,284 CHAIR FOR QUALITY AND SAFETY IN 4751 02:40:11,284 --> 02:40:12,986 THE DEPARTMENT OF OB-GYN AT THE 4752 02:40:12,986 --> 02:40:14,020 UNIVERSITY OF PENNSYLVANIA. 4753 02:40:14,020 --> 02:40:15,488 AND I'M ALSO ON THE EXECUTIVE 4754 02:40:15,488 --> 02:40:18,058 COMMITTEE FOR THE SOCIETY FOR 4755 02:40:18,058 --> 02:40:18,725 MATERNAL FETAL MEDICINE. 4756 02:40:18,725 --> 02:40:20,994 I'M A PRACTICING MATERNAL-FETAL 4757 02:40:20,994 --> 02:40:22,195 MEDICINE SPECIALIST AND A HEALTH 4758 02:40:22,195 --> 02:40:23,496 SERVICES AND HEALTHCARE DELIVERY 4759 02:40:23,496 --> 02:40:26,700 AND EQUITY RESEARCHER, AND I'M 4760 02:40:26,700 --> 02:40:27,734 HERE, I'M REALLY EXCITED TO BE 4761 02:40:27,734 --> 02:40:28,735 ON THIS PANEL AND THANKS FOR 4762 02:40:28,735 --> 02:40:30,670 INCLUDING ME TO TALK ABOUT THE 4763 02:40:30,670 --> 02:40:31,538 INCLUSION OF PREGNANT AND 4764 02:40:31,538 --> 02:40:32,739 LACTATING PEOPLE IN CLINICAL 4765 02:40:32,739 --> 02:40:36,676 TRIALS, WHICH IS, I THINK, A 4766 02:40:36,676 --> 02:40:37,143 CRITICAL PUBLIC HEALTH 4767 02:40:37,143 --> 02:40:37,544 IMPORTANCE. 4768 02:40:37,544 --> 02:40:40,580 SO THANKS AGAIN FOR INCLUDING 4769 02:40:40,580 --> 02:40:40,747 ME. 4770 02:40:40,747 --> 02:40:42,782 >> THANK YOU SO MUCH. 4771 02:40:42,782 --> 02:40:46,519 NEXT, OUR NEXT PANELIST IS 4772 02:40:46,519 --> 02:40:50,757 DR. ANGEL MILES. 4773 02:40:50,757 --> 02:40:51,858 AND SHE IS FROM THE NATIONAL 4774 02:40:51,858 --> 02:40:53,226 INSTITUTE ON DISABILITY, 4775 02:40:53,226 --> 02:40:54,461 INDEPENDENT LIVING AND 4776 02:40:54,461 --> 02:40:55,896 REHABILITATION RESEARCH 4777 02:40:55,896 --> 02:40:56,463 ADMINISTRATION FOR COMMUNITY 4778 02:40:56,463 --> 02:40:57,030 LIVING. 4779 02:40:57,030 --> 02:40:59,132 DR. MILES. 4780 02:40:59,132 --> 02:41:00,533 >> GOOD AFTERNOON, EVERYONE. 4781 02:41:00,533 --> 02:41:04,571 AND THANK YOU FOR HAVING ME. 4782 02:41:04,571 --> 02:41:08,508 I'M A PROGRAM SPECIALIST AT 4783 02:41:08,508 --> 02:41:10,277 THE -- AT NIDILRR, AND I'M 4784 02:41:10,277 --> 02:41:11,912 REALLY HAPPY TO BE HERE. 4785 02:41:11,912 --> 02:41:13,747 NIDILRR'S MISSION IS TO GENERATE 4786 02:41:13,747 --> 02:41:15,515 NEW KNOWLEDGE AND TO IMPROVE ITS 4787 02:41:15,515 --> 02:41:16,816 EFFECTIVE USE TO IMPROVE THE 4788 02:41:16,816 --> 02:41:19,286 ABILITIES OF INDIVIDUALS WITH 4789 02:41:19,286 --> 02:41:20,487 DISABILITIES TO PERFORM 4790 02:41:20,487 --> 02:41:21,187 ACTIVITIES OF THEIR CHOICE IN 4791 02:41:21,187 --> 02:41:22,789 THE COMMUNITY, AND WE ARE THE 4792 02:41:22,789 --> 02:41:24,324 FEDERAL GOVERNMENT'S PRIMARY 4793 02:41:24,324 --> 02:41:24,891 DISABILITY RESEARCH 4794 02:41:24,891 --> 02:41:26,960 ORGANIZATION. 4795 02:41:26,960 --> 02:41:30,630 I SPECIALIZE IN INTERSECTIONAL 4796 02:41:30,630 --> 02:41:32,599 APPROACHES TO DISABILITY 4797 02:41:32,599 --> 02:41:34,334 RESEARCH, AND I HAVE A PH.D. IN 4798 02:41:34,334 --> 02:41:35,869 WOMEN'S STUDIES AND THANKS FOR 4799 02:41:35,869 --> 02:41:38,838 HAVING ME. 4800 02:41:38,838 --> 02:41:41,641 >> THANK YOU, DR. MILES. 4801 02:41:41,641 --> 02:41:47,747 OUR NEXT PANELIST IS DR. GLORIA 4802 02:41:47,747 --> 02:41:49,282 CORONADO, FROM THE KAISER 4803 02:41:49,282 --> 02:41:49,916 PERMANENTE CENTER FOR HEALTH 4804 02:41:49,916 --> 02:41:51,418 RESEARCH. 4805 02:41:51,418 --> 02:41:52,652 DR. CORONADO. 4806 02:41:52,652 --> 02:41:53,620 >> HI, EVERYONE. 4807 02:41:53,620 --> 02:41:57,490 MY NAME IS DR. GLORIA CORONADO, 4808 02:41:57,490 --> 02:41:59,960 EP DEEP YOM GIST AT KAISER 4809 02:41:59,960 --> 02:42:01,962 CENTER FOR HEALTH RESEARCH IN 4810 02:42:01,962 --> 02:42:03,163 PORTLAND, OREGON. 4811 02:42:03,163 --> 02:42:04,798 I TODAY AM KIND OF REPRESENTING 4812 02:42:04,798 --> 02:42:07,000 KIND OF RURAL POPULATIONS, AS 4813 02:42:07,000 --> 02:42:09,269 WELL AS KIND OF DIVERSE RURAL 4814 02:42:09,269 --> 02:42:10,036 POPULATIONS SO THE INTERSECTION 4815 02:42:10,036 --> 02:42:12,639 BETWEEN THE TWO. 4816 02:42:12,639 --> 02:42:13,473 THANK YOU. 4817 02:42:13,473 --> 02:42:17,544 >> THANK YOU, DR. CORONADO. 4818 02:42:17,544 --> 02:42:21,915 AND OUR NEXT PANELIST IS 4819 02:42:21,915 --> 02:42:26,119 DR. KALI ZHOU, WHO IS FROM THE 4820 02:42:26,119 --> 02:42:27,721 KECK SCHOOL OF MEDICINE AT THE 4821 02:42:27,721 --> 02:42:28,355 UNIVERSITY OF SOUTHERN 4822 02:42:28,355 --> 02:42:30,557 CALIFORNIA. 4823 02:42:30,557 --> 02:42:31,725 >> HI, EVERYONE. 4824 02:42:31,725 --> 02:42:33,059 IT'S REALLY A PLEASURE TO BE 4825 02:42:33,059 --> 02:42:33,460 HERE. 4826 02:42:33,460 --> 02:42:35,228 MY NAME IS KALI ZHOU. 4827 02:42:35,228 --> 02:42:37,197 I AM A TRANSPLANT HEPATOLOGIST 4828 02:42:37,197 --> 02:42:41,968 BY TRAINING, AND I AM ON THE 4829 02:42:41,968 --> 02:42:44,604 P.I. -- WE FOCUS ON FIGURING OUT 4830 02:42:44,604 --> 02:42:46,573 WHY THERE'S A SIGNIFICANT 4831 02:42:46,573 --> 02:42:48,541 GEOGRAPHIC AGGREGATION OF LATE 4832 02:42:48,541 --> 02:42:50,043 STAGE LIVER CANCER IN THE LOWEST 4833 02:42:50,043 --> 02:42:52,145 INCOME NEIGHBORHOODS HERE IN 4834 02:42:52,145 --> 02:42:52,746 LOS ANGELES. 4835 02:42:52,746 --> 02:42:53,680 TO DEVELOP METHODS TO 4836 02:42:53,680 --> 02:42:55,715 EFFECTIVELY AND EFFICIENTLY 4837 02:42:55,715 --> 02:42:57,050 COMBAT THE SOCIOECONOMIC 4838 02:42:57,050 --> 02:43:00,887 DISPARITIES, I'LL BE FOCUSING ON 4839 02:43:00,887 --> 02:43:01,788 THE SOCIOECONOMICALLY 4840 02:43:01,788 --> 02:43:04,491 DISADVANTAGED POPULATION. 4841 02:43:04,491 --> 02:43:06,126 THIS HAS BEEN INCREDIBLY EYE 4842 02:43:06,126 --> 02:43:07,327 OPENING AND I DEFINITELY PLAN ON 4843 02:43:07,327 --> 02:43:08,094 TAKING WHAT I'VE LEARNED FROM 4844 02:43:08,094 --> 02:43:09,295 ALL OF THE SPEAKERS BACK TO MY 4845 02:43:09,295 --> 02:43:09,696 WORK. 4846 02:43:09,696 --> 02:43:10,730 THANKS. 4847 02:43:10,730 --> 02:43:14,100 >> THANK YOU SO MUCH, DR. ZHOU. 4848 02:43:14,100 --> 02:43:15,935 SO BEFORE WE GET STARTED, JUST A 4849 02:43:15,935 --> 02:43:18,872 FEW HOUSEKEEPING ITEMS. 4850 02:43:18,872 --> 02:43:21,408 SO I WILL START OUT THIS PANEL 4851 02:43:21,408 --> 02:43:22,909 BY ASKING SOME OF MY OWN 4852 02:43:22,909 --> 02:43:24,244 QUESTIONS, AND THEN WE'LL OPEN 4853 02:43:24,244 --> 02:43:26,646 THE FLOOR TO AUDIENCE QUESTIONS. 4854 02:43:26,646 --> 02:43:28,081 SO IF YOU'RE A MEMBER OF THE 4855 02:43:28,081 --> 02:43:28,815 AUDIENCE TO ASK A QUESTION YOU 4856 02:43:28,815 --> 02:43:31,017 HAVE A COUPLE OF OPTIONS. 4857 02:43:31,017 --> 02:43:34,054 IF YOU'RE ON THE ZOOM, THEN YOU 4858 02:43:34,054 --> 02:43:36,056 CAN JUST USE THE -- PLEASE USE 4859 02:43:36,056 --> 02:43:37,891 THE RAISE YOUR HAND FEATURE. 4860 02:43:37,891 --> 02:43:40,493 YOU HAVE ANOTHER OPTION TO EMAIL 4861 02:43:40,493 --> 02:43:49,335 YOUR QUESTIONS TO INCLUSIVE 4862 02:43:49,335 --> 02:43:50,103 CLINRES -- WE'LL PUT THAT IN THE 4863 02:43:50,103 --> 02:43:52,072 CHAT FOR YOU. 4864 02:43:52,072 --> 02:43:56,976 BUT YOU CAN SEND THAT TO THAT 4865 02:43:56,976 --> 02:43:59,913 EMAIL. 4866 02:43:59,913 --> 02:44:02,015 OR IF YOU ARE WATCHING ON THE 4867 02:44:02,015 --> 02:44:06,419 VIDEOCAST, YOU CAN USE THE LIVE 4868 02:44:06,419 --> 02:44:08,388 FEEDBACK OPTION. 4869 02:44:08,388 --> 02:44:09,322 ONE REQUEST IF YOU ARE CALLED ON 4870 02:44:09,322 --> 02:44:10,723 TO ASK A QUESTION, PLEASE GO ON 4871 02:44:10,723 --> 02:44:13,426 VIDEO AND INTRODUCE YOURSELF 4872 02:44:13,426 --> 02:44:15,128 PRIOR TO ASKING YOUR ACTUAL 4873 02:44:15,128 --> 02:44:16,763 QUESTION. 4874 02:44:16,763 --> 02:44:17,564 OKAY. 4875 02:44:17,564 --> 02:44:19,632 SO WITH THOSE HOUSEKEEPING ITEMS 4876 02:44:19,632 --> 02:44:22,869 OUT OF THE WAY, LET'S GO AHEAD 4877 02:44:22,869 --> 02:44:25,271 AND GET STARTED WITH OUR FIRST 4878 02:44:25,271 --> 02:44:26,272 QUESTION HERE. 4879 02:44:26,272 --> 02:44:30,110 SO OUR FIRST QUESTION IS FOR 4880 02:44:30,110 --> 02:44:32,946 EVERYBODY. 4881 02:44:32,946 --> 02:44:34,247 SO IT IS -- FOR EACH OF THE 4882 02:44:34,247 --> 02:44:38,718 SPECIAL POPULATIONS THAT YOU ARE 4883 02:44:38,718 --> 02:44:41,788 REPRESENTING, CAN YOU TELL US A 4884 02:44:41,788 --> 02:44:44,691 BIT ABOUT SOME OF THE -- WHAT 4885 02:44:44,691 --> 02:44:46,826 ARE SOME OF THE BENEFITS, EITHER 4886 02:44:46,826 --> 02:44:49,963 FOR SCIENCE AND/OR SOCIETY, 4887 02:44:49,963 --> 02:44:52,599 INCLUDING THAT POPULATION IN 4888 02:44:52,599 --> 02:44:58,104 CLINICAL RESEARCH? 4889 02:44:58,104 --> 02:44:59,873 AND DR. ZHOU, LET'S START WITH 4890 02:44:59,873 --> 02:45:02,175 YOU, IF YOU DON'T MIND. 4891 02:45:02,175 --> 02:45:03,476 >> SURE. 4892 02:45:03,476 --> 02:45:06,279 SO OBVIOUSLY THE SOCIAL 4893 02:45:06,279 --> 02:45:07,046 ECONOMICALLY DISADVANTAGED GROUP 4894 02:45:07,046 --> 02:45:08,381 IS VERY UNDERREPRESENTED AND I 4895 02:45:08,381 --> 02:45:10,016 THINK ONE OF THE ISSUES IS THAT 4896 02:45:10,016 --> 02:45:13,386 IT'S VERY DIFFICULT CONCEPT TO 4897 02:45:13,386 --> 02:45:15,255 UNIFORMLY COLLECT ACROSS STUDIES 4898 02:45:15,255 --> 02:45:17,924 SO UNDERSTANDING THE EXTENT OF 4899 02:45:17,924 --> 02:45:19,292 HOW MUCH IS UNDERREPRESENTED IS 4900 02:45:19,292 --> 02:45:20,627 STILL PRETTY UNCLEAR, BUT WE DO 4901 02:45:20,627 --> 02:45:22,128 KNOW THAT THERE'S A SIGNIFICANT 4902 02:45:22,128 --> 02:45:24,831 HIGHER BURDEN OF DISEASE ACROSS 4903 02:45:24,831 --> 02:45:28,334 NEARLY ALL CONDITIONS AMONG THE 4904 02:45:28,334 --> 02:45:30,870 SOCIOECONOMICALLY DISADVANTAGED. 4905 02:45:30,870 --> 02:45:32,705 AND WHILE IT'S DIFFICULT TO 4906 02:45:32,705 --> 02:45:34,140 MEASURE, I THINK THIS IS AN 4907 02:45:34,140 --> 02:45:35,341 EXTREMELY IMPORTANT GROUP TO 4908 02:45:35,341 --> 02:45:37,744 INCLUDE BECAUSE OF THAT HIGH 4909 02:45:37,744 --> 02:45:38,711 BURDEN OF DISEASE AND NOT 4910 02:45:38,711 --> 02:45:40,046 INCLUDING THEM IN CLINICAL 4911 02:45:40,046 --> 02:45:40,647 RESEARCH WOULD REALLY PREVENT 4912 02:45:40,647 --> 02:45:43,349 THEM AS WE SAID ACROSS THESE 4913 02:45:43,349 --> 02:45:44,751 PANELS FROM ACCRUING THE 4914 02:45:44,751 --> 02:45:45,552 POTENTIAL HEALTH BENEFITS OF 4915 02:45:45,552 --> 02:45:46,386 THESE STUDIES. 4916 02:45:46,386 --> 02:45:48,354 ALSO I THINK IT'S IMPORTANT TO 4917 02:45:48,354 --> 02:45:49,556 HIGHLIGHT THIS GROUP BECAUSE OF 4918 02:45:49,556 --> 02:45:53,593 THAT INTERSECTIONALITY THAT 4919 02:45:53,593 --> 02:45:54,227 SOCIOECONOMICALLY 4920 02:45:54,227 --> 02:45:55,461 DISADVANTAGED -- WE TALK ABOUT 4921 02:45:55,461 --> 02:45:57,096 RACIAL AND ETHNIC DISPARITIES 4922 02:45:57,096 --> 02:45:58,831 BUT POVERTY IS SUCH A VITAL 4923 02:45:58,831 --> 02:46:00,033 COMMON FACTOR TO WHY THESE 4924 02:46:00,033 --> 02:46:01,901 GROUPS EXPERIENCE DISPARITIES. 4925 02:46:01,901 --> 02:46:04,971 AND WE KNOW IN RESEARCH AND WE 4926 02:46:04,971 --> 02:46:05,972 APPRECIATE THAT OFTEN RACIAL 4927 02:46:05,972 --> 02:46:08,041 DIFFERENCES, FOR EXAMPLE, ARE 4928 02:46:08,041 --> 02:46:09,442 ATTENUATED OR EVEN AMELIORATED 4929 02:46:09,442 --> 02:46:10,810 WHEN YOU ADJUST FOR 4930 02:46:10,810 --> 02:46:12,278 SOCIOECONOMIC STATUS. 4931 02:46:12,278 --> 02:46:16,015 SO WE SEE -- WELL, NOT 4932 02:46:16,015 --> 02:46:17,884 COLLECTING DATA ON 4933 02:46:17,884 --> 02:46:18,851 SOCIOECONOMICALLY DISADVANTAGED 4934 02:46:18,851 --> 02:46:20,920 WOULD BE POTENTIALLY MISSING OUT 4935 02:46:20,920 --> 02:46:22,121 ON UNDERSTATING THAT 4936 02:46:22,121 --> 02:46:22,555 RELATIONSHIP. 4937 02:46:22,555 --> 02:46:27,060 AND THEN ALSO POTENTIALLY SUCH 4938 02:46:27,060 --> 02:46:32,832 AS WHITE PERSONS LIVING IN 4939 02:46:32,832 --> 02:46:33,066 POVERTY. 4940 02:46:33,066 --> 02:46:38,738 >> REALLY GREAT POINTS. 4941 02:46:38,738 --> 02:46:39,939 DR. CACERES, CAN WE GET YOUR 4942 02:46:39,939 --> 02:46:41,274 PERSPECTIVE HERE. 4943 02:46:41,274 --> 02:46:44,677 >> SO I AGREE WITH WHAT DR. ZHOU 4944 02:46:44,677 --> 02:46:44,978 SAID. 4945 02:46:44,978 --> 02:46:46,613 I THINK ACROSS ANY POPULATION 4946 02:46:46,613 --> 02:46:47,714 THAT'S BEEN DISCUSSED TODAY, I 4947 02:46:47,714 --> 02:46:49,015 THINK SOCIOECONOMIC DISPARITY 4948 02:46:49,015 --> 02:46:50,350 CERTAINLY IS I THINK A DRIVING 4949 02:46:50,350 --> 02:46:53,419 FACTOR WHY WE SEE DISPARITIES IN 4950 02:46:53,419 --> 02:46:54,854 THE SEXUAL AND GENDER MINORITY 4951 02:46:54,854 --> 02:46:56,422 COMMUNITY, WE SEE THAT BISEXUAL 4952 02:46:56,422 --> 02:46:58,491 AND TRANSGENDER INDIVIDUALS TEND 4953 02:46:58,491 --> 02:46:59,125 TO HAVE WORSE HEALTH DISPARITIES 4954 02:46:59,125 --> 02:47:00,593 AND THAT'S IN MANY WAYS 4955 02:47:00,593 --> 02:47:02,662 ATTRIBUTED TO THEIR HIGH RATES 4956 02:47:02,662 --> 02:47:03,963 OF POVERTY. 4957 02:47:03,963 --> 02:47:05,598 BUT I THINK WHY IT'S IMPORTANT 4958 02:47:05,598 --> 02:47:09,135 TO INCLUDE SEX AND GENDER 4959 02:47:09,135 --> 02:47:10,970 MINORITY INDIVIDUALS IN ROW 4960 02:47:10,970 --> 02:47:12,238 SEARCH, I MADE THIS POINT A FEW 4961 02:47:12,238 --> 02:47:13,806 YEARS AGO, IF WE DESIGN AN 4962 02:47:13,806 --> 02:47:14,907 INTERVENTION FOR BLACK WOMEN TO 4963 02:47:14,907 --> 02:47:16,609 REDUCE THEIR CARDIOVASCULAR RISK 4964 02:47:16,609 --> 02:47:17,610 BUT WE DON'T ACTUALLY TAKE INTO 4965 02:47:17,610 --> 02:47:18,811 ACCOUNT THEIR SEXUAL ORIENTATION 4966 02:47:18,811 --> 02:47:22,115 OR THEIR GENER GENDER IDENTITY H 4967 02:47:22,115 --> 02:47:24,284 HAVE BEEN KNOWN TO INFLUENCE 4968 02:47:24,284 --> 02:47:25,585 CARDIOVASCULAR RISK IN DIFFERENT 4969 02:47:25,585 --> 02:47:27,453 POPULATIONS THEN ARE WE TRULY 4970 02:47:27,453 --> 02:47:28,554 DESIGNING BEHAVIORAL 4971 02:47:28,554 --> 02:47:29,155 INTERVENTIONS TAILORED TO THE 4972 02:47:29,155 --> 02:47:29,956 NEEDS OF THESE COMMUNITIES? 4973 02:47:29,956 --> 02:47:31,557 SO IF WE DON'T TAKE AN 4974 02:47:31,557 --> 02:47:32,325 INTERSECTIONAL APPROACH TO 4975 02:47:32,325 --> 02:47:33,760 THINKING ABOUT WHO WITHIN A 4976 02:47:33,760 --> 02:47:34,761 POPULATION IS AT GREATEST RISK 4977 02:47:34,761 --> 02:47:36,362 FOR SOMETHING AND HOW CAN WE 4978 02:47:36,362 --> 02:47:37,130 TAILOR INTERVENTIONS TO MAXIMIZE 4979 02:47:37,130 --> 02:47:39,999 THE BENEFITS OF INTERVENTIONS OR 4980 02:47:39,999 --> 02:47:41,934 ANY RESEARCH OBSERVATIONAL STUDY 4981 02:47:41,934 --> 02:47:43,670 FOR DIFFERENT GROUPS THEN WE'RE 4982 02:47:43,670 --> 02:47:44,604 SORT OF MISSING A BIG PIECE OF 4983 02:47:44,604 --> 02:47:45,538 THE EQUATION. 4984 02:47:45,538 --> 02:47:47,740 I THINK THAT BEYOND THE SPECIFIC 4985 02:47:47,740 --> 02:47:49,942 NEEDS OR CONCERNS OF SEXUAL AND 4986 02:47:49,942 --> 02:47:51,144 GENDER MINORITY COMMUNITIES, 4987 02:47:51,144 --> 02:47:52,912 THINK IF WE DON'T ASK, IF WE 4988 02:47:52,912 --> 02:47:54,180 DON'T INCLUDE THESE INDIVIDUALS 4989 02:47:54,180 --> 02:47:55,815 IN CLINICAL RESEARCH, THEN WE'RE 4990 02:47:55,815 --> 02:47:57,050 MISSING SORT OF A BIG PIECE OF 4991 02:47:57,050 --> 02:47:59,719 THE PUZZLE IN TRYING TO IMPROVE 4992 02:47:59,719 --> 02:48:01,521 POPULATION AND HEALTH OUTCOMES 4993 02:48:01,521 --> 02:48:02,622 IN GENERAL. 4994 02:48:02,622 --> 02:48:04,457 >> YES, I COMPLETELY AGREE WITH 4995 02:48:04,457 --> 02:48:06,993 YOUR STATEMENTS. 4996 02:48:06,993 --> 02:48:12,231 YOU KNOW, DR. MILES, ABOUT A 4997 02:48:12,231 --> 02:48:16,502 QUARTER OF THE U.S. POPULATION 4998 02:48:16,502 --> 02:48:20,840 IDENTIFIES WITH A DISABILITY. 4999 02:48:20,840 --> 02:48:24,243 I'M CURIOUS, OBVIOUSLY A VERY 5000 02:48:24,243 --> 02:48:26,112 IMPORTANT ASPECT. 5001 02:48:26,112 --> 02:48:27,747 SO AGAIN, WHAT ARE SOME BENTS 5002 02:48:27,747 --> 02:48:32,452 BEN FIBENEFITSTO INCLUDING THOST 5003 02:48:32,452 --> 02:48:33,119 SELF-IDENTIFY WITH A DISABILITY, 5004 02:48:33,119 --> 02:48:36,689 THAT POPULATION, IN CLINICAL 5005 02:48:36,689 --> 02:48:36,956 RESEARCH? 5006 02:48:36,956 --> 02:48:38,091 >> CAN YOU HEAR ME OKAY? 5007 02:48:38,091 --> 02:48:38,958 >> YES. 5008 02:48:38,958 --> 02:48:40,626 >> OKAY. 5009 02:48:40,626 --> 02:48:41,160 SORRY. 5010 02:48:41,160 --> 02:48:44,697 SO YES, PEOPLE WITH DISABILITIES 5011 02:48:44,697 --> 02:48:49,469 ARE A SIGNIFICANT PART OF THE 5012 02:48:49,469 --> 02:48:50,236 POPULATION, ABOUT 1 IN 5013 02:48:50,236 --> 02:48:51,237 4 AMERICANS HAVE A DISABILITY. 5014 02:48:51,237 --> 02:48:54,607 AND SO IF WE WANT TO CREATE 5015 02:48:54,607 --> 02:48:55,808 RELEVANT CLINICAL RESEARCH, YOU 5016 02:48:55,808 --> 02:48:57,677 KNOW, IT'S IMPERATIVE THAT YOU 5017 02:48:57,677 --> 02:49:01,381 INCLUDE THAT POPULATION. 5018 02:49:01,381 --> 02:49:03,349 ELSE THERE MAY BE CONTRIBUTORS 5019 02:49:03,349 --> 02:49:05,118 TO OUTCOMES THAT ARE BEING 5020 02:49:05,118 --> 02:49:06,419 UNACCOUNTED FOR, BECAUSE YOU 5021 02:49:06,419 --> 02:49:07,820 HAVEN'T CONSIDERED THE 5022 02:49:07,820 --> 02:49:11,224 IMPLICATION OF DISABILITY AND 5023 02:49:11,224 --> 02:49:12,425 DISABLED PEOPLE ARE ONE OF THE 5024 02:49:12,425 --> 02:49:13,426 LARGEST MINORITY GROUPS IN THE 5025 02:49:13,426 --> 02:49:15,862 COUNTRY. 5026 02:49:15,862 --> 02:49:17,463 HISTORICALLY, PEOPLE WITH 5027 02:49:17,463 --> 02:49:19,265 DISABILITIES HAVE BEEN PRIMARILY 5028 02:49:19,265 --> 02:49:20,733 THOUGHT OF IN SCIENCE AND 5029 02:49:20,733 --> 02:49:21,734 MEDICINE AS SOLELY RECEIVERS OF 5030 02:49:21,734 --> 02:49:24,570 CARE AND SERVICES, SOCIAL AND 5031 02:49:24,570 --> 02:49:26,239 ECONOMIC DEPENDENCE IN SOCIETY 5032 02:49:26,239 --> 02:49:28,941 THAT CAN ONLY BE OBJECTS OF 5033 02:49:28,941 --> 02:49:31,144 STUDY OR LIABILITIES TO THE 5034 02:49:31,144 --> 02:49:33,846 RESEARCH ENTERPRISE. 5035 02:49:33,846 --> 02:49:37,116 AND THAT PERSPECTIVE IS STARTING 5036 02:49:37,116 --> 02:49:39,085 TO CHANGE, THANKS TO MOVEMENTS 5037 02:49:39,085 --> 02:49:40,086 LIKE DISABILITY RIGHTS MOVEMENT 5038 02:49:40,086 --> 02:49:45,324 AND WHICH LED TO THE PASSAGE OF 5039 02:49:45,324 --> 02:49:48,060 LEGISLATION LIKE THE 1973 5040 02:49:48,060 --> 02:49:48,861 VOCATIONAL REHABILITATION ACT, 5041 02:49:48,861 --> 02:49:50,563 WHICH LED TO THE ESTABLISHMENT 5042 02:49:50,563 --> 02:49:51,864 OF THE NATIONAL INSTITUTE ON 5043 02:49:51,864 --> 02:49:55,802 DISABILITY AND INDEPENDENT 5044 02:49:55,802 --> 02:49:56,702 LIVING, REHABL RESEARCH, WHERE I 5045 02:49:56,702 --> 02:50:01,607 WORK RIGHT NOW, SO IT'S REALLY 5046 02:50:01,607 --> 02:50:02,608 IMPERATIVE THAT WE INCLUDE 5047 02:50:02,608 --> 02:50:03,543 PEOPLE WITH DISABILITIES. 5048 02:50:03,543 --> 02:50:08,548 THE BENEFITS ARE MANY, INCLUDING 5049 02:50:08,548 --> 02:50:10,817 THE FACT THAT MANY OF THE 5050 02:50:10,817 --> 02:50:13,953 RESOURCES THAT WE USE EVERY DAY 5051 02:50:13,953 --> 02:50:15,388 ORIGINALLY HAD PEOPLE WITH 5052 02:50:15,388 --> 02:50:18,324 DISABILITIES IN MIND, SUCH AS 5053 02:50:18,324 --> 02:50:19,759 CURB CUTS AND THINGS LIKE THAT, 5054 02:50:19,759 --> 02:50:24,797 SO LOTS OF RESOURCES THAT WE USE 5055 02:50:24,797 --> 02:50:26,699 THAT WERE THOUGHT OF AS ONLY 5056 02:50:26,699 --> 02:50:28,868 BENEFITING DISABLED PEOPLE 5057 02:50:28,868 --> 02:50:30,303 ULTIMATELY BENEFIT ALL OF US IF 5058 02:50:30,303 --> 02:50:32,505 WE LIVE LONG ENOUGH, WE'RE ALL 5059 02:50:32,505 --> 02:50:34,740 GOING TO BECOME DISABLED OR AT 5060 02:50:34,740 --> 02:50:36,642 LEAST KNOW SOMEBODY WHO WILL, SO 5061 02:50:36,642 --> 02:50:38,945 IT'S IMPORTANT TO CONSIDER THAT 5062 02:50:38,945 --> 02:50:42,348 ASPECT OF OUR COUNTRY, ELSE WE 5063 02:50:42,348 --> 02:50:45,518 CAN'T PRODUCE RESEARCH THAT'S 5064 02:50:45,518 --> 02:50:45,852 GENERALIZABLE. 5065 02:50:45,852 --> 02:50:51,991 >> THANK YOU, DR. MILES. 5066 02:50:51,991 --> 02:50:53,626 DR. SRINIVAS, PREGNANT AND 5067 02:50:53,626 --> 02:50:57,029 LACTATING PERSONS ARE OFTEN NOT 5068 02:50:57,029 --> 02:50:58,764 THOUGHT ABOUT, YOU KNOW, 5069 02:50:58,764 --> 02:51:00,533 INCLUDING THIS POPULATION, THIS 5070 02:51:00,533 --> 02:51:01,734 VERY IMPORTANT POPULATION IN 5071 02:51:01,734 --> 02:51:03,469 CLINICAL RESEARCH, AND SO I WAS 5072 02:51:03,469 --> 02:51:05,538 WONDERING, CAN YOU TELL US A BIT 5073 02:51:05,538 --> 02:51:07,974 MORE ABOUT WHY IT'S SO IMPORTANT 5074 02:51:07,974 --> 02:51:10,176 TO CONSIDER THIS POPULATION IN 5075 02:51:10,176 --> 02:51:12,712 CLINICAL STUDIES? 5076 02:51:12,712 --> 02:51:13,446 >> ABSOLUTELY. 5077 02:51:13,446 --> 02:51:14,547 THANK YOU. 5078 02:51:14,547 --> 02:51:17,850 SO I THINK, YOU KNOW, FIRST OF 5079 02:51:17,850 --> 02:51:20,119 ALL, EACH YEAR MORE THAN 3 1/2 5080 02:51:20,119 --> 02:51:21,220 MILLION INDIVIDUALS GIVE BIRTH, 5081 02:51:21,220 --> 02:51:23,756 AND WE KNOW THAT MORE THAN 80% 5082 02:51:23,756 --> 02:51:25,391 OF THOSE PEOPLE WILL TRY TO 5083 02:51:25,391 --> 02:51:26,926 BREASTFEED AND ABOUT 55% OF 5084 02:51:26,926 --> 02:51:29,762 THOSE INFANTS WILL BE BREASTFED 5085 02:51:29,762 --> 02:51:31,197 AT SIX MONTHS, AND ADDITIONALLY, 5086 02:51:31,197 --> 02:51:33,799 DATA SUGGESTS THAT 70 TO 90% OF 5087 02:51:33,799 --> 02:51:35,334 PREGNANT WOMEN TAKE AT LEAST ONE 5088 02:51:35,334 --> 02:51:37,737 MEDICATION DURING PREGNANCY, AND 5089 02:51:37,737 --> 02:51:39,505 PREGNANT AND LACTATING WOMEN, AS 5090 02:51:39,505 --> 02:51:41,974 YOU JUST -- PEOPLE AS YOU JUST 5091 02:51:41,974 --> 02:51:43,342 DESCRIBED HAVE HISTORICALLY BEEN 5092 02:51:43,342 --> 02:51:45,645 EXCLUDED FROM CLINICAL TRIALS, 5093 02:51:45,645 --> 02:51:47,413 WHICH HAS REALLY BEEN AN 5094 02:51:47,413 --> 02:51:48,047 INCREDIBLE DISSERVICE TO THEM 5095 02:51:48,047 --> 02:51:49,882 AND TO ALL OF US AS PHYSICIANS 5096 02:51:49,882 --> 02:51:52,218 THAT TAKE CARE OF PREGNANT 5097 02:51:52,218 --> 02:51:54,186 PEOPLE, IN TRYING TO PROVIDE THE 5098 02:51:54,186 --> 02:51:55,588 OPTIMAL CARE TO BOTH PREGNANT 5099 02:51:55,588 --> 02:51:57,790 AND LACTATING INDIVIDUALS. 5100 02:51:57,790 --> 02:51:59,659 AND BECAUSE OF THIS EXCLUSION, 5101 02:51:59,659 --> 02:52:00,326 YOU KNOW, THERE HASN'T -- 5102 02:52:00,326 --> 02:52:01,527 THERE'S NOT REALLY ENOUGH KNOWN 5103 02:52:01,527 --> 02:52:03,262 ABOUT THE SAFETY AND EFFICACY OF 5104 02:52:03,262 --> 02:52:04,931 MEDICATIONS USED IN PREGNANCY OR 5105 02:52:04,931 --> 02:52:07,433 EVEN OPTIMAL TREATMENTS OR 5106 02:52:07,433 --> 02:52:08,534 OPTIMAL INTERVENTIONS DURING 5107 02:52:08,534 --> 02:52:11,270 PREGNANCY OR WHILE LACTATING, 5108 02:52:11,270 --> 02:52:12,271 AND THIS LEAVES US WITH SORT OF 5109 02:52:12,271 --> 02:52:13,673 LITTLE TO NO INFORMATION. 5110 02:52:13,673 --> 02:52:15,308 I THINK WE SAW THAT SORT OF 5111 02:52:15,308 --> 02:52:17,243 REALLY PLAY OUT A LOT FOR THOSE 5112 02:52:17,243 --> 02:52:18,277 OF US, YOU KNOW, THAT WERE 5113 02:52:18,277 --> 02:52:19,879 TAKING CARE OF A LOT OF PREGNANT 5114 02:52:19,879 --> 02:52:22,248 PEOPLE DURING THE PANDEMIC, WITH 5115 02:52:22,248 --> 02:52:23,649 VACCINATION, AND OTHER 5116 02:52:23,649 --> 02:52:25,184 MEDICATIONS, THIS CAME UP EVEN 5117 02:52:25,184 --> 02:52:26,953 MORE THAN IT SORT OF NORMALLY 5118 02:52:26,953 --> 02:52:29,121 COMES UP. 5119 02:52:29,121 --> 02:52:30,022 AND THE LAST THING I'LL JUST 5120 02:52:30,022 --> 02:52:31,157 MENTION IS I THINK THAT THE 5121 02:52:31,157 --> 02:52:32,858 PUBLIC HEALTH NEED FOR INCLUSION 5122 02:52:32,858 --> 02:52:34,794 OF PREGNANT AND LACTATING 5123 02:52:34,794 --> 02:52:36,028 INDIVIDUALS JUST BASED ON THE 5124 02:52:36,028 --> 02:52:37,563 NUMBER OF PEOPLE IN THAT 5125 02:52:37,563 --> 02:52:39,865 POPULATION AND THE LACK OF 5126 02:52:39,865 --> 02:52:41,634 INFORMATION HOPEFULLY SPEAKS FOR 5127 02:52:41,634 --> 02:52:43,569 ITSELF, BUT ADDITIONALLY, 5128 02:52:43,569 --> 02:52:44,837 PHYSICIAN SPECIALTY SOCIETIES 5129 02:52:44,837 --> 02:52:46,872 AND OTHER STAKEHOLDERS LIKE THE 5130 02:52:46,872 --> 02:52:48,307 SOCIETY FOR MATERNAL-FETAL 5131 02:52:48,307 --> 02:52:49,075 MEDICINE RECOGNIZED THIS PROBLEM 5132 02:52:49,075 --> 02:52:50,710 A WHILE BACK AND ACTUALLY HELPED 5133 02:52:50,710 --> 02:52:53,012 TO CREATE A COALITION TO ADVANCE 5134 02:52:53,012 --> 02:52:55,748 MATERNAL THERAPEUTICS SINCE 5135 02:52:55,748 --> 02:52:58,718 2014, AND STILL AS OF 2022, WHEN 5136 02:52:58,718 --> 02:53:01,020 YOU GO TO CLINICALTRIALS.GOV, 5137 02:53:01,020 --> 02:53:03,689 YOU KNOW, ONLY 1% OF CLINICAL 5138 02:53:03,689 --> 02:53:05,725 TRIALS MENTIONS THE WORD 5139 02:53:05,725 --> 02:53:07,326 "PREGNANCY" OR "PREGNANT" AND 5140 02:53:07,326 --> 02:53:10,329 ONLY A HALF A PERCENT MENTION 5141 02:53:10,329 --> 02:53:12,198 "BREASTFEEDING" OR "LACTATION." 5142 02:53:12,198 --> 02:53:13,532 SO I APPRECIATE THE SORT OF 5143 02:53:13,532 --> 02:53:14,734 FOCUS ON THIS POPULATION AND I 5144 02:53:14,734 --> 02:53:16,035 THINK FROM A PUBLIC HEALTH 5145 02:53:16,035 --> 02:53:16,902 PERSPECTIVE TO HAVE REALLY THE 5146 02:53:16,902 --> 02:53:18,004 KNOWLEDGE WE NEED TO TAKE THE 5147 02:53:18,004 --> 02:53:19,538 BEST CARE OF PREGNANT AND 5148 02:53:19,538 --> 02:53:22,174 LACTATING PEOPLE, INCLUSION IN 5149 02:53:22,174 --> 02:53:23,609 TRIALS AND TRYING TO PROTECT 5150 02:53:23,609 --> 02:53:26,412 THOSE PEOPLE THROUGH RESEARCH 5151 02:53:26,412 --> 02:53:28,114 RATHER THAN FROM RESEARCH IS 5152 02:53:28,114 --> 02:53:28,981 REALLY NEEDED. 5153 02:53:28,981 --> 02:53:32,151 >> THANK YOU SO MUCH, 5154 02:53:32,151 --> 02:53:34,687 DR. SRINIVAS. 5155 02:53:34,687 --> 02:53:35,788 DR. CORONADO, RURAL POPULATIONS, 5156 02:53:35,788 --> 02:53:42,328 THEY OFTEN FACE SO SOME REAL 5157 02:53:42,328 --> 02:53:43,429 BARRIERS FROM PARTICIPATING IN 5158 02:53:43,429 --> 02:53:44,864 CLINICAL RESEARCH. 5159 02:53:44,864 --> 02:53:47,066 AND SO CAN YOU TELL US, YOU 5160 02:53:47,066 --> 02:53:49,135 KNOW, WHY IS IT SO IMPORTANT 5161 02:53:49,135 --> 02:53:53,072 THAT WE INCLUDE THEM IN OUR 5162 02:53:53,072 --> 02:53:53,305 STUDIES? 5163 02:53:53,305 --> 02:53:56,809 >> YEAH, THANK YOU FOR THAT 5164 02:53:56,809 --> 02:53:57,143 QUESTION. 5165 02:53:57,143 --> 02:53:58,577 I JUST WANT TO ECHO, I THINK, 5166 02:53:58,577 --> 02:53:59,979 WHAT THE OTHER PANELISTS TALKED 5167 02:53:59,979 --> 02:54:02,415 ABOUT AND EVEN SOME OF THE 5168 02:54:02,415 --> 02:54:04,250 PANELISTS EARLIER IN THE DAY 5169 02:54:04,250 --> 02:54:05,151 TALKED ABOUT THE BENEFITS OF 5170 02:54:05,151 --> 02:54:05,584 INCLUSION. 5171 02:54:05,584 --> 02:54:07,353 SO IT MAKES OUR RESEARCH 5172 02:54:07,353 --> 02:54:10,389 FINDINGS MORE GENERALIZABLE, IT 5173 02:54:10,389 --> 02:54:11,824 CAN REALLY HELP WITH OUR ACCRUAL 5174 02:54:11,824 --> 02:54:14,894 TO STUDIES, AND REALLY MAKING 5175 02:54:14,894 --> 02:54:16,862 SURE THAT THE BENEFITS OF 5176 02:54:16,862 --> 02:54:18,064 SCIENTIFIC DISCOVERIES ARE 5177 02:54:18,064 --> 02:54:19,398 REACHING, YOU KNOW, DIVERSE 5178 02:54:19,398 --> 02:54:21,801 POPULATIONS, I THINK IS A REALLY 5179 02:54:21,801 --> 02:54:25,171 IMPORTANT POINT FROM AN ETHICAL 5180 02:54:25,171 --> 02:54:25,705 PERSPECTIVE. 5181 02:54:25,705 --> 02:54:26,939 BUT WHAT I WANT TO FOCUS ON IN 5182 02:54:26,939 --> 02:54:28,007 TERMS OF RURAL IS NOT JUST THAT 5183 02:54:28,007 --> 02:54:30,443 THE VAST MAJORITY OF CLINICAL 5184 02:54:30,443 --> 02:54:31,811 TRIALS PARTICIPANTS LIVE WITHIN 5185 02:54:31,811 --> 02:54:33,512 A FEW MILES OF AN ACADEMIC 5186 02:54:33,512 --> 02:54:34,513 MEDICAL CENTER AND A LOT OF 5187 02:54:34,513 --> 02:54:36,082 RURAL POPULATIONS ARE EXCLUDED 5188 02:54:36,082 --> 02:54:37,983 FROM PARTICIPATION JUST FOR THAT 5189 02:54:37,983 --> 02:54:40,720 VERY REASON, BUT I WANT TO TALK 5190 02:54:40,720 --> 02:54:44,557 ABOUT ONE OF THE KEY BENEFITS OF 5191 02:54:44,557 --> 02:54:45,324 INCLUDING RURAL POPULATIONS AND 5192 02:54:45,324 --> 02:54:46,559 OTHER DIVERSE POPULATIONS, AND 5193 02:54:46,559 --> 02:54:50,596 THAT INTILD IS IN BUILDING TRUSN 5194 02:54:50,596 --> 02:54:51,030 CLINICAL RESEARCH. 5195 02:54:51,030 --> 02:54:53,532 I THINK WE SAW IN OUR EXPERIENCE 5196 02:54:53,532 --> 02:54:56,102 WITH COVID AND ATTITUDES ABOUT 5197 02:54:56,102 --> 02:54:59,371 VACCINATION, FOR EXAMPLE, THAT 5198 02:54:59,371 --> 02:55:00,706 THERE'S A BIG AND IMPORTANT 5199 02:55:00,706 --> 02:55:02,174 RURAL DIVIDE IN OUR COUNTRY, AND 5200 02:55:02,174 --> 02:55:03,776 THE MORE THAT WE CAN DO TO MAKE 5201 02:55:03,776 --> 02:55:04,977 SURE WE'RE INCLUDING RURAL 5202 02:55:04,977 --> 02:55:07,146 POPULATIONS AND W WHERE WE'RE 5203 02:55:07,146 --> 02:55:08,514 BRIDGING THAT GAP, AND THE MORE 5204 02:55:08,514 --> 02:55:09,782 THAT WE CAN BRIDGE THAT GAP, WE 5205 02:55:09,782 --> 02:55:12,785 CAN BUILD TRUST IN ALLOWING 5206 02:55:12,785 --> 02:55:15,054 PEOPLE TO KNOW THAT THE 5207 02:55:15,054 --> 02:55:15,688 SCIENTIFIC DISCOVERIES THAT ARE 5208 02:55:15,688 --> 02:55:17,022 COMING OUT OF URBAN CENTERS, 5209 02:55:17,022 --> 02:55:18,691 THAT ARE COMING OUT OF OUR 5210 02:55:18,691 --> 02:55:20,559 FEDERAL GOVERNMENT ARE ONES THAT 5211 02:55:20,559 --> 02:55:22,862 APPLY TO THEIR POPULATION. 5212 02:55:22,862 --> 02:55:25,698 BECAUSE THEIR POPULATION 5213 02:55:25,698 --> 02:55:27,233 CONTRIBUTED TO THOSE FINDINGS 5214 02:55:27,233 --> 02:55:28,534 AND WERE PARTICIPANTS IN THE 5215 02:55:28,534 --> 02:55:28,768 TRIALS. 5216 02:55:28,768 --> 02:55:31,203 SO I THINK THAT THERE'S A HUGE 5217 02:55:31,203 --> 02:55:34,807 NEED TO BUILD TRUST IN THE 5218 02:55:34,807 --> 02:55:35,775 SCIENTIFIC ENTERPRISE IN TODAY'S 5219 02:55:35,775 --> 02:55:37,109 WORLD AND ONE WAY TO DO THAT IS 5220 02:55:37,109 --> 02:55:38,110 TO THINK ABOUT RURAL 5221 02:55:38,110 --> 02:55:38,544 POPULATIONS. 5222 02:55:38,544 --> 02:55:39,845 THE OTHER POINT I WANT TO MAKE, 5223 02:55:39,845 --> 02:55:41,313 AND I KNOW THAT WE'RE PROBABLY 5224 02:55:41,313 --> 02:55:43,482 LATER GOING TO GET INTO 5225 02:55:43,482 --> 02:55:45,351 INTERSECTIONALITY, BUT FROM THE 5226 02:55:45,351 --> 02:55:50,823 SPER SPECULFROM THEPERSPECTIVE D 5227 02:55:50,823 --> 02:55:52,792 DIVERSE, ONE OF THE KEY POINTS I 5228 02:55:52,792 --> 02:55:54,560 OFTEN MAKE IS THE AVERAGE 5229 02:55:54,560 --> 02:55:55,561 EDUCATION LET FOR A LATINO 5230 02:55:55,561 --> 02:55:57,196 LIVING IN A RURAL POPULATION IS 5231 02:55:57,196 --> 02:55:58,164 ABOUT FOURTH GRADE. 5232 02:55:58,164 --> 02:56:01,066 THE AVERAGE EDUCATION LEVEL OF A 5233 02:56:01,066 --> 02:56:02,468 LATINO LIVING IN AN URBAN 5234 02:56:02,468 --> 02:56:03,235 POPULATION IS EIGHTH GRADE. 5235 02:56:03,235 --> 02:56:04,670 SO WHEN YOU CREATE MATERIALS TO 5236 02:56:04,670 --> 02:56:05,771 ENROLL STUDY PARTICIPANTS, 5237 02:56:05,771 --> 02:56:06,539 THERE'S A BIG DIFFERENCE IN WHAT 5238 02:56:06,539 --> 02:56:08,541 YOU CAN SAY AND HOW YOU RECRUIT 5239 02:56:08,541 --> 02:56:09,508 PARTICIPANTS WHO HAVE A FOURTH 5240 02:56:09,508 --> 02:56:11,544 GRADE READING LEVEL VERSUS AN 5241 02:56:11,544 --> 02:56:12,778 EIGHTH GRADE READING LEVEL, AND 5242 02:56:12,778 --> 02:56:14,146 I THINK IT'S REALLY IMPORTANT 5243 02:56:14,146 --> 02:56:15,748 THAT WHEN WE DO RESEARCH THAT 5244 02:56:15,748 --> 02:56:17,383 INCLUDES RURAL POPULATIONS, THAT 5245 02:56:17,383 --> 02:56:21,687 WE ALSO THINK OF THOSE 5246 02:56:21,687 --> 02:56:23,222 SUBGROUPS, THE LATINOS LIVING IN 5247 02:56:23,222 --> 02:56:24,523 THOSE POPULATIONS, THE 5248 02:56:24,523 --> 02:56:29,428 FARMWORKERS IN THOSE 5249 02:56:29,428 --> 02:56:30,429 POPULATIONS, THOSE WITH 5250 02:56:30,429 --> 02:56:31,664 DISABILITIES OR DIVERSE GENDER 5251 02:56:31,664 --> 02:56:33,499 AND SEXUAL ORIENTATIONS AND ALL 5252 02:56:33,499 --> 02:56:35,234 THAT, BECAUSE IT ALL EXISTS IN 5253 02:56:35,234 --> 02:56:35,968 RURAL COMMUNITIES, AND I THINK 5254 02:56:35,968 --> 02:56:37,136 THAT'S AN IMPORTANT POINT I WANT 5255 02:56:37,136 --> 02:56:39,672 TO MAKE AS WELL. 5256 02:56:39,672 --> 02:56:43,209 >> YES, REALLY GOOD POINTS, 5257 02:56:43,209 --> 02:56:45,277 DR. CORONADO. 5258 02:56:45,277 --> 02:56:46,912 SO EACH OF YOU HAVE REALLY 5259 02:56:46,912 --> 02:56:51,183 TALKED ABOUT, YOU KNOW, WHY THE 5260 02:56:51,183 --> 02:56:52,418 SPECIAL POPULATION YOU'RE 5261 02:56:52,418 --> 02:56:54,053 REPRESENTING HERE TODAY, WHY 5262 02:56:54,053 --> 02:56:56,355 IT'S IMPORTANT AND TO INCLUDE 5263 02:56:56,355 --> 02:56:59,325 THESE POPULATIONS AND THE 5264 02:56:59,325 --> 02:57:00,426 BENEFITS OF DOING THAT, BUT I 5265 02:57:00,426 --> 02:57:03,596 ALSO WANT TO MOVE A LITTLE BIT 5266 02:57:03,596 --> 02:57:09,168 INTO THE SOLUTIONING SPACE HERE. 5267 02:57:09,168 --> 02:57:10,603 SO AGAIN THIS IS A QUESTION FOR 5268 02:57:10,603 --> 02:57:12,037 EACH OF YOU, AND I WONDER IF 5269 02:57:12,037 --> 02:57:14,206 EACH OF YOU COULD TAKE, YOU 5270 02:57:14,206 --> 02:57:16,275 KNOW, ONE TO THREE MINUTES AND 5271 02:57:16,275 --> 02:57:19,712 TALK TO US, TELL US SOME 5272 02:57:19,712 --> 02:57:21,480 STRATEGIES, SOME BEST PRACTICES 5273 02:57:21,480 --> 02:57:26,919 THAT CAN BE USED TO HELP 5274 02:57:26,919 --> 02:57:27,786 SPONSORS INCLUDE THE POPULATION 5275 02:57:27,786 --> 02:57:29,889 YOU'RE REPRESENTING TODAY IN 5276 02:57:29,889 --> 02:57:30,422 CLINICAL RESEARCH. 5277 02:57:30,422 --> 02:57:32,057 WHAT SHOULD THEY BE DOING, WHAT 5278 02:57:32,057 --> 02:57:36,028 ARE SOME STRATEGIES? 5279 02:57:36,028 --> 02:57:40,399 SO DR. K CACERES, LET'S START WH 5280 02:57:40,399 --> 02:57:41,533 YOU. 5281 02:57:41,533 --> 02:57:43,168 >> WELL, FOR MANY SEXUAL AND 5282 02:57:43,168 --> 02:57:44,403 GENDER MINORITY INDIVIDUALS, 5283 02:57:44,403 --> 02:57:45,905 THEY MIGHT BE INVISIBLE. 5284 02:57:45,905 --> 02:57:47,806 IT'S NOT -- IT'S -- LIKE IT'S 5285 02:57:47,806 --> 02:57:49,441 DIFFERENT FROM RACE OR OTHER 5286 02:57:49,441 --> 02:57:51,176 ATTRIBUTES THAT YOU COULD 5287 02:57:51,176 --> 02:57:52,711 POTENTIALLY -- YOU CAN'T REALLY 5288 02:57:52,711 --> 02:57:55,347 HIDE YOUR RACE. 5289 02:57:55,347 --> 02:57:56,649 OR HOW PEOPLE INTERPRET YOUR 5290 02:57:56,649 --> 02:57:57,116 RACE. 5291 02:57:57,116 --> 02:57:59,184 BUT FOR SOME INDIVIDUALS WITH 5292 02:57:59,184 --> 02:58:00,953 SEXUAL MINORITIES, THEY MAY BE 5293 02:58:00,953 --> 02:58:03,789 ABLE TO HIDE THEIR MINORITY. 5294 02:58:03,789 --> 02:58:04,990 SO SOMETHING THAT RESEARCH 5295 02:58:04,990 --> 02:58:07,293 CLINICIANS CAN DO TO ENHANCE 5296 02:58:07,293 --> 02:58:07,960 PARTICIPATION IN RESEARCH 5297 02:58:07,960 --> 02:58:10,562 STUDIES IS TO INCREASE 5298 02:58:10,562 --> 02:58:11,563 VISIBILITY OF EITHER YOUR ROLE 5299 02:58:11,563 --> 02:58:13,532 AS AN ALLY OR THE FOCUS OF YOUR 5300 02:58:13,532 --> 02:58:15,401 STUDY BEING ON THESE DIFFERENCES 5301 02:58:15,401 --> 02:58:16,602 ACROSS THESE DIFFERENT 5302 02:58:16,602 --> 02:58:18,804 IDENTITIES, SO IT'S CLEAR TO 5303 02:58:18,804 --> 02:58:20,239 PEOPLE BEFORE THEY ENROLL IN A 5304 02:58:20,239 --> 02:58:22,207 STUDY THAT THEY'RE GOING TO BE 5305 02:58:22,207 --> 02:58:24,510 WELL TAKEN CARE OF AND THAT 5306 02:58:24,510 --> 02:58:26,211 THEIR SEXUAL IDENTITY OR GENDER 5307 02:58:26,211 --> 02:58:27,680 IDENTITY ISN'T GOING TO BE USED 5308 02:58:27,680 --> 02:58:28,681 AS A WEAPON. 5309 02:58:28,681 --> 02:58:31,317 I THINK RIGHT NOW FOR MANY 5310 02:58:31,317 --> 02:58:32,451 SEXUAL AND GENDER MINORITY 5311 02:58:32,451 --> 02:58:33,085 INDIVIDUALS IN THIS COUNTRY, 5312 02:58:33,085 --> 02:58:36,355 THIS YEAR I THINK WE HAVE CLOSE 5313 02:58:36,355 --> 02:58:37,990 TO 500 ANTILGBTQ POLICIES BEING 5314 02:58:37,990 --> 02:58:38,657 PASSED IN ALL DIFFERENT LEVELS 5315 02:58:38,657 --> 02:58:39,658 OF GOVERNMENT, AND THERE'S A LOT 5316 02:58:39,658 --> 02:58:42,394 OF FEAR FOR TRANSGENDER PEOPLE 5317 02:58:42,394 --> 02:58:43,362 IN PARTICULAR SEEKING HEALTHCARE 5318 02:58:43,362 --> 02:58:44,596 OR IF THEY PARTICIPATE IN A 5319 02:58:44,596 --> 02:58:46,131 STUDY AND IDENTIFY AS A 5320 02:58:46,131 --> 02:58:46,999 TRANSGENDER PERSON, LIKE HOW 5321 02:58:46,999 --> 02:58:48,534 MIGHT THAT IMPACT THEIR CARE 5322 02:58:48,534 --> 02:58:49,768 THAT THEY'LL RECEIVE, THEIR 5323 02:58:49,768 --> 02:58:50,636 INSURANCE, OTHER ASPECTS OF 5324 02:58:50,636 --> 02:58:51,937 THEIR LIFE, SO I THINK AS MUCH 5325 02:58:51,937 --> 02:58:57,376 AS WE CAN DO TO BE OPEN ABOUT 5326 02:58:57,376 --> 02:58:58,744 THE NEED AND THE IMPORTANCE OF 5327 02:58:58,744 --> 02:58:59,912 RECRUITING THESE GROUPS INTO 5328 02:58:59,912 --> 02:59:01,447 CLINICAL RESEARCH AND BEING 5329 02:59:01,447 --> 02:59:02,715 UNDERSTANDING OF SOME OF THE 5330 02:59:02,715 --> 02:59:04,116 BARRIERS AND ACKNOWLEDGING THEM 5331 02:59:04,116 --> 02:59:05,985 EARLY ON IN THE CONSENT PROCESS 5332 02:59:05,985 --> 02:59:07,386 OR RECRUITMENT PROCESS, I THINK 5333 02:59:07,386 --> 02:59:09,722 CAN GO A LONG WAY TO SORT OF 5334 02:59:09,722 --> 02:59:12,558 ENHANCE TRUST IN THE RESEARCH 5335 02:59:12,558 --> 02:59:13,359 TEAM. 5336 02:59:13,359 --> 02:59:19,832 >> THANK YOU FOR THAT. 5337 02:59:19,832 --> 02:59:20,632 DR. SRINIVAS, SIMILAR QUESTION, 5338 02:59:20,632 --> 02:59:23,969 YOU KNOW, TO YOU, WHAT ARE SOME 5339 02:59:23,969 --> 02:59:27,873 BEST PRACTICES FOR -- AND SOME 5340 02:59:27,873 --> 02:59:30,042 STRATEGIES TO INCLUDE PREGNANT 5341 02:59:30,042 --> 02:59:31,710 AND LACTATING PERSONS IN 5342 02:59:31,710 --> 02:59:32,778 CLINICAL RESEARCH, AND I DON'T 5343 02:59:32,778 --> 02:59:33,812 KNOW IF YOU SAW THE QUESTION IN 5344 02:59:33,812 --> 02:59:35,581 THE CHAT, BUT MAYBE YOU CAN 5345 02:59:35,581 --> 02:59:36,348 SIMULTANEOUSLY ADDRESS, YOU 5346 02:59:36,348 --> 02:59:38,117 KNOW, WHAT IS THE RECOMMENDATION 5347 02:59:38,117 --> 02:59:40,953 FOR IMPROVING RECRUITMENT OF 5348 02:59:40,953 --> 02:59:42,821 THIS POPULATION IN CLINICAL 5349 02:59:42,821 --> 02:59:43,822 TRIALS? 5350 02:59:43,822 --> 02:59:44,456 >> SURE. 5351 02:59:44,456 --> 02:59:47,693 THANK YOU FOR THE QUESTION. 5352 02:59:47,693 --> 02:59:49,661 I THINK FIRST, YOU KNOW, JUST 5353 02:59:49,661 --> 02:59:51,630 BROADLY, THERE'S A FEAR OF, I 5354 02:59:51,630 --> 02:59:54,833 THINK, INCLUSION OF PREGNANT AND 5355 02:59:54,833 --> 02:59:55,467 LACTATING PEOPLE. 5356 02:59:55,467 --> 02:59:56,602 THEY'VE BEEN CONSIDERED SORT OF 5357 02:59:56,602 --> 02:59:59,104 A VULNERABLE POPULATION AND BY 5358 02:59:59,104 --> 03:00:02,274 DOING THAT, SORT OF THIS -- IT'S 5359 03:00:02,274 --> 03:00:03,942 SORT OF ALMOST AN AUTOMATIC 5360 03:00:03,942 --> 03:00:04,209 EXCLUSION. 5361 03:00:04,209 --> 03:00:05,577 AND I THINK THE FIRST THING IS 5362 03:00:05,577 --> 03:00:07,146 TO SORT OF REMOVE PREGNANT WOMEN 5363 03:00:07,146 --> 03:00:09,214 AS AN EXAMPLE OF A VULNERABLE 5364 03:00:09,214 --> 03:00:10,516 POPULATION IN THE COMMON RULE 5365 03:00:10,516 --> 03:00:11,917 AND REALLY THINK ABOUT SHIFTING 5366 03:00:11,917 --> 03:00:13,919 OUR FOCUS TO REALLY INCLUDING 5367 03:00:13,919 --> 03:00:15,454 AND INTEGRATING PREGNANT PEOPLE 5368 03:00:15,454 --> 03:00:18,524 AND LACTATING PEOPLE IN THE 5369 03:00:18,524 --> 03:00:21,493 CLINICAL RESEARCH AGENDA. 5370 03:00:21,493 --> 03:00:22,694 I THINK THERE ARE SOME 5371 03:00:22,694 --> 03:00:24,897 REGULATORY BARRIERS TO RESEARCH 5372 03:00:24,897 --> 03:00:27,766 IN PREGNANT PEOPLE, AND SO 5373 03:00:27,766 --> 03:00:28,967 RECOGNIZING THE SORT OF AUTONOMY 5374 03:00:28,967 --> 03:00:30,602 OF PREGNANT PEOPLE AND THE 5375 03:00:30,602 --> 03:00:32,805 EVOLUTION OF A FAMILY STRUCTURE 5376 03:00:32,805 --> 03:00:34,139 AND REALLY JUST, I THINK, 5377 03:00:34,139 --> 03:00:36,542 INCORPORATING THEM, AND ACTUALLY 5378 03:00:36,542 --> 03:00:38,310 I THINK ONE OF THE OTHER 5379 03:00:38,310 --> 03:00:38,944 PANELISTS MENTIONED JUST SORT OF 5380 03:00:38,944 --> 03:00:40,612 THE TRUST IN CLINICAL RESEARCH 5381 03:00:40,612 --> 03:00:42,047 AND WHAT WE CAN DO TO SORT OF 5382 03:00:42,047 --> 03:00:43,482 IMPROVE THAT MORE BROADLY, AND I 5383 03:00:43,482 --> 03:00:45,150 THINK THE INCLUSION OF DIFFERENT 5384 03:00:45,150 --> 03:00:46,552 POPULATIONS AND CREATING A 5385 03:00:46,552 --> 03:00:48,887 CULTURE OF TRUST IN RESEARCH 5386 03:00:48,887 --> 03:00:49,988 AROUND -- AND THEN THAT IS SORT 5387 03:00:49,988 --> 03:00:51,290 OF, I THINK, A CRITICAL PIECE 5388 03:00:51,290 --> 03:00:54,059 FOR ALL OF OUR POPULATIONS TO 5389 03:00:54,059 --> 03:00:55,594 REALLY MOVE A RESEARCH AGENDA 5390 03:00:55,594 --> 03:00:56,795 FORWARD THAT'S MORE 5391 03:00:56,795 --> 03:00:58,964 INCLUSIVEMENT I THINK ONE OF THE 5392 03:00:58,964 --> 03:01:00,299 THINGS IS THAT PEOPLE TALK A LOT 5393 03:01:00,299 --> 03:01:02,734 ABOUT IS JUST THE VULNERABILITY 5394 03:01:02,734 --> 03:01:03,702 OF THE POPULATION BECAUSE OF NOT 5395 03:01:03,702 --> 03:01:05,137 BEING ABLE TO PROVIDE INFORMED 5396 03:01:05,137 --> 03:01:06,939 CONSENT, AND WE SORT OF HEARD 5397 03:01:06,939 --> 03:01:08,674 THAT PANEL AT THE LAST PANEL 5398 03:01:08,674 --> 03:01:10,642 AROUND INFORMED CONSENT, SO SOME 5399 03:01:10,642 --> 03:01:11,210 CONSIDERATIONS WHEN YOU'RE 5400 03:01:11,210 --> 03:01:13,345 TRYING TO RECRUIT PREGNANT AND 5401 03:01:13,345 --> 03:01:14,546 LACTATING PEOPLE, PREGNANT 5402 03:01:14,546 --> 03:01:17,282 PEOPLE IN PARTICULAR SORT OF 5403 03:01:17,282 --> 03:01:19,284 WHERE THE LOCATION OF THE STUDY, 5404 03:01:19,284 --> 03:01:19,952 WHEN YOU'RE TRYING TO RECRUIT, 5405 03:01:19,952 --> 03:01:22,321 WHAT ARE SORT OF SOME OPPORTUNE 5406 03:01:22,321 --> 03:01:24,223 TIMES AND INOPPORTUNE TIMES, SO 5407 03:01:24,223 --> 03:01:26,692 FOR EXAMPLE, AS A LABOR AND 5408 03:01:26,692 --> 03:01:28,861 DELIVERY RESEARCHER, CONSENTING 5409 03:01:28,861 --> 03:01:30,395 PEOPLE WHEN THEY'RE IN LABOR AND 5410 03:01:30,395 --> 03:01:32,731 THEY'RE IN A LOT OF PAIN IS NOT 5411 03:01:32,731 --> 03:01:35,200 A GOOD TIME TO SORT OF FEEL LIKE 5412 03:01:35,200 --> 03:01:36,835 YOU HAVE -- YOU'RE GETTING REAL 5413 03:01:36,835 --> 03:01:37,769 INFORMED CONSENT. 5414 03:01:37,769 --> 03:01:38,737 BUT TAKING THAT INTO 5415 03:01:38,737 --> 03:01:41,073 CONSIDERATION AND THINKING ABOUT 5416 03:01:41,073 --> 03:01:42,841 SOME OF OUR STUDIES WILL SAY 5417 03:01:42,841 --> 03:01:45,210 AFTER A PATIENT HAS ADEQUATE 5418 03:01:45,210 --> 03:01:46,879 PAIN CONTROL OR THEY HAVE 5419 03:01:46,879 --> 03:01:47,713 REGIONAL ANESTHESIA OR SOMETHING 5420 03:01:47,713 --> 03:01:49,515 LIKE THAT, SO WE KNOW THAT THE 5421 03:01:49,515 --> 03:01:52,851 INFORMED CONSENT PROCESS IS 5422 03:01:52,851 --> 03:01:53,185 APPROPRIATE. 5423 03:01:53,185 --> 03:01:54,520 SO THAT'S JUST A SPECIFIC 5424 03:01:54,520 --> 03:01:56,088 EXAMPLE OF SOME SPECIAL 5425 03:01:56,088 --> 03:01:57,289 CONSIDERATIONS IN A POPULATION 5426 03:01:57,289 --> 03:02:00,292 WHERE I THINK -- BUT THE IDEA 5427 03:02:00,292 --> 03:02:01,193 THAT THE VULNERABILITY IS 5428 03:02:01,193 --> 03:02:03,028 PRESENT ALL THE TIME AND THAT 5429 03:02:03,028 --> 03:02:04,563 THERE'S NO TIME DURING A 5430 03:02:04,563 --> 03:02:06,465 PREGNANCY OR DURING A LABOR AND 5431 03:02:06,465 --> 03:02:07,099 DELIVERY PROCESS THAT YOU COULD 5432 03:02:07,099 --> 03:02:08,233 FIND A TIME WHERE PATIENTS CAN 5433 03:02:08,233 --> 03:02:10,936 BE ADEQUATELY CONSENTED, I THINK 5434 03:02:10,936 --> 03:02:15,174 HAS BEEN THE WRONG APPROACH. 5435 03:02:15,174 --> 03:02:18,644 >> AGREE, THANK YOU, 5436 03:02:18,644 --> 03:02:20,078 DR. SRINIVAS. 5437 03:02:20,078 --> 03:02:22,714 DR. ZHOU, CAN YOU TELL US ABOUT 5438 03:02:22,714 --> 03:02:23,582 SOME OF THE -- WHAT YOU THINK 5439 03:02:23,582 --> 03:02:28,287 SOME OF THE BEST STRATEGIES ARE 5440 03:02:28,287 --> 03:02:29,555 TO INCLUDE SOCIOECONOMICALLY 5441 03:02:29,555 --> 03:02:33,292 DISADVANTAGED POPULATIONS IN 5442 03:02:33,292 --> 03:02:33,825 CLINICAL RESEARCH? 5443 03:02:33,825 --> 03:02:34,893 >> YEAH, DEFINITELY. 5444 03:02:34,893 --> 03:02:36,662 SO I THINK THE KEY IN THIS GROUP 5445 03:02:36,662 --> 03:02:39,164 IS ACTUALLY FLEXIBILITY. 5446 03:02:39,164 --> 03:02:42,467 SO FLEXIBILITY IN MANY SENSES. 5447 03:02:42,467 --> 03:02:43,669 FLEXIBILITY IN TERMS OF THE 5448 03:02:43,669 --> 03:02:44,870 PHYSICAL ENVIRONMENT YOU'RE 5449 03:02:44,870 --> 03:02:45,737 PERFORMING YOUR RESEARCH, 5450 03:02:45,737 --> 03:02:48,173 CONSIDER DOING IT IN A 5451 03:02:48,173 --> 03:02:49,908 PARTICIPANT'S HOME OR TRUSTED 5452 03:02:49,908 --> 03:02:50,809 LOCATION OR PROVIDE 5453 03:02:50,809 --> 03:02:53,378 TRANSPORTATION VOUCHERS OR 5454 03:02:53,378 --> 03:02:55,013 RIDESHARES TO THE RESEARCH SITE. 5455 03:02:55,013 --> 03:02:56,748 FLEXIBILITY IN HOW YOU PRESENT 5456 03:02:56,748 --> 03:02:59,184 INFORMATION TO THESE 5457 03:02:59,184 --> 03:03:01,153 PARTICIPANTS. 5458 03:03:01,153 --> 03:03:03,255 CONSIDERING VERBAL IMAGE 5459 03:03:03,255 --> 03:03:04,790 NUMERICAL, VIDEO FORMS TO 5460 03:03:04,790 --> 03:03:06,658 OVERCOMING LITERACY ISSUES, 5461 03:03:06,658 --> 03:03:07,859 FLEXIBILITY IN DATA CHECK SHOULD 5462 03:03:07,859 --> 03:03:12,130 COLLECTION,CERTAIN GROUPS RESPOO 5463 03:03:12,130 --> 03:03:14,166 CERTAIN STRATEGIES, INTERNET 5464 03:03:14,166 --> 03:03:15,033 TECHNOLOGY, THESE STRATEGIES 5465 03:03:15,033 --> 03:03:16,335 MIGHT BE BETTER IN YOUNGER 5466 03:03:16,335 --> 03:03:17,536 GROUPS WHEREAS TELEPHONE OR 5467 03:03:17,536 --> 03:03:20,205 FACE-TO-FACE WITH OLDER GROUPS, 5468 03:03:20,205 --> 03:03:21,740 THE TIME, THE DAY, THE WEEK, 5469 03:03:21,740 --> 03:03:23,609 PROVIDE OPTIONS TO DO THIS AFTER 5470 03:03:23,609 --> 03:03:25,010 HOURS, WEEKENDS, WHEN THESE 5471 03:03:25,010 --> 03:03:25,811 PARTICIPANTS AREN'T GOING TO BE 5472 03:03:25,811 --> 03:03:26,812 BUSY AT WORK. 5473 03:03:26,812 --> 03:03:30,082 AND THEN OBTAINING SOME 5474 03:03:30,082 --> 03:03:32,851 FLEXIBILITY IN FORMS OF CONTACT, 5475 03:03:32,851 --> 03:03:34,052 ENSURING YOU HAVE MULTIPLE FORMS 5476 03:03:34,052 --> 03:03:35,254 OF CONTACT FOR EACH INDIVIDUAL 5477 03:03:35,254 --> 03:03:36,822 PARTICIPANT SO THAT YOU CAN 5478 03:03:36,822 --> 03:03:37,789 MAINTAIN CONTACT WITH THESE 5479 03:03:37,789 --> 03:03:39,992 GROUPS, THAT CAN BE MUCH MORE 5480 03:03:39,992 --> 03:03:41,159 CHALLENGING. 5481 03:03:41,159 --> 03:03:42,160 THE LAST THING TO TOUCH ON IN 5482 03:03:42,160 --> 03:03:43,962 THIS GROUP IS CERTAINLY 5483 03:03:43,962 --> 03:03:44,830 FINANCIAL INCENTIVES. 5484 03:03:44,830 --> 03:03:46,565 THIS IS A FREQUENTLY USED 5485 03:03:46,565 --> 03:03:48,166 RECRUITMENT TOOL, SUCCESS IN 5486 03:03:48,166 --> 03:03:49,234 STUDIES HAVE BEEN SORT OF MIXED, 5487 03:03:49,234 --> 03:03:50,869 BUT I THINK WE DO THINK THAT 5488 03:03:50,869 --> 03:03:54,273 THIS IS IMPORTANT FOR SOCIAL 5489 03:03:54,273 --> 03:03:55,173 ECONOMICALLY DISADVANTAGED 5490 03:03:55,173 --> 03:03:57,342 GROUPS TO ALLOW THEM TO BE FAIR 5491 03:03:57,342 --> 03:03:59,244 AND WHAT I DO IS OFTEN I WILL -- 5492 03:03:59,244 --> 03:04:03,415 FOR ALL OF THESE POINTS, I SORT 5493 03:04:03,415 --> 03:04:06,218 PILOT, PILOT, PILOT, SEE WHICH 5494 03:04:06,218 --> 03:04:08,654 WAY IS BEST FOR THE GROUP THAT 5495 03:04:08,654 --> 03:04:11,556 I'M STUDYING, AND MAKING SURE 5496 03:04:11,556 --> 03:04:12,524 IT'S VALID AND FAIR. 5497 03:04:12,524 --> 03:04:22,834 >> YES, THANK YOU FOR THAT. 5498 03:04:22,834 --> 03:04:23,735 DR. MILES, MANY CLINICAL TRIALS 5499 03:04:23,735 --> 03:04:27,105 AND CLINICAL RESEARCH STUDIES 5500 03:04:27,105 --> 03:04:30,175 ARE OFTEN NOT ACCESSIBLE TO 5501 03:04:30,175 --> 03:04:31,843 PERSONS WITH DISABILITIES. 5502 03:04:31,843 --> 03:04:34,913 CAN YOU TELL US A LITTLE BIT 5503 03:04:34,913 --> 03:04:36,448 ABOUT WHAT ARE SOME OF THE 5504 03:04:36,448 --> 03:04:39,051 STRATEGIES AND CONSIDERATIONS 5505 03:04:39,051 --> 03:04:43,155 THAT NEED TO BE TAKEN INTO 5506 03:04:43,155 --> 03:04:46,758 ACCOUNT WHEN -- TO INCLUDE THIS 5507 03:04:46,758 --> 03:04:48,393 POPULATION IN CLINICAL RESEARCH 5508 03:04:48,393 --> 03:04:50,162 STUDIES? 5509 03:04:50,162 --> 03:04:53,165 >> I HAVE SO MUCH TO SAY BUT I 5510 03:04:53,165 --> 03:04:55,634 WILL JUST SAY THIS, IF WE'RE NOT 5511 03:04:55,634 --> 03:04:57,302 AWARE OF A PROBLEM, WE CAN'T 5512 03:04:57,302 --> 03:04:58,737 CREATE SOLUTIONS TO THEM, AND 5513 03:04:58,737 --> 03:05:00,939 PEOPLE WITH DISABILITIES WITH 5514 03:05:00,939 --> 03:05:02,708 LIVED EXPERIENCES MAKE THEM 5515 03:05:02,708 --> 03:05:04,042 UNIQUELY POSITIONED TO IDENTIFY 5516 03:05:04,042 --> 03:05:06,244 AND SOLVE THE VERY PROBLEMS THAT 5517 03:05:06,244 --> 03:05:07,546 THEY FACE INCLUDING THE BARRIERS 5518 03:05:07,546 --> 03:05:08,814 TO THEIR PARTICIPATION IN 5519 03:05:08,814 --> 03:05:10,716 CLINICAL TRIALS. 5520 03:05:10,716 --> 03:05:12,651 SO IT'S REALLY IMPERATIVE THAT 5521 03:05:12,651 --> 03:05:14,953 PEOPLE WITH DISABILITIES ARE 5522 03:05:14,953 --> 03:05:18,423 HIRED TO BE RESEARCHERS AND TO 5523 03:05:18,423 --> 03:05:22,294 TAKE PART IN THE SCIENTIFIC 5524 03:05:22,294 --> 03:05:22,594 ENTERPRISE. 5525 03:05:22,594 --> 03:05:25,831 PEOPLE WITH DISABILITIES HAVE 5526 03:05:25,831 --> 03:05:26,765 ADAPTIVE CRITICAL THINKING AND 5527 03:05:26,765 --> 03:05:28,266 PROBLEM SOLVING SKILLS THAT THEY 5528 03:05:28,266 --> 03:05:30,736 USE REGULARLY TO NAVIGATE A 5529 03:05:30,736 --> 03:05:33,905 BARRIER-FILLED SOCIETY, AND 5530 03:05:33,905 --> 03:05:37,008 THOSE SKILLS CAN BE EXTREMELY 5531 03:05:37,008 --> 03:05:38,877 USEFUL IN THE SCIENTIFIC 5532 03:05:38,877 --> 03:05:39,845 ENVIRONMENT. 5533 03:05:39,845 --> 03:05:42,414 AND -- BUT UNFORTUNATELY, 5534 03:05:42,414 --> 03:05:44,683 THERE'S PEOPLE WITH DISABILITIES 5535 03:05:44,683 --> 03:05:46,351 WHO ARE RESEARCHERS EXPERIENCE A 5536 03:05:46,351 --> 03:05:51,089 LOT OF BARRIERS IN THE ACTUAL 5537 03:05:51,089 --> 03:05:54,659 FIELD INCLUDING AN ACCESSIBLE 5538 03:05:54,659 --> 03:05:55,427 LABORATORY FACILITY, RESEARCH 5539 03:05:55,427 --> 03:05:59,197 STEUMENTSINSTRUMENTS, ET CETERAY 5540 03:05:59,197 --> 03:06:01,800 WILL HAVE SOME OF THE SKILLS AND 5541 03:06:01,800 --> 03:06:04,469 KNOW-HOW TO HELP CREATE MORE 5542 03:06:04,469 --> 03:06:06,004 ACCESSIBLE RESEARCH INSTRUMENTS 5543 03:06:06,004 --> 03:06:09,408 AND TO REACH THE DISABLED 5544 03:06:09,408 --> 03:06:11,810 COMMUNITY THAT A NON-DISABLED 5545 03:06:11,810 --> 03:06:13,912 PERSON WHO DOES NOT HAVE THAT 5546 03:06:13,912 --> 03:06:15,013 POSITIONALITY, EVEN IF THEY'VE 5547 03:06:15,013 --> 03:06:17,849 STUDIED ALL ABOUT IT, MAY NOT 5548 03:06:17,849 --> 03:06:18,850 THINK TO DO. 5549 03:06:18,850 --> 03:06:20,619 SO WHEN WE NEED TO -- WE NEED TO 5550 03:06:20,619 --> 03:06:25,123 HAVE DISABLED RESEARCHERS AND 5551 03:06:25,123 --> 03:06:27,192 OTHER DISABLED PEOPLE PART OF 5552 03:06:27,192 --> 03:06:28,326 THE STAFF AND RESEARCH 5553 03:06:28,326 --> 03:06:30,095 ENTERPRISE AND WE NEED TO LISTEN 5554 03:06:30,095 --> 03:06:32,697 TO DISABLED COMMUNITIES, TOWN 5555 03:06:32,697 --> 03:06:34,933 HALLS, REACH OUT TO DISABLED 5556 03:06:34,933 --> 03:06:36,802 ORGANIZATIONS AND GO WHERE 5557 03:06:36,802 --> 03:06:38,003 DISABLED PEOPLE ARE. 5558 03:06:38,003 --> 03:06:39,838 LEARN ABOUT DISABILITY -- LEARN 5559 03:06:39,838 --> 03:06:42,574 ABOUT LANGUAGE AND CONSIDER THE 5560 03:06:42,574 --> 03:06:43,642 TYPE OF LANGUAGE THAT'S BEING 5561 03:06:43,642 --> 03:06:46,912 USED TO DESCRIBE DISABLED 5562 03:06:46,912 --> 03:06:47,212 POPULATIONS. 5563 03:06:47,212 --> 03:06:51,450 OFTEN PEOPLE WITH DISABILITIES 5564 03:06:51,450 --> 03:06:53,018 DON'T SEE AFFIRMING LANGUAGE OR 5565 03:06:53,018 --> 03:06:54,386 LANGUAGE THAT THEY FEEL IS 5566 03:06:54,386 --> 03:06:56,822 RESPECTFUL AND NOT ABLEIST, THEY 5567 03:06:56,822 --> 03:06:58,690 WILL AUTOMATICALLY NOT WANT TO 5568 03:06:58,690 --> 03:07:01,326 PARTICIPATE, SO IF YOU USE TERMS 5569 03:07:01,326 --> 03:07:02,394 MAYBE -- SO REALLY LEARN ABOUT 5570 03:07:02,394 --> 03:07:05,497 DISABILITY ETIQUETTE, AND SO 5571 03:07:05,497 --> 03:07:08,767 TERMS SUCH AS CONFINED TO A 5572 03:07:08,767 --> 03:07:10,635 WHEELCHAIR, WHEELCHAIR-BOUND 5573 03:07:10,635 --> 03:07:12,737 MIGHT TURN SOMEBODY OFF TO 5574 03:07:12,737 --> 03:07:14,172 PARTICIPATING IN YOUR STUDY IF 5575 03:07:14,172 --> 03:07:16,808 YOU DON'T USE MORE INCLUSIVE 5576 03:07:16,808 --> 03:07:20,278 LANGUAGE LIKE DISABILITY, 5577 03:07:20,278 --> 03:07:21,513 WHEELCHAIR USER, FOR EXAMPLE. 5578 03:07:21,513 --> 03:07:23,014 AND FOR SOME OF THE DISABLED 5579 03:07:23,014 --> 03:07:24,216 PEOPLE, THAT MIGHT NOT MATTER. 5580 03:07:24,216 --> 03:07:25,884 SO UNDERSTANDING THAT DISABLED 5581 03:07:25,884 --> 03:07:27,986 PEOPLE ARE A DIVERSE GROUP OF 5582 03:07:27,986 --> 03:07:30,288 PEOPLE WHO SEE THEIR DISABILITY, 5583 03:07:30,288 --> 03:07:31,823 SOME AS A PRIMARY PART OF THEIR 5584 03:07:31,823 --> 03:07:33,525 IDENTITY, SOME AS JUST A 5585 03:07:33,525 --> 03:07:36,061 CHARACTERISTIC THAT THEY LIVE 5586 03:07:36,061 --> 03:07:39,097 WITH, AND NOT EVERYONE IS JUST 5587 03:07:39,097 --> 03:07:40,532 TRYING TO PREVENT OR CURE THEIR 5588 03:07:40,532 --> 03:07:41,233 DISABILITY. 5589 03:07:41,233 --> 03:07:42,767 THE VAST MAJORITY OF PEOPLE WITH 5590 03:07:42,767 --> 03:07:44,503 DISABILITIES HAVE TO LIVE WITH 5591 03:07:44,503 --> 03:07:46,805 THEIR DISABILITIES. 5592 03:07:46,805 --> 03:07:51,343 SO ALSO UNDERSTANDING THAT 5593 03:07:51,343 --> 03:07:53,111 REALITY AND HOW PEOPLE WITH 5594 03:07:53,111 --> 03:07:54,646 DISABILITIES, YOU KNOW, RESPOND 5595 03:07:54,646 --> 03:07:57,449 TO THAT REALITY VARIES. 5596 03:07:57,449 --> 03:07:59,818 SO THOSE ARE JUST SOME OF THE 5597 03:07:59,818 --> 03:08:02,888 WAYS THAT YOU CAN INCREASE 5598 03:08:02,888 --> 03:08:06,091 DISABILITY PARTICIPATION. 5599 03:08:06,091 --> 03:08:07,325 >> THANKS FOR THAT VERY 5600 03:08:07,325 --> 03:08:11,730 THOUGHTFUL RESPONSE, DR. MILES. 5601 03:08:11,730 --> 03:08:12,931 DR. CORONADO, CAN YOU TELL US A 5602 03:08:12,931 --> 03:08:15,800 LITTLE BIT ABOUT HOW CAN 5603 03:08:15,800 --> 03:08:18,970 SPONSORS BEST INCLUDE RURAL 5604 03:08:18,970 --> 03:08:20,505 POPULATIONS IN CLINICAL 5605 03:08:20,505 --> 03:08:22,140 RESEARCH, ARE THINGS LIKE 5606 03:08:22,140 --> 03:08:24,910 DIGITAL CLINICAL TRIALS AND 5607 03:08:24,910 --> 03:08:30,916 OTHER SUCH TECHNOLOGIES HELPFUL, 5608 03:08:30,916 --> 03:08:32,117 OR -- I'M SURE YOU ALSO HAVE TO 5609 03:08:32,117 --> 03:08:33,652 BE AWARE OF THINGS WITH THE 5610 03:08:33,652 --> 03:08:37,289 DIGITAL DI SATELLITE /RADAR AS DF 5611 03:08:37,289 --> 03:08:39,558 YOU CAN TALK TO US ABOUT IN YOUR 5612 03:08:39,558 --> 03:08:40,325 VIEW, WHAT ARE SOME OF THOSE 5613 03:08:40,325 --> 03:08:41,159 BEST STRATEGIES? 5614 03:08:41,159 --> 03:08:42,928 >> REALLY GOOD, REALLY GOOD 5615 03:08:42,928 --> 03:08:45,463 QUESTION. 5616 03:08:45,463 --> 03:08:48,567 I CERTAINLY -, YOU KNOW, ECHO WT 5617 03:08:48,567 --> 03:08:49,868 THE OTHER PANELISTS HAVE 5618 03:08:49,868 --> 03:08:51,570 MENTIONED, AND I WANT TO START 5619 03:08:51,570 --> 03:08:53,972 BY KIND OF APPLAUDING SOME OF 5620 03:08:53,972 --> 03:08:56,408 THE POLICY CHANGES THAT HAVE 5621 03:08:56,408 --> 03:08:58,677 BEEN MADE IN PRACTICE, CHANGES 5622 03:08:58,677 --> 03:09:00,045 IN PRACTICES THAT HAVE BEEN MADE 5623 03:09:00,045 --> 03:09:00,845 AT THE NATIONAL LEVEL. 5624 03:09:00,845 --> 03:09:03,248 SO WE KNOW THAT BACK IN 2000, 5625 03:09:03,248 --> 03:09:04,916 MEDICARE ADOPTED A POLICY TO 5626 03:09:04,916 --> 03:09:07,252 COVER THE ROUTINE EXPENSES 5627 03:09:07,252 --> 03:09:08,720 ASSOCIATED WITH PARTICIPATION IN 5628 03:09:08,720 --> 03:09:11,890 CLINICAL TRIALS, AND IN 2020, 5629 03:09:11,890 --> 03:09:13,959 MEDICAID ALSO ADOPTED THAT 5630 03:09:13,959 --> 03:09:14,492 POLICY. 5631 03:09:14,492 --> 03:09:17,195 SO JUST RECENTLY, THE 70 MILLION 5632 03:09:17,195 --> 03:09:18,597 PEOPLE ACROSS THE COUNTRY THAT 5633 03:09:18,597 --> 03:09:19,831 ARE ENROLLED IN MEDICAID WHICH 5634 03:09:19,831 --> 03:09:22,634 IS TYPICALLY ABOUT 25% OF A 5635 03:09:22,634 --> 03:09:27,105 STATE'S POPULATION NOW HAVE 5636 03:09:27,105 --> 03:09:29,074 GREATER ACCESS TO CLINICAL 5637 03:09:29,074 --> 03:09:30,375 TRIALS BECAUSE IT WILL BE PAID 5638 03:09:30,375 --> 03:09:32,677 FOR BY THEIR INSURANCE, AND THIS 5639 03:09:32,677 --> 03:09:34,012 ALSO PARENTHETICALLY ALLOWS FOR 5640 03:09:34,012 --> 03:09:36,114 THE YOUNGER POPULATION, THOSE 5641 03:09:36,114 --> 03:09:37,749 YOUNGER THAN 65 THAT ARE 5642 03:09:37,749 --> 03:09:40,418 TYPICALLY ELIGIBLE FOR MEDICAID, 5643 03:09:40,418 --> 03:09:41,519 TO HAVE THEIR CARE COVERED. 5644 03:09:41,519 --> 03:09:44,689 SO THIS IS BIG NEWS AND I WAS 5645 03:09:44,689 --> 03:09:46,291 RECENTLY PART OF THE NATIONAL 5646 03:09:46,291 --> 03:09:48,226 ACADEMY'S COMMITTEE ON IMPROVING 5647 03:09:48,226 --> 03:09:49,427 REPRESENTATION IN CLINICAL 5648 03:09:49,427 --> 03:09:50,695 TRIALS IN RESEARCH, AND ONE OF 5649 03:09:50,695 --> 03:09:53,431 THE THINGS THAT IS INCLUDED IN 5650 03:09:53,431 --> 03:09:55,300 THEIR RECOMMENDATION IS THE 5651 03:09:55,300 --> 03:09:56,401 GENERAL ACCOUNTING OFFICE 5652 03:09:56,401 --> 03:09:59,471 EVALUATE THIS POLICY, MAKING 5653 03:09:59,471 --> 03:10:01,006 SURE THAT IT'S BEING IMPLEMENTED 5654 03:10:01,006 --> 03:10:03,208 ACROSS THE COUNTRY. 5655 03:10:03,208 --> 03:10:04,943 SO ARE THERE ANY BARRIERS TO 5656 03:10:04,943 --> 03:10:06,111 IMPLEMENTATION THAT NEED TO BE 5657 03:10:06,111 --> 03:10:07,412 SOLVED IN TERMS OF THAT POLICY. 5658 03:10:07,412 --> 03:10:08,613 SO I THINK THAT'S A BIG ONE. 5659 03:10:08,613 --> 03:10:10,248 IT'S A BIG ONE THAT AFFECTS NOT 5660 03:10:10,248 --> 03:10:12,350 JUST RURAL POPULATIONS BUT URBAN 5661 03:10:12,350 --> 03:10:14,986 POPULATION AS WELL. 5662 03:10:14,986 --> 03:10:16,421 I ALSO WANT TO SAY THERE'S BEEN 5663 03:10:16,421 --> 03:10:17,789 SOME ADVANCES IN TERMS OF 5664 03:10:17,789 --> 03:10:19,224 CREATING NATIONAL DATA SYSTEMS 5665 03:10:19,224 --> 03:10:21,292 TO ALLOW PHYSICIANS IN RURAL 5666 03:10:21,292 --> 03:10:23,461 AREAS TO KNOW ABOUT CLINICAL 5667 03:10:23,461 --> 03:10:24,195 TRIALS THAT MIGHT BE ONGOING. 5668 03:10:24,195 --> 03:10:28,466 SO I THINK THAT THERE IS AND 5669 03:10:28,466 --> 03:10:29,968 AWARENESS AND EDUCATION GAP 5670 03:10:29,968 --> 03:10:31,202 AMONG PROVIDERS IN KNOWING WHICH 5671 03:10:31,202 --> 03:10:32,203 CLINICAL TRIALS MIGHT BE 5672 03:10:32,203 --> 03:10:33,204 AVAILABLE FOR A GIVEN PATIENT 5673 03:10:33,204 --> 03:10:34,305 THAT THEY'RE SEEING IN THEIR 5674 03:10:34,305 --> 03:10:38,309 PRACTICE, SO I THINK THAT 5675 03:10:38,309 --> 03:10:38,910 THERE'S OPPORTUNITY THERE TO 5676 03:10:38,910 --> 03:10:42,147 MAKE SURE THOSE DATA TRACKING 5677 03:10:42,147 --> 03:10:45,016 SYSTEMS ARE -- OR THE TRACKING 5678 03:10:45,016 --> 03:10:45,583 SYSTEMS OR REPOSITORIES ARE 5679 03:10:45,583 --> 03:10:47,118 BEING USED EFFECTIVELY IN RURAL 5680 03:10:47,118 --> 03:10:48,319 POPULATIONS AND I THINK THE LAST 5681 03:10:48,319 --> 03:10:50,255 BUCKET IS REALLY WHAT YOU'RE 5682 03:10:50,255 --> 03:10:51,456 GETTING AT, DR. MENDOZA, WHEN 5683 03:10:51,456 --> 03:10:54,526 YOU TALK ABOUT THE DIGITAL 5684 03:10:54,526 --> 03:10:56,394 DIVIDE. 5685 03:10:56,394 --> 03:10:57,529 LEVERAGING THE FACT THAT 5686 03:10:57,529 --> 03:10:58,530 TELEHEALTH IS MORE COMMONLY USED 5687 03:10:58,530 --> 03:11:02,333 NOW, SO THIS MIGHT CREATE 5688 03:11:02,333 --> 03:11:02,867 OPPORTUNITIES FOR CLINICAL 5689 03:11:02,867 --> 03:11:04,369 TRIALS THAT ARE BEING LED BY 5690 03:11:04,369 --> 03:11:06,971 ACADEMIC MEDICAL CENTERS TO 5691 03:11:06,971 --> 03:11:08,406 REALLY THINK ABOUT ENGAGING MORE 5692 03:11:08,406 --> 03:11:13,278 OF THE RURAL POPULATION, USING 5693 03:11:13,278 --> 03:11:16,448 TETELEHEALTH APPROACHES WHICH AE 5694 03:11:16,448 --> 03:11:17,515 NOW MORE COMMONLY USED. 5695 03:11:17,515 --> 03:11:19,350 I THINK THERE ARE SOME ISSUES 5696 03:11:19,350 --> 03:11:21,653 AMONG THE DIGITAL DIVIDE AND 5697 03:11:21,653 --> 03:11:23,621 SOME INDIVIDUALS FROM RURAL 5698 03:11:23,621 --> 03:11:25,890 AREAS NOT HAVING AS MUCH ACCESS 5699 03:11:25,890 --> 03:11:27,292 TO INTERNET CONNECTIONS THAT 5700 03:11:27,292 --> 03:11:28,193 MIGHT FACILITATE USE OF 5701 03:11:28,193 --> 03:11:29,861 TELEHEALTH, BUT I THINK WE CAN 5702 03:11:29,861 --> 03:11:31,496 GET AROUND THAT BY PERHAPS USING 5703 03:11:31,496 --> 03:11:32,931 TELEHEALTH IN CLINICAL SETTINGS 5704 03:11:32,931 --> 03:11:34,199 WHERE INTERNET ACCESS WOULD BE 5705 03:11:34,199 --> 03:11:36,601 KNOWN TO BE AVAILABLE AND SO 5706 03:11:36,601 --> 03:11:37,268 FORTH. 5707 03:11:37,268 --> 03:11:38,703 I THINK THERE'S ALSO SOME 5708 03:11:38,703 --> 03:11:39,771 ADDITIONAL KIND OF HEADWAY THAT 5709 03:11:39,771 --> 03:11:42,874 COULD BE MADE IN TERMS OF 5710 03:11:42,874 --> 03:11:43,475 CREATING APPS, SO THESE APPS 5711 03:11:43,475 --> 03:11:44,509 COULD BE LINKED TO THESE 5712 03:11:44,509 --> 03:11:47,145 NATIONAL TRACKING SYSTEMS SO 5713 03:11:47,145 --> 03:11:49,114 THAT PHYSICIANS COULD HAVE A 5714 03:11:49,114 --> 03:11:51,616 VERY ACCESSIBLE PLACE TO LOOK 5715 03:11:51,616 --> 03:11:53,485 FOR CLINICAL TRIALS OR TO TYPE 5716 03:11:53,485 --> 03:11:54,686 IN THE PATIENT'S CONDITION OR 5717 03:11:54,686 --> 03:11:56,721 STAGE OF DISEASE TO REALLY SEE 5718 03:11:56,721 --> 03:11:57,789 WHAT TYPES OF CLINICAL TRIALS 5719 03:11:57,789 --> 03:11:59,157 THAT PATIENT MIGHT BE ELIGIBLE 5720 03:11:59,157 --> 03:11:59,457 FOR. 5721 03:11:59,457 --> 03:12:00,925 SO I THINK THERE'S SOME 5722 03:12:00,925 --> 03:12:02,127 ADDITIONAL HEADWAY THAT COULD BE 5723 03:12:02,127 --> 03:12:03,561 MADE IN TERMS OF CREATING THE 5724 03:12:03,561 --> 03:12:05,530 DIGITAL TOOLS THAT CAN HELP 5725 03:12:05,530 --> 03:12:08,767 FACILITATE ENROLLMENT. 5726 03:12:08,767 --> 03:12:10,602 >> THANK YOU SO MUCH, 5727 03:12:10,602 --> 03:12:10,935 DR. CORONADO. 5728 03:12:10,935 --> 03:12:12,337 WE HAVE TIME FOR ONE MORE 5729 03:12:12,337 --> 03:12:13,605 QUESTION AND WE'LL DO IT FROM 5730 03:12:13,605 --> 03:12:13,938 THE AUDIENCE. 5731 03:12:13,938 --> 03:12:16,107 SO THIS QUESTION IS FOR 5732 03:12:16,107 --> 03:12:18,076 DR. CACERES. 5733 03:12:18,076 --> 03:12:20,078 SO DOCTOR, DO YOU HAVE SPECIFIC 5734 03:12:20,078 --> 03:12:21,312 RESOURCES YOU CAN RECOMMEND FOR 5735 03:12:21,312 --> 03:12:23,281 RESEARCHERS WHO WANT TO BE 5736 03:12:23,281 --> 03:12:28,086 ALLIES TO THE LGBT PLUS 5737 03:12:28,086 --> 03:12:28,887 COMMUNITY? 5738 03:12:28,887 --> 03:12:29,888 AS YOU KNOW, THIS COMMUNITY CAN 5739 03:12:29,888 --> 03:12:31,856 BE WARY OF PEOPLE WHO WANT TO BE 5740 03:12:31,856 --> 03:12:34,759 VISIBLE AS ALLIES WITHOUT 5741 03:12:34,759 --> 03:12:36,728 ACTUALLY HAVE BEEN EDUCATIONAL 5742 03:12:36,728 --> 03:12:39,564 AWARENESS ABOUT SGM. 5743 03:12:39,564 --> 03:12:40,698 >> SO THAT'S A VERY GOOD 5744 03:12:40,698 --> 03:12:41,332 QUESTION. 5745 03:12:41,332 --> 03:12:43,935 I THINK WE HAVE MANY MORE 5746 03:12:43,935 --> 03:12:46,004 RESOURCES AROUND SORT OF 5747 03:12:46,004 --> 03:12:46,571 CREATING INCLUSIVE CLINICAL 5748 03:12:46,571 --> 03:12:47,972 ENVIRONMENTS FOR SEXUAL AND 5749 03:12:47,972 --> 03:12:49,440 GENDER MINORITY PEOPLE AND FEWER 5750 03:12:49,440 --> 03:12:50,208 RESOURCES AROUND SORT OF 5751 03:12:50,208 --> 03:12:51,943 CLINICAL RESEARCH, BUT I THINK A 5752 03:12:51,943 --> 03:12:55,713 LOT OF THE RECOMMENDATIONS 5753 03:12:55,713 --> 03:12:56,347 PROVIDED BY THE NATIONAL ACAD HE 5754 03:12:56,347 --> 03:12:57,816 MOO OF MEDICINE HOW TO REPORT I 5755 03:12:57,816 --> 03:13:00,051 THINK IN 2020, THEY PROVIDED 5756 03:13:00,051 --> 03:13:00,685 SOME RECOMMENDATIONS THAT COULD 5757 03:13:00,685 --> 03:13:01,820 BE APPLIED, RECOMMENDATIONS FOR 5758 03:13:01,820 --> 03:13:02,887 CLINICAL PRACTICE COULD ALSO BE 5759 03:13:02,887 --> 03:13:04,222 APPLIED FOR RESEARCH. 5760 03:13:04,222 --> 03:13:06,224 AS WELL AS THE GLMA, WHICH IS 5761 03:13:06,224 --> 03:13:08,960 THE HEALTH PROFESSIONALS 5762 03:13:08,960 --> 03:13:10,495 ADVANCING LGBTQ QUALITY, IT'S A 5763 03:13:10,495 --> 03:13:11,529 NATIONAL ORGANIZATION THAT HAS A 5764 03:13:11,529 --> 03:13:13,064 FEW RESOURCES AROUND FOR 5765 03:13:13,064 --> 03:13:14,365 PROVIDERS AND RESEARCHERS. 5766 03:13:14,365 --> 03:13:16,134 BUT I THINK THE BIGGEST THING 5767 03:13:16,134 --> 03:13:18,036 REALLY IS TO ENSURE THAT IF YOU 5768 03:13:18,036 --> 03:13:18,670 ARE -- PARTICULARLY IF YOU'RE 5769 03:13:18,670 --> 03:13:20,905 NOT A MEMBER OF ANY OF THESE 5770 03:13:20,905 --> 03:13:21,840 COMMUNITIES WE'RE TALKING ABOUT 5771 03:13:21,840 --> 03:13:23,041 TODAY BUT INTERESTED IN DOING 5772 03:13:23,041 --> 03:13:24,242 RESEARCH ON THE POPULATION, TO 5773 03:13:24,242 --> 03:13:25,009 PARTNER WITH INDIVIDUALS THAT 5774 03:13:25,009 --> 03:13:26,444 ARE FROM THAT COMMUNITY SO THAT 5775 03:13:26,444 --> 03:13:27,478 THE WORK -- IN A WAY THAT THE 5776 03:13:27,478 --> 03:13:28,913 WORK IS NOT EXTRACTING FROM THE 5777 03:13:28,913 --> 03:13:30,582 COMMUNITY BUT ACTUALLY ENHANCING 5778 03:13:30,582 --> 03:13:31,716 AND BRINGING YOUR OWN STRENGTHS 5779 03:13:31,716 --> 03:13:33,318 AS A RESEARCHER OR CLINICIAN TO 5780 03:13:33,318 --> 03:13:34,319 IMPROVE THE HEALTH OF THOSE 5781 03:13:34,319 --> 03:13:35,353 GROUPS. 5782 03:13:35,353 --> 03:13:39,190 I THINK THE MORE YOU CAN DO TO 5783 03:13:39,190 --> 03:13:40,391 HAVE A RESEARCH WEBSITE WHERE 5784 03:13:40,391 --> 03:13:42,260 PEOPLE CAN ACTUALLY GO ON YOUR 5785 03:13:42,260 --> 03:13:43,862 WEBSITE, SEE WHO'S WORKING ON 5786 03:13:43,862 --> 03:13:44,729 YOUR RESEARCH TEAM, THE MORE 5787 03:13:44,729 --> 03:13:46,698 THAT YOU CAN SORT OF HAVE 5788 03:13:46,698 --> 03:13:47,966 MATERIALS AND RESOURCES THAT 5789 03:13:47,966 --> 03:13:49,400 PEOPLE CAN ACTUALLY ACCESS WHILE 5790 03:13:49,400 --> 03:13:50,702 THEY'RE DECIDING IF THEY WANT TO 5791 03:13:50,702 --> 03:13:51,469 PARTICIPATE IN THE STUDY OR 5792 03:13:51,469 --> 03:13:52,837 BEFORE THEY DO THAT, I THINK CAN 5793 03:13:52,837 --> 03:13:54,706 DO A LOT TO SORT OF ENHANCE 5794 03:13:54,706 --> 03:13:55,540 VISIBILITY AND TRUST IN THE 5795 03:13:55,540 --> 03:13:57,242 RESEARCH TEAM. 5796 03:13:57,242 --> 03:14:01,212 >> THANKS SO MUCH, DR. CACERES. 5797 03:14:01,212 --> 03:14:03,915 SO THAT CONCLUDES OUR PANEL FOR 5798 03:14:03,915 --> 03:14:04,182 TODAY. 5799 03:14:04,182 --> 03:14:06,184 I WANT TO THANK ALL OF OUR 5800 03:14:06,184 --> 03:14:07,285 PANELISTS FOR THEIR TIME AND ALL 5801 03:14:07,285 --> 03:14:08,820 THEIR EXCELLENT INPUT. 5802 03:14:08,820 --> 03:14:11,990 WE ARE GOING TO TAKE A 5803 03:14:11,990 --> 03:14:13,892 15-MINUTE-ISH BREAK, AND THEN 5804 03:14:13,892 --> 03:14:15,693 WE'LL COME BACK FOR OUR NEXT 5805 03:14:15,693 --> 03:14:15,894 PANEL. 5806 03:14:15,894 --> 03:14:20,215 THANK YOU, EVERYONE. 5807 03:14:20,966 --> 03:14:22,034 GOOD AFTERNOON, EVERYONE. 5808 03:14:22,034 --> 03:14:24,103 IT'S MY PLEASURE TO BRING TO YOU 5809 03:14:24,103 --> 03:14:25,971 ALL SESSION 5, COLLABORATOR 5810 03:14:25,971 --> 03:14:27,540 PERSPECTIVES AND PANEL 5811 03:14:27,540 --> 03:14:28,107 DISCUSSION FOR PANEL 1, 5812 03:14:28,107 --> 03:14:29,075 COMMUNITY AND PATIENT 5813 03:14:29,075 --> 03:14:29,775 PERSPECTIVES. 5814 03:14:29,775 --> 03:14:31,610 MY NAME IS DR. KARRIEM WATSON, 5815 03:14:31,610 --> 03:14:33,279 CHIEF ENGAGEMENT OFFICER FOR THE 5816 03:14:33,279 --> 03:14:35,081 NIH ALL-OF-US RESEARCH PROGRAM 5817 03:14:35,081 --> 03:14:37,383 AND IT IS MY HONOR AND PRIVILEGE 5818 03:14:37,383 --> 03:14:42,054 TO BE JOINED BY DR. DEBBIE 5819 03:14:42,054 --> 03:14:43,589 VITALIS, WITH THE NHLBI. 5820 03:14:43,589 --> 03:14:45,825 WE ALSO HAVE FOUR AMAZING 5821 03:14:45,825 --> 03:14:46,392 PANELISTS JOINING US TODAY. 5822 03:14:46,392 --> 03:14:47,493 I'M GOING TO INTRODUCE EACH OF 5823 03:14:47,493 --> 03:14:49,028 OUR PANELISTS AND AFTER I 5824 03:14:49,028 --> 03:14:50,362 INTRODUCE THOSE PANELISTS I'M 5825 03:14:50,362 --> 03:14:51,897 GOING TO ASK THEM TO EACH 5826 03:14:51,897 --> 03:14:54,834 PROVIDE A ONE MINUTE OVERVIEW 5827 03:14:54,834 --> 03:14:56,702 THROUGH THEIR LENS ON THE 5828 03:14:56,702 --> 03:14:57,937 IMPORTANCE OF COMMUNITY 5829 03:14:57,937 --> 03:14:59,171 COLLABORATIONS AND FROM THE 5830 03:14:59,171 --> 03:15:00,506 PATIENT AND COMMUNITY 5831 03:15:00,506 --> 03:15:00,940 PERSPECTIVE. 5832 03:15:00,940 --> 03:15:04,443 SO WE'RE GOING TO START WITH 5833 03:15:04,443 --> 03:15:09,248 REVEREND DR. KENDRICK CURRY, 5834 03:15:09,248 --> 03:15:10,950 MEMBER OF THE COMMUNITY 5835 03:15:10,950 --> 03:15:12,418 ENGAGEMENT ALLIANCE AGAINST 5836 03:15:12,418 --> 03:15:14,787 COVID-19 DISPARITIES AND 5837 03:15:14,787 --> 03:15:15,888 PENNSYLVANIA AVENUE BAPTIST 5838 03:15:15,888 --> 03:15:16,122 CHURCH. 5839 03:15:16,122 --> 03:15:18,791 >> GOOD AFTERNOON, EVERYONE. 5840 03:15:18,791 --> 03:15:21,293 I AM KENDRICK CURRY, PASTOR OF 5841 03:15:21,293 --> 03:15:22,728 PENNSYLVANIA AVENUE BAPTIST 5842 03:15:22,728 --> 03:15:25,931 CHURCH AND EXCITED TO BE WITH 5843 03:15:25,931 --> 03:15:27,600 YOU TODAY. 5844 03:15:27,600 --> 03:15:29,668 I'M PART OF THE COMMUNITY 5845 03:15:29,668 --> 03:15:30,770 ENGAGEMENT ALLIANCE AGAINST 5846 03:15:30,770 --> 03:15:32,738 COVID-19 DISPARITIES. 5847 03:15:32,738 --> 03:15:34,807 AND I'M JUST EXCITED TO BE HERE 5848 03:15:34,807 --> 03:15:36,308 AND HAVE SOME GREAT DISCUSSION. 5849 03:15:36,308 --> 03:15:41,680 I WILL SAY JUST BRIEFLY THAT WE 5850 03:15:41,680 --> 03:15:43,115 ARE IN DESPERATE NEED OF MAKING 5851 03:15:43,115 --> 03:15:46,218 SURE THAT WE HAVE COLLABORATION 5852 03:15:46,218 --> 03:15:47,753 WITH THE COMMUNITY. 5853 03:15:47,753 --> 03:15:51,824 AND THE COMMUNITY IS ESSENTIAL 5854 03:15:51,824 --> 03:15:54,760 FOR MAKING SURE THAT WE HAVE 5855 03:15:54,760 --> 03:15:57,797 CONNECTIVITY TO A RESEARCH 5856 03:15:57,797 --> 03:16:00,065 POPULATION THAT IS OFTENTIMES 5857 03:16:00,065 --> 03:16:02,034 OVERLOOKED AND MISSED QUITE 5858 03:16:02,034 --> 03:16:03,002 FREQUENTLY IN RESEARCH. 5859 03:16:03,002 --> 03:16:04,136 SO THIS IS AN IMPORTANT 5860 03:16:04,136 --> 03:16:06,939 CONVERSATION THAT WE'RE HAVING 5861 03:16:06,939 --> 03:16:07,706 TODAY. 5862 03:16:07,706 --> 03:16:08,674 >> THANK YOU SO MUCH. 5863 03:16:08,674 --> 03:16:17,082 NEXT WE HAVE MISERY KEY FARLEY,. 5864 03:16:17,082 --> 03:16:18,450 >> GOOD AFTERNOON, EVERYONE. 5865 03:16:18,450 --> 03:16:19,518 IT'S GREAT TO BE HERE WITH YOU 5866 03:16:19,518 --> 03:16:21,287 GUYS AND SEE SOME FRIENDS ON THE 5867 03:16:21,287 --> 03:16:22,988 ZOOM. 5868 03:16:22,988 --> 03:16:24,290 CLEARLY I REPRESENT THE PATIENT 5869 03:16:24,290 --> 03:16:24,857 VOICE. 5870 03:16:24,857 --> 03:16:28,727 I'M AN 11-YEAR SURVIVOR OF 5871 03:16:28,727 --> 03:16:29,328 TRIPLE NEGATIVE BREAST CANCER 5872 03:16:29,328 --> 03:16:30,596 AND I DON'T THINK WE CAN MAKE 5873 03:16:30,596 --> 03:16:32,565 ANY VALID HEALTH DECISIONS 5874 03:16:32,565 --> 03:16:35,000 WITHOUT THE PATIENT VOICE, AND 5875 03:16:35,000 --> 03:16:37,102 WE ARE THE VOICE OF TRUST OF OUR 5876 03:16:37,102 --> 03:16:37,770 PATIENTS. 5877 03:16:37,770 --> 03:16:38,838 PATIENTS LISTEN TO US MORE THAN 5878 03:16:38,838 --> 03:16:41,106 THEY LISTEN TO DOCTORS, 5879 03:16:41,106 --> 03:16:42,408 RESEARCHERS OR ANYBODY IN THE 5880 03:16:42,408 --> 03:16:42,842 ECOSYSTEM. 5881 03:16:42,842 --> 03:16:44,143 BECAUSE WE HAVE A LIVED 5882 03:16:44,143 --> 03:16:45,377 EXPERIENCE AND CAN SPEAK FROM 5883 03:16:45,377 --> 03:16:47,279 OUR HEARTS AS TO WHAT WE WENT 5884 03:16:47,279 --> 03:16:48,047 THROUGH. 5885 03:16:48,047 --> 03:16:49,281 AND WE'VE DONE A LOT OF WORK 5886 03:16:49,281 --> 03:16:52,218 WHICH I CAN SPEAK TO IN A FEW 5887 03:16:52,218 --> 03:16:53,819 MINUTES ABOUT KIND OF HELPING 5888 03:16:53,819 --> 03:16:56,322 BLACK WOMEN UNDERSTAND THE 5889 03:16:56,322 --> 03:16:57,623 CRITICAL NATURE OF CLINICAL 5890 03:16:57,623 --> 03:17:00,860 TRIAL PARTICIPATION AND OUR BEST 5891 03:17:00,860 --> 03:17:06,165 MESSAGES COME FROM THE VOICE -- 5892 03:17:06,165 --> 03:17:10,169 >> THANK YOU SO MUCH FOR THAT 5893 03:17:10,169 --> 03:17:13,372 FRAMING. 5894 03:17:13,372 --> 03:17:15,641 >> GOOD AFTERNOON, EVERYONE. 5895 03:17:15,641 --> 03:17:17,343 LIKE MY FELLOW PANELISTS, I AM 5896 03:17:17,343 --> 03:17:18,744 SO EXCITED TO BE WITH ALL OF YOU 5897 03:17:18,744 --> 03:17:19,078 TODAY. 5898 03:17:19,078 --> 03:17:22,081 AS WE THINK ABOUT THE IMPORTANCE 5899 03:17:22,081 --> 03:17:23,182 OF PARTNERSHIPS WITH 5900 03:17:23,182 --> 03:17:24,216 COMMUNITY-BASED ORGANIZATIONS, 5901 03:17:24,216 --> 03:17:26,252 WE HAVE TO UNDERSTAND THAT IT'S 5902 03:17:26,252 --> 03:17:27,653 ACTUALLY IN COMMUNITIES WHERE 5903 03:17:27,653 --> 03:17:29,054 HEALTH ACTUALLY TAKES PLACE. 5904 03:17:29,054 --> 03:17:31,257 IT IS NOT WITHIN THE FOUR WALS 5905 03:17:31,257 --> 03:17:33,125 OF THE HEALTHCARE SYSTEM BUT THE 5906 03:17:33,125 --> 03:17:33,559 COMMUNITY ITSELF. 5907 03:17:33,559 --> 03:17:35,027 SO IF THAT IS WHERE HEALTH IS 5908 03:17:35,027 --> 03:17:37,263 TAKING PLACE, THEN WE REALLY 5909 03:17:37,263 --> 03:17:38,430 CAN'T THINK ABOUT A PATH FORWARD 5910 03:17:38,430 --> 03:17:40,799 THAT IS VOID OF COMMUNITY 5911 03:17:40,799 --> 03:17:41,100 ENGAGEMENT. 5912 03:17:41,100 --> 03:17:42,968 AND THAT IS COMMUNITY ENGAGEMENT 5913 03:17:42,968 --> 03:17:46,372 WITH COMMUNITY-BASED 5914 03:17:46,372 --> 03:17:47,439 ORGANIZATIONS, WITH OUR 5915 03:17:47,439 --> 03:17:48,941 FAITH-BASED ORGANIZATIONS, WITH 5916 03:17:48,941 --> 03:17:50,342 ORGANIZATIONS LIKE RICKI AND 5917 03:17:50,342 --> 03:17:50,876 TOUCH. 5918 03:17:50,876 --> 03:17:52,311 SO AS WE THINK ABOUT OUR PATH 5919 03:17:52,311 --> 03:17:54,146 FORWARD, THIS NEW NARRATIVE 5920 03:17:54,146 --> 03:17:54,914 AROUND CLINICAL RESEARCH AND 5921 03:17:54,914 --> 03:17:58,083 CLINICAL TRIAL DESIGN, WE CAN'T 5922 03:17:58,083 --> 03:17:59,084 THINK ABOUT THAT WITHOUT MAKING 5923 03:17:59,084 --> 03:18:00,452 SURE THAT WE CREATE SPACE IN 5924 03:18:00,452 --> 03:18:01,954 THIS NARRATIVE FOR COMMUNITIES 5925 03:18:01,954 --> 03:18:02,955 TO BE ENGAGED. 5926 03:18:02,955 --> 03:18:05,891 AND THAT'S NOT A ONE-TIME 5927 03:18:05,891 --> 03:18:07,293 ENGAGEMENT, THAT'S A CONTINUAL 5928 03:18:07,293 --> 03:18:07,593 ENGAGEMENT. 5929 03:18:07,593 --> 03:18:08,928 SO WE REALLY HAVE TO THINK ABOUT 5930 03:18:08,928 --> 03:18:10,596 HOW DO WE MAKE SURE THAT 5931 03:18:10,596 --> 03:18:12,298 COMMUNITY ENGAGEMENT BECOMES 5932 03:18:12,298 --> 03:18:14,066 PERPETUAL AND IS ACTUALLY ACTIVE 5933 03:18:14,066 --> 03:18:16,835 IN THE ENTIRE PROCESS FOR 5934 03:18:16,835 --> 03:18:17,469 SOMEONE'S JOURNEY AS THEY THINK 5935 03:18:17,469 --> 03:18:18,604 ABOUT THEIR CLINICAL EXPERIENCE. 5936 03:18:18,604 --> 03:18:21,907 SO I'M LOOKING FORWARD TO OUR 5937 03:18:21,907 --> 03:18:23,108 CONVERSATION. 5938 03:18:23,108 --> 03:18:24,677 >> THANK YOU SO MUCH, SHONTA. 5939 03:18:24,677 --> 03:18:25,878 I LOVE THE FACT THAT YOU 5940 03:18:25,878 --> 03:18:27,079 HIGHLIGHTED THE IMPORTANCE OF 5941 03:18:27,079 --> 03:18:28,080 CONTINUITY, OF THE FACT THAT 5942 03:18:28,080 --> 03:18:29,915 THIS IS CONTINUAL. 5943 03:18:29,915 --> 03:18:33,085 WE'RE NOW GOING TO HAVE 5944 03:18:33,085 --> 03:18:34,086 MS. ALISSA TORRES. 5945 03:18:34,086 --> 03:18:35,487 >> HELLO, EVERYONE. 5946 03:18:35,487 --> 03:18:37,523 FLIEM MY NAME IS ALISSA TORRES, 5947 03:18:37,523 --> 03:18:39,058 PRONOUNS ARE SHE/HER. 5948 03:18:39,058 --> 03:18:40,693 AS A VISUAL DESCRIPTION I AM A 5949 03:18:40,693 --> 03:18:43,595 BROWN SKINNED LATINA WOMAN 5950 03:18:43,595 --> 03:18:44,797 WEARING BLACK RIMMED GLASSES AND 5951 03:18:44,797 --> 03:18:46,632 I HAVE MY HAIR BACK IN A BUN. 5952 03:18:46,632 --> 03:18:48,033 IT IS REALLY IMPORTANT THAT WE 5953 03:18:48,033 --> 03:18:48,801 ARE ALL HERE HAVING THIS 5954 03:18:48,801 --> 03:18:50,336 DISCUSSION TODAY. 5955 03:18:50,336 --> 03:18:52,504 ESPECIALLY AROUND THE IMPORTANCE 5956 03:18:52,504 --> 03:18:54,606 OF COMMUNITY-BASED RESEARCH. 5957 03:18:54,606 --> 03:18:58,310 IT'S VITAL THAT WE ALL HAVE THE 5958 03:18:58,310 --> 03:19:00,279 ABILITY TO NOT JUST REACH OUT TO 5959 03:19:00,279 --> 03:19:02,181 COMMUNITIES WHO HAVE BEEN 5960 03:19:02,181 --> 03:19:02,982 UNDERREPRESENTED AND 5961 03:19:02,982 --> 03:19:04,717 UNDERSERVED, BUT ACTUALLY TO 5962 03:19:04,717 --> 03:19:05,985 INVOLVE THESE COMMUNITIES FROM 5963 03:19:05,985 --> 03:19:08,454 THE GET-GO WITH ALL OF THE 5964 03:19:08,454 --> 03:19:10,389 RESEARCH AND ALL OF THE CONTENT 5965 03:19:10,389 --> 03:19:12,358 THAT WE AS PROFESSIONALS CREATE. 5966 03:19:12,358 --> 03:19:14,827 SO I'M REALLY EXCITED TO BE HERE 5967 03:19:14,827 --> 03:19:16,228 AND EXCITED FOR THIS 5968 03:19:16,228 --> 03:19:16,862 CONVERSATION. 5969 03:19:16,862 --> 03:19:18,630 IT'S A MUCH NEEDED CONVERSATION 5970 03:19:18,630 --> 03:19:19,932 AND LIKE I SAID, IT'S IMPORTANT 5971 03:19:19,932 --> 03:19:21,433 THAT WE ALWAYS PUT OUR 5972 03:19:21,433 --> 03:19:22,835 COMMUNITIES FIRST AND THAT THEY 5973 03:19:22,835 --> 03:19:24,937 ARE THE ONES HELPING TO INITIATE 5974 03:19:24,937 --> 03:19:26,238 OUR RESEARCH AND THE WORK THAT 5975 03:19:26,238 --> 03:19:27,973 WE DO. 5976 03:19:27,973 --> 03:19:28,941 >> THANK YOU SO MUCH, 5977 03:19:28,941 --> 03:19:29,441 MS. TORRES. 5978 03:19:29,441 --> 03:19:30,809 AND I'M GOING TO START WITH 5979 03:19:30,809 --> 03:19:32,311 REVEREND CURRY AND KIND OF 5980 03:19:32,311 --> 03:19:33,879 POUNCING OFF OF WHAT MS. TORRES 5981 03:19:33,879 --> 03:19:35,114 SAID ABOUT THIS CONCEPT OF 5982 03:19:35,114 --> 03:19:36,248 PUTTING THE COMMUNITIES FIRST. 5983 03:19:36,248 --> 03:19:37,249 WITHIN YOUR SPIRIT OF INFLUENCE 5984 03:19:37,249 --> 03:19:39,251 AND THE WORK THAT YOU'VE DONE 5985 03:19:39,251 --> 03:19:40,652 WITH CEAL AND OTHERS, WHAT ARE 5986 03:19:40,652 --> 03:19:41,854 SOME BEST PRACTICES YOU'VE SEEN 5987 03:19:41,854 --> 03:19:44,123 IN HOW WE CAN CENTER COMMUNITY 5988 03:19:44,123 --> 03:19:47,426 IN THE PATIENT VOICE IN THIS 5989 03:19:47,426 --> 03:19:47,626 WORK? 5990 03:19:47,626 --> 03:19:49,395 >> EXCELLENT QUESTION. 5991 03:19:49,395 --> 03:19:53,232 ONE OF THE WAYS YOU BEGIN TO 5992 03:19:53,232 --> 03:19:54,566 THINK THROUGH THIS WHOLE PIECE 5993 03:19:54,566 --> 03:19:56,468 ABOUT CENTERING THE VOICES IS 5994 03:19:56,468 --> 03:19:58,537 BEING A PARTICIPANT AMONG THE 5995 03:19:58,537 --> 03:19:59,405 COMMUNITY. 5996 03:19:59,405 --> 03:20:03,142 I OFTEN SAY THAT, YOU KNOW, THE 5997 03:20:03,142 --> 03:20:04,510 COMMUNITY IS ACTUALLY VERY 5998 03:20:04,510 --> 03:20:07,046 LOYAL, IT HAS A LONG MEMORY. 5999 03:20:07,046 --> 03:20:10,182 AND IF YOU'RE WILLING TO GO IN 6000 03:20:10,182 --> 03:20:10,949 AND PARTICIPATE WITH THE 6001 03:20:10,949 --> 03:20:12,251 COMMUNITY, AND TAKE THE TIME 6002 03:20:12,251 --> 03:20:16,622 THAT IT NEEDS TO FRIEND-RAISE, 6003 03:20:16,622 --> 03:20:19,124 IF YOU WILL, AND DEVELOP DEEP 6004 03:20:19,124 --> 03:20:20,225 ABIDING RELATIONSHIPS, THEN YOU 6005 03:20:20,225 --> 03:20:24,563 HAVE CREDIBILITY TO SPEAK. 6006 03:20:24,563 --> 03:20:25,664 AND WHEN YOU HAVE THAT 6007 03:20:25,664 --> 03:20:26,732 CREDIBILITY TO SPEAK, IT BECOMES 6008 03:20:26,732 --> 03:20:28,367 AN ENGAGEMENT. 6009 03:20:28,367 --> 03:20:30,135 IT IS NOT A ONE-WAY 6010 03:20:30,135 --> 03:20:30,469 CONVERSATION. 6011 03:20:30,469 --> 03:20:32,071 IT'S REALLY A CONVERSATION. 6012 03:20:32,071 --> 03:20:34,139 AND NOT JUST MONOLOGUE, BUT IT 6013 03:20:34,139 --> 03:20:36,642 BECOMES A DIALOGUE. 6014 03:20:36,642 --> 03:20:38,710 AND FOLK BEGIN TO TRUST YOU WHEN 6015 03:20:38,710 --> 03:20:40,245 WE CAN ENGAGE IN DIALOGUE. 6016 03:20:40,245 --> 03:20:42,114 THE MOST IMPORTANT THING IN 6017 03:20:42,114 --> 03:20:44,183 TERMS OF OUR DISCUSSION IS HOW 6018 03:20:44,183 --> 03:20:46,485 DO WE DO THIS INCLUSIVE 6019 03:20:46,485 --> 03:20:48,353 PARTICIPATION AND THINK ABOUT 6020 03:20:48,353 --> 03:20:50,456 CLINICAL TRIALS WITH, AS OPPOSED 6021 03:20:50,456 --> 03:20:54,326 TO TRYING TO DO SOMETHING TO A 6022 03:20:54,326 --> 03:20:54,760 COMMUNITY. 6023 03:20:54,760 --> 03:20:55,861 SO THE COMMUNITY IS ACTUALLY 6024 03:20:55,861 --> 03:20:57,396 SMARTER THAN YOU THINK. 6025 03:20:57,396 --> 03:20:59,498 AND THAT MOST PEOPLE REALIZE. 6026 03:20:59,498 --> 03:21:01,100 WE HAVE ALL SORTS OF FOLK IN THE 6027 03:21:01,100 --> 03:21:05,704 COMMUNITY THAT ARE REALLY PRETTY 6028 03:21:05,704 --> 03:21:07,039 ADEPT AT UNDERSTANDING THINGS IF 6029 03:21:07,039 --> 03:21:09,641 WE DO WHAT IS NECESSARY TO BUILD 6030 03:21:09,641 --> 03:21:12,778 THE RELATIONSHIP, HAVE THE 6031 03:21:12,778 --> 03:21:14,613 DIALOGUE, AND OH, BY THE WAY, 6032 03:21:14,613 --> 03:21:16,148 PUT RIGHT TRANSLATORS IN THE 6033 03:21:16,148 --> 03:21:17,883 CONTEXT OF COMMUNITY SO THAT WE 6034 03:21:17,883 --> 03:21:20,419 CAN BUILD FROM GRASSROOTS TO 6035 03:21:20,419 --> 03:21:22,054 GRASSTOP, HAVING AN 6036 03:21:22,054 --> 03:21:23,889 UNDERSTANDING AND REALIZATION OF 6037 03:21:23,889 --> 03:21:26,291 THAT THE VOICE COMES LITERALLY 6038 03:21:26,291 --> 03:21:28,694 FROM THE COMMUNITY AND BUBBLES 6039 03:21:28,694 --> 03:21:29,027 UP. 6040 03:21:29,027 --> 03:21:30,662 AND I THINK THOSE ARE SOME OF 6041 03:21:30,662 --> 03:21:31,964 THE THINGS WE NEED TO DO, BUT I 6042 03:21:31,964 --> 03:21:34,566 THINK WE NEED TO LEAN IN WITH 6043 03:21:34,566 --> 03:21:35,901 SOME ADDITIONAL QUESTIONS AS 6044 03:21:35,901 --> 03:21:36,969 WELL, AND ONE OF THE MOST 6045 03:21:36,969 --> 03:21:39,905 PRESSING QUESTIONS IS, WHAT IS 6046 03:21:39,905 --> 03:21:43,642 AT STAKE IF WE DON'T ENGAGE THE 6047 03:21:43,642 --> 03:21:44,510 COMMUNITY? 6048 03:21:44,510 --> 03:21:47,045 BECAUSE IF WE DON'T ENGAGE THE 6049 03:21:47,045 --> 03:21:48,914 COMMUNITY, THEN WE WON'T GET THE 6050 03:21:48,914 --> 03:21:50,549 RESULTS IN CLINICAL TRIALS THAT 6051 03:21:50,549 --> 03:21:53,352 ARE HEALTHY AND HELPFUL TO BLACK 6052 03:21:53,352 --> 03:21:54,319 AND BROWN FOLK. 6053 03:21:54,319 --> 03:21:55,754 IF WE'RE REALLY GOING TO TALK 6054 03:21:55,754 --> 03:21:58,257 ABOUT THIS TODAY. 6055 03:21:58,257 --> 03:22:00,726 SO I'M VERY MUCH LOOKING AT HOW 6056 03:22:00,726 --> 03:22:01,960 WE BUILD TRUST, HOW WE PROVIDE 6057 03:22:01,960 --> 03:22:04,796 THE NECESSARY TRANSLATION, HOW 6058 03:22:04,796 --> 03:22:07,533 WE MAKE SURE THAT WE ARE 6059 03:22:07,533 --> 03:22:09,468 LISTENING AND DOING WHAT THE 6060 03:22:09,468 --> 03:22:12,838 COMMUNITY NEEDS IN TERMS OF 6061 03:22:12,838 --> 03:22:13,939 BRINGING FOLK TOGETHER AND HOW 6062 03:22:13,939 --> 03:22:15,707 WE'RE INCLUSIVE IN TERMS OF 6063 03:22:15,707 --> 03:22:18,443 MAKING SURE THAT EVERYONE IN THE 6064 03:22:18,443 --> 03:22:19,044 COMMUNITY IS HEARD. 6065 03:22:19,044 --> 03:22:20,579 SO WE CAN'T JUST SHOW UP ONE 6066 03:22:20,579 --> 03:22:20,913 TIME. 6067 03:22:20,913 --> 03:22:23,649 WE HAVE TO SHOW UP MULTIPLE 6068 03:22:23,649 --> 03:22:25,784 TIMES AND BE IN THE SPACE AND 6069 03:22:25,784 --> 03:22:27,119 LET THE COMMUNITY KNOW THAT 6070 03:22:27,119 --> 03:22:28,554 WE'RE NOT JUST THERE TO DO 6071 03:22:28,554 --> 03:22:30,289 SOMETHING TO THEM, BUT WE'RE 6072 03:22:30,289 --> 03:22:33,058 HERE TO DO SOMETHING WITH, SO 6073 03:22:33,058 --> 03:22:34,526 THAT WE'LL BE ABLE TO MOVE 6074 03:22:34,526 --> 03:22:36,395 FORWARD AND TRANSFORM THE LIVES 6075 03:22:36,395 --> 03:22:37,930 OF HUMAN BEINGS IN THE CONTEXT 6076 03:22:37,930 --> 03:22:40,299 OF OUR COMMUNITY. 6077 03:22:40,299 --> 03:22:42,067 >> THANK YOU SO MUCH FOR THAT. 6078 03:22:42,067 --> 03:22:43,835 I'M GOING TO COME TO YOU NEXT 6079 03:22:43,835 --> 03:22:45,871 BECAUSE THAT CONCEPT OF ENGAGING 6080 03:22:45,871 --> 03:22:46,738 WITH IS SOMETHING YOU'VE BEEN 6081 03:22:46,738 --> 03:22:49,241 ABLE TO DO WITH THE TRIAL 6082 03:22:49,241 --> 03:22:51,109 MOVEMENT AND THE STRATEGIES YOU 6083 03:22:51,109 --> 03:22:52,711 AND YOUR ORGANIZATION HAVE TAKEN 6084 03:22:52,711 --> 03:22:53,612 TO WORK WITH BLACK WOMEN. 6085 03:22:53,612 --> 03:22:55,047 THIS CONCEPT IN THE EARLY YEAR 6086 03:22:55,047 --> 03:22:56,348 PANEL CAME UP WITH A POPULATION 6087 03:22:56,348 --> 03:22:57,649 THAT ARE USUALLY 6088 03:22:57,649 --> 03:22:59,585 UNDERREPRESENTED IN BIOMEDICAL 6089 03:22:59,585 --> 03:23:01,353 RESEARCH AND WE'RE MOVING AWAY, 6090 03:23:01,353 --> 03:23:03,188 AND I LOVE THAT, FROM THAT HARD 6091 03:23:03,188 --> 03:23:03,855 TO REACH POPULATION. 6092 03:23:03,855 --> 03:23:06,058 AS A CANCER DISPARITIES 6093 03:23:06,058 --> 03:23:07,960 RESEARCHER, I ENGAGE AFRICAN 6094 03:23:07,960 --> 03:23:08,860 AMERICAN MEN IN MY WORK. 6095 03:23:08,860 --> 03:23:10,229 PEOPLE WOULD SAY KARRIEM, HOW 6096 03:23:10,229 --> 03:23:12,130 ARE YOU GOING TO REACH YOUR 6097 03:23:12,130 --> 03:23:13,799 ENROLLMENT CRITERIA BECAUSE 6098 03:23:13,799 --> 03:23:14,700 AFRICAN AMERICAN MEN ARE HARD TO 6099 03:23:14,700 --> 03:23:15,467 REACH. 6100 03:23:15,467 --> 03:23:18,503 FIRST OF ALL I SAID I AM AN 6101 03:23:18,503 --> 03:23:19,871 AFRICAN AMERICAN MAN, I'M NOT 6102 03:23:19,871 --> 03:23:22,140 HARD TO REACH, SO REVEREND CURRY 6103 03:23:22,140 --> 03:23:22,908 TALKED ABOUT THE IMPORTANCE OF 6104 03:23:22,908 --> 03:23:23,542 DOING RESEARCH WITH. 6105 03:23:23,542 --> 03:23:25,377 AND I THINK YOU HAVE SOME GREAT 6106 03:23:25,377 --> 03:23:26,812 EXAMPLES OF THAT, MS. FAIRLEY. 6107 03:23:26,812 --> 03:23:28,547 >> I LOVE THAT HE CHANGED THE 6108 03:23:28,547 --> 03:23:32,884 PREPOSITION WITH, AND WE DO SAY 6109 03:23:32,884 --> 03:23:34,519 WITH -- WE ALSO CHANGED THE 6110 03:23:34,519 --> 03:23:35,721 PRONOUNCE FROM GOING TO 6111 03:23:35,721 --> 03:23:37,055 DR. GOOGLE AND SEEING YOU AND 6112 03:23:37,055 --> 03:23:40,726 THEY TO WE AND US. 6113 03:23:40,726 --> 03:23:42,794 SO WE REALLY STARTED ON THIS 6114 03:23:42,794 --> 03:23:44,229 PATH ABOUT TWO YEARS AGO, WE DID 6115 03:23:44,229 --> 03:23:46,031 A RESEARCH STUDY TO UNDERSTAND 6116 03:23:46,031 --> 03:23:48,033 WHAT WAS PREVENTING BLAME WOMEN 6117 03:23:48,033 --> 03:23:49,434 FROM PARTICIPATING IN RESEARCH. 6118 03:23:49,434 --> 03:23:51,436 EVERYBODY WANTS TO BLAME IT ON 6119 03:23:51,436 --> 03:23:52,738 THE SOCIAL DETERMINANTS OF 6120 03:23:52,738 --> 03:23:54,373 HEALTH AND THEY'RE A FACTOR BUT 6121 03:23:54,373 --> 03:24:00,112 NOT THE MAIN ONE, BUT THE REAL 6122 03:24:00,112 --> 03:24:02,314 FACTOR, THE REAL FEAR IS FEAR OF 6123 03:24:02,314 --> 03:24:03,849 THE UNKNOWN. 6124 03:24:03,849 --> 03:24:04,516 THEY DON'T UNDERSTAND THE 6125 03:24:04,516 --> 03:24:05,050 SCIENCE. 6126 03:24:05,050 --> 03:24:07,085 THEY DON'T UNDERSTAND WHAT SPHAN 6127 03:24:07,085 --> 03:24:09,955 DARSTANDARD OF CARE IS. 6128 03:24:09,955 --> 03:24:15,394 WE DO DON'T REALLY UNDERSTAND TT 6129 03:24:15,394 --> 03:24:16,828 THAT ADVIL YOU TOOK LAST WEEK 6130 03:24:16,828 --> 03:24:18,230 WAS IN THE CLINICAL TRIAL, THAT 6131 03:24:18,230 --> 03:24:20,098 TYLENOL YOU GAVE YOUR BABY WAS 6132 03:24:20,098 --> 03:24:21,600 IN A CLINICAL TRIAL, THAT HEART 6133 03:24:21,600 --> 03:24:22,601 MEDICINE YOU GAVE YOUR DOG WAS 6134 03:24:22,601 --> 03:24:23,669 IN A CLINICAL TRIAL. 6135 03:24:23,669 --> 03:24:26,905 AND WHEN YOU BREAK DOWN THE 6136 03:24:26,905 --> 03:24:28,907 SCIENCE IN ELEMENTARY TERMS, IN 6137 03:24:28,907 --> 03:24:30,008 SIMPLE TERMS AND EXPLAIN THAT 6138 03:24:30,008 --> 03:24:31,076 YOU'RE GOING TO GET A DRUG, 6139 03:24:31,076 --> 03:24:34,980 THERE IS NO -- PILL IN CANCER 6140 03:24:34,980 --> 03:24:36,081 RESEARCH, YOU'RE GOING TO GET A 6141 03:24:36,081 --> 03:24:37,683 DRUG THAT'S IN THE MARKET AND 6142 03:24:37,683 --> 03:24:39,351 THEN MAYBE SOMETHING ON TOP OF 6143 03:24:39,351 --> 03:24:40,118 IT THAT'S BETTER. 6144 03:24:40,118 --> 03:24:43,255 AND YOU BREAK IT DOWN FOR THEM 6145 03:24:43,255 --> 03:24:46,091 FROM THE VOICE OF A BREASTIE,, 6146 03:24:46,091 --> 03:24:47,192 SOMEBODY THEY TRUST AND THEY GET 6147 03:24:47,192 --> 03:24:48,927 IT, THEY WANT TO SIGN UP. 6148 03:24:48,927 --> 03:24:51,296 NOBODY WANTS TO DIE AND IF IT'S 6149 03:24:51,296 --> 03:24:52,064 A WAY NOT TO DIE, THEY'RE GOING 6150 03:24:52,064 --> 03:24:52,731 TO BE ALL OVER IT. 6151 03:24:52,731 --> 03:24:54,599 I THINK IT'S THE VOICE THAT 6152 03:24:54,599 --> 03:24:56,535 YOU'RE GIVING THE INFORMATION 6153 03:24:56,535 --> 03:24:59,671 WITH, BUT ALSO JUST SIMPLIFYING 6154 03:24:59,671 --> 03:25:00,706 THE SCIENCE FOR THEM. 6155 03:25:00,706 --> 03:25:02,007 WHO UNDERSTANDS WHAT A CLINICAL 6156 03:25:02,007 --> 03:25:02,974 TRIAL IS? 6157 03:25:02,974 --> 03:25:04,943 YOU KNOW, A LOT OF DOCTORS DON'T 6158 03:25:04,943 --> 03:25:05,811 EVEN UNDERSTAND IT. 6159 03:25:05,811 --> 03:25:08,780 SO IT'S REALLY HOW YOU EXPLAIN 6160 03:25:08,780 --> 03:25:10,282 THE SCIENCE TO THEM. 6161 03:25:10,282 --> 03:25:11,350 AND WE ARE SMART. 6162 03:25:11,350 --> 03:25:12,117 WE DO GET IT. 6163 03:25:12,117 --> 03:25:15,187 AND WE DO -- YOU KNOW, WE WANT 6164 03:25:15,187 --> 03:25:16,021 TO LIVE. 6165 03:25:16,021 --> 03:25:17,556 SO IF YOU JUST GIVE THEM THE 6166 03:25:17,556 --> 03:25:18,924 RIGHT WORDS AND THE RIGHT WAY 6167 03:25:18,924 --> 03:25:21,059 FROM THE RIGHT VOICE, IT WORKS. 6168 03:25:21,059 --> 03:25:23,328 AND SO WE LAUNCHED OUR WHEN WE 6169 03:25:23,328 --> 03:25:28,567 TRIAL CAMPAIGN A YEAR AGO, AND I 6170 03:25:28,567 --> 03:25:31,436 KNEW WHERE TO FIND BREASTIES ON 6171 03:25:31,436 --> 03:25:33,138 SOCIAL MEDIA, I WANTED TO 6172 03:25:33,138 --> 03:25:34,239 EDUCATE THEM FIRST BECAUSE I 6173 03:25:34,239 --> 03:25:36,308 WANTED TO MAKE SURE THEY WERE 6174 03:25:36,308 --> 03:25:37,342 PASSING ON THE RIGHT INFORMATION 6175 03:25:37,342 --> 03:25:38,477 TO OTHER BREASTIES. 6176 03:25:38,477 --> 03:25:42,414 THEN WE DID A RADIO CAMPAIGN ON 6177 03:25:42,414 --> 03:25:43,915 HIP-HOP STATIONS BECAUSE FRANKLY 6178 03:25:43,915 --> 03:25:44,916 YOU NEED TO UNDERSTAND WHAT A 6179 03:25:44,916 --> 03:25:47,219 TRIAL IS BEFORE SOMEONE IN YOUR 6180 03:25:47,219 --> 03:25:47,953 FAMILY NEEDS ONE. 6181 03:25:47,953 --> 03:25:50,122 SO WE EDUCATED THEM. 6182 03:25:50,122 --> 03:25:51,656 THEN WE HIT THE ROAD, I WANTED 6183 03:25:51,656 --> 03:25:53,725 TO GO WHERE BLACK WOMEN LIVE, 6184 03:25:53,725 --> 03:25:58,230 PRAY, WORK, AND EXPLAIN SCIENCE 6185 03:25:58,230 --> 03:26:02,567 TO THEM. 6186 03:26:02,567 --> 03:26:03,869 WE WENT INTO THE COMMUNITY, WE 6187 03:26:03,869 --> 03:26:06,571 WENT TO -- WE WENT TO THE URBAN 6188 03:26:06,571 --> 03:26:07,906 LEAGUE CONVENTION, WE WENT TO 6189 03:26:07,906 --> 03:26:09,307 THE JACK AND JILL CONVENTION, 6190 03:26:09,307 --> 03:26:11,309 YOU KNOW, WE WALKED THE BEACH 6191 03:26:11,309 --> 03:26:13,712 AND MARTHA'S VINEYARD WHERE 6192 03:26:13,712 --> 03:26:16,214 BLACK PEOPLE ARE THERE IN 6193 03:26:16,214 --> 03:26:17,949 BIKINIS, WE WALKED STREETS AND 6194 03:26:17,949 --> 03:26:20,786 HAD A DJ WITH A BIG PARTY IN THE 6195 03:26:20,786 --> 03:26:21,019 STREET. 6196 03:26:21,019 --> 03:26:23,555 SO WE WENT TO THEM WHERE THEY 6197 03:26:23,555 --> 03:26:24,756 DIDN'T EXPECT US TO BE AND 6198 03:26:24,756 --> 03:26:25,857 EXPLAINED THE SCIENCE. 6199 03:26:25,857 --> 03:26:28,026 SO WE DID ABOUT 25 EVENTS 6200 03:26:28,026 --> 03:26:29,995 BETWEEN MAY AND DECEMBER LAST 6201 03:26:29,995 --> 03:26:31,530 YEAR, WE'D ALREADY DONE FIVE, 6202 03:26:31,530 --> 03:26:35,233 WE'RE ABOUT TO DO ONE TOMORROW 6203 03:26:35,233 --> 03:26:36,635 WITH MY FRIEND SHONTA, SO 6204 03:26:36,635 --> 03:26:37,302 EXCITED ABOUT THAT. 6205 03:26:37,302 --> 03:26:39,371 WE'VE NOW SIGNED UP 8500 BLACK 6206 03:26:39,371 --> 03:26:40,238 WOMEN FOR CLINICAL TRIAL 6207 03:26:40,238 --> 03:26:40,772 PORTALS. 6208 03:26:40,772 --> 03:26:42,874 SO WE KNOW THAT OUR FORMULA IS 6209 03:26:42,874 --> 03:26:43,542 WORKING. 6210 03:26:43,542 --> 03:26:44,576 BECAUSE IT'S US TALKING. 6211 03:26:44,576 --> 03:26:47,479 AND IT IS WITH US. 6212 03:26:47,479 --> 03:26:51,583 THANK YOU, REVEREND CURRY, IT IS 6213 03:26:51,583 --> 03:26:53,018 US, FOR US AND BY US. 6214 03:26:53,018 --> 03:26:54,085 CLEARLY WE HAVE A LONG WAY TO GO 6215 03:26:54,085 --> 03:26:57,055 TO GET TO THAT 3% 6216 03:26:57,055 --> 03:26:57,923 PARTICIPATION -- ADVANCE THAT 6217 03:26:57,923 --> 03:27:00,625 LEVEL, BUT WE KNOW HOW TO DO IT 6218 03:27:00,625 --> 03:27:00,959 NOW. 6219 03:27:00,959 --> 03:27:02,594 AND WE WANT TO SCALE IT AND EACH 6220 03:27:02,594 --> 03:27:04,062 OTHERS HOW TO DO IT. 6221 03:27:04,062 --> 03:27:05,163 >> THANK YOU SO MUCH. 6222 03:27:05,163 --> 03:27:06,331 I'M GOING TO COME TO YOU, 6223 03:27:06,331 --> 03:27:07,732 SHONTA, AND AS A FRIEND AND 6224 03:27:07,732 --> 03:27:09,835 COLLEAGUE, I KNOW YOU LIVE THIS 6225 03:27:09,835 --> 03:27:11,236 WORK FOR PATIENT ADVOCACY, YOU 6226 03:27:11,236 --> 03:27:12,003 LIVE IT. 6227 03:27:12,003 --> 03:27:13,972 AND THAT CONCEPT OF ADVOCACY, 6228 03:27:13,972 --> 03:27:17,342 YOU KNOW, COMES INTO PLAY. 6229 03:27:17,342 --> 03:27:18,210 JUST DESCRIBE SOME OF THE WORK 6230 03:27:18,210 --> 03:27:19,411 THAT YOU'VE BEEN ABLE TO DO IN 6231 03:27:19,411 --> 03:27:21,179 BEING A PATIENT ADVOCATE AND THE 6232 03:27:21,179 --> 03:27:22,614 IMPORTANCE OF THE PATIENT ADD VO 6233 03:27:22,614 --> 03:27:26,318 KA ROADVOCATE ROLE IN THIS SPAC. 6234 03:27:26,318 --> 03:27:28,019 >> I THINK AS I BEGIN TO RESPOND 6235 03:27:28,019 --> 03:27:29,554 TO THIS QUESTION, I THINK AS 6236 03:27:29,554 --> 03:27:30,622 NATIONAL ORGANIZATIONS, WE NEED 6237 03:27:30,622 --> 03:27:34,593 TO OWN OUR RESPONSIBILITIES TO 6238 03:27:34,593 --> 03:27:34,893 COMMUNITIES. 6239 03:27:34,893 --> 03:27:35,927 AND THAT SOMETIMES MEANS THAT WE 6240 03:27:35,927 --> 03:27:38,530 HAVE TO LEVERAGE OUR BRAND, OUR 6241 03:27:38,530 --> 03:27:39,965 REPUTATION, OUR INFLUENCE TO 6242 03:27:39,965 --> 03:27:41,266 HELP BRING COMMUNITY-BASED 6243 03:27:41,266 --> 03:27:44,336 ORGANIZATIONS AND OTHER 6244 03:27:44,336 --> 03:27:45,070 ORGANIZATIONS ALONG WITH US. 6245 03:27:45,070 --> 03:27:46,738 YOU KNOW, THERE IS THIS 6246 03:27:46,738 --> 03:27:48,573 METHODOLOGY IN PUBLIC HEALTH, 6247 03:27:48,573 --> 03:27:49,207 ASSET-BASED COMMUNITY 6248 03:27:49,207 --> 03:27:50,842 DEVELOPMENT, AND IT ACTUALLY 6249 03:27:50,842 --> 03:27:53,378 REALLY CENTERS AROUND BUILDING 6250 03:27:53,378 --> 03:27:54,679 ON THE ASSETS THAT EXIST WITHIN 6251 03:27:54,679 --> 03:27:55,213 A COMMUNITY. 6252 03:27:55,213 --> 03:27:56,481 WE TEND TO WANT TO THINK ABOUT 6253 03:27:56,481 --> 03:27:57,749 COMMUNITIES FROM THIS DEFICIT 6254 03:27:57,749 --> 03:28:00,185 MODEL, RIGHT? 6255 03:28:00,185 --> 03:28:01,786 BUT WE REALLY THINK ABOUT EVEN 6256 03:28:01,786 --> 03:28:03,421 EARLY DAYS FROM CIVIL RIGHTS 6257 03:28:03,421 --> 03:28:06,658 MOVEMENT TO EVEN NOW, IT'S THE 6258 03:28:06,658 --> 03:28:07,792 ASSETS, IT'S THE MOTIVATION, 6259 03:28:07,792 --> 03:28:10,195 IT'S THE PASSION, IT'S THE 6260 03:28:10,195 --> 03:28:11,496 DETERMINATION WITHIN COMMUNITIES 6261 03:28:11,496 --> 03:28:13,031 TO HAVE THEM THE BEDROCK THAT 6262 03:28:13,031 --> 03:28:14,199 HAVE BUILT AND SUSTAINED THIS 6263 03:28:14,199 --> 03:28:16,735 COUNTRY FOR SO MANY YEARS. 6264 03:28:16,735 --> 03:28:17,736 SO WHEN WE THINK ABOUT 6265 03:28:17,736 --> 03:28:19,371 COMMUNITIES, WHEN WE THINK ABOUT 6266 03:28:19,371 --> 03:28:20,205 ADVOCACY, WHEN WE THINK ABOUT 6267 03:28:20,205 --> 03:28:23,241 WHAT'S IN IT FOR THEM, THAT IS 6268 03:28:23,241 --> 03:28:24,175 THE GREAT OPPORTUNITY FOR US TO 6269 03:28:24,175 --> 03:28:26,778 BE ABLE TO MOBILIZE AND ENGAGE 6270 03:28:26,778 --> 03:28:29,481 OUR COMMUNITIES IN ADVOCACY. 6271 03:28:29,481 --> 03:28:30,916 THE CHALLENGE HAS ALWAYS BEEN 6272 03:28:30,916 --> 03:28:33,552 WE'VE GONE TO COMMUNITIES WITH 6273 03:28:33,552 --> 03:28:34,819 THIS NARRATIVE OF THIS AGENDA 6274 03:28:34,819 --> 03:28:37,989 AROUND WHAT WE THINK THEY NEED 6275 03:28:37,989 --> 03:28:39,124 VERSUS CREATING SPACE TO ASK 6276 03:28:39,124 --> 03:28:40,992 THEM THE QUESTION AND ACTUALLY 6277 03:28:40,992 --> 03:28:44,462 LISTEN FOR THEIR RESPONSE AROUND 6278 03:28:44,462 --> 03:28:46,097 NOT ONLY WHAT THEY NEED BUT ALSO 6279 03:28:46,097 --> 03:28:47,499 WHAT'S THE OPPORTUNITY, WHAT'S 6280 03:28:47,499 --> 03:28:50,335 THE SPACE FOR THEM TO 6281 03:28:50,335 --> 03:28:51,736 PARTICIPATE IN THE SOLUTION. 6282 03:28:51,736 --> 03:28:54,940 THE SOLUTION FOCUSED OPPORTUNITY 6283 03:28:54,940 --> 03:28:55,907 FOR COMMUNITIES IS ALL THAT 6284 03:28:55,907 --> 03:28:58,843 THEY'VE EVER DESIRED TO DO. 6285 03:28:58,843 --> 03:29:00,812 UNFORTUNATELY, WE JUST THINK WE 6286 03:29:00,812 --> 03:29:02,113 KNOW BEST SOMETIMES, AND WE'VE 6287 03:29:02,113 --> 03:29:03,848 LEARNED OVER TIME THAT WE DON'T 6288 03:29:03,848 --> 03:29:05,283 KNOW BEST. 6289 03:29:05,283 --> 03:29:07,052 COMMUNITIES KNOW THEIR 6290 03:29:07,052 --> 03:29:07,485 COMMUNITIES. 6291 03:29:07,485 --> 03:29:08,687 THEY'RE THERE DAY, EVENING AND 6292 03:29:08,687 --> 03:29:08,987 NIGHT. 6293 03:29:08,987 --> 03:29:11,389 SO FOR US AT PAF, THE WAY THAT 6294 03:29:11,389 --> 03:29:14,259 WE'VE ENGAGED WITH COMMUNITIES 6295 03:29:14,259 --> 03:29:15,760 AROUND ADVOCACY IS REALLY 6296 03:29:15,760 --> 03:29:16,995 APPLYING THIS PRINCIPLE AROUND 6297 03:29:16,995 --> 03:29:17,963 100 CUPS OF COFFEE. 6298 03:29:17,963 --> 03:29:18,930 AND THAT LITERALLY MEANS THAT 6299 03:29:18,930 --> 03:29:20,532 YOU'RE GOING INTO A COMMUNITY, 6300 03:29:20,532 --> 03:29:22,067 YOU'RE SITTING ON FRONT PORCHES, 6301 03:29:22,067 --> 03:29:23,835 BACK PORCHES, YOU'RE SITTING 6302 03:29:23,835 --> 03:29:27,739 WHEREVER YOU NEED TO SIT, THE 6303 03:29:27,739 --> 03:29:28,974 LAUNDROMAT OR WHAT HAVE YOU AND 6304 03:29:28,974 --> 03:29:29,841 ASKING POINTED QUESTIONS OF THE 6305 03:29:29,841 --> 03:29:31,009 COMMUNITY TO REALLY UNDERSTAND 6306 03:29:31,009 --> 03:29:32,344 THROUGH THEIR EYES, WHAT DO THEY 6307 03:29:32,344 --> 03:29:33,778 THINK ARE THE MOST PRESSING 6308 03:29:33,778 --> 03:29:34,646 CHALLENGES, BUT MORE 6309 03:29:34,646 --> 03:29:37,916 IMPORTANTLY, WHAT DO THEY SEE AS 6310 03:29:37,916 --> 03:29:39,551 THE SOLUTION AND LET THEM IGNITE 6311 03:29:39,551 --> 03:29:41,086 A MOVEMENT WITHIN THEIR 6312 03:29:41,086 --> 03:29:43,054 RESPECTIVE COMMUNITIES TO REALLY 6313 03:29:43,054 --> 03:29:44,889 HELP TO SUSTAIN AND FORTIFY THEM 6314 03:29:44,889 --> 03:29:47,659 IN A WAY THAT WE HAVE NOT DONE 6315 03:29:47,659 --> 03:29:48,860 HISTORICALLY. 6316 03:29:48,860 --> 03:29:50,295 SO FOR US WHEN WE THINK ABOUT 6317 03:29:50,295 --> 03:29:52,130 THIS ADVOCACY AGENDA, YOU CAN'T 6318 03:29:52,130 --> 03:29:54,766 BUILD AN AGENDA UNLESS YOU'VE 6319 03:29:54,766 --> 03:29:55,734 HAD YOUR 100 CUPS OF COFFEE. 6320 03:29:55,734 --> 03:29:59,004 SO WE WANT TO HAVE A SIEVE WHEN 6321 03:29:59,004 --> 03:30:00,972 WE GO INTO COMMUNITIES. 6322 03:30:00,972 --> 03:30:02,741 WE DON'T WANT TO SIT DOWN, 6323 03:30:02,741 --> 03:30:03,742 LISTEN, UNDERSTAND, AND THEN 6324 03:30:03,742 --> 03:30:04,609 WE'RE WONDERING WHY THE THINGS 6325 03:30:04,609 --> 03:30:05,877 WE DO DON'T WORK. 6326 03:30:05,877 --> 03:30:06,811 WONDERING WHY OUR COMMUNITIES 6327 03:30:06,811 --> 03:30:07,779 WON'T TAKE OUR CALLS WHEN WE 6328 03:30:07,779 --> 03:30:10,215 COME INTO THEIR COMMUNITY AND 6329 03:30:10,215 --> 03:30:11,316 WANT TO DO SOMETHING AND MOVE 6330 03:30:11,316 --> 03:30:11,583 SOMETHING. 6331 03:30:11,583 --> 03:30:12,917 BECAUSE WE HAVEN'T TAKEN THE 6332 03:30:12,917 --> 03:30:16,655 TIME TO CREATE SPACE FOR THEM AT 6333 03:30:16,655 --> 03:30:18,823 THE TABLE, BUT WE WANT THEM TO 6334 03:30:18,823 --> 03:30:19,290 EAT WHAT WE PREPARE. 6335 03:30:19,290 --> 03:30:21,860 SO AS WE THINK ABOUT OUR PATH 6336 03:30:21,860 --> 03:30:23,628 FORWARD, WE REALLY, REALLY, 6337 03:30:23,628 --> 03:30:25,163 REALLY AGAIN, AS I SAID IN MY 6338 03:30:25,163 --> 03:30:26,564 OPENING STATEMENT, HEALTH TAKES 6339 03:30:26,564 --> 03:30:27,465 PLACE IN COMMUNITIES. 6340 03:30:27,465 --> 03:30:30,602 THE ABSENCE OF HEALTH IS ALSO 6341 03:30:30,602 --> 03:30:31,836 PRESENT IN COMMUNITY. 6342 03:30:31,836 --> 03:30:33,004 BUT MORE IMPORTANTLY, THE 6343 03:30:33,004 --> 03:30:34,005 SOLUTIONS TO ALL OF THOSE THINGS 6344 03:30:34,005 --> 03:30:36,207 ARE WITHIN THE COMMUNITY. 6345 03:30:36,207 --> 03:30:37,509 >> THANK YOU SO MUCH. 6346 03:30:37,509 --> 03:30:38,910 I WISH YOU ALL COULD SEE MY 6347 03:30:38,910 --> 03:30:41,413 PHONE GOING OFF WITH TEXT 6348 03:30:41,413 --> 03:30:42,947 MESSAGES, I'M GETTING AMENS, 6349 03:30:42,947 --> 03:30:44,582 THIS IS THE CHOIR BUT WE'RE 6350 03:30:44,582 --> 03:30:45,517 SINGING THE SONG THAT NEEDS TO 6351 03:30:45,517 --> 03:30:47,085 BE HEARD, SO I APPRECIATE THIS 6352 03:30:47,085 --> 03:30:47,352 MESSAGING. 6353 03:30:47,352 --> 03:30:49,187 AND I REALLY LOVE, SHONTA, THE 6354 03:30:49,187 --> 03:30:50,822 WAY YOU TALKED ABOUT FROM AN 6355 03:30:50,822 --> 03:30:51,890 ASSET PERSPECTIVE AND REALLY 6356 03:30:51,890 --> 03:30:53,658 GETTING THE MESSAGE OUT THERE, 6357 03:30:53,658 --> 03:30:55,527 AND MS. TORRES, WHEN I THINK 6358 03:30:55,527 --> 03:30:57,328 ABOUT GETTING THE MESSAGE OUT 6359 03:30:57,328 --> 03:30:58,229 THERE, I THINK ABOUT THE WORK 6360 03:30:58,229 --> 03:31:00,298 YOU'VE DONE THROUGH THE MENTAL 6361 03:31:00,298 --> 03:31:01,533 HEALTH SITUATION AND EVEN THINGS 6362 03:31:01,533 --> 03:31:03,301 LIKE THE BIPOC MENTAL HEALTH 6363 03:31:03,301 --> 03:31:04,436 MONTH CAMPAIGN AND WAYS THAT 6364 03:31:04,436 --> 03:31:04,903 YOU'RE CENTERING THIS 6365 03:31:04,903 --> 03:31:05,236 CONVERSATION. 6366 03:31:05,236 --> 03:31:06,004 CAN YOU TALK A LITTLE BIT ABOUT 6367 03:31:06,004 --> 03:31:06,971 THAT WORK, PLEASE? 6368 03:31:06,971 --> 03:31:07,305 >> YEAH. 6369 03:31:07,305 --> 03:31:10,108 SO ONE OF THE KEYWAYS THAT 6370 03:31:10,108 --> 03:31:12,544 MENTAL HEALTH AMERICA SEEKS TO 6371 03:31:12,544 --> 03:31:14,312 SUPPORT INDIVIDUALS IN ADVOCACY 6372 03:31:14,312 --> 03:31:16,114 IS THAT WE PUT OUT TOOL KITS 6373 03:31:16,114 --> 03:31:20,652 SEVERAL TIMES A YEAR M SO MENTAL 6374 03:31:20,652 --> 03:31:22,787 HEALTH MONTH IN PAY, BIPOC 6375 03:31:22,787 --> 03:31:24,956 MENTAL HEALTH MONTH IN JULY, AS 6376 03:31:24,956 --> 03:31:26,658 WELL AS BACK TO SCHOOL, WE HAVE 6377 03:31:26,658 --> 03:31:28,693 A WORKPLACE TOOLKIT AS WELL, SO 6378 03:31:28,693 --> 03:31:29,327 WE HAVE SEVERAL DIFFERENT TOOL 6379 03:31:29,327 --> 03:31:32,430 KITS THAT WE PUT OUT THERE THAT 6380 03:31:32,430 --> 03:31:35,600 GIVE PEOPLE THE OPPORTUNITY TO 6381 03:31:35,600 --> 03:31:38,236 SHARE REMADE CONTENT, SO FOR 6382 03:31:38,236 --> 03:31:42,040 EXAMPLE, WE HAVE INFOGRAPHICS ON 6383 03:31:42,040 --> 03:31:43,241 STATISTICS, WE HAVE SAMPLE 6384 03:31:43,241 --> 03:31:45,143 MESSAGES FOR SOCIAL MEDIA, WE 6385 03:31:45,143 --> 03:31:45,744 HAVE FACT SHEETS THAT YOU CAN 6386 03:31:45,744 --> 03:31:46,745 SHARE IN YOUR COMMUNITIES, WE 6387 03:31:46,745 --> 03:31:49,280 HAVE LISTS OF RESOURCES THAT 6388 03:31:49,280 --> 03:31:50,515 YOU CAN SHARE. 6389 03:31:50,515 --> 03:31:51,716 SO WE OFFER THESE DIFFERENT 6390 03:31:51,716 --> 03:31:57,222 KINDS OF TOLL K TOOL KITS THROUT 6391 03:31:57,222 --> 03:31:58,256 THE YEAR THAT ALLOW INDIVIDUALS 6392 03:31:58,256 --> 03:31:59,290 TO TAKE ALL THIS INFORMATION IN 6393 03:31:59,290 --> 03:32:00,325 ONE PLACE AND GO WITH IT AND 6394 03:32:00,325 --> 03:32:01,960 JUST TAKE IT OUT INTO THEIR 6395 03:32:01,960 --> 03:32:02,527 COMMUNITIES AND SPREAD IT 6396 03:32:02,527 --> 03:32:07,999 HOWEVER THEY FEEL IS BEST. 6397 03:32:07,999 --> 03:32:08,767 BECAUSE WITHIN THIS 6398 03:32:08,767 --> 03:32:10,068 CONVERSATION, WE REALLY 6399 03:32:10,068 --> 03:32:13,838 UNDERSTAND HOW VITAL IT IS TO 6400 03:32:13,838 --> 03:32:15,740 NOT JUST SUPPORT OUR 6401 03:32:15,740 --> 03:32:16,641 COMMUNITIES, YOU KNOW, THROUGH 6402 03:32:16,641 --> 03:32:18,176 THE CONTENT THAT WE PUT OUT BUT 6403 03:32:18,176 --> 03:32:19,911 TO GIVE OUR COMMUNITIES THE 6404 03:32:19,911 --> 03:32:22,180 TOOLS TO ACTUALLY TAKE THAT AND 6405 03:32:22,180 --> 03:32:22,614 RUN WITH IT. 6406 03:32:22,614 --> 03:32:24,482 SO WITHIN THE BIPOC TOOLKIT THAT 6407 03:32:24,482 --> 03:32:28,419 WE DID LAST YEAR FOR NATIONAL 6408 03:32:28,419 --> 03:32:29,420 MINORITY MENTAL HEALTH AWARENESS 6409 03:32:29,420 --> 03:32:31,823 MONTH, WE WERE ABLE TO PUT OUT 6410 03:32:31,823 --> 03:32:34,559 INFORMATION SPECIFIC TO -- WE 6411 03:32:34,559 --> 03:32:36,761 SPLIT UP THE TERM BIPOC INTO SIX 6412 03:32:36,761 --> 03:32:38,163 DIFFERENT CULTURAL CATEGORIES, 6413 03:32:38,163 --> 03:32:39,798 BECAUSE OUR GOAL WAS NOT TO JUST 6414 03:32:39,798 --> 03:32:41,533 TALK ABOUT BIPOC, NOT JUST TO 6415 03:32:41,533 --> 03:32:42,867 TALK ABOUT PEOPLE OF COLOR, NOT 6416 03:32:42,867 --> 03:32:45,236 JUST TO TALK ABOUT PEOPLE OF THE 6417 03:32:45,236 --> 03:32:47,005 GLOBAL MAJORITY, BUT TO TALK 6418 03:32:47,005 --> 03:32:48,673 ABOUT SPECIFICS TO EACH 6419 03:32:48,673 --> 03:32:49,140 INDIVIDUAL COMMUNITY. 6420 03:32:49,140 --> 03:32:50,642 WHAT ARE THE BARRIERS, WHAT ARE 6421 03:32:50,642 --> 03:32:52,577 THE HISTORICAL FACTORS THAT WE 6422 03:32:52,577 --> 03:32:53,711 NEED TO CONSIDER AS 6423 03:32:53,711 --> 03:32:54,445 PRACTITIONERS, AS PEOPLE WHO 6424 03:32:54,445 --> 03:32:56,548 WORK ALONGSIDE THESE 6425 03:32:56,548 --> 03:32:57,415 COMMUNITIES? 6426 03:32:57,415 --> 03:32:59,617 WHAT ARE THE THINGS THAT THESE 6427 03:32:59,617 --> 03:33:01,586 COMMUNITIES WANT US TO HEAR? 6428 03:33:01,586 --> 03:33:04,856 ONE THING THAT CAME OUT OFTEN 6429 03:33:04,856 --> 03:33:08,459 WITHIN THAT WAS THE NEED FOR 6430 03:33:08,459 --> 03:33:09,861 MORE CONNECTION WITH GATE 6431 03:33:09,861 --> 03:33:11,529 KEEPERS WITHIN THOSE 6432 03:33:11,529 --> 03:33:12,297 COMMUNITIES. 6433 03:33:12,297 --> 03:33:13,398 SO SPECIFICALLY COMMUNITY 6434 03:33:13,398 --> 03:33:14,699 LEADERS, INDIVIDUALS THAT ARE 6435 03:33:14,699 --> 03:33:16,568 ALREADY TRUSTED ACTIVISTS, 6436 03:33:16,568 --> 03:33:17,135 PEOPLE WHO ARE BOOTS ON THE 6437 03:33:17,135 --> 03:33:18,837 GROUND THAT HAVE ACTUALLY BEEN 6438 03:33:18,837 --> 03:33:22,340 ALREADY DOING THIS WORK, LONG 6439 03:33:22,340 --> 03:33:23,875 BEFORE MANY OF US HAVE. 6440 03:33:23,875 --> 03:33:24,876 SO IT'S VITAL THAT WE REACH OUT 6441 03:33:24,876 --> 03:33:26,744 TO THOSE GATE KEEPERS AND ARE 6442 03:33:26,744 --> 03:33:30,982 ABLE TO ACTUALLY FIND PEOPLE WHO 6443 03:33:30,982 --> 03:33:33,084 CAN GET INTO EACH COMMUNITY AND 6444 03:33:33,084 --> 03:33:35,353 CAN ALREADY HAVE THAT 6445 03:33:35,353 --> 03:33:37,222 ESTABLISHED TRUST AND THEN THAT 6446 03:33:37,222 --> 03:33:39,958 CAN ALLOW US TO BE ABLE TO WORK 6447 03:33:39,958 --> 03:33:40,592 WITH INDIVIDUAL COMMUNITIES AND 6448 03:33:40,592 --> 03:33:43,261 TO BE ABLE TO ACTUALLY USE 6449 03:33:43,261 --> 03:33:45,330 COMMUNITY INITIATED CONCEPTS AND 6450 03:33:45,330 --> 03:33:48,733 COMMUNITY INITIATED EDUCATION TO 6451 03:33:48,733 --> 03:33:52,136 FURTHER THE WORK THAT WE DO. 6452 03:33:52,136 --> 03:33:52,937 >> THANK YOU SO MUCH. 6453 03:33:52,937 --> 03:33:54,205 >> CAN I BUILD ON THAT? 6454 03:33:54,205 --> 03:33:57,542 >> SURE, AND THEN WHICH HAVE AN 6455 03:33:57,542 --> 03:33:58,376 AMAZING QUESTION -- AS YOU BUILD 6456 03:33:58,376 --> 03:33:59,911 ON THAT, I'M GOING TO ASK YOU TO 6457 03:33:59,911 --> 03:34:01,346 BUILD ON A QUESTION IN THE CHAT. 6458 03:34:01,346 --> 03:34:01,946 BECAUSE THERE'S A QUESTION IN 6459 03:34:01,946 --> 03:34:02,647 THE CHAT THAT ACTUALLY TALKED 6460 03:34:02,647 --> 03:34:05,917 ABOUT THE MORNS IMPORTANCE OF TS 6461 03:34:05,917 --> 03:34:06,484 TRUSTED VOICES PIECE AND THE 6462 03:34:06,484 --> 03:34:09,120 IMPORTANCE OF TRUSTED VOICES SO 6463 03:34:09,120 --> 03:34:11,089 AS YOU BUILD ON THAT, 6464 03:34:11,089 --> 03:34:11,823 MS. FAIRLEY, PLEASE BUILD ON THE 6465 03:34:11,823 --> 03:34:13,157 ROLE OF TRUSTED VOICES. 6466 03:34:13,157 --> 03:34:14,993 >> I HATE THE TERM BIPOC. 6467 03:34:14,993 --> 03:34:15,927 I'M SORRY. 6468 03:34:15,927 --> 03:34:18,296 I'M A BLACK WOMAN, YOU KNOW, 6469 03:34:18,296 --> 03:34:20,064 YOU'RE LATINO, SO I THINK THAT 6470 03:34:20,064 --> 03:34:22,634 YOU CAN'T JUST PUT EVERYBODY IN 6471 03:34:22,634 --> 03:34:24,202 A BUCKET AND SAY OKAY, THEY HAVE 6472 03:34:24,202 --> 03:34:27,171 SOME COLOR IN THEIR MELANIN, 6473 03:34:27,171 --> 03:34:27,705 RIGHT? 6474 03:34:27,705 --> 03:34:29,674 BECAUSE THERE ARE CULTURAL 6475 03:34:29,674 --> 03:34:30,975 NUANCES THAT MAKE US ALL 6476 03:34:30,975 --> 03:34:31,976 DIFFERENT. 6477 03:34:31,976 --> 03:34:32,977 MAKE EVERYBODY DIFFERENT. 6478 03:34:32,977 --> 03:34:34,612 BUT UNLESS YOU ADDRESS THAT -- 6479 03:34:34,612 --> 03:34:36,014 I'M A MARKETING PERSON BY TRADE 6480 03:34:36,014 --> 03:34:37,982 SO MAYBE THAT'S HOW I THINK, BUT 6481 03:34:37,982 --> 03:34:41,052 YOU HAVE TO APPROACH THESE 6482 03:34:41,052 --> 03:34:44,989 CONVERSATIONS WITH CULTURAL 6483 03:34:44,989 --> 03:34:45,256 HUMILITY. 6484 03:34:45,256 --> 03:34:45,857 THAT'S WHY THE VOICE TO YOUR 6485 03:34:45,857 --> 03:34:46,524 POINT IS SO IMPORTANT. 6486 03:34:46,524 --> 03:34:49,060 IT IS ABOUT THE VOICE, IT IS 6487 03:34:49,060 --> 03:34:51,229 ABOUT WHERE THE TRUST COMES 6488 03:34:51,229 --> 03:34:54,299 FROM, AND IT DOES COME FROM YOUR 6489 03:34:54,299 --> 03:34:55,733 CULTURE, YOUR UPBRINGING, HOW 6490 03:34:55,733 --> 03:34:58,469 YOU WERE RAISED, IT COMES FROM, 6491 03:34:58,469 --> 03:35:00,104 YOU KNOW, NUANCES IN OUR 6492 03:35:00,104 --> 03:35:01,439 COMMUNITIES THAT MAKE US 6493 03:35:01,439 --> 03:35:03,408 DIFFERENT AND MAKE US UNIQUE AND 6494 03:35:03,408 --> 03:35:05,310 MAKE US RESPOND DIFFERENTLY TO 6495 03:35:05,310 --> 03:35:06,010 INFORMATION. 6496 03:35:06,010 --> 03:35:07,345 AND THERE ARE SOME BLACK THINGS 6497 03:35:07,345 --> 03:35:08,746 THAT ARE DIFFERENT FROM THE 6498 03:35:08,746 --> 03:35:09,847 LATINX THINGS THAT ARE DIFFERENT 6499 03:35:09,847 --> 03:35:10,982 FROM ASIAN THINGS THAT ARE 6500 03:35:10,982 --> 03:35:12,150 DIFFERENT FROM WHITE THINGS, AND 6501 03:35:12,150 --> 03:35:13,785 I THINK YOU REALLY HAVE TO 6502 03:35:13,785 --> 03:35:18,056 CONSIDER THOSE FACTORS AND 6503 03:35:18,056 --> 03:35:21,025 CONSIDER OUR CULTURAL 6504 03:35:21,025 --> 03:35:21,993 DIFFERENCES TO MAKE THE MESSAGES 6505 03:35:21,993 --> 03:35:24,128 RELEVANT. 6506 03:35:24,128 --> 03:35:25,163 AND I KNOW -- I DON'T WANT 6507 03:35:25,163 --> 03:35:26,798 ANYBODY TO DIE OF BREAST CANCER 6508 03:35:26,798 --> 03:35:27,899 BUT I KNOW MY CONVERSATION WITH 6509 03:35:27,899 --> 03:35:29,767 A BLACK BREASTIE IS DIFFERENT 6510 03:35:29,767 --> 03:35:31,602 FROM A WHITE BREASTIE. 6511 03:35:31,602 --> 03:35:33,905 MY CONVERSATION EVEN WL A 6512 03:35:33,905 --> 03:35:35,239 HISPANIC BLACK BREASTIE IS 6513 03:35:35,239 --> 03:35:35,540 DIFFERENT. 6514 03:35:35,540 --> 03:35:37,875 AND I REALLY HAVE TO TAKE INTO 6515 03:35:37,875 --> 03:35:41,145 CONSIDERATION WHO THEY ARE TO 6516 03:35:41,145 --> 03:35:42,013 GIVE THEM THE INFORMATION IN THE 6517 03:35:42,013 --> 03:35:43,348 WAY THAT'S GOING TO MAKE THEM 6518 03:35:43,348 --> 03:35:45,616 TRUST ME AND MAKE A BEHAVIOR 6519 03:35:45,616 --> 03:35:46,718 CHANGE TO PARTICIPATE IN A 6520 03:35:46,718 --> 03:35:47,585 TRIAL. 6521 03:35:47,585 --> 03:35:50,888 AND I THINK YOU HAVE TO BE 6522 03:35:50,888 --> 03:35:52,090 INTENTIONAL ABOUT HOW YOU TALK 6523 03:35:52,090 --> 03:35:53,624 TO PEOPLE, WHAT YOU SAY, WHEN 6524 03:35:53,624 --> 03:35:55,259 YOU SAY IT, WHERE YOU SAY IT, 6525 03:35:55,259 --> 03:35:56,894 AND ESPECIALLY WHO SAYS IS. 6526 03:35:56,894 --> 03:35:59,197 >> THIS CONCEPT OF WHERE WE SAY 6527 03:35:59,197 --> 03:36:00,264 IT, MS. FAIRLEY, REVEREND CURRY 6528 03:36:00,264 --> 03:36:01,499 I SEE YOU AND I THINK YOU'RE 6529 03:36:01,499 --> 03:36:03,534 GOING TO GET TO THIS WHERE WE 6530 03:36:03,534 --> 03:36:03,768 SAY IT. 6531 03:36:03,768 --> 03:36:04,736 >> HE'S CHOMPING AT THE BIT. 6532 03:36:04,736 --> 03:36:06,070 >> I WOULD LOVE FOR YOU TO 6533 03:36:06,070 --> 03:36:07,505 COMMENT ON THE WHERE PIECE. 6534 03:36:07,505 --> 03:36:08,172 WE DON'T TALK ENOUGH ABOUT SPACE 6535 03:36:08,172 --> 03:36:10,341 AND PLACE, AND THE FAITH-BASED 6536 03:36:10,341 --> 03:36:12,110 COMMUNITY HAS OFTEN BEEN A PLACE 6537 03:36:12,110 --> 03:36:14,178 WHERE THESE TRUSTED 6538 03:36:14,178 --> 03:36:15,380 CONVERSATIONS CAN BE HAD BY 6539 03:36:15,380 --> 03:36:16,481 TRUSTED MESSENGERS IN TRUSTED 6540 03:36:16,481 --> 03:36:16,814 PLACES. 6541 03:36:16,814 --> 03:36:19,751 CAN YOU BUILD UPON THAT PLACE 6542 03:36:19,751 --> 03:36:20,151 AND SPACE, PLEASE? 6543 03:36:20,151 --> 03:36:21,953 >> YEAH, PLACE AND SPACE IS SO 6544 03:36:21,953 --> 03:36:23,921 CRITICALLY IMPORTANT BECAUSE IT 6545 03:36:23,921 --> 03:36:25,256 IS SAFE SPACE. 6546 03:36:25,256 --> 03:36:27,725 IT'S A SAFE PLACE TO BEGIN TO 6547 03:36:27,725 --> 03:36:28,526 HAVE THESE CONVERSATIONS. 6548 03:36:28,526 --> 03:36:31,462 I CAN'T TELL YOU HOW MANY 6549 03:36:31,462 --> 03:36:32,964 CONVERSATIONS I'VE HAD WITH FOLK 6550 03:36:32,964 --> 03:36:35,099 THAT ARE I WOULDN'T EVEN -- I 6551 03:36:35,099 --> 03:36:36,534 COULDN'T REPEAT HERE, BUT THEY 6552 03:36:36,534 --> 03:36:40,038 FEEL SAFE ENOUGH TO COME TO A 6553 03:36:40,038 --> 03:36:41,672 HOUSE OF WORSHIP OR TO A SMALL 6554 03:36:41,672 --> 03:36:43,408 GROUP THAT WE'RE HAVING OR TO 6555 03:36:43,408 --> 03:36:47,879 SOME OTHER EVENT, AND REALLY 6556 03:36:47,879 --> 03:36:49,113 WE'RE INTENTIONAL, AND I LOVE 6557 03:36:49,113 --> 03:36:51,749 THAT THE WAY RICKI FAIRLEY JUST 6558 03:36:51,749 --> 03:36:52,050 SAID IT. 6559 03:36:52,050 --> 03:36:54,352 I MEAN, THAT INTENTIONALITY WITH 6560 03:36:54,352 --> 03:36:56,087 WHICH THEY COME AND THEY'RE 6561 03:36:56,087 --> 03:37:01,059 HUNGRY TO BE ABLE TO BE OPEN, TO 6562 03:37:01,059 --> 03:37:02,460 BE THOSE WHO WILL FIND 6563 03:37:02,460 --> 03:37:04,562 THEMSELVES JUST WILLING TO 6564 03:37:04,562 --> 03:37:08,032 SHARE, AND THERE ARE TWO WORDS 6565 03:37:08,032 --> 03:37:11,202 I'D JUST LIKE TO INTRODUCE IN 6566 03:37:11,202 --> 03:37:11,569 THIS SPACE. 6567 03:37:11,569 --> 03:37:14,338 ONE IS AUTHENTICITY AND ANOTHER 6568 03:37:14,338 --> 03:37:14,672 IS ACCEPTANCE. 6569 03:37:14,672 --> 03:37:15,973 WHEN I START TO DEAL WITH 6570 03:37:15,973 --> 03:37:17,308 AUTHENTICITY AND ACCEPTANCE, I'M 6571 03:37:17,308 --> 03:37:19,243 NOT CONCERNED ABOUT WHAT YOU 6572 03:37:19,243 --> 03:37:21,779 HAVE ON OR HOW YOU SOUND. 6573 03:37:21,779 --> 03:37:22,880 I'M NOT CONCERNED AS MUCH ABOUT 6574 03:37:22,880 --> 03:37:24,949 YOUR OWN CULTURAL NUANCES OR 6575 03:37:24,949 --> 03:37:26,484 ANYTHING ELSE. 6576 03:37:26,484 --> 03:37:29,554 I ACCEPT YOU AS YOU ARE. 6577 03:37:29,554 --> 03:37:30,688 AND WHEN I CAN BEGIN TO ACCEPT 6578 03:37:30,688 --> 03:37:32,190 YOU AS YOU ARE, AND I KNOW THAT 6579 03:37:32,190 --> 03:37:34,826 GOES A LONG WAY, BECAUSE AS A 6580 03:37:34,826 --> 03:37:38,329 BLACK MALE, THERE ARE SOME 6581 03:37:38,329 --> 03:37:39,664 SPACES DUE TO STRUCTURAL RACISM, 6582 03:37:39,664 --> 03:37:41,299 ET CETERA, THAT I JUST AM NOT 6583 03:37:41,299 --> 03:37:44,802 VIEWED THE SAME WAY. 6584 03:37:44,802 --> 03:37:46,003 AND SO WHEN WE COME IN THE 6585 03:37:46,003 --> 03:37:47,772 CONTEXT OF COMMUNITY AND TALK 6586 03:37:47,772 --> 03:37:50,074 ABOUT PLACE AND WE NEED TO TALK 6587 03:37:50,074 --> 03:37:52,910 ABOUT SAFE PLACES AND SAFE 6588 03:37:52,910 --> 03:37:54,545 SPACES, AND WHEN WE TALK ABOUT 6589 03:37:54,545 --> 03:37:57,281 THOSE SAFE PLACES AND SAFE 6590 03:37:57,281 --> 03:37:58,416 SPACES, WE NEED TO BRING THE 6591 03:37:58,416 --> 03:37:59,517 WORDS AUTHENTICITY UP BECAUSE I 6592 03:37:59,517 --> 03:38:01,252 WANT YOU TO BE HONEST AND KEEP 6593 03:38:01,252 --> 03:38:01,486 IT REAL. 6594 03:38:01,486 --> 03:38:02,353 ONCE YOU'RE HONEST AND YOU KEEP 6595 03:38:02,353 --> 03:38:05,423 IT REAL, THEN WHAT HAPPENS IS 6596 03:38:05,423 --> 03:38:07,825 FOLK BEGIN TO SHARE MORE THAN 6597 03:38:07,825 --> 03:38:09,127 ANYTHING ELSE. 6598 03:38:09,127 --> 03:38:10,628 BECAUSE THEY'RE HEARD. 6599 03:38:10,628 --> 03:38:13,264 THE DAY IS OVER FOR US ALL BEING 6600 03:38:13,264 --> 03:38:14,132 INVISIBLE. 6601 03:38:14,132 --> 03:38:16,234 I NEED YOU TO SEE ME. 6602 03:38:16,234 --> 03:38:17,768 AND I NEED TO KNOW THAT YOU SEE 6603 03:38:17,768 --> 03:38:18,269 ME. 6604 03:38:18,269 --> 03:38:19,504 NOT ONLY DO I NEED TO KNOW THAT 6605 03:38:19,504 --> 03:38:21,472 YOU SEE ME, I NEED TO KNOW THAT 6606 03:38:21,472 --> 03:38:23,141 YOU FEEL ME. 6607 03:38:23,141 --> 03:38:24,542 AND IF YOU SEE ME AND FEEL ME, 6608 03:38:24,542 --> 03:38:26,711 NOW YOU BRING MY HUMANITY BACK. 6609 03:38:26,711 --> 03:38:28,079 AND THAT'S REALLY WHAT WE'RE 6610 03:38:28,079 --> 03:38:30,615 TALKING ABOUT, IS UNDERSTANDING 6611 03:38:30,615 --> 03:38:33,017 HOW WE MOVE IN THIS WAY IN 6612 03:38:33,017 --> 03:38:35,553 HOUSES OF WORSHIP, WHERE WE CAN 6613 03:38:35,553 --> 03:38:37,522 BE VULNERABLE, WE CAN ACCEPT 6614 03:38:37,522 --> 03:38:40,925 PEOPLE FOR WHO THEY ARE, WE CAN 6615 03:38:40,925 --> 03:38:42,593 SPEAK AUTHENTICALLY, AND FOLK 6616 03:38:42,593 --> 03:38:45,196 WILL BE ABLE TO SAY THEIR TRUTH, 6617 03:38:45,196 --> 03:38:46,497 EMBRACE THEIR TRUTH, UNDERSTAND 6618 03:38:46,497 --> 03:38:50,801 THEIR TRUTH, AND NOW WE BUILT 6619 03:38:50,801 --> 03:38:51,536 FRIENDS. 6620 03:38:51,536 --> 03:38:54,505 AND WE HAVE RELATIONSHIP. 6621 03:38:54,505 --> 03:38:55,673 AND ONCE WE HAVE THAT 6622 03:38:55,673 --> 03:38:56,874 RELATIONSHIP GOING ON, NOW WE 6623 03:38:56,874 --> 03:38:58,543 CAN VALUE THE OTHER PERSON. 6624 03:38:58,543 --> 03:39:00,711 AND IT GETS -- STARTS TO GET 6625 03:39:00,711 --> 03:39:01,946 BEYOND SOME OF THE OTHER STUFF 6626 03:39:01,946 --> 03:39:04,081 THAT SEEMS TO DIVIDE US RATHER 6627 03:39:04,081 --> 03:39:05,283 THAN UNIFY US. 6628 03:39:05,283 --> 03:39:07,251 >> THANK YOU SO MUCH, REVEREND 6629 03:39:07,251 --> 03:39:07,785 CURRY. 6630 03:39:07,785 --> 03:39:09,420 SHONTA, I'M GOING TO COME TO YOU 6631 03:39:09,420 --> 03:39:10,655 NEXT, THIS CONCEPT OF 6632 03:39:10,655 --> 03:39:12,156 RELATIONSHIP AND ELEVATING THE 6633 03:39:12,156 --> 03:39:12,823 PATIENT VOICE. 6634 03:39:12,823 --> 03:39:14,625 AT PAF, I KNOW YOU ALL THINK A 6635 03:39:14,625 --> 03:39:15,459 LOT ABOUT SUSTAINABILITY. 6636 03:39:15,459 --> 03:39:16,694 YOU DON'T WANT THAT ONE TOUCH 6637 03:39:16,694 --> 03:39:17,428 AND THEN YOU MOVE. 6638 03:39:17,428 --> 03:39:19,330 CAN YOU SPEAK A LITTLE BIT TO 6639 03:39:19,330 --> 03:39:20,531 THE SUSTAINABILITY PIECE OF 6640 03:39:20,531 --> 03:39:23,100 THIS? 6641 03:39:23,100 --> 03:39:26,837 >> SO THE FORK FOR WORK FOR US,E 6642 03:39:26,837 --> 03:39:27,705 THINK ABOUT SUSTAINABILITY, IT 6643 03:39:27,705 --> 03:39:28,806 COMES BACK TO COMMUNITY. 6644 03:39:28,806 --> 03:39:29,907 BECAUSE AS AN ORGANIZATION, 6645 03:39:29,907 --> 03:39:31,542 WE'RE NOT BRICK AND MORTAR, 6646 03:39:31,542 --> 03:39:32,543 ALTHOUGH WE'RE A NATIONAL 6647 03:39:32,543 --> 03:39:33,978 ORGANIZATION SERVING ALL 50 6648 03:39:33,978 --> 03:39:34,946 STATES AND TERRITORIES, BECAUSE 6649 03:39:34,946 --> 03:39:37,548 WE'RE NOT BRICK AND MORTAR IN 6650 03:39:37,548 --> 03:39:40,985 EVERY SINGLE COMMUNITY, OUR 6651 03:39:40,985 --> 03:39:42,620 RELATIONSHIPS WITH OUR COMMUNITY 6652 03:39:42,620 --> 03:39:45,489 PARTNERS IS THE LIFELINE TO 6653 03:39:45,489 --> 03:39:48,659 HELP, A, UNDERSTAND WHAT ARE 6654 03:39:48,659 --> 03:39:50,528 THOSE SOCIAL NEED GAPS THAT ARE 6655 03:39:50,528 --> 03:39:52,163 MOST PREVALENT IN EACH 6656 03:39:52,163 --> 03:39:52,630 COMMUNITY? 6657 03:39:52,630 --> 03:39:54,932 IT MAY BE TRANSPORTATION IN 6658 03:39:54,932 --> 03:39:57,635 CHICAGO, IT MAY BE FOOD 6659 03:39:57,635 --> 03:39:59,403 INSECURITY IN PHILADELPHIA, IT 6660 03:39:59,403 --> 03:40:01,472 MAY BE CHILD CARE SOMEPLACE 6661 03:40:01,472 --> 03:40:03,374 ELSE. 6662 03:40:03,374 --> 03:40:05,109 SO IT IS BY HAVING THESE 6663 03:40:05,109 --> 03:40:06,577 AUTHENTIC RELATIONSHIPS BECAUSE 6664 03:40:06,577 --> 03:40:09,814 WE SPENT TIME WITH PEOPLE, WE'RE 6665 03:40:09,814 --> 03:40:13,150 ABLE TO UNDERSTAND IF THE 6666 03:40:13,150 --> 03:40:14,785 SERVICES AND -- THAT WE PROVIDE 6667 03:40:14,785 --> 03:40:16,220 AS AN ORGANIZATION ARE ACTUALLY 6668 03:40:16,220 --> 03:40:18,389 MEETING PEOPLE WHERE THEY ARE, 6669 03:40:18,389 --> 03:40:20,191 AT THE PLACE THAT THEY NEED IT, 6670 03:40:20,191 --> 03:40:22,360 AND IT'S ALSO REALIZING THAT IT 6671 03:40:22,360 --> 03:40:24,996 MIGHT NOT BE SHONTA CHAMBERS 6672 03:40:24,996 --> 03:40:26,897 THAT HELPS TO CONNECT A 6673 03:40:26,897 --> 03:40:28,599 COMMUNITY TO A PAF RESOURCE, IT 6674 03:40:28,599 --> 03:40:29,934 MAY BE RICKI. 6675 03:40:29,934 --> 03:40:32,103 IT MAY BE PASTOR CURRY. 6676 03:40:32,103 --> 03:40:33,471 IT MAY BE ALISSA. 6677 03:40:33,471 --> 03:40:34,939 BECAUSE THEY ARE THE TRUSTED -- 6678 03:40:34,939 --> 03:40:37,608 THEY ARE THE ENTITY THAT HAS 6679 03:40:37,608 --> 03:40:39,443 MOVED BEYOND JUST A RELATIONSHIP 6680 03:40:39,443 --> 03:40:40,678 OF TRUST, BUT THEY HAVE 6681 03:40:40,678 --> 03:40:42,647 DEMONSTRATED THEMSELVES AS BEING 6682 03:40:42,647 --> 03:40:43,381 TRUSTWORTHY. 6683 03:40:43,381 --> 03:40:46,183 BECAUSE THAT'S SOMETHING VERY 6684 03:40:46,183 --> 03:40:48,919 DIFFERENT, BECAUSE TRUST CAN BE 6685 03:40:48,919 --> 03:40:50,655 EVASIVE, BUT TRUSTWORTHINESS IS 6686 03:40:50,655 --> 03:40:52,089 THE INTEGRITY OF AN INDIVIDUAL 6687 03:40:52,089 --> 03:40:53,157 OR AN ORGANIZATION. 6688 03:40:53,157 --> 03:40:56,060 AND THAT IS WHAT HAS ALLOWED US 6689 03:40:56,060 --> 03:40:57,695 TO BE ABLE TO SUSTAIN OUR WORK, 6690 03:40:57,695 --> 03:41:00,665 BY BUILDING THESE AUTHENTIC 6691 03:41:00,665 --> 03:41:00,998 RELATIONSHIPS. 6692 03:41:00,998 --> 03:41:03,501 AND LIKE I SAID BEFORE, WE 6693 03:41:03,501 --> 03:41:05,169 DON'T -- WE CAN'T INVITE 6694 03:41:05,169 --> 03:41:07,238 SOMEBODY TO SIT AT OUR TABLE IF 6695 03:41:07,238 --> 03:41:09,307 WE'RE NOT WILLING TO SIT AT 6696 03:41:09,307 --> 03:41:10,741 THEIR TABLE WITHOUT ANY TYPE OF 6697 03:41:10,741 --> 03:41:14,245 AGENDA. 6698 03:41:14,245 --> 03:41:15,813 >> I LOVE THAT CONCEPT, WITHOUT 6699 03:41:15,813 --> 03:41:17,315 ANY TYPE OF AGENDA. 6700 03:41:17,315 --> 03:41:18,182 MS. TORRES, I'M GOING TO ASK YOU 6701 03:41:18,182 --> 03:41:19,417 TO SPEAK TO TWO THINGS. 6702 03:41:19,417 --> 03:41:20,518 ONE, I LOVE THE CONCEPT OF WHAT 6703 03:41:20,518 --> 03:41:22,353 YOU DESCRIBED AS 6704 03:41:22,353 --> 03:41:23,154 LIBERATION-BASED PRACTICE. 6705 03:41:23,154 --> 03:41:24,455 WITHIN THIS CONCEPT OF 6706 03:41:24,455 --> 03:41:25,189 LIBERATION-BASED PRAK TI THERE 6707 03:41:25,189 --> 03:41:26,123 WAS A QUESTION IN THE CHAT ABOUT 6708 03:41:26,123 --> 03:41:27,925 HOW DO WE GET OTHERS TO BEGIN TO 6709 03:41:27,925 --> 03:41:30,928 UNDERSTAND THIS LANGUAGE OF 6710 03:41:30,928 --> 03:41:32,029 AUTHENTICITY, INTENTIONALITY. 6711 03:41:32,029 --> 03:41:33,764 TO ME, THAT'S ALL A PART OF THAT 6712 03:41:33,764 --> 03:41:34,265 LIBERATION WORD. 6713 03:41:34,265 --> 03:41:35,566 I'D LOVE FOR YOU TO COMMENT ON 6714 03:41:35,566 --> 03:41:35,766 THAT. 6715 03:41:35,766 --> 03:41:37,535 >> ABSOLUTELY. 6716 03:41:37,535 --> 03:41:39,036 AND I COMMENTED THIS IN THE CHAT 6717 03:41:39,036 --> 03:41:40,371 EARLIER, BUT IT'S ALL ABOUT 6718 03:41:40,371 --> 03:41:41,172 RELATIONSHIP BUILDING. 6719 03:41:41,172 --> 03:41:42,340 ESPECIALLY WHEN WE THINK OF 6720 03:41:42,340 --> 03:41:44,675 COMMUNITIES OF COLOR, WE HAVE TO 6721 03:41:44,675 --> 03:41:46,544 CONSIDER THAT THE VAST MAJORITY 6722 03:41:46,544 --> 03:41:48,846 OF THESE COMMUNITIES ARE 6723 03:41:48,846 --> 03:41:49,513 COLLECTIVIST COMMUNITIES. 6724 03:41:49,513 --> 03:41:51,649 THEY RELY ON THE INTERDEPENDENCE 6725 03:41:51,649 --> 03:41:54,118 BETWEEN THEMSELVES AND OTHERS 6726 03:41:54,118 --> 03:41:55,753 WITHIN THEIR COMMUNITY. 6727 03:41:55,753 --> 03:41:57,722 AND SO WHEN WE TALK ABOUT HEALTH 6728 03:41:57,722 --> 03:41:58,956 OF AN INDIVIDUAL, WE'RE TALKING 6729 03:41:58,956 --> 03:42:01,492 ABOUT THE HEALTH OF A COMMUNITY, 6730 03:42:01,492 --> 03:42:02,026 REALLY. 6731 03:42:02,026 --> 03:42:02,660 WE'RE TALKING ABOUT THE HEALTH 6732 03:42:02,660 --> 03:42:03,794 OF A FAMILY. 6733 03:42:03,794 --> 03:42:04,428 WE'RE TALKING ABOUT THE HEALTH 6734 03:42:04,428 --> 03:42:05,563 OF A NEIGHBORHOOD. 6735 03:42:05,563 --> 03:42:10,901 SO IT'S VITAL THAT WE'RE ABLE TO 6736 03:42:10,901 --> 03:42:11,669 ACTUALLY REACH OUT TO 6737 03:42:11,669 --> 03:42:12,870 INDIVIDUALS WITHIN THESE 6738 03:42:12,870 --> 03:42:13,537 COMMUNITIES FROM THE GET-GO, 6739 03:42:13,537 --> 03:42:16,073 FROM INITIATION OF OUR PLANNING 6740 03:42:16,073 --> 03:42:19,577 TO ACTUALLY BE ABLE TO CREATE 6741 03:42:19,577 --> 03:42:20,511 THESE RELATIONSHIPS. 6742 03:42:20,511 --> 03:42:22,747 SO WHEN I TALK ABOUT LIBERATION, 6743 03:42:22,747 --> 03:42:27,485 I LIKE TO THINK OF IT AS THERE'S 6744 03:42:27,485 --> 03:42:28,819 THIS GRAPHIC THAT I'M SURE MANY 6745 03:42:28,819 --> 03:42:29,687 OF YOU HAVE SEEN WITH PEOPLE 6746 03:42:29,687 --> 03:42:31,856 STANDING OUT IN A BASEBALL 6747 03:42:31,856 --> 03:42:36,127 FIELD, IN FRONT OF THEM IS A 6748 03:42:36,127 --> 03:42:38,329 FENCE, AND SO IF WE WERE TO TALK 6749 03:42:38,329 --> 03:42:41,165 EQUALITY, ALL OF THESE PEOPLE, 6750 03:42:41,165 --> 03:42:42,166 REGARDLESS OF HEIGHT, ARE 6751 03:42:42,166 --> 03:42:46,137 STABBING ONSTANDING ON THIS FENE 6752 03:42:46,137 --> 03:42:48,239 MAY BE ABLE TO SEE WHAT'S ON THE 6753 03:42:48,239 --> 03:42:49,206 BASEBALL FIELD, SOME MIGHT NOT 6754 03:42:49,206 --> 03:42:50,641 BE ABLE TO SEE WHAT'S ON THE 6755 03:42:50,641 --> 03:42:51,742 BASEBALL FIELD. 6756 03:42:51,742 --> 03:42:53,844 BUT THEN IF WE'RE TALKING ABOUT 6757 03:42:53,844 --> 03:42:54,945 EQUITY, MAYBE THE LITTLELESS KID 6758 03:42:54,945 --> 03:42:56,280 GETS A BOX AND HE CAN SEE OVER 6759 03:42:56,280 --> 03:42:57,581 THE FENCE AND THEN HE CAN SEE 6760 03:42:57,581 --> 03:42:58,816 WHAT'S HAPPENING IN THE BASEBALL 6761 03:42:58,816 --> 03:42:59,250 FIELD. 6762 03:42:59,250 --> 03:43:00,551 BUT IF WE'RE TALKING ABOUT 6763 03:43:00,551 --> 03:43:02,319 LIBERATION, LET'S REMOVE THE 6764 03:43:02,319 --> 03:43:02,753 FENCE ALL TOGETHER. 6765 03:43:02,753 --> 03:43:03,421 AND YOU KNOW WHAT, LET'S 6766 03:43:03,421 --> 03:43:05,623 QUESTION WHY ARE THEY OUTSIDE OF 6767 03:43:05,623 --> 03:43:06,724 THE BASEBALL STADIUM TO BEGIN 6768 03:43:06,724 --> 03:43:07,925 WITH? 6769 03:43:07,925 --> 03:43:08,726 WHY AREN'T THEY IN THE STANDS? 6770 03:43:08,726 --> 03:43:11,562 WHY AREN'T THEY IN THE FRONT ROW 6771 03:43:11,562 --> 03:43:12,229 OF THE STANDS? 6772 03:43:12,229 --> 03:43:13,864 SO WHEN WE TALK ABOUT 6773 03:43:13,864 --> 03:43:14,765 LIBERATION, WE'RE TALKING ABOUT 6774 03:43:14,765 --> 03:43:16,066 GETTING RID OF THOSE BARRIERS. 6775 03:43:16,066 --> 03:43:17,668 AND THE KEY TO GETTING RID OF 6776 03:43:17,668 --> 03:43:21,005 THESE BARRIERS WITH RESEARCH, 6777 03:43:21,005 --> 03:43:22,973 WITH EDUCATION, WITH ANYTHING, 6778 03:43:22,973 --> 03:43:25,309 IS REALLY TO BUILD THOSE 6779 03:43:25,309 --> 03:43:27,378 RELATIONSHIPS, TO BUILD THAT 6780 03:43:27,378 --> 03:43:27,745 TRUST. 6781 03:43:27,745 --> 03:43:31,115 TO GO OUT AND NOT JUST TALK 6782 03:43:31,115 --> 03:43:32,883 ABOUT AUTHENTICITY BUT LIVE IT. 6783 03:43:32,883 --> 03:43:35,319 ACTUALLY GO OUT, ASK QUESTIONS, 6784 03:43:35,319 --> 03:43:37,488 YOU KNOW, GET ANSWERS AND 6785 03:43:37,488 --> 03:43:39,590 QUESTION IF YOU FEEL A FUNKY WAY 6786 03:43:39,590 --> 03:43:41,225 ABOUT THE ANSWER THAT YOU'RE 6787 03:43:41,225 --> 03:43:42,760 GETTING, ASK YOURSELF WHY? 6788 03:43:42,760 --> 03:43:46,597 WHAT IS GOING ON IN ME, WHAT 6789 03:43:46,597 --> 03:43:47,798 BIAS MIGHT I HAVE HERE THAT 6790 03:43:47,798 --> 03:43:50,000 MIGHT LEAD TO ME FEELING THIS 6791 03:43:50,000 --> 03:43:51,435 TYPE OF WAY ABOUT THE WAY THAT 6792 03:43:51,435 --> 03:43:53,070 THIS PERSON IN THIS COMMUNITY 6793 03:43:53,070 --> 03:43:53,404 ANSWERED? 6794 03:43:53,404 --> 03:43:56,173 IT'S REALLY VITAL THAT WHEN WE 6795 03:43:56,173 --> 03:43:58,909 TALK ABOUT EQUITY FOR RESEARCH, 6796 03:43:58,909 --> 03:44:00,878 FOR EDUCATION, FOR ANYTHING THAT 6797 03:44:00,878 --> 03:44:05,049 WE ARE ABLE TO ACTUALLY CHECK IN 6798 03:44:05,049 --> 03:44:06,283 ON OURSELVES CONSTANTLY. 6799 03:44:06,283 --> 03:44:07,718 IF WE TALK ABOUT SUSTAINABILITY, 6800 03:44:07,718 --> 03:44:09,320 IT HAS TO BE CONSTANT. 6801 03:44:09,320 --> 03:44:10,754 EDUCATION TO OURSELVES, 6802 03:44:10,754 --> 03:44:12,656 EDUCATION TO THOSE AROUND US HAS 6803 03:44:12,656 --> 03:44:14,291 TO BE CONSTANT. 6804 03:44:14,291 --> 03:44:15,693 AND THESE RELATIONSHIPS HAVE TO 6805 03:44:15,693 --> 03:44:16,660 BE CONSTANT. 6806 03:44:16,660 --> 03:44:20,130 SO JUST AS MS. CHAMBERS SAID 6807 03:44:20,130 --> 03:44:21,232 ABOUT A HUNDRED CUPS OF COFFEE, 6808 03:44:21,232 --> 03:44:23,234 YEAH, ABOUT OUT THERE AND GO 6809 03:44:23,234 --> 03:44:23,868 HAVE COFFEE WITH THE FOLKS THAT 6810 03:44:23,868 --> 03:44:24,869 YOU'RE TRYING TO REACH. 6811 03:44:24,869 --> 03:44:28,138 GO GET INTO THESE SPACES IN 6812 03:44:28,138 --> 03:44:30,241 WHICH THERE ARE COMMUNITY HUBS, 6813 03:44:30,241 --> 03:44:32,409 THAT THERE ARE CULTURAL HUBS 6814 03:44:32,409 --> 03:44:33,911 THAT MIGHT BE THESE AFFIRMING 6815 03:44:33,911 --> 03:44:35,045 SAFE SPACES FOR INDIVIDUALS. 6816 03:44:35,045 --> 03:44:38,682 AND WE ALSO HAVE TO REMEMBER 6817 03:44:38,682 --> 03:44:39,583 THAT THESE CONCEPTS ARE NOT NEW, 6818 03:44:39,583 --> 03:44:41,218 THESE CONCEPTS OF AFFIRMING SAFE 6819 03:44:41,218 --> 03:44:42,086 SPACES ARE NOT NEW. 6820 03:44:42,086 --> 03:44:44,088 MANY OF THESE -- MANY OF THESE 6821 03:44:44,088 --> 03:44:45,489 COMMUNITIES AND CULTURES HAVE 6822 03:44:45,489 --> 03:44:49,426 BEEN DOING THESE PRACTICES FOR 6823 03:44:49,426 --> 03:44:51,996 YEARS, FOR HUNDREDS OF YEARS, 6824 03:44:51,996 --> 03:44:52,530 FOR THOUSANDS OF YEARS. 6825 03:44:52,530 --> 03:44:54,498 SO AS WE'RE TALKING ABOUT 6826 03:44:54,498 --> 03:44:55,132 RESEARCH, WE'RE NOT TALKING 6827 03:44:55,132 --> 03:44:56,033 ABOUT THIS NEW CONCEPT. 6828 03:44:56,033 --> 03:44:57,334 WE HAVE TO REALIZE THAT MANY OF 6829 03:44:57,334 --> 03:44:58,035 THESE COMMUNITIES HAVE BEEN 6830 03:44:58,035 --> 03:44:59,470 TAKING CARE OF THEMSELVES 6831 03:44:59,470 --> 03:45:01,238 BECAUSE THEY RELY ON EACH OTHER 6832 03:45:01,238 --> 03:45:02,573 SO MUCH AND BECAUSE THEY FRANKLY 6833 03:45:02,573 --> 03:45:04,074 HAVE NOT HAD THE SUPPORT THEY 6834 03:45:04,074 --> 03:45:04,742 NEED OUTSIDE OF THAT. 6835 03:45:04,742 --> 03:45:06,310 SO THEY HAVE HAD NO CHOICE BUT 6836 03:45:06,310 --> 03:45:08,279 TO RELY ON THEMSELVES IN ORDER 6837 03:45:08,279 --> 03:45:10,347 TO GET THEIR COMMUNITY INTO A 6838 03:45:10,347 --> 03:45:12,850 PLACE IN WHICH THEY FEEL 6839 03:45:12,850 --> 03:45:13,484 COMFORTABLE AND WHICH THEY FEEL 6840 03:45:13,484 --> 03:45:14,385 IT IS HEALTHY. 6841 03:45:14,385 --> 03:45:16,453 SO WE HAVE TO BE ABLE TO LOOK TO 6842 03:45:16,453 --> 03:45:17,821 THE COMMUNITY, WE HAVE TO BE 6843 03:45:17,821 --> 03:45:19,056 ABLE TO TALK TO FOLKS, WE HAVE 6844 03:45:19,056 --> 03:45:20,391 TO MEET THEM WHERE THEY'RE AT, 6845 03:45:20,391 --> 03:45:21,692 WE HAVE TO ALSO UNDERSTAND THAT 6846 03:45:21,692 --> 03:45:23,027 WE'RE NOT GOING TO KNOW 6847 03:45:23,027 --> 03:45:23,794 EVERYTHING, YOU KNOW? 6848 03:45:23,794 --> 03:45:25,095 ONE OF THE TERMS I HATE THE MOST 6849 03:45:25,095 --> 03:45:27,731 IS THE IDEA OF CULTURAL 6850 03:45:27,731 --> 03:45:28,032 COMPETENCE. 6851 03:45:28,032 --> 03:45:28,532 WE'RE NOT TALKING ABOUT 6852 03:45:28,532 --> 03:45:28,832 COMPETENCE. 6853 03:45:28,832 --> 03:45:30,701 WE ARE NEVER TALKING ABOUT 6854 03:45:30,701 --> 03:45:31,035 COMPETENCE. 6855 03:45:31,035 --> 03:45:33,771 NOT YOU, NOR I, NOR ANYONE ELSE 6856 03:45:33,771 --> 03:45:36,440 HERE WILL EVER BE ABLE TO SAY I 6857 03:45:36,440 --> 03:45:38,509 KNOW 100% ABOUT XYZ COMMUNITY. 6858 03:45:38,509 --> 03:45:40,177 NO, YOU DON'T. 6859 03:45:40,177 --> 03:45:40,945 BECAUSE EVEN IF YOU THINK YOU 6860 03:45:40,945 --> 03:45:43,781 DO, YOU DON'T KNOW EACH 6861 03:45:43,781 --> 03:45:44,348 INDIVIDUAL'S EXPERIENCE. 6862 03:45:44,348 --> 03:45:46,750 AND THAT IS ABSOLUTELY VITAL 6863 03:45:46,750 --> 03:45:49,553 THAT WE ARE ABLE TO DO. 6864 03:45:49,553 --> 03:45:52,256 >> I LOVE THAT CONCEPT. 6865 03:45:52,256 --> 03:45:53,624 MS. FAIRLEY, WE'RE ALMOST AT THE 6866 03:45:53,624 --> 03:45:55,693 FIVE MINUTE MARK, WE'RE A LITTLE 6867 03:45:55,693 --> 03:45:56,660 OVER BUT WITHIN THIS LAST FOUR 6868 03:45:56,660 --> 03:45:57,661 MINUTES, I'M GOING TO ASK EACH 6869 03:45:57,661 --> 03:46:00,164 OF YOU TO TAKE 45 SECONDS FOR A 6870 03:46:00,164 --> 03:46:00,531 CALL TO ACTION. 6871 03:46:00,531 --> 03:46:02,700 I'M GOING TO START WITH YOU, MSU 6872 03:46:02,700 --> 03:46:04,401 WANT TO RESPOND TO WHAT 6873 03:46:04,401 --> 03:46:05,603 MS. TORRES SAID BUT AFTER YOUR 6874 03:46:05,603 --> 03:46:06,770 RESPONSE, IF YOU COULD END US 6875 03:46:06,770 --> 03:46:08,205 WITH YOUR 452ND CALL TO ACTION. 6876 03:46:08,205 --> 03:46:08,973 >> SURE. 6877 03:46:08,973 --> 03:46:09,907 AND I'LL TRY TO DO IT ALL 6878 03:46:09,907 --> 03:46:10,341 TOGETHER. 6879 03:46:10,341 --> 03:46:11,976 SO YOU KNOW, WE LIVE IN THIS 6880 03:46:11,976 --> 03:46:13,644 WORLD OF HEALTH INEQUITY. 6881 03:46:13,644 --> 03:46:15,512 WE DON'T HAVE HEALTH EQUITY. 6882 03:46:15,512 --> 03:46:16,714 AND THE ONLY WAY WE'RE EVER 6883 03:46:16,714 --> 03:46:19,650 GOING TO GET IT IS IF EVERYBODY 6884 03:46:19,650 --> 03:46:21,418 PRACTICES THE GOLDEN RULE. 6885 03:46:21,418 --> 03:46:22,820 WHAT YOUR MOTHER TAUGHT YOU WHEN 6886 03:46:22,820 --> 03:46:24,488 YOU WERE 2 YEARS OLD. 6887 03:46:24,488 --> 03:46:25,589 TREAT OTHERS AS YOU WANT TO BE 6888 03:46:25,589 --> 03:46:28,459 TREATED. 6889 03:46:28,459 --> 03:46:29,760 AND FRANKLY, I DEAL WITH A LOT 6890 03:46:29,760 --> 03:46:32,730 OF SICK BLACK WOMEN, AND I -- 6891 03:46:32,730 --> 03:46:35,065 I'M A BAD ASS BUT I KNOW I CAN'T 6892 03:46:35,065 --> 03:46:39,870 CHANGE THE MINDSET OF, YOU KNOW, 6893 03:46:39,870 --> 03:46:42,006 RACIST -- OR A WHITE DAR WITH 6894 03:46:42,006 --> 03:46:42,306 ELICIT BIAS. 6895 03:46:42,306 --> 03:46:43,207 I CAN'T CHANGE THOSE DOCTORS 6896 03:46:43,207 --> 03:46:44,408 THAT AREN'T CARING ABOUT OUR 6897 03:46:44,408 --> 03:46:44,842 COMMUNITY. 6898 03:46:44,842 --> 03:46:46,677 BUT WHAT I CAN DO IS I CAN 6899 03:46:46,677 --> 03:46:47,177 EDUCATE BLACK WOMEN. 6900 03:46:47,177 --> 03:46:49,346 AND I CAN TEACH THEM HOW TO 6901 03:46:49,346 --> 03:46:51,215 DEMAND THE CARE THEY DESERVE. 6902 03:46:51,215 --> 03:46:52,783 HOW TO SAY, HOLD ON, DOC, IS 6903 03:46:52,783 --> 03:46:55,052 THAT WHAT YOU -- IS THAT THE 6904 03:46:55,052 --> 03:46:56,286 TREATMENT YOU WOULD GIVE TO YOUR 6905 03:46:56,286 --> 03:47:01,759 MOM, YOUR GRANDMA, YOUR AUNTUE,, 6906 03:47:01,759 --> 03:47:02,326 YOUR DAUGHTER? 6907 03:47:02,326 --> 03:47:03,460 I CAN EQUIP THEM WITH THE 6908 03:47:03,460 --> 03:47:04,461 INFORMATION THEY NEED TO DEMAND 6909 03:47:04,461 --> 03:47:06,196 THE QUALITY OF HEALTHCARE THEY 6910 03:47:06,196 --> 03:47:06,430 DESERVE. 6911 03:47:06,430 --> 03:47:07,798 SO THAT'S WHERE I FOCUS MY 6912 03:47:07,798 --> 03:47:08,098 ENERGY. 6913 03:47:08,098 --> 03:47:09,199 AND I THINK WHEN YOU START 6914 03:47:09,199 --> 03:47:10,734 WORKING IN THE COMMUNITY, THAT'S 6915 03:47:10,734 --> 03:47:12,503 WHERE WE CAN MAKE A DIFFERENCE. 6916 03:47:12,503 --> 03:47:13,370 WE CAN TEACH OUR COMMUNITY, WE 6917 03:47:13,370 --> 03:47:16,874 CAN TEACH OUR MEEM TO SAY HOLD 6918 03:47:16,874 --> 03:47:18,742 ORANGES WAIT A MINUTE, TAKE YOUR 6919 03:47:18,742 --> 03:47:21,011 HAND OFF, I'M NOT DONE OR GUESS 6920 03:47:21,011 --> 03:47:22,479 WHAT, DOCTOR, YOU'RE FIRED, 6921 03:47:22,479 --> 03:47:24,481 YOU'RE NOT GIVING ME THE CARE I 6922 03:47:24,481 --> 03:47:26,684 DI SERVE. 6923 03:47:26,684 --> 03:47:26,917 DESERVE. 6924 03:47:26,917 --> 03:47:28,152 THAT'S WHERE WE CAN FOCUS AND 6925 03:47:28,152 --> 03:47:29,420 HELP OUR PEOPLE UNDERSTAND THAT 6926 03:47:29,420 --> 03:47:31,422 THEY ARE, WE ARE THE CEOs OF 6927 03:47:31,422 --> 03:47:32,956 OUR OWN HEALTH AND WE CAN TAKE 6928 03:47:32,956 --> 03:47:34,591 IT INTO OUR CONTROL AND DO RIGHT 6929 03:47:34,591 --> 03:47:36,393 BY OURSELVES WHEN OTHERS AREN'T 6930 03:47:36,393 --> 03:47:37,094 DOING RIGHT BY US. 6931 03:47:37,094 --> 03:47:38,996 >> THANK YOU SO MUCH. 6932 03:47:38,996 --> 03:47:40,164 REVEREND CURRY, WE'RE GOING TO 6933 03:47:40,164 --> 03:47:42,232 COME TO YOU FOR A 32ND CALL TO 6934 03:47:42,232 --> 03:47:43,000 ACTION. 6935 03:47:43,000 --> 03:47:45,169 >> I ENCOURAGE EVERY SINGLE 6936 03:47:45,169 --> 03:47:50,874 PERSON ON HERE TO MAKE SURE THEY 6937 03:47:50,874 --> 03:47:53,077 MAJOR IN FOUR THINGS, I'LL JUST 6938 03:47:53,077 --> 03:47:54,945 ILL LIT RATE THEM WITH THE Ls. 6939 03:47:54,945 --> 03:48:00,584 EVERY NE NEEDS TO SEEK LIGHT. 6940 03:48:00,584 --> 03:48:01,251 ENLIGHTENMENT, INFORMATION, 6941 03:48:01,251 --> 03:48:02,453 LEARNING AS MUCH AS THEY K NOT 6942 03:48:02,453 --> 03:48:04,555 ONLY FOR YOUR SAKE, BUT FOR THE 6943 03:48:04,555 --> 03:48:07,858 SAKE OF OTHERS. 6944 03:48:07,858 --> 03:48:09,059 WHEN YOU LEARN AND HAVE THAT 6945 03:48:09,059 --> 03:48:10,260 LIGHT, YOU'RE ABLE TO SHARE THAT 6946 03:48:10,260 --> 03:48:10,561 LIGHT. 6947 03:48:10,561 --> 03:48:12,129 I WANT TO ALSO TELL YOU THAT 6948 03:48:12,129 --> 03:48:16,300 YOU'RE NOT ONLY LIVING BASED ON 6949 03:48:16,300 --> 03:48:18,035 YOUR OWN -- FOR YOUR OWN SELVES. 6950 03:48:18,035 --> 03:48:20,437 WE'RE LIVING ON BEHALF OF EACH 6951 03:48:20,437 --> 03:48:20,637 OTHER. 6952 03:48:20,637 --> 03:48:22,473 WE ARE COMMUNITY. 6953 03:48:22,473 --> 03:48:24,241 AND THE ONLY THING WE HAVE IS 6954 03:48:24,241 --> 03:48:24,675 US. 6955 03:48:24,675 --> 03:48:27,244 AND WE HAVE TO BE FOR US, BY US, 6956 03:48:27,244 --> 03:48:30,414 THROUGH US, AROUND US, AND WITH 6957 03:48:30,414 --> 03:48:32,049 US SO THAT WE CAN MOVE TOGETHER. 6958 03:48:32,049 --> 03:48:33,951 BUT I'LL ALSO SAY, WE NEED TO 6959 03:48:33,951 --> 03:48:35,719 THINK ABOUT WHAT MS. TORRES SAID 6960 03:48:35,719 --> 03:48:38,455 IN TERMS OF LIBERATION. 6961 03:48:38,455 --> 03:48:39,523 LIBERATION IS SOMETHING WE NEED 6962 03:48:39,523 --> 03:48:41,658 TO THINK ABOUT DEEPLY. 6963 03:48:41,658 --> 03:48:43,927 AND IT'S ONLY WHEN THE OPPRESSED 6964 03:48:43,927 --> 03:48:45,796 AND THE OPPRESSOR GOES FREE THAT 6965 03:48:45,796 --> 03:48:47,331 WE ARE TOTALLY LIBERATED. 6966 03:48:47,331 --> 03:48:50,100 SO IF I'M STUCK AND YOU'RE NOT 6967 03:48:50,100 --> 03:48:52,836 WILLING TO UNSTICK ME OR HELP ME 6968 03:48:52,836 --> 03:48:55,472 GET UNSTUCK, THEN I'M STILL 6969 03:48:55,472 --> 03:48:58,909 BOUND, YOU'RE STILL BOUND, AND 6970 03:48:58,909 --> 03:48:59,877 WE'RE STILL CAUGHT IN THE SAME 6971 03:48:59,877 --> 03:49:00,744 THING WE HAD BEFORE. 6972 03:49:00,744 --> 03:49:02,346 IF WE ARE GOING TO LIBERATE ONE 6973 03:49:02,346 --> 03:49:05,415 ANOTHER, WE HAVE TO NOT ONLY DO 6974 03:49:05,415 --> 03:49:07,785 THINGS WITH, WE HAVE TO ALSO 6975 03:49:07,785 --> 03:49:09,787 TREAT ANOTHER AS THOUGH THEY 6976 03:49:09,787 --> 03:49:12,456 HAVE A KINSHIP RELATIONSHIP TO 6977 03:49:12,456 --> 03:49:13,957 US. 6978 03:49:13,957 --> 03:49:16,160 SO WE EXTEND OUR OLIVE BRANCH, 6979 03:49:16,160 --> 03:49:17,694 LET EVERYBODY KNOW THAT I'VE 6980 03:49:17,694 --> 03:49:21,498 EXTENDED MYOLI MYO OLIVE BRANCHI 6981 03:49:21,498 --> 03:49:23,300 WANT TO BE FREE, DO YOU WANT TO 6982 03:49:23,300 --> 03:49:24,101 BE FREE AS WELL. 6983 03:49:24,101 --> 03:49:24,835 AND THE LAST THING IN TERMS OF 6984 03:49:24,835 --> 03:49:27,905 LOVE, I WILL JUST SAY THIS. 6985 03:49:27,905 --> 03:49:29,573 WHAT MS. CHAMBERS SAID ABOUT 6986 03:49:29,573 --> 03:49:32,009 LOVE IS REALLY FOUND IN 101s. 6987 03:49:32,009 --> 03:49:35,579 IT'S HAVING THOSE 100 CUPS OF 6988 03:49:35,579 --> 03:49:36,213 COFFEE, LITERALLY TELLING 6989 03:49:36,213 --> 03:49:38,816 EVERYBODY AND THE WORLD THAT WE 6990 03:49:38,816 --> 03:49:41,885 MUST DO WHAT IS NECESSARY TO 6991 03:49:41,885 --> 03:49:43,587 TRANSFORM THE WORLD THROUGH OUR 6992 03:49:43,587 --> 03:49:46,056 LOVE OF ONE ANOTHER. 6993 03:49:46,056 --> 03:49:47,958 >> AND ON THAT NOTE, REVEREND 6994 03:49:47,958 --> 03:49:50,294 CURRY, I APOLOGIZE TO THE OTHER 6995 03:49:50,294 --> 03:49:50,894 PANELISTS, WE'LL HAVE TO END 6996 03:49:50,894 --> 03:49:52,062 WITH THE CONCEPT OF LOVE AND 6997 03:49:52,062 --> 03:49:52,930 WE'LL HAVE TO PICK UP THIS 6998 03:49:52,930 --> 03:49:54,164 CONVERSATION ON OUR NEXT PANEL. 6999 03:49:54,164 --> 03:49:54,965 THANK YOU ALL SO MUCH. 7000 03:49:54,965 --> 03:49:55,666 PLEASE CONTINUE THIS 7001 03:49:55,666 --> 03:49:56,266 CONVERSATION IN THE CHAT, AND 7002 03:49:56,266 --> 03:49:57,835 THANK YOU. 7003 03:49:57,835 --> 03:49:59,770 >> THANKS FOR HAVING US, YOU 7004 03:49:59,770 --> 03:49:59,970 GUYS. 7005 03:49:59,970 --> 03:50:00,504 HAVE A BLESSED DAY. 7006 03:50:00,504 --> 03:50:01,605 >> THANK YOU FOR HAVING US. 7007 03:50:01,605 --> 03:50:02,506 HAVE A BLESSED DAY. 7008 03:50:02,506 --> 03:50:04,608 THANK YOU, PANELISTS. 7009 03:50:04,608 --> 03:50:05,776 YOU'RE AMAZING. 7010 03:50:05,776 --> 03:50:06,043 >> GREAT. 7011 03:50:06,043 --> 03:50:07,044 TAKE CARE, EVERYBODY. 7012 03:50:07,044 --> 03:50:09,079 >> BYE-BYE. 7013 03:50:09,079 --> 03:50:09,947 >> WOW! 7014 03:50:09,947 --> 03:50:11,915 I JUST NEED TO TAKE A MOMENT TO 7015 03:50:11,915 --> 03:50:12,916 ACKNOWLEDGE THAT LAST PANEL. 7016 03:50:12,916 --> 03:50:15,252 WHAT AN INCREDIBLE CONVERSATION. 7017 03:50:15,252 --> 03:50:17,020 APPLAUSE FOR EVERYBODY, PLEASE. 7018 03:50:17,020 --> 03:50:17,554 THAT WAS GREAT. 7019 03:50:17,554 --> 03:50:19,756 THANKS TO ALL THOSE PANELISTS. 7020 03:50:19,756 --> 03:50:21,058 DR. WATSON, GREAT JOB 7021 03:50:21,058 --> 03:50:21,758 MODERATING. 7022 03:50:21,758 --> 03:50:23,193 SO MUCH ENERGY, SO MANY GREAT 7023 03:50:23,193 --> 03:50:23,827 IDEAS. 7024 03:50:23,827 --> 03:50:26,897 THAT'S FANTASTIC. 7025 03:50:26,897 --> 03:50:28,298 SO I'M HOPING WE CAN MAINTAIN 7026 03:50:28,298 --> 03:50:29,266 THAT ENERGY WE HEARD IN THAT 7027 03:50:29,266 --> 03:50:33,871 PANEL WITH OUR NEXT PANEL. 7028 03:50:33,871 --> 03:50:36,306 IT IS MY GREAT PLEASURE TO 7029 03:50:36,306 --> 03:50:37,407 WELCOME EVERYONE GREAT DAY, 7030 03:50:37,407 --> 03:50:38,909 FEATURING PERSPECTIVES FROM 7031 03:50:38,909 --> 03:50:41,178 FUNDERS, REGULATORY AGENCIES AND 7032 03:50:41,178 --> 03:50:43,714 POLICY ORGANIZATIONS. 7033 03:50:43,714 --> 03:50:46,450 I'M BOB MCNELLIS, NIH'S OFFICE 7034 03:50:46,450 --> 03:50:47,317 OF DISEASE PREVENTION. 7035 03:50:47,317 --> 03:50:49,887 IT'S MY HONOR TO BE MODERATING 7036 03:50:49,887 --> 03:50:51,088 THIS PANEL WITH THE STELLAR CAST 7037 03:50:51,088 --> 03:50:51,421 HERE. 7038 03:50:51,421 --> 03:50:52,956 WE HAVE ANOTHER AMAZING PANEL 7039 03:50:52,956 --> 03:50:55,058 FOR YOU THIS AFTERNOON. 7040 03:50:55,058 --> 03:50:56,159 THIS IS THE FINAL PANEL FOR THIS 7041 03:50:56,159 --> 03:50:58,028 WONDERFUL WORKSHOP. 7042 03:50:58,028 --> 03:50:59,129 THEY'RE ESSENTIALLY THE CLOSERS, 7043 03:50:59,129 --> 03:51:00,831 TO BORROW A TERM FROM BASEBALL'S 7044 03:51:00,831 --> 03:51:02,132 OPENING DAY, AND HOPEFULLY THEY 7045 03:51:02,132 --> 03:51:03,133 CAN HELP BRING IT ALL TOGETHER 7046 03:51:03,133 --> 03:51:04,234 FOR US. 7047 03:51:04,234 --> 03:51:05,736 SO I'D INVITE ALL OF OUR 7048 03:51:05,736 --> 03:51:07,337 PANELISTS TO COME ON VIDEO NOW. 7049 03:51:07,337 --> 03:51:10,107 WHAT I'M GOING TO DO IS A LITTLE 7050 03:51:10,107 --> 03:51:10,641 DIFFERENTLY, I'M GOING TO 7051 03:51:10,641 --> 03:51:11,241 INTRODUCE THE PANEL FIRST AND 7052 03:51:11,241 --> 03:51:17,881 THEN I WILL ASK FOR SOME 7053 03:51:17,881 --> 03:51:18,515 INTRODUCTORY REMARKS AND HAVE Q 7054 03:51:18,515 --> 03:51:19,516 & A. 7055 03:51:19,516 --> 03:51:20,350 BRITTANY GERALD IS SENIOR 7056 03:51:20,350 --> 03:51:21,785 MANAGER FOR CLINICAL TRIAL 7057 03:51:21,785 --> 03:51:23,086 DIVERSITY AND INCLUSION AT 7058 03:51:23,086 --> 03:51:23,553 MODERNA. 7059 03:51:23,553 --> 03:51:25,555 WE HAVE DR. PETER EMBI, 7060 03:51:25,555 --> 03:51:26,356 PROFESSOR AND CHAIR OF THE 7061 03:51:26,356 --> 03:51:28,258 DEPARTMENT OF BIOMEDICAL 7062 03:51:28,258 --> 03:51:29,159 INFORMATICS, PROFESSOR OF 7063 03:51:29,159 --> 03:51:30,727 MEDICINE, AND SENIOR VICE 7064 03:51:30,727 --> 03:51:32,696 PRESIDENT FOR RESEARCH AND 7065 03:51:32,696 --> 03:51:33,864 INNOVATION AT VANDERBILT 7066 03:51:33,864 --> 03:51:35,032 UNIVERSITY MEDICAL CENTER. 7067 03:51:35,032 --> 03:51:37,134 JOINING US ALSO TODAY, WE HAVE 7068 03:51:37,134 --> 03:51:38,302 DR. ROBERT CALIFF, THE 25TH 7069 03:51:38,302 --> 03:51:39,069 COMMISSIONER OF FOOD AND DRUGS 7070 03:51:39,069 --> 03:51:41,538 AT THE U.S. FOOD AND DRUG 7071 03:51:41,538 --> 03:51:41,905 ADMINISTRATION. 7072 03:51:41,905 --> 03:51:45,242 WE ALSO HAVE DR. NAKELA COOK, 7073 03:51:45,242 --> 03:51:46,576 EXECUTIVE DIRECTOR OF THE 7074 03:51:46,576 --> 03:51:48,145 PATIENT-CENTERED OUTCOMES 7075 03:51:48,145 --> 03:51:49,146 RESEARCH INSTITUTE OR PCORI. 7076 03:51:49,146 --> 03:51:58,255 THEN MS. JENNY LURAY, 7077 03:51:58,255 --> 03:52:00,891 RESEARCH!AMERICA. 7078 03:52:00,891 --> 03:52:03,727 DR. OLGA HERREN, COAL MODERATOR, 7079 03:52:03,727 --> 03:52:05,762 AND DR. HERREN WILL BE HELPING 7080 03:52:05,762 --> 03:52:06,730 TO GATHER QUESTIONS FROM THE 7081 03:52:06,730 --> 03:52:07,364 AUDIENCE. 7082 03:52:07,364 --> 03:52:08,932 THIS SESSION IS MEANT TO BE 7083 03:52:08,932 --> 03:52:10,100 INTERACTIVE LIKE THE LAST ONE. 7084 03:52:10,100 --> 03:52:10,734 SO IF YOU HAVE A QUESTION FOR 7085 03:52:10,734 --> 03:52:12,269 ANY OF OUR PANELISTS, RAISE YOUR 7086 03:52:12,269 --> 03:52:14,037 HAND, PUT YOUR QUESTION IN THE 7087 03:52:14,037 --> 03:52:15,038 CHAT, SEND TO THE WORKSHOP EMAIL 7088 03:52:15,038 --> 03:52:16,340 ADDRESS IN THE LIVE FEEDBACK IN 7089 03:52:16,340 --> 03:52:17,574 THE VIDEOCAST, YOU KNOW THE 7090 03:52:17,574 --> 03:52:18,842 DRILL AT THIS POINT, WE'RE THE 7091 03:52:18,842 --> 03:52:19,343 LAST PANEL OF THE DAY. 7092 03:52:19,343 --> 03:52:22,079 WE ONLY HAVE ABOUT 35, 40 7093 03:52:22,079 --> 03:52:22,846 MINUTES FOR THIS DISCUSSION SO 7094 03:52:22,846 --> 03:52:23,847 LET'S GET IT ROLLING. 7095 03:52:23,847 --> 03:52:24,881 I'M GOING TO START BY EACH YOU 7096 03:52:24,881 --> 03:52:26,183 TO TAKE ABOUT 60 SECONDS TO 7097 03:52:26,183 --> 03:52:28,318 PROVIDE SOME INTRODUCTORY 7098 03:52:28,318 --> 03:52:28,952 REMARKS ON YOUR PERSPECTIVE AND 7099 03:52:28,952 --> 03:52:31,588 YOUR ORGANIZATION'S PERSPECTIVE 7100 03:52:31,588 --> 03:52:33,423 REGARDING INCLUSIVE CLINICAL 7101 03:52:33,423 --> 03:52:36,593 RESEARCH AND AFTER ALL, WE WILL 7102 03:52:36,593 --> 03:52:37,894 DIVE INTO THE Q & A. 7103 03:52:37,894 --> 03:52:38,996 BRITTANY GERALD, CAN YOU START 7104 03:52:38,996 --> 03:52:40,530 OFF WITH SOME OPENING REMARKS, 7105 03:52:40,530 --> 03:52:40,764 PLEASE? 7106 03:52:40,764 --> 03:52:42,165 >> YES, CAN EVERYONE HEAR ME? 7107 03:52:42,165 --> 03:52:43,533 >> CLEAR. 7108 03:52:43,533 --> 03:52:45,035 >> BEAUTIFUL SPRING IN ATLANTA 7109 03:52:45,035 --> 03:52:46,970 BUT THAT ALSO MEANS POLLEN SO 7110 03:52:46,970 --> 03:52:48,939 I'M A LITTLE CONGESTED. 7111 03:52:48,939 --> 03:52:51,308 VERY EXCITED TO BE HERE. 7112 03:52:51,308 --> 03:52:53,143 I AM AT MODERNA AND WE'RE REALLY 7113 03:52:53,143 --> 03:52:54,344 COMMITTED TO DIVERSITY IN 7114 03:52:54,344 --> 03:52:55,012 CLINICAL RESEARCH. 7115 03:52:55,012 --> 03:52:57,280 I KNOW THERE ARE A COUPLE SLIDES 7116 03:52:57,280 --> 03:52:58,915 YESTERDAY ON WHAT WE DID IN OUR 7117 03:52:58,915 --> 03:53:02,285 COVID STUDY BULL -- TO MAKE SURE 7118 03:53:02,285 --> 03:53:03,987 WE'RE INCLUSIVE NOT ONLY FOR OUR 7119 03:53:03,987 --> 03:53:04,988 PARTICIPANTS BUT ALSO OUR 7120 03:53:04,988 --> 03:53:05,889 INVESTIGATORS AND SITES AS WELL 7121 03:53:05,889 --> 03:53:07,724 SO WE REALLY TRY TO MAKE SURE 7122 03:53:07,724 --> 03:53:08,358 THAT WE COMMUNICATE WITH ALL OF 7123 03:53:08,358 --> 03:53:10,761 OUR PARTNERS OUR EXPECTATION OF 7124 03:53:10,761 --> 03:53:11,962 DIVERSE RESEARCH AND THEN WE DO 7125 03:53:11,962 --> 03:53:13,997 HAVE OUR SITES -- THEY ARE 7126 03:53:13,997 --> 03:53:15,332 PROVIDED WITH DEMOGRAPHIC 7127 03:53:15,332 --> 03:53:16,099 OBJECTIVES, SO WHEN THEY ARE 7128 03:53:16,099 --> 03:53:18,435 DOING A STUDY, WE'VE ALIGNED 7129 03:53:18,435 --> 03:53:19,636 WITH WHAT THEIR PATIENT 7130 03:53:19,636 --> 03:53:21,271 POPULATION IS AND PROVIDE THEM 7131 03:53:21,271 --> 03:53:22,706 OBJECTIVES TO MEET DURING THE 7132 03:53:22,706 --> 03:53:25,709 STUDY, AND ALONG THE STUDY WE 7133 03:53:25,709 --> 03:53:27,344 PROVIDE BENCHMARKS TO MAKE SURE 7134 03:53:27,344 --> 03:53:28,111 THEY'RE MEETING THAT. 7135 03:53:28,111 --> 03:53:30,147 EXCITED TO BE ON THIS PAM AND 7136 03:53:30,147 --> 03:53:34,317 PANEL ANDHEAR FROM OTHER PERSPES 7137 03:53:34,317 --> 03:53:34,518 WELL. 7138 03:53:34,518 --> 03:53:35,552 >> TERRIFIC. 7139 03:53:35,552 --> 03:53:36,987 DR. EMBI, WOULD YOU MIND GOING 7140 03:53:36,987 --> 03:53:38,622 ABOUT NEXT, ABOUT 60 SECONDS OF 7141 03:53:38,622 --> 03:53:39,689 INTRO STUFF? 7142 03:53:39,689 --> 03:53:40,290 >> SURE, HAPPY TO. 7143 03:53:40,290 --> 03:53:40,991 HI, EVERYONE. 7144 03:53:40,991 --> 03:53:43,994 PETER EMBI, DEPARTMENT CHAIR OF 7145 03:53:43,994 --> 03:53:44,528 BIOMEDICAL INFORMATICS AND 7146 03:53:44,528 --> 03:53:46,696 SENIOR VICE PRESIDENT HERE AT 7147 03:53:46,696 --> 03:53:47,364 VANDERBILT UNIVERSITY MEDICAL 7148 03:53:47,364 --> 03:53:47,764 CENTER. 7149 03:53:47,764 --> 03:53:50,233 ACTUALLY CUBAN AMERICAN AND 7150 03:53:50,233 --> 03:53:52,202 PHYSICIAN AND A RESEARCHER AND 7151 03:53:52,202 --> 03:53:54,237 MY RESEARCH IN PARTICULAR HAS 7152 03:53:54,237 --> 03:53:55,806 BEEN ON HOW WE CAN IMPROVE 7153 03:53:55,806 --> 03:53:58,375 RECRUITMENT AND PARTICIPATION IN 7154 03:53:58,375 --> 03:53:59,443 CLINICAL TRIALS AND TO DO THAT 7155 03:53:59,443 --> 03:54:00,777 VERY BROADLY TO BE ABLE TO HAVE 7156 03:54:00,777 --> 03:54:01,978 THE BEST EVIDENCE POSSIBLE TO BE 7157 03:54:01,978 --> 03:54:04,448 ABLE TO TREAT ALL OF OUR PEOPLE, 7158 03:54:04,448 --> 03:54:06,850 OF COURSE IN THE U.S., BUT 7159 03:54:06,850 --> 03:54:08,385 ABROAD AS WELL. 7160 03:54:08,385 --> 03:54:10,387 IT DOESN'T GO WITHOUT SAYING 7161 03:54:10,387 --> 03:54:11,721 GENERALLY BUT IN THIS GROUP IT 7162 03:54:11,721 --> 03:54:14,324 MIGHT, THAT IF WE'RE NOT 7163 03:54:14,324 --> 03:54:17,727 INCLUSIVE AND REALLY EMBRACE THE 7164 03:54:17,727 --> 03:54:20,764 IMPORTANCE OF DIVERSITY AND 7165 03:54:20,764 --> 03:54:22,299 INCLUSIVENESS IN OUR TRIALS THEN 7166 03:54:22,299 --> 03:54:23,166 WE DON'T GET THE EVIDENCE WE 7167 03:54:23,166 --> 03:54:24,835 NEED TO ACTUALLY TAKE CARE OF 7168 03:54:24,835 --> 03:54:25,102 EVERYONE. 7169 03:54:25,102 --> 03:54:25,902 TOO MANY OF OUR CLINICAL TRIALS 7170 03:54:25,902 --> 03:54:27,104 AND CLINICAL RESEARCH STUDIES 7171 03:54:27,104 --> 03:54:29,206 ARE VERY SKEWED IN THE WAY THAT 7172 03:54:29,206 --> 03:54:30,974 OUR DEMOGRAPHICS ARE REPRESENTED 7173 03:54:30,974 --> 03:54:31,942 AND, THEREFORE, THE RESULTS FROM 7174 03:54:31,942 --> 03:54:33,610 THOSE STUDIES ARE NOT APPLICABLE 7175 03:54:33,610 --> 03:54:35,846 TO SO MANY OF OUR POPULATION, 7176 03:54:35,846 --> 03:54:39,483 INCLUDING SOME OF THE MOST NEEDY 7177 03:54:39,483 --> 03:54:42,619 YOU ANDSERVED AMONG US. 7178 03:54:42,619 --> 03:54:46,790 YOUNEEDYAND UNDERSERVED AMONG U. 7179 03:54:46,790 --> 03:54:48,625 IN TERMS OF HOW WE RUN THINGS AT 7180 03:54:48,625 --> 03:54:49,926 INSTITUTIONS LIKE VANDERBILT AND 7181 03:54:49,926 --> 03:54:52,095 OTHERS, WE WORK VERY CLOSELY 7182 03:54:52,095 --> 03:54:53,797 WITH COLLABORATORS AT OTHER 7183 03:54:53,797 --> 03:54:54,664 INSTITUTIONS AND WE HAPPEN TO BE 7184 03:54:54,664 --> 03:54:56,766 A PART OF, FOR INSTANCE, A 7185 03:54:56,766 --> 03:54:58,635 COLLABORATION RIGHT NOW WITH -- 7186 03:54:58,635 --> 03:55:00,470 THAT IS ACTUALLY SPONSORED BY 7187 03:55:00,470 --> 03:55:02,506 FAR THAT CALLED EQUITABLE 7188 03:55:02,506 --> 03:55:03,373 BREAKTHROUGHS IN MEDICINE 7189 03:55:03,373 --> 03:55:04,841 DEVELOPMENT, WHERE WE ARE 7190 03:55:04,841 --> 03:55:06,810 WORKING ON SCIENTIFIC STUDIES 7191 03:55:06,810 --> 03:55:08,044 AND LEARNING SYSTEMS AND 7192 03:55:08,044 --> 03:55:10,480 APPROACHES TO REALLY DO REAL 7193 03:55:10,480 --> 03:55:11,581 WORLD ANALYSIS AND STUDY OF HOW 7194 03:55:11,581 --> 03:55:13,450 DO WE REALLY FOCUS ON DIFFERENT 7195 03:55:13,450 --> 03:55:16,853 WAYS THAT WE NEED TO BE ENGAGING 7196 03:55:16,853 --> 03:55:18,155 WITH UNDERSERVED, 7197 03:55:18,155 --> 03:55:18,755 UNDERREPRESENTED COMMUNITIES, 7198 03:55:18,755 --> 03:55:19,890 AND WE KNOW THAT THE WAY WE HAVE 7199 03:55:19,890 --> 03:55:21,725 TO APPROACH THAT IS 7200 03:55:21,725 --> 03:55:22,425 FUNDAMENTALLY DIFFERENT TO THE 7201 03:55:22,425 --> 03:55:24,194 WAY WE'VE BEEN DOING IT 7202 03:55:24,194 --> 03:55:24,861 TRADITIONALLY IN ORDER TO BE 7203 03:55:24,861 --> 03:55:26,630 ABLE TO OVERCOME THE DISPARITIES 7204 03:55:26,630 --> 03:55:28,098 WE SEE IN OUR CLINICAL RESEARCH 7205 03:55:28,098 --> 03:55:28,632 ENTERPRISE. 7206 03:55:28,632 --> 03:55:29,833 SO HAPPY TO TALK ABOUT THAT AND 7207 03:55:29,833 --> 03:55:31,601 OTHER THINGS AS WE MOVE FORWARD. 7208 03:55:31,601 --> 03:55:32,135 THANK YOU, BOB. 7209 03:55:32,135 --> 03:55:32,836 >> TERRIFIC. 7210 03:55:32,836 --> 03:55:34,004 THANK YOU. 7211 03:55:34,004 --> 03:55:34,871 DR. CALIFF, THANKS FOR JOINING 7212 03:55:34,871 --> 03:55:35,305 US TODAY. 7213 03:55:35,305 --> 03:55:36,606 DO YOU MIND SAYING ABOUT 7214 03:55:36,606 --> 03:55:37,908 60 SECONDS OF INTRO TO THE 7215 03:55:37,908 --> 03:55:39,209 AUDIENCE TODAY? 7216 03:55:39,209 --> 03:55:39,643 >> THANKS. 7217 03:55:39,643 --> 03:55:41,244 GOOD TO BE WITH YOU. 7218 03:55:41,244 --> 03:55:43,647 I AGREE WITH MY COLLEAGUE FROM 7219 03:55:43,647 --> 03:55:45,615 ATLANTA, THE POLLEN IS PROFOUND 7220 03:55:45,615 --> 03:55:47,851 HERE IN DURHAM, NORTH CAROLINA, 7221 03:55:47,851 --> 03:55:50,854 BACK HOME FOR THE WEEKEND. 7222 03:55:50,854 --> 03:55:52,155 SO HOPEFULLY THE VOICE WILL HOLD 7223 03:55:52,155 --> 03:55:54,257 UP HERE IN THE MIDST OF ALL THIS 7224 03:55:54,257 --> 03:55:55,725 BUT IT'S BEAUTIFUL, I HAVE TO 7225 03:55:55,725 --> 03:55:56,393 SAY. 7226 03:55:56,393 --> 03:55:57,928 I'LL JUST ADD A BIT HERE OF 7227 03:55:57,928 --> 03:55:58,595 PERSPECTIVE. 7228 03:55:58,595 --> 03:56:00,163 I'VE BEEN ON ALL SIDES OF THE 7229 03:56:00,163 --> 03:56:00,363 FENCE. 7230 03:56:00,363 --> 03:56:01,364 I'VE BEEN IN ACADEMIA, I'VE BEEN 7231 03:56:01,364 --> 03:56:04,100 A PATIENT IN CLINICAL TRIALS, 7232 03:56:04,100 --> 03:56:07,304 I'VE BEEN IN THE INDUSTRY, 7233 03:56:07,304 --> 03:56:08,572 INCLUDING THE TECH AND THE 7234 03:56:08,572 --> 03:56:09,206 BIOMEDICAL INDUSTRY. 7235 03:56:09,206 --> 03:56:10,740 NOW OF COURSE I'M IN THE 7236 03:56:10,740 --> 03:56:13,376 REGULATORY SPHERE AND I THINK 7237 03:56:13,376 --> 03:56:15,412 WE'RE ALL -- I FEEL LIKE 7238 03:56:15,412 --> 03:56:16,079 TREMENDOUS PROGRESS HAS BEEN 7239 03:56:16,079 --> 03:56:17,280 MADE BUT WE'VE STILL GOT A LONG 7240 03:56:17,280 --> 03:56:19,516 WAY TO GO IN TERMS OF 7241 03:56:19,516 --> 03:56:20,150 UNDERSTANDING INCLUSIVENESS AND 7242 03:56:20,150 --> 03:56:21,685 ALL OF ITS DIMENSIONS. 7243 03:56:21,685 --> 03:56:23,019 QUICKLY TO POINT OUT AT FDA, 7244 03:56:23,019 --> 03:56:25,589 THERE'S A BIG FOCUS ON PATIENT 7245 03:56:25,589 --> 03:56:27,657 FOCUSED DRUG DEVELOPMENT AND 7246 03:56:27,657 --> 03:56:30,393 DEVICE DEVELOPMENT, AND AN 7247 03:56:30,393 --> 03:56:32,762 ENORMOUS INTEREST IN MEASURING 7248 03:56:32,762 --> 03:56:33,964 QUALITY OF LIFE AND PREFERENCES 7249 03:56:33,964 --> 03:56:36,366 AND OTHER ASPECTS OF HOW PEOPLE 7250 03:56:36,366 --> 03:56:38,368 ARE DOING WITH THEIR DISEASES 7251 03:56:38,368 --> 03:56:40,904 AND THE DIAGNOSTIC TESTS AND 7252 03:56:40,904 --> 03:56:43,440 INTERVENTIONS RELATED TO THEM. 7253 03:56:43,440 --> 03:56:45,308 BUT I WANTED TO MENTION THAT MAY 7254 03:56:45,308 --> 03:56:46,643 NOT OTHERWISE COME OUT THAT I 7255 03:56:46,643 --> 03:56:49,279 THINK IS REALLY IMPORTANT, WE'RE 7256 03:56:49,279 --> 03:56:52,682 REGULATING GLOBAL INDUSTRIES, 7257 03:56:52,682 --> 03:56:54,484 AND IF WE LOOK AT THE GLOBAL 7258 03:56:54,484 --> 03:56:57,754 MEDICAL PRODUCTS INDUSTRY, THERE 7259 03:56:57,754 --> 03:56:58,355 ARE 8 BILLION PEOPLE IN THE 7260 03:56:58,355 --> 03:56:58,855 WORLD NOW. 7261 03:56:58,855 --> 03:57:02,092 WE'RE ABOUT 4% OF THE WORLD'S 7262 03:57:02,092 --> 03:57:02,392 POPULATION. 7263 03:57:02,392 --> 03:57:04,060 SO WHEN WE START TALKING ABOUT 7264 03:57:04,060 --> 03:57:04,828 INCLUSIVENESS WITH THE 7265 03:57:04,828 --> 03:57:08,298 INDUSTRIES THAT WE REGULATE, 7266 03:57:08,298 --> 03:57:09,566 OVER 250 ETHNICITIES, FOR 7267 03:57:09,566 --> 03:57:10,934 EXAMPLE, AROUND THE WORLD, WE 7268 03:57:10,934 --> 03:57:14,738 RUN INTO MANY ISSUES OF HOW TO 7269 03:57:14,738 --> 03:57:16,139 GET THE TRIALS DONE, HOW BIG 7270 03:57:16,139 --> 03:57:17,674 SHOULD THEY BE, WHAT DO WE 7271 03:57:17,674 --> 03:57:19,442 REALLY MEAN BY INCLUSIVENESS 7272 03:57:19,442 --> 03:57:23,113 WHEN WE'RE DEALING WITH AN 7273 03:57:23,113 --> 03:57:24,547 INDUSTRY THAT'S DISTRIBUTING AND 7274 03:57:24,547 --> 03:57:27,150 SELLING PRODUCT ALL OVER THE 7275 03:57:27,150 --> 03:57:28,685 WORLD. 7276 03:57:28,685 --> 03:57:30,020 I'M NOT PRETENDING TO HAVE 7277 03:57:30,020 --> 03:57:31,154 ANSWERS TO ALL THAT BUT IT'S 7278 03:57:31,154 --> 03:57:32,355 SOMETHING WE'RE REALLY GRAPPLING 7279 03:57:32,355 --> 03:57:32,889 WITH RIGHT NOW. 7280 03:57:32,889 --> 03:57:33,290 >> TERRIFIC. 7281 03:57:33,290 --> 03:57:35,258 THANK YOU, DR. CALIFF. 7282 03:57:35,258 --> 03:57:35,925 APPRECIATE THAT. 7283 03:57:35,925 --> 03:57:37,894 DR. COOK, LET ME GIVE YOU 7284 03:57:37,894 --> 03:57:39,863 60 SECONDS FOR A QUICK INTRO. 7285 03:57:39,863 --> 03:57:40,830 >> THANK YOU. 7286 03:57:40,830 --> 03:57:42,132 AND GOOD AFTERNOON, EVERYONE. 7287 03:57:42,132 --> 03:57:44,100 IT'S SUCH A PLEASURE TO BE HERE. 7288 03:57:44,100 --> 03:57:48,538 I'M NAKELA COOK, EXECUTIVE 7289 03:57:48,538 --> 03:57:50,407 DIRECTOR AT PCORI. 7290 03:57:50,407 --> 03:57:53,043 WE'RE AN INDEPENDENT RESEARCH 7291 03:57:53,043 --> 03:57:53,910 FUNDING ORGANIZATION THAT 7292 03:57:53,910 --> 03:57:55,378 FULFILLS REALLY WHAT I THINK IS 7293 03:57:55,378 --> 03:57:57,347 A UNIQUE SPACE IN THE RESEARCH 7294 03:57:57,347 --> 03:57:58,882 ECOSYSTEM, AND OUR MISSION IS 7295 03:57:58,882 --> 03:58:00,483 REALLY ABOUT HELPING PEOPLE MAKE 7296 03:58:00,483 --> 03:58:01,451 INFORMED HEALTHCARE DECISIONS 7297 03:58:01,451 --> 03:58:04,220 AND IMPROVE HEALTHCARE DELIVERY 7298 03:58:04,220 --> 03:58:05,522 THROUGH RESEARCH THAT'S GUIDED 7299 03:58:05,522 --> 03:58:07,357 BY PATIENTS, CAREGIVERS AND THE 7300 03:58:07,357 --> 03:58:08,091 BROADER HEALTHCARE COMMUNITY, 7301 03:58:08,091 --> 03:58:09,426 AND IT'S REALLY THAT LATTER 7302 03:58:09,426 --> 03:58:11,795 PIECE THAT WE THINK MAKES US 7303 03:58:11,795 --> 03:58:13,096 QUITE UNIQUE IN THE RESEARCH 7304 03:58:13,096 --> 03:58:13,530 ECOSYSTEM. 7305 03:58:13,530 --> 03:58:15,932 WE CALL THIS RESEARCH DONE 7306 03:58:15,932 --> 03:58:16,566 DIFFERENTLY. 7307 03:58:16,566 --> 03:58:18,635 AND AT THE HEART OF THIS 7308 03:58:18,635 --> 03:58:19,502 RESEARCH DONE DIFFERENTLY IS THE 7309 03:58:19,502 --> 03:58:20,837 ENGAGEMENT OF PATIENTS AND 7310 03:58:20,837 --> 03:58:22,372 CAREGIVERS AND CLINICIANS AND 7311 03:58:22,372 --> 03:58:24,607 OTHER STAKEHOLDERS THROUGHOUT 7312 03:58:24,607 --> 03:58:26,676 THE ENTIRE RESEARCH PROCESS. 7313 03:58:26,676 --> 03:58:28,745 AND IN SOME WAYS, THIS WHOLE 7314 03:58:28,745 --> 03:58:30,680 PATIENT-CENTERED APPROACH TO 7315 03:58:30,680 --> 03:58:33,116 OUTCOMES IN CLINICAL COMPARATIVE 7316 03:58:33,116 --> 03:58:33,883 EFFECTIVENESS RESEARCH HELPS US 7317 03:58:33,883 --> 03:58:35,719 TO THINK ABOUT THE ISSUES OF 7318 03:58:35,719 --> 03:58:37,654 EQUITY AND WE TALK ABOUT THIS 7319 03:58:37,654 --> 03:58:39,989 APPROACH BEING INHERENTLY 7320 03:58:39,989 --> 03:58:41,291 EQUITY-MINDED BECAUSE IT REALLY 7321 03:58:41,291 --> 03:58:44,728 TAKES INTO ACCOUNT THE VOICES 7322 03:58:44,728 --> 03:58:47,664 AND THE LIVED EXPERIENCES OF ALL 7323 03:58:47,664 --> 03:58:51,801 PEOPLE TO EP BE SURE THAT THE EE 7324 03:58:51,801 --> 03:58:53,203 FUNDING IS REALLY ABOUT WHAT 7325 03:58:53,203 --> 03:58:54,104 MATTERS MOST TO THE PEOPLE WE'RE 7326 03:58:54,104 --> 03:58:55,472 TRYING TO BENEFIT. 7327 03:58:55,472 --> 03:58:56,106 SO MAYBE I'LL PAUSE THERE AND I 7328 03:58:56,106 --> 03:58:56,773 LOOK FORWARD TO TALKING ABOUT 7329 03:58:56,773 --> 03:58:57,207 THAT MORE. 7330 03:58:57,207 --> 03:58:58,208 >> TERRIFIC. 7331 03:58:58,208 --> 03:58:59,309 THANK YOU VERY MUCH. 7332 03:58:59,309 --> 03:59:00,910 AND LAST BUT OF COURSE NOT 7333 03:59:00,910 --> 03:59:03,113 LEAST, MS. LURAY, WOULD YOU LIKE 7334 03:59:03,113 --> 03:59:04,547 TO PROVIDE A FEW INTRODUCTORY 7335 03:59:04,547 --> 03:59:05,048 COMMENTS AS WELL? 7336 03:59:05,048 --> 03:59:05,715 >> SURE. 7337 03:59:05,715 --> 03:59:06,149 THANK YOU SO MUCH. 7338 03:59:06,149 --> 03:59:08,218 WHAT A PANEL TO FOLLOW. 7339 03:59:08,218 --> 03:59:13,723 I'M STILL BUZZED, AND WROTE DOWN 7340 03:59:13,723 --> 03:59:15,225 MANY THINGS THAT THE REVEREND 7341 03:59:15,225 --> 03:59:15,859 SAID AND OTHERS FROM THAT LAST 7342 03:59:15,859 --> 03:59:16,159 PANEL. 7343 03:59:16,159 --> 03:59:17,794 JUST FABULOUS. 7344 03:59:17,794 --> 03:59:19,362 BUT RESEARCH!AMERICA IS AN 7345 03:59:19,362 --> 03:59:22,565 ALLIANCE OF OVER 300 7346 03:59:22,565 --> 03:59:24,200 ORGANIZATIONS AND INSTITUTIONS 7347 03:59:24,200 --> 03:59:27,604 THAT REPRESENT DIFFERENT ASPECTS 7348 03:59:27,604 --> 03:59:29,906 OF THE MEDICAL AND PUBLIC HEALTH 7349 03:59:29,906 --> 03:59:31,808 ECOSYSTEM INCLUDING MANY OF THE 7350 03:59:31,808 --> 03:59:34,778 FOLKS ON THE SCREEN TODAY. 7351 03:59:34,778 --> 03:59:37,881 ACADEMIA, INDUSTRY, PATIENT 7352 03:59:37,881 --> 03:59:39,582 ADVOCACY GROUPS, SCIENTIFIC 7353 03:59:39,582 --> 03:59:40,450 SOCIETIES. 7354 03:59:40,450 --> 03:59:41,217 WE'RE DELIGHTED TO BE PART OF 7355 03:59:41,217 --> 03:59:41,751 THIS. 7356 03:59:41,751 --> 03:59:44,053 WE WORK CLOSELY WITH DR. CALIFF 7357 03:59:44,053 --> 03:59:48,425 AND DR. COOK BOTH OF THOSE 7358 03:59:48,425 --> 03:59:49,859 AGENCIES AS WELL AS NIH HAVE 7359 03:59:49,859 --> 03:59:51,694 CRITICAL ROLES TO PLAY IN REALLY 7360 03:59:51,694 --> 03:59:53,329 MAKING PROGRESS ON THIS ISSUE. 7361 03:59:53,329 --> 03:59:53,963 AND ONE OF THE THINGS I'D LIKE 7362 03:59:53,963 --> 03:59:58,034 TO TALK ABOUT LATER IS THOSE OF 7363 03:59:58,034 --> 03:59:59,135 US WHO ARE WORKING AT THE 7364 03:59:59,135 --> 04:00:00,670 NATIONAL LEVEL, HOW CAN WE 7365 04:00:00,670 --> 04:00:01,271 SUPPORT THE REALLY IMPORTANT 7366 04:00:01,271 --> 04:00:02,238 WORK THAT HAS TO HAPPEN AT THE 7367 04:00:02,238 --> 04:00:02,806 COMMUNITY LEVEL. 7368 04:00:02,806 --> 04:00:03,706 THANKS. 7369 04:00:03,706 --> 04:00:04,541 >> TERRIFIC. 7370 04:00:04,541 --> 04:00:05,708 WELL, THANK YOU ALL FOR SHARING 7371 04:00:05,708 --> 04:00:06,643 YOUR PERSPECTIVES WITH OUR 7372 04:00:06,643 --> 04:00:07,410 AUDIENCE. 7373 04:00:07,410 --> 04:00:08,445 LET ME ENCOURAGE THE AUDIENCE TO 7374 04:00:08,445 --> 04:00:09,813 SEND IN THEIR QUESTIONS. 7375 04:00:09,813 --> 04:00:10,480 BUT IN THE MEANTIME, I'M GOING 7376 04:00:10,480 --> 04:00:11,347 TO START OFF WITH A QUICK 7377 04:00:11,347 --> 04:00:13,550 QUESTION FOR ALL OF YOU. 7378 04:00:13,550 --> 04:00:15,151 OVER THE LAST TWO DAYS, WE'VE 7379 04:00:15,151 --> 04:00:17,754 HEARD MULTIPLE PERSPECTIVES ON 7380 04:00:17,754 --> 04:00:18,988 HOW TO TAKE CLINICAL RESEARCH 7381 04:00:18,988 --> 04:00:20,757 AND MAKE IT MORE INCLUSIVE, 7382 04:00:20,757 --> 04:00:21,658 INCLUDING SHIFTING THE BALANCE 7383 04:00:21,658 --> 04:00:25,061 OF POWER BETWEEN INSTITUTIONS TO 7384 04:00:25,061 --> 04:00:26,296 COMMUNITIES, CHANGING THE 7385 04:00:26,296 --> 04:00:28,298 DYNAMIC THERE OR THE PARADIGM. 7386 04:00:28,298 --> 04:00:29,699 FROM YOUR PERSPECTIVE, YOU KNOW, 7387 04:00:29,699 --> 04:00:31,668 HOW CAN YOU SEE MULTIPLE 7388 04:00:31,668 --> 04:00:34,704 ENTITIES ACROSS ACADEMIC 7389 04:00:34,704 --> 04:00:36,906 INSTITUTIONS, COMMUNITY-BASED 7390 04:00:36,906 --> 04:00:37,774 ORGANIZATIONS, PHARMACEUTICAL 7391 04:00:37,774 --> 04:00:39,042 COMPANIES, FUNDING 7392 04:00:39,042 --> 04:00:39,676 ORGANIZATIONS, EVERYBODY WHO'S 7393 04:00:39,676 --> 04:00:40,910 IN THIS SPACE, HOW CAN YOU SEE 7394 04:00:40,910 --> 04:00:42,645 OPPORTUNITIES FOR THEM TO 7395 04:00:42,645 --> 04:00:44,481 COLLABORATE, TO EFFECTIVELY 7396 04:00:44,481 --> 04:00:45,381 IMPROVE RECRUITMENT AND 7397 04:00:45,381 --> 04:00:45,982 RETENTION? 7398 04:00:45,982 --> 04:00:47,250 BECAUSE IT'S ALL ABOUT 7399 04:00:47,250 --> 04:00:48,117 RELATIONSHIPS, AS WE HEARD IN 7400 04:00:48,117 --> 04:00:50,019 OUR LAST PANEL TOO. 7401 04:00:50,019 --> 04:00:51,020 WHAT IDEAS DO YOU HAVE ABOUT 7402 04:00:51,020 --> 04:00:52,021 BROADER COLLABORATION? 7403 04:00:52,021 --> 04:00:54,491 JENNY, I'M GOING TO YO TURN TO U 7404 04:00:54,491 --> 04:00:55,758 FIRST IF THAT'S OKAY SINCE THIS 7405 04:00:55,758 --> 04:00:57,293 IS REALLY IN RESEARCH!AMERICA'S 7406 04:00:57,293 --> 04:00:57,494 SPACE. 7407 04:00:57,494 --> 04:00:57,961 >> SURE. 7408 04:00:57,961 --> 04:01:00,763 ONE WAY THAT WE ARE 7409 04:01:00,763 --> 04:01:01,731 COLLABORATING ALREADY IS IN 7410 04:01:01,731 --> 04:01:03,800 TERMS OF FEDERAL POLICY. 7411 04:01:03,800 --> 04:01:07,737 SO SOME OF THE POLICIES THAT DRS 7412 04:01:07,737 --> 04:01:09,806 WILL BE IMPLEMENTING AROUND 7413 04:01:09,806 --> 04:01:11,674 CLINICAL TRIAL DIVERSITY IN THE 7414 04:01:11,674 --> 04:01:13,743 LAST USER FEE AGREEMENT IS 7415 04:01:13,743 --> 04:01:15,445 SOMETHING WE'VE WORKED ON, SOME 7416 04:01:15,445 --> 04:01:17,814 OF THE WORK THAT PCORI IS DOING, 7417 04:01:17,814 --> 04:01:19,582 THE PATIENT FOCUSED DRUG 7418 04:01:19,582 --> 04:01:21,651 DEVELOPMENT PROVISIONS, THE 7419 04:01:21,651 --> 04:01:22,785 ADOPTION OF REAL WORLD EVIDENCE 7420 04:01:22,785 --> 04:01:23,887 AND REAL WORLD DATA WHERE YOU 7421 04:01:23,887 --> 04:01:26,923 CAN ACTUALLY INVOLVE PATIENTS IN 7422 04:01:26,923 --> 04:01:28,224 CLINICAL TRIALS WHILE THEY'RE 7423 04:01:28,224 --> 04:01:30,727 SITTING IN THE DOCTOR'S OFFICE. 7424 04:01:30,727 --> 04:01:33,363 SO THOSE SORTS OF POLICIES ARE 7425 04:01:33,363 --> 04:01:34,898 THINGS THAT WE AND OUR ALLIANCE 7426 04:01:34,898 --> 04:01:37,667 MEMBERS ARE WORKING ON. 7427 04:01:37,667 --> 04:01:39,135 >> TERRIFIC, THANK YOU. 7428 04:01:39,135 --> 04:01:40,670 ANYBODY ELSE WANT TO WEIGH IN ON 7429 04:01:40,670 --> 04:01:41,571 THIS ONE? 7430 04:01:41,571 --> 04:01:42,672 COLLABORATION, WHAT IDEAS DO YOU 7431 04:01:42,672 --> 04:01:43,640 HAVE FOR COLLABORATION? 7432 04:01:43,640 --> 04:01:44,173 BRITTANY, YOU GO. 7433 04:01:44,173 --> 04:01:45,975 >> WANT TO ADD IN ALSO, GREAT 7434 04:01:45,975 --> 04:01:48,211 WITH REGULATORY, BUT I THINK US 7435 04:01:48,211 --> 04:01:49,112 COLLABORATING, JUST HAVING MORE 7436 04:01:49,112 --> 04:01:50,413 ACCESS OF THE INVESTIGATORS 7437 04:01:50,413 --> 04:01:51,814 DOING THE TRIALS. 7438 04:01:51,814 --> 04:01:54,317 IN A CLINICAL OPERATION, IT'S 7439 04:01:54,317 --> 04:01:55,852 THE SAME PIs OVER AND OVER 7440 04:01:55,852 --> 04:01:57,787 AGAIN, SO IF WE CAN EXPAND WHO 7441 04:01:57,787 --> 04:01:58,288 CAN BE AN INVESTIGATOR. 7442 04:01:58,288 --> 04:01:59,656 I KNOW THERE'S A COUPLE 7443 04:01:59,656 --> 04:02:00,623 INITIATIVES TO TRAIN YOUNG 7444 04:02:00,623 --> 04:02:02,458 PHYSICIANS TO BE INVESTIGATORS. 7445 04:02:02,458 --> 04:02:03,693 THAT CAN HELP EXPAND WHAT 7446 04:02:03,693 --> 04:02:04,861 COMMUNITIES THEY HAVE ACCESS TO. 7447 04:02:04,861 --> 04:02:06,529 THAT'S SOMETHING WE CAN HELP 7448 04:02:06,529 --> 04:02:08,231 ACROSS THE BOARD, WHETHER IT'S 7449 04:02:08,231 --> 04:02:11,401 ACADEMIC CENTERS, REALLY 7450 04:02:11,401 --> 04:02:12,502 IDENTIFYING AND NURTURING AND 7451 04:02:12,502 --> 04:02:14,370 JUST REALLY BRINGING UP NEW 7452 04:02:14,370 --> 04:02:15,838 INVESTIGATORS OR EVEN 7453 04:02:15,838 --> 04:02:17,473 INVESTIGATORS THAT HAVE BEEN 7454 04:02:17,473 --> 04:02:20,777 PRACTICING FOR YEARS, HAVING THE 7455 04:02:20,777 --> 04:02:22,478 OPPORTUNITY TO BE A PRINCIPAL 7456 04:02:22,478 --> 04:02:23,479 INVESTIGATOR, TO BRING THEM INTO 7457 04:02:23,479 --> 04:02:25,448 RESEARCH TO HAVE ACCESS TO MORE 7458 04:02:25,448 --> 04:02:26,215 WIDE COMMUNITIES. 7459 04:02:26,215 --> 04:02:27,617 >> LOVE THAT. 7460 04:02:27,617 --> 04:02:29,118 DR. CALIFF, DID YOU WANT TO JUMP 7461 04:02:29,118 --> 04:02:29,285 IN? 7462 04:02:29,285 --> 04:02:32,522 >> SURE. 7463 04:02:32,522 --> 04:02:34,324 I USUALLY PLAY THE ROLE OF BEING 7464 04:02:34,324 --> 04:02:34,824 THE DOWNER IN THE GROUP. 7465 04:02:34,824 --> 04:02:36,426 I'M GOING TO GO AHEAD AND DO IT 7466 04:02:36,426 --> 04:02:36,626 AGAIN. 7467 04:02:36,626 --> 04:02:37,293 I CAN'T RESIST IT. 7468 04:02:37,293 --> 04:02:38,861 IT'S PART OF MY PERSONALITY AND 7469 04:02:38,861 --> 04:02:39,362 JOB, I THINK. 7470 04:02:39,362 --> 04:02:40,797 I MEAN, I THINK THE LAST PANEL 7471 04:02:40,797 --> 04:02:43,499 DID A REALLY GOOD JOB OF SAYING 7472 04:02:43,499 --> 04:02:44,901 ONE OF THE MANY THINGS THAT CAME 7473 04:02:44,901 --> 04:02:47,971 OUT WAS, WE HAVE STRUCTURAL 7474 04:02:47,971 --> 04:02:50,473 ISSUES IN OUR HEALTHCARE SYSTEM 7475 04:02:50,473 --> 04:02:54,510 THAT PLAY OUT IN MULTIPLE 7476 04:02:54,510 --> 04:02:57,780 DIRECTIONS FOR PEOPLE THAT ARE 7477 04:02:57,780 --> 04:02:59,115 ADVERSE AND AMONG THEM IS 7478 04:02:59,115 --> 04:03:00,416 CLINICIANS ON THE FRONT LINES 7479 04:03:00,416 --> 04:03:01,718 TRYING TO PARTICIPATE IN 7480 04:03:01,718 --> 04:03:02,118 CLINICAL RESEARCH. 7481 04:03:02,118 --> 04:03:03,920 IT IS REALLY HARD RIGHT NOW. 7482 04:03:03,920 --> 04:03:05,221 THE INCENTIVES ARE ALIGNED 7483 04:03:05,221 --> 04:03:07,357 AGAINST SPENDING THE TIME DOING 7484 04:03:07,357 --> 04:03:08,124 IT. 7485 04:03:08,124 --> 04:03:10,293 THE PRACTICE LOSES MONEY, THEY 7486 04:03:10,293 --> 04:03:13,229 GET BEAT UP BY THEIR 7487 04:03:13,229 --> 04:03:13,596 ADMINISTRATORS. 7488 04:03:13,596 --> 04:03:15,298 IT GOES ON AND ON. 7489 04:03:15,298 --> 04:03:15,965 AND WE'RE VERY MUCH SEEING THIS 7490 04:03:15,965 --> 04:03:16,232 NOW. 7491 04:03:16,232 --> 04:03:18,001 SO IF WE WANT TO COLLABORATE, 7492 04:03:18,001 --> 04:03:20,637 IT'S NICE TO SAY GOOD THINGS. 7493 04:03:20,637 --> 04:03:23,573 I'M ALL FOR IT AND YOU ALL ARE 7494 04:03:23,573 --> 04:03:25,742 REALLY GOOD AT GENERATING 7495 04:03:25,742 --> 04:03:26,943 ENTHUSIASM, WHICH YOU REALLY 7496 04:03:26,943 --> 04:03:28,478 NEED, BUT UNLESS WE MAKE 7497 04:03:28,478 --> 04:03:29,545 PROGRESS IN THESE STRUCTURAL 7498 04:03:29,545 --> 04:03:32,048 AREAS LIKE WHAT ARE WE 7499 04:03:32,048 --> 04:03:35,218 PRACTICALLY GOING TO DO WITHIN 7500 04:03:35,218 --> 04:03:36,319 HEALTH SYSTEMS TO GIVE 7501 04:03:36,319 --> 04:03:37,286 CLINICIANS TIME TO TALK WITH 7502 04:03:37,286 --> 04:03:41,491 THEIR PATIENTS ABOUT INCLUDING 7503 04:03:41,491 --> 04:03:44,260 THEM IN CONVERSATIONS THAT TAKE 7504 04:03:44,260 --> 04:03:44,460 TIME? 7505 04:03:44,460 --> 04:03:45,261 >> TERRIFIC. 7506 04:03:45,261 --> 04:03:46,462 PETER, I SEE YOU ITCHING TO GET 7507 04:03:46,462 --> 04:03:46,729 IN. 7508 04:03:46,729 --> 04:03:48,364 HOP IN ON THIS ONE. 7509 04:03:48,364 --> 04:03:49,732 >> I COULDN'T AGREE MORE WITH 7510 04:03:49,732 --> 04:03:50,466 WHAT'S BEEN SAID. 7511 04:03:50,466 --> 04:03:52,435 I'LL JUST ADD A LITTLE BIT FROM 7512 04:03:52,435 --> 04:03:53,202 OUR RECENT EXPERIENCE TRYING TO 7513 04:03:53,202 --> 04:03:54,804 WORK ACROSS A MULTIDISCIPLINARY 7514 04:03:54,804 --> 04:03:56,472 TEAM TO ADDRESS SOME OF THIS IN 7515 04:03:56,472 --> 04:03:58,074 THIS PILOT FASHION THAT WE'RE 7516 04:03:58,074 --> 04:03:59,942 DOING NOW WITH THIS LEARNING 7517 04:03:59,942 --> 04:04:00,410 COLLABORATIVE. 7518 04:04:00,410 --> 04:04:03,446 I THINK AS -- JUST TO BUILD ON 7519 04:04:03,446 --> 04:04:04,647 DR. CALIFF'S POINTS, I THINK THE 7520 04:04:04,647 --> 04:04:08,818 LIMITED ACCESS TO TRIALS IS AN 7521 04:04:08,818 --> 04:04:09,752 ISSUE. 7522 04:04:09,752 --> 04:04:11,521 ESPECIALLY FOR HISTORICALLY 7523 04:04:11,521 --> 04:04:12,155 UNDERREPRESENTED COMMUNITIES. 7524 04:04:12,155 --> 04:04:14,123 JUST BEING ABLE TO ACTUALLY HAVE 7525 04:04:14,123 --> 04:04:19,362 THE OPPORTUNITY TO BE ASKED IS A 7526 04:04:19,362 --> 04:04:20,630 LIMITATION, AND OF COURSE THAT 7527 04:04:20,630 --> 04:04:21,230 MEANS GETTING OUT INTO THOSE 7528 04:04:21,230 --> 04:04:22,198 COMMUNITIES AND ACTUALLY BEING 7529 04:04:22,198 --> 04:04:25,668 ABLE TO DO THAT IN A WAY THAT IS 7530 04:04:25,668 --> 04:04:26,869 INFORMED BY WHAT IT IS THE 7531 04:04:26,869 --> 04:04:27,737 MEMBERS OF THOSE COMMUNITIES 7532 04:04:27,737 --> 04:04:28,705 ACTUALLY WANT TO HEAR AND HOW 7533 04:04:28,705 --> 04:04:31,541 THEY WANT TO HEAR IT, AND IT 7534 04:04:31,541 --> 04:04:34,043 REALLY REQUIRES A RECOGNITION 7535 04:04:34,043 --> 04:04:35,578 THAT THAT REALLY IS A 7536 04:04:35,578 --> 04:04:36,479 COLLABORATIVE ACTIVITY WHERE 7537 04:04:36,479 --> 04:04:37,547 WE'VE GOT TO BRING PEOPLE TO THE 7538 04:04:37,547 --> 04:04:38,414 TABLE. 7539 04:04:38,414 --> 04:04:40,149 WE LEARNED A LOT OF THIS DURING 7540 04:04:40,149 --> 04:04:43,519 COVID IN TERMS OF BEING ABLE TO 7541 04:04:43,519 --> 04:04:44,721 DO CERTAIN KINDS OF ACTIVITIES 7542 04:04:44,721 --> 04:04:46,255 WELL AND NOT SO WELL. 7543 04:04:46,255 --> 04:04:48,224 AS WAS MENTIONED, THE LIMITATION 7544 04:04:48,224 --> 04:04:49,092 IN DIVERSITY OF THE 7545 04:04:49,092 --> 04:04:51,794 INVESTIGATORS AND THE STAFF WHO 7546 04:04:51,794 --> 04:04:52,361 SERVE THESE COMMUNITIES IS A 7547 04:04:52,361 --> 04:04:53,229 CRITICAL PART OF THIS. 7548 04:04:53,229 --> 04:04:54,630 AND SO HOW ARE WE GOING TO FUND 7549 04:04:54,630 --> 04:04:56,099 THAT, HOW ARE WE GOING TO 7550 04:04:56,099 --> 04:04:56,399 SUSTAIN IT. 7551 04:04:56,399 --> 04:04:58,568 A LOT OF THE INSTITUTIONS AND 7552 04:04:58,568 --> 04:05:00,303 GROUPS THAT COULD DO THIS, THE 7553 04:05:00,303 --> 04:05:03,372 OTHER PROBLEM IS, I THINK AGAIN 7554 04:05:03,372 --> 04:05:04,874 DR. CALIFF WAS MENTIONING THIS, 7555 04:05:04,874 --> 04:05:06,109 VERY LIMITED RESOURCES, SO WHAT 7556 04:05:06,109 --> 04:05:07,844 HAPPENS IS YOU MIGHT RAMP UP AND 7557 04:05:07,844 --> 04:05:09,011 HAVE CAPABILITIES FOR A 7558 04:05:09,011 --> 04:05:10,546 PARTICULAR STUDY, BUT THEN THE 7559 04:05:10,546 --> 04:05:11,881 SPONSORSHIP GOES AWAY, THE STUDY 7560 04:05:11,881 --> 04:05:13,149 GOES AWAY AND THE PERSONNEL 7561 04:05:13,149 --> 04:05:14,350 DON'T HAVE A JOB ANYMORE AND NOW 7562 04:05:14,350 --> 04:05:15,852 YOU'VE GOT TO START AGAIN FROM 7563 04:05:15,852 --> 04:05:16,219 GROUND ZERO. 7564 04:05:16,219 --> 04:05:17,820 AND SO HOW ARE WE GOING TO MAKE 7565 04:05:17,820 --> 04:05:19,689 THAT SUSTAINABLE? 7566 04:05:19,689 --> 04:05:21,124 AND DEAL WITH THE FINANCIAL AND 7567 04:05:21,124 --> 04:05:22,759 TIME BURDENS AS WAS MENTIONED, 7568 04:05:22,759 --> 04:05:24,494 AND THEN, OF COURSE, THERE'S THE 7569 04:05:24,494 --> 04:05:29,632 ISSUE OF MISTRUST OR DISTRUST OR 7570 04:05:29,632 --> 04:05:31,033 MISUNDERSTANDING AND THE ONLY 7571 04:05:31,033 --> 04:05:31,801 WAY TO DO THAT IS TO HAVE THIS 7572 04:05:31,801 --> 04:05:33,803 BE SOMETHING THAT IS REALLY 7573 04:05:33,803 --> 04:05:35,972 DRIVEN FROM THE COLLABORATIVE 7574 04:05:35,972 --> 04:05:37,640 INCLUDING MOST IMPORTANTLY THE 7575 04:05:37,640 --> 04:05:39,142 COMMUNITIES THEMSELVES. 7576 04:05:39,142 --> 04:05:40,943 >> CAN I DROP IN? 7577 04:05:40,943 --> 04:05:41,778 >> YES, PLEASE. 7578 04:05:41,778 --> 04:05:42,612 >> QUICKLY. 7579 04:05:42,612 --> 04:05:44,247 I JUST WANTED TO TALK ABOUT THE 7580 04:05:44,247 --> 04:05:46,649 IMPORTANT ROLE OF HBCUs AND 7581 04:05:46,649 --> 04:05:48,618 OTHER SO CALLED MINORITY SERVING 7582 04:05:48,618 --> 04:05:49,485 INSTITUTIONS. 7583 04:05:49,485 --> 04:05:52,555 AS HBCUs, WE'LL BE GETTING 7584 04:05:52,555 --> 04:05:53,656 ADDITIONAL RESEARCH FUNDING FROM 7585 04:05:53,656 --> 04:05:55,691 THE FEDERAL GOVERNMENT, LONG 7586 04:05:55,691 --> 04:05:55,925 OVERDUE. 7587 04:05:55,925 --> 04:05:58,227 THEY HAVE FABULOUS MODELS FOR 7588 04:05:58,227 --> 04:06:01,264 COMMUNITY ENGAGEMENT IN CLINICAL 7589 04:06:01,264 --> 04:06:02,331 TRIALS, AND WE REALLY NEED TO 7590 04:06:02,331 --> 04:06:03,299 SUPPORT THOSE INSTITUTIONS FAR 7591 04:06:03,299 --> 04:06:04,634 MORE THAN WE ARE NOW. 7592 04:06:04,634 --> 04:06:06,202 THEY REALLY ARE WHERE THE RUBBER 7593 04:06:06,202 --> 04:06:08,104 MEETS THE ROAD. 7594 04:06:08,104 --> 04:06:09,672 OTHER INSTITUTIONS CAN LEARN 7595 04:06:09,672 --> 04:06:11,707 FROM THEM BUT PROBABLY CAN'T 7596 04:06:11,707 --> 04:06:14,911 REPLICATE THE LEVEL OF COMMUNITY 7597 04:06:14,911 --> 04:06:15,778 RELATIONSHIP THAT THEY HAVE. 7598 04:06:15,778 --> 04:06:17,513 SO I JUST WANTED TO MENTION 7599 04:06:17,513 --> 04:06:19,482 THOSE INSTITUTIONS. 7600 04:06:19,482 --> 04:06:22,051 >> IF I COULD JUST ACCENTUATE 7601 04:06:22,051 --> 04:06:24,954 THAT, YOU KNOW, JUST WITH A 7602 04:06:24,954 --> 04:06:26,722 CONCRETE EXAMPLE, I TOTALLY 7603 04:06:26,722 --> 04:06:28,024 AGREE, FOR INSTANCE HERE IN 7604 04:06:28,024 --> 04:06:28,858 NASHVILLE, WE'RE WORKING CLOSELY 7605 04:06:28,858 --> 04:06:32,028 WITH OUR COLLEAGUES AT MAHERIA, 7606 04:06:32,028 --> 04:06:33,763 A HISTORICALLY BLACK MEDICAL 7607 04:06:33,763 --> 04:06:35,598 SCHOOL, AND IN TALKING TO THEM, 7608 04:06:35,598 --> 04:06:37,133 WHILE YOU'RE 100% CORRECT IN 7609 04:06:37,133 --> 04:06:38,568 TERMS OF THE CONNECTION, AND 7610 04:06:38,568 --> 04:06:39,836 THEY'RE GOING TO BE ABLE TO DO 7611 04:06:39,836 --> 04:06:40,970 THIS FROM A MUCH BETTER POSITION 7612 04:06:40,970 --> 04:06:42,605 THAN, LET'S SAY, VANDERBILT 7613 04:06:42,605 --> 04:06:45,408 UNIVERSITY COULD, THERE'S ALSO 7614 04:06:45,408 --> 04:06:48,477 RESOURCE LIMITATIONS AND ISSUES 7615 04:06:48,477 --> 04:06:50,980 OF UNDERFUNDING AND SUPPORT THAT 7616 04:06:50,980 --> 04:06:53,149 ARE MISSING. 7617 04:06:53,149 --> 04:06:53,749 AND SO REALLY GETTING DOWN TO 7618 04:06:53,749 --> 04:06:55,685 THE LEVEL OF REALLY FIGURING OUT 7619 04:06:55,685 --> 04:06:59,856 HOW DO WE FIX THAT, HOW DO WE 7620 04:06:59,856 --> 04:07:01,357 MAKE THAT SOMETHING THAT'S 7621 04:07:01,357 --> 04:07:02,992 SUSTAINABLE AND CAN ACTUALLY BE 7622 04:07:02,992 --> 04:07:04,193 FUNCTIONAL IS WHAT WE'RE 7623 04:07:04,193 --> 04:07:04,861 FOCUSING ON. 7624 04:07:04,861 --> 04:07:06,863 BECAUSE YOU'RE RIGHT, WE HAVE TO 7625 04:07:06,863 --> 04:07:10,199 ENABLE AND EMPOWER THOSE 7626 04:07:10,199 --> 04:07:11,601 ENTITIES, BUT WE ALSO HAVE TO 7627 04:07:11,601 --> 04:07:12,702 RECOGNIZE THAT THEY NEED MORE 7628 04:07:12,702 --> 04:07:13,970 SUPPORT AND FUNDING TO DO THAT 7629 04:07:13,970 --> 04:07:14,570 WORK. 7630 04:07:14,570 --> 04:07:16,973 >> THAT'S GREAT. 7631 04:07:16,973 --> 04:07:18,941 DR. COOK, PCORI HAS BEEN LEADING 7632 04:07:18,941 --> 04:07:21,143 THE CHARGE ON PATIENT 7633 04:07:21,143 --> 04:07:21,444 ENGAGEMENT. 7634 04:07:21,444 --> 04:07:24,513 CAN YOU WEIGH IN ON THE PATIENT 7635 04:07:24,513 --> 04:07:25,114 COLLABORATION QUESTION? 7636 04:07:25,114 --> 04:07:28,150 >> I THINK WE ALL REPRESENT 7637 04:07:28,150 --> 04:07:29,785 THINGS THAT HAVE MORE ENTRY INTO 7638 04:07:29,785 --> 04:07:30,753 THIS RESEARCH CONTINUUM THAT THE 7639 04:07:30,753 --> 04:07:32,154 ISSUES WE'RE TALKING ABOUT ARE 7640 04:07:32,154 --> 04:07:34,090 GOING TO NEED OUR COLLECTIVE 7641 04:07:34,090 --> 04:07:35,124 WISDOM, EXPERTISE AS WELL AS 7642 04:07:35,124 --> 04:07:35,358 EFFORTS. 7643 04:07:35,358 --> 04:07:36,726 ONE OF THE THINGS I THINK KIND 7644 04:07:36,726 --> 04:07:38,561 OF UNITES A LOT OF THE 7645 04:07:38,561 --> 04:07:40,396 DISCUSSION HAS BEEN AROUND THE 7646 04:07:40,396 --> 04:07:42,365 ENGAGEMENT OF PATIENTS AND 7647 04:07:42,365 --> 04:07:43,266 COMMUNITIES, BUT THAT HAS TO 7648 04:07:43,266 --> 04:07:45,301 COME WITH A STRONG ENGAGEMENT 7649 04:07:45,301 --> 04:07:46,736 INFRASTRUCTURE AS WELL, AND SO 7650 04:07:46,736 --> 04:07:48,604 THAT MAY BE ANOTHER PLACE OF 7651 04:07:48,604 --> 04:07:49,605 COLLABORATION THAT WE COULD 7652 04:07:49,605 --> 04:07:51,240 REALLY THINK ABOUT, AND WE JUST 7653 04:07:51,240 --> 04:07:53,175 TALKED ABOUT HBCUs AS PART OF 7654 04:07:53,175 --> 04:07:54,477 THAT INFRASTRUCTURE, BUT I THINK 7655 04:07:54,477 --> 04:07:56,646 THAT KIND OF SUPPORT AND 7656 04:07:56,646 --> 04:07:58,180 TRAINING CAPACITY BUILDING ON 7657 04:07:58,180 --> 04:07:59,749 BOTH THE SIDE OF COMMUNITIES AS 7658 04:07:59,749 --> 04:08:02,151 WELL AS RESEARCHERS TO REALLY 7659 04:08:02,151 --> 04:08:03,719 UNDERSTAND WHAT ENGAGED RESEARCH 7660 04:08:03,719 --> 04:08:04,921 AND INCLUSIVE RESEARCH LOOKS 7661 04:08:04,921 --> 04:08:06,255 LIKE AND HOW IT'S CONDUCTED IS 7662 04:08:06,255 --> 04:08:08,124 GOING TO BE CRITICAL. 7663 04:08:08,124 --> 04:08:10,593 SO I MAY ALSO MENTION THAT PCORI 7664 04:08:10,593 --> 04:08:12,561 HAS TRIED TO DO SOME OF THIS 7665 04:08:12,561 --> 04:08:15,798 WORK WITH SUPPORTING THE TYPE OF 7666 04:08:15,798 --> 04:08:16,699 CAPACITY BUILDING OPPORTUNITIES 7667 04:08:16,699 --> 04:08:18,334 THAT ALLOW FOR COMMUNITIES AND 7668 04:08:18,334 --> 04:08:20,503 PATIENTS TO RAISE THE ISSUES OF 7669 04:08:20,503 --> 04:08:22,438 IMPORTANCE TO THEM, AS WELL AS 7670 04:08:22,438 --> 04:08:24,106 THINK ABOUT WHAT'S NECESSARY FOR 7671 04:08:24,106 --> 04:08:25,875 THEM TO PARTICIPATE FULLY IN THE 7672 04:08:25,875 --> 04:08:26,943 RESEARCH ENTERPRISE. 7673 04:08:26,943 --> 04:08:27,610 AND I THINK THAT'S GOING TO BE 7674 04:08:27,610 --> 04:08:29,278 CRITICAL FOR US TO REALLY 7675 04:08:29,278 --> 04:08:31,347 ADDRESS SEVERAL OF THESE ISSUES. 7676 04:08:31,347 --> 04:08:33,783 >> IT'S SO IMPORTANT, ACTUALLY 7677 04:08:33,783 --> 04:08:35,051 AT THE NETWORKING SESSION LAST 7678 04:08:35,051 --> 04:08:36,252 NIGHT, I MET A COUPLE OF EARLY 7679 04:08:36,252 --> 04:08:37,620 STAGE INVESTIGATORS WHO WERE 7680 04:08:37,620 --> 04:08:38,421 INSPIRED BY MANY OF THESE 7681 04:08:38,421 --> 04:08:39,288 CONVERSATIONS, BUT REALLY WANT 7682 04:08:39,288 --> 04:08:40,389 TO KNOW WHAT KIND OF SUPPORT IS 7683 04:08:40,389 --> 04:08:41,691 GOING TO BE THERE FOR THEM. 7684 04:08:41,691 --> 04:08:43,125 THEY'RE THE PIPELINE FOR OUR 7685 04:08:43,125 --> 04:08:44,627 FUTURE, AND HOW CAN WE HELP 7686 04:08:44,627 --> 04:08:46,362 SUPPORT THEM. 7687 04:08:46,362 --> 04:08:47,029 OLGA, I WANT TO TURN TO YOU REAL 7688 04:08:47,029 --> 04:08:47,363 QUICK. 7689 04:08:47,363 --> 04:08:48,431 YOU'VE BEEN KEEPING AN EYE ON 7690 04:08:48,431 --> 04:08:49,532 THE CHAT. 7691 04:08:49,532 --> 04:08:50,866 ARE THERE SOME QUESTIONS YOU 7692 04:08:50,866 --> 04:08:52,935 WANT TO BRING FORWARD FOR OUR 7693 04:08:52,935 --> 04:08:53,135 PANEL? 7694 04:08:53,135 --> 04:08:54,704 >> THERE ARE BASICALLY TWO MAIN 7695 04:08:54,704 --> 04:08:56,939 THEMES THAT I'VE BEEN SEEING IN 7696 04:08:56,939 --> 04:08:58,040 THE MANY QUESTIONS AND COMMENTS 7697 04:08:58,040 --> 04:08:59,475 THAT ARE COMING IN. 7698 04:08:59,475 --> 04:09:02,211 AND I THINK THAT ONE OF THEM IS 7699 04:09:02,211 --> 04:09:04,547 REALLY SPEAKING TO DEVELOPING 7700 04:09:04,547 --> 04:09:06,248 THE RESOURCES AND 7701 04:09:06,248 --> 04:09:07,350 INFRASTRUCTURE, AND I THINK THAT 7702 04:09:07,350 --> 04:09:08,651 EVERYBODY DOES AGREE THAT THESE 7703 04:09:08,651 --> 04:09:11,253 THINGS DO NEED TO BE BUILT UPON, 7704 04:09:11,253 --> 04:09:12,555 PARTICULARLY FROM THE LAST 7705 04:09:12,555 --> 04:09:15,091 PANEL'S COMMENTS ON NOT HAVING 7706 04:09:15,091 --> 04:09:18,661 SO MUCH OF A TRANSACTIONAL 7707 04:09:18,661 --> 04:09:19,996 RELATIONSHIP WITH HBCUs THAT 7708 04:09:19,996 --> 04:09:21,330 IT'S LOPSIDED. 7709 04:09:21,330 --> 04:09:23,399 SO HOW SPECIFICALLY HOW WOULD 7710 04:09:23,399 --> 04:09:27,536 YOU ALL SUGGEST TO CREATE THOSE 7711 04:09:27,536 --> 04:09:28,404 OPPORTUNITIES, AND THEN THE 7712 04:09:28,404 --> 04:09:30,906 SECOND ONE, I CAN PROVIDE 7713 04:09:30,906 --> 04:09:32,341 WHENEVER YOU FEEL WE HAVE TIME 7714 04:09:32,341 --> 04:09:34,877 FOR THAT. 7715 04:09:34,877 --> 04:09:35,411 >> TERRIFIC. 7716 04:09:35,411 --> 04:09:38,414 WHO'D LIKE TO GO FIRST? 7717 04:09:38,414 --> 04:09:40,049 >> I'D BE HAPPY TO. 7718 04:09:40,049 --> 04:09:41,884 >> GO AHEAD, NAKELA. 7719 04:09:41,884 --> 04:09:43,586 >> I'D BE HAPPY TO JUMP IN 7720 04:09:43,586 --> 04:09:45,354 BECAUSE YOU KNOW, I THINK WE 7721 04:09:45,354 --> 04:09:49,058 CERTAINLY HAVE SEEN THAT THERE 7722 04:09:49,058 --> 04:09:51,127 IS A NEED FOR THESE TYPES OF 7723 04:09:51,127 --> 04:09:52,561 RESOURCES FOR ALL MEMBERS OF A 7724 04:09:52,561 --> 04:09:53,229 MULTI-STAKEHOLDER RESEARCH TEAM, 7725 04:09:53,229 --> 04:09:55,931 RIGHT, AND SO I THINK THAT'S ONE 7726 04:09:55,931 --> 04:09:58,901 OF THE POINTS THAT OLGA WAS JUST 7727 04:09:58,901 --> 04:10:00,636 POINTING OUT, IS THAT AS MUCH 7728 04:10:00,636 --> 04:10:01,504 NEEDED FOR IN TERMS OF 7729 04:10:01,504 --> 04:10:03,139 INFRASTRUCTURE FOR RESEARCHERS 7730 04:10:03,139 --> 04:10:03,706 AS IT IS FOR COMMUNITIES TO 7731 04:10:03,706 --> 04:10:06,409 THINK ABOUT HOW TO DO THIS 7732 04:10:06,409 --> 04:10:07,043 DIFFERENTLY. 7733 04:10:07,043 --> 04:10:08,377 SO WE'VE ACTUALLY STARTED TO PUT 7734 04:10:08,377 --> 04:10:11,047 TOGETHER SOME MODULES THAT HELP 7735 04:10:11,047 --> 04:10:11,881 TO START TO BUILD AN 7736 04:10:11,881 --> 04:10:12,748 UNDERSTANDING OF WHAT THIS WORK 7737 04:10:12,748 --> 04:10:14,283 IS REALLY ABOUT. 7738 04:10:14,283 --> 04:10:15,718 WE HAVE SOMETHING CALLED A 7739 04:10:15,718 --> 04:10:16,352 RESEARCH FUNDAMENTALS COURSE 7740 04:10:16,352 --> 04:10:17,653 THAT IS MORE LIKE A 7741 04:10:17,653 --> 04:10:18,988 COMPREHENSIVE TRAINING TO 7742 04:10:18,988 --> 04:10:21,957 PROVIDE THE WAYS THAT COMMUNITY 7743 04:10:21,957 --> 04:10:22,558 MEMBERS AND OTHERS CAN LEARN 7744 04:10:22,558 --> 04:10:23,659 ABOUT THE RESEARCH PROCESS AND 7745 04:10:23,659 --> 04:10:26,195 HOW TO BE INVOLVED IN THE 7746 04:10:26,195 --> 04:10:27,897 RESEARCH PROCESS, BUT THEN WE 7747 04:10:27,897 --> 04:10:31,867 ALSO HAVE MODULES AROUND 7748 04:10:31,867 --> 04:10:32,902 BUILDING MULTI-STAKEHOLDER 7749 04:10:32,902 --> 04:10:34,336 RESEARCH TEAMS TO THINK ABOUT 7750 04:10:34,336 --> 04:10:35,037 HOW ARE YOU EFFECTIVE PARTNERS 7751 04:10:35,037 --> 04:10:36,138 AND COLLABORATING AND REALLY 7752 04:10:36,138 --> 04:10:37,973 SHARING THE PARTNERSHIP OF 7753 04:10:37,973 --> 04:10:40,276 THINGS LIKE AUTHORITY AND 7754 04:10:40,276 --> 04:10:41,477 DECISION-MAKING IN THE PROCESSES 7755 04:10:41,477 --> 04:10:43,879 OF RESEARCH, AND THAT REALLY 7756 04:10:43,879 --> 04:10:46,148 REQUIRES A NEW PARADIGM SHIFT 7757 04:10:46,148 --> 04:10:48,150 FOR RESEARCHERS AS WELL AS AN 7758 04:10:48,150 --> 04:10:50,219 INTRODUCTION INTO HOW THIS WORKS 7759 04:10:50,219 --> 04:10:51,520 FOR COMMUNITY MEMBERS AND 7760 04:10:51,520 --> 04:10:54,690 PATIENTS TO FEEL EMPOWERED IN 7761 04:10:54,690 --> 04:10:55,791 THE RELATIONSHIP. 7762 04:10:55,791 --> 04:10:57,626 AND THEN WE ALSO HAVE RECOGNIZED 7763 04:10:57,626 --> 04:10:59,395 THAT THERE ARE SOME OTHER TOOLS 7764 04:10:59,395 --> 04:11:00,729 AND RESOURCES THAT COULD HELP IN 7765 04:11:00,729 --> 04:11:01,464 THIS INFRASTRUCTURE THAT HAVE 7766 04:11:01,464 --> 04:11:03,532 BEEN DEVELOPED BY A LOT OF 7767 04:11:03,532 --> 04:11:05,267 AWARDEES WHO HAVE WORKED IN THIS 7768 04:11:05,267 --> 04:11:06,802 SPACE BEFORE, AND WE'VE CREATED 7769 04:11:06,802 --> 04:11:09,238 THIS REPOSITORY OF TOOLS AND 7770 04:11:09,238 --> 04:11:11,407 RESOURCES THAT ARE AVAILABLE ON 7771 04:11:11,407 --> 04:11:13,075 OUR WEBSITE AND THEN USED IN 7772 04:11:13,075 --> 04:11:13,943 RESEARCH PROJECTS THAT I THINK 7773 04:11:13,943 --> 04:11:15,778 COULD BE A RESOURCE MORE 7774 04:11:15,778 --> 04:11:16,879 BROADLY. 7775 04:11:16,879 --> 04:11:17,746 MAYBE I'LL PAUSE AND SEE IF 7776 04:11:17,746 --> 04:11:18,681 OTHERS WANT TO CHIME IN. 7777 04:11:18,681 --> 04:11:20,049 >> THANK YOU. 7778 04:11:20,049 --> 04:11:25,321 OTHERS WANT TO WEIGH IN? 7779 04:11:25,321 --> 04:11:28,657 >> PCORI IS OFTEN ON THE FRONT 7780 04:11:28,657 --> 04:11:32,495 END OF MAKING REALLY CRITICAL 7781 04:11:32,495 --> 04:11:34,697 RESEARCH RESOURCES AVAILABLE TO 7782 04:11:34,697 --> 04:11:35,731 THE COMMUNITY. 7783 04:11:35,731 --> 04:11:38,767 BUT PLEASE. 7784 04:11:38,767 --> 04:11:41,704 >> THIS TO A LARGE EXTENT IS WHY 7785 04:11:41,704 --> 04:11:43,539 PCORI WAS CREATED, SO I'M REALLY 7786 04:11:43,539 --> 04:11:45,107 GLAD TO SEE DR. COOK AND 7787 04:11:45,107 --> 04:11:46,709 COLLEAGUES ARE DOING WHAT THEY 7788 04:11:46,709 --> 04:11:48,244 WERE INTENDED TO DO. 7789 04:11:48,244 --> 04:11:49,778 IT'S SHOWING THE WAY. 7790 04:11:49,778 --> 04:11:50,479 BUT I THINK THE NEXT QUESTION 7791 04:11:50,479 --> 04:11:58,354 IS, HOW DO YOU WEAVE THIS INTO 7792 04:11:58,354 --> 04:12:00,856 THE FABRIC OF THE WORK THAT'S 7793 04:12:00,856 --> 04:12:01,624 GOING ON IN OUR HEALTH SYSTEMS 7794 04:12:01,624 --> 04:12:02,391 ACROSS THE COUNTRY. 7795 04:12:02,391 --> 04:12:05,127 I THINK THAT'S BEEN A TOUGHER 7796 04:12:05,127 --> 04:12:06,962 NUT TO CRACK. 7797 04:12:06,962 --> 04:12:07,763 BUT YOU KNOW, FOR EXAMPLE, IT 7798 04:12:07,763 --> 04:12:11,700 MIGHT BE GOOD IF THERE WAS A 7799 04:12:11,700 --> 04:12:15,938 PAYMENT FOR PARTICIPATION IN 7800 04:12:15,938 --> 04:12:17,239 RESEARCH, BUT IT ALSO MEANS THAT 7801 04:12:17,239 --> 04:12:19,241 THE HEALTH SYSTEMS OR THOSE 7802 04:12:19,241 --> 04:12:21,977 DOING RESEARCH HAVE TO REACH OUT 7803 04:12:21,977 --> 04:12:24,146 MUCH FURTHER, AS WAS MENTIONED 7804 04:12:24,146 --> 04:12:24,580 IN THE LAST PANEL. 7805 04:12:24,580 --> 04:12:26,182 I KNOW, PETER, THAT VANDERBILT 7806 04:12:26,182 --> 04:12:26,982 HAS BEEN DOING A LOT OF THIS 7807 04:12:26,982 --> 04:12:28,384 STUFF SO YOU MAY HAVE SOMETHING 7808 04:12:28,384 --> 04:12:29,185 TO SAY THERE. 7809 04:12:29,185 --> 04:12:30,386 >> YEAH, ABSOLUTELY. 7810 04:12:30,386 --> 04:12:32,421 I THINK, YOU KNOW, I THINK 7811 04:12:32,421 --> 04:12:34,623 YOU'RE ALLUDING TO IT AS WELL, 7812 04:12:34,623 --> 04:12:38,027 AND FRANKLY WE LIVE IN A HEALTH 7813 04:12:38,027 --> 04:12:39,929 SYSTEM RIGHT NOW WHERE A LOT OF 7814 04:12:39,929 --> 04:12:40,763 RESEARCH ACTIVITIES ARE 7815 04:12:40,763 --> 04:12:41,864 SUBSIDIZED BY CLINICAL WORK, 7816 04:12:41,864 --> 04:12:44,033 RIGHT? 7817 04:12:44,033 --> 04:12:47,536 AND SO TO A DEGREE, THERE IS A 7818 04:12:47,536 --> 04:12:48,404 HAVES VERSUS HAVE NOT SITUATION 7819 04:12:48,404 --> 04:12:49,939 THAT WE'RE DEALING WITH AND SO 7820 04:12:49,939 --> 04:12:51,240 HAVING RESOURCES LIKE THE ONES 7821 04:12:51,240 --> 04:12:54,176 THAT ARE COMING OUT AT PCORI ARE 7822 04:12:54,176 --> 04:12:55,077 CRITICAL, BUT HAVING THE 7823 04:12:55,077 --> 04:12:56,512 INFRASTRUCTURE AND THE 7824 04:12:56,512 --> 04:12:57,146 SUSTAINABLE INFRASTRUCTURE IS 7825 04:12:57,146 --> 04:13:01,283 OFTEN THE DIVIDE, BECAUSE YOU'LL 7826 04:13:01,283 --> 04:13:02,251 HAVE INSTITUTIONS THAT ARE THE 7827 04:13:02,251 --> 04:13:03,686 MORE TRADITIONAL PLACES WHERE 7828 04:13:03,686 --> 04:13:04,453 RESEARCH TAKES PLACE WHERE 7829 04:13:04,453 --> 04:13:06,555 THERE'S ENOUGH OF A DIVERSITY OF 7830 04:13:06,555 --> 04:13:08,724 FUNDING AND CAPABILITY TO BE 7831 04:13:08,724 --> 04:13:12,561 ABLE TO SUSTAIN THE 7832 04:13:12,561 --> 04:13:13,529 INFRASTRUCTURE BECAUSE OF THIS 7833 04:13:13,529 --> 04:13:18,567 DIVERSE FUNDING PORTFOLIO, AND 7834 04:13:18,567 --> 04:13:20,436 THAT AS WE CONTINUE TO ENGAGE 7835 04:13:20,436 --> 04:13:21,704 WITH RESEARCH CENTERS AT 7836 04:13:21,704 --> 04:13:23,405 MINORITY INSTITUTIONS AND OTHER 7837 04:13:23,405 --> 04:13:24,173 PLACES, IT'S INCREASINGLY 7838 04:13:24,173 --> 04:13:25,274 EVIDENT THAT THAT'S A BIG 7839 04:13:25,274 --> 04:13:25,808 DIVIDE. 7840 04:13:25,808 --> 04:13:27,943 THE TECHNOLOGY INFRASTRUCTURE IS 7841 04:13:27,943 --> 04:13:30,646 NOT THE SAME, THE RESOURCES FOR 7842 04:13:30,646 --> 04:13:32,181 PERSONNEL AND SUSTAINING THAT 7843 04:13:32,181 --> 04:13:36,185 TBEEN DIFTHATBETWEEN DIFFERENT T 7844 04:13:36,185 --> 04:13:36,552 THE SAME. 7845 04:13:36,552 --> 04:13:37,987 THE TURNOVER THAT TAKES PLACE 7846 04:13:37,987 --> 04:13:40,256 AND HAVING PEOPLE WHO CAN 7847 04:13:40,256 --> 04:13:40,823 ACTUALLY TRANSLATE MATERIALS 7848 04:13:40,823 --> 04:13:42,358 INTO DIFFERENT LANGUAGES AND 7849 04:13:42,358 --> 04:13:43,359 MAKE THEM AVAILABLE AND ENGAGE 7850 04:13:43,359 --> 04:13:45,094 WITH THE COMMUNITIES, ALL THOSE 7851 04:13:45,094 --> 04:13:47,062 THINGS ARE EXPENSIVE, AND OFTEN 7852 04:13:47,062 --> 04:13:50,032 NOT AVAILABLE BECAUSE THE 7853 04:13:50,032 --> 04:13:53,636 PARADIGM IS SORT OF BUILT ON A 7854 04:13:53,636 --> 04:13:56,905 PARADIGM THAT EXPECTS SOME OF 7855 04:13:56,905 --> 04:13:58,007 THE LARGER ACADEMIC HEALTH 7856 04:13:58,007 --> 04:13:58,974 CENTERS AS SORT OF WHAT WE'RE 7857 04:13:58,974 --> 04:13:59,441 DEALING WITH. 7858 04:13:59,441 --> 04:14:01,277 SO I THINK ONE OF THE THINGS 7859 04:14:01,277 --> 04:14:02,945 WE'RE LEARNING IS IF WE'RE GOING 7860 04:14:02,945 --> 04:14:04,680 TO OVERCOME THE DISPARITIES, 7861 04:14:04,680 --> 04:14:06,215 WE'VE GOT TO BE LOOKING AT THIS 7862 04:14:06,215 --> 04:14:07,316 FROM A VERY DIFFERENT 7863 04:14:07,316 --> 04:14:08,484 PERSPECTIVE, AND OF COURSE THE 7864 04:14:08,484 --> 04:14:09,285 PEOPLE WHO ARE GOING TO INFORM 7865 04:14:09,285 --> 04:14:10,886 THAT ARE THE ONES WHO ARE LIVING 7866 04:14:10,886 --> 04:14:12,588 THIS ON THE GROUND AT THE 7867 04:14:12,588 --> 04:14:13,656 HBCUs AND OTHER PLACES. 7868 04:14:13,656 --> 04:14:15,424 SO I THINK THAT'S BEEN THE 7869 04:14:15,424 --> 04:14:16,392 CONVERSATION THAT WE'RE HAVING 7870 04:14:16,392 --> 04:14:19,261 NOW TO FIGURE OUT WHAT ARE THOSE 7871 04:14:19,261 --> 04:14:21,096 LOGISTICAL AND RESOURCE GAPS AND 7872 04:14:21,096 --> 04:14:23,499 THEN WHERE DO THE RESOURCES AND 7873 04:14:23,499 --> 04:14:24,166 DOLLARS NEED TO BE SPENT AND HOW 7874 04:14:24,166 --> 04:14:30,739 DOES THAT THEN BACK UPSTREAM AND 7875 04:14:30,739 --> 04:14:32,041 HOW WE FUND THE OVERALL 7876 04:14:32,041 --> 04:14:32,341 ENTERPRISE. 7877 04:14:32,341 --> 04:14:35,044 >> I WANTED TO ADD TO SOMETHING 7878 04:14:35,044 --> 04:14:37,012 WE DISCUSS AT MODERNA, OF COURSE 7879 04:14:37,012 --> 04:14:38,080 WE WANT MORE EXPERIENCED 7880 04:14:38,080 --> 04:14:42,017 INVESTIGATORS BUT NOT FOR 7881 04:14:42,017 --> 04:14:43,018 MODERNA TRIALS, SO HOW DO WE 7882 04:14:43,018 --> 04:14:44,219 WORK WITH OUR INDUSTRY PARTNERS 7883 04:14:44,219 --> 04:14:46,121 TO MAKE SURE WE'RE ENCOURAGING 7884 04:14:46,121 --> 04:14:46,822 MORE INVESTIGATE ARES TO TO HAVE 7885 04:14:46,822 --> 04:14:48,590 ACCESS TO ALL TRIALS, SO REALLY 7886 04:14:48,590 --> 04:14:50,225 JUST KIND OF FIGURE OUT HOW WE 7887 04:14:50,225 --> 04:14:51,660 CAN SUPPORT THAT BUT ALSO FOR 7888 04:14:51,660 --> 04:14:52,795 EVERYONE ELSE, IT'S SOMETHING 7889 04:14:52,795 --> 04:14:53,929 WE'RE KIND OF TRYING TO FIGURE 7890 04:14:53,929 --> 04:14:54,930 OUT BECAUSE AGAIN, WE WOULD LOVE 7891 04:14:54,930 --> 04:14:56,532 FOR THEM TO WORK ON MODERNA 7892 04:14:56,532 --> 04:14:57,833 TRIALS, BUT WE WANT THEM TO WORK 7893 04:14:57,833 --> 04:15:00,135 ON ALL TRIALS AS WELL, SO REALLY 7894 04:15:00,135 --> 04:15:00,803 UNDERSTANDING THOSE LOGISTICS OF 7895 04:15:00,803 --> 04:15:02,671 HOW WE SUPPORT NEW INVESTIGATORS 7896 04:15:02,671 --> 04:15:05,274 BUT WE SUPPORT THEM AS AN 7897 04:15:05,274 --> 04:15:06,475 INDUSTRY AND NOT JUST ONE 7898 04:15:06,475 --> 04:15:10,512 COMPANY HERE AND THERE. 7899 04:15:10,512 --> 04:15:11,313 >> THESE ARE GREAT. 7900 04:15:11,313 --> 04:15:12,181 ACTUALLY I JUST WONDERED, 7901 04:15:12,181 --> 04:15:13,582 THERE'S A LONG QUESTION IN THE 7902 04:15:13,582 --> 04:15:14,450 CHAT FOR DR. CALIFF. 7903 04:15:14,450 --> 04:15:16,752 BEFORE WE GET TO THAT ONE, 7904 04:15:16,752 --> 04:15:18,387 DR. CALIFF IF I COULD ASK YOU, 7905 04:15:18,387 --> 04:15:19,421 BECAUSE YOU HAVE A NATIONAL AND 7906 04:15:19,421 --> 04:15:20,622 GLOBAL PERSPECTIVE, WHICH YOU 7907 04:15:20,622 --> 04:15:22,358 SAID AT THE OUTSET, ARE THERE 7908 04:15:22,358 --> 04:15:23,926 THINGS WE CAN LEARN FROM OUR 7909 04:15:23,926 --> 04:15:24,893 PARTNERS ACROSS THE GLOBE ABOUT 7910 04:15:24,893 --> 04:15:25,661 HOW TO DO THIS? 7911 04:15:25,661 --> 04:15:27,763 ARE THERE ANY GOOD MODELS OUT 7912 04:15:27,763 --> 04:15:27,963 THERE? 7913 04:15:27,963 --> 04:15:30,699 >> UM, YOU KNOW, I WOULD SAY THE 7914 04:15:30,699 --> 04:15:32,134 MODELS ARE DEPENDENT ON THE 7915 04:15:32,134 --> 04:15:33,535 PURPOSE AND THERE'S SO MANY 7916 04:15:33,535 --> 04:15:35,104 FACTORINGS IN PLAY, IT'S VERY 7917 04:15:35,104 --> 04:15:37,740 HARD TO GENERALIZE. 7918 04:15:37,740 --> 04:15:40,142 BUT I'D SAY THE U.S. IS 7919 04:15:40,142 --> 04:15:44,179 PARTICULARLY GOOD AT INDUSTRIAL 7920 04:15:44,179 --> 04:15:45,714 STRENGTH HIGH-TECH EARLY PHASE 7921 04:15:45,714 --> 04:15:49,318 RESEARCH AND PARTICULARLY BEHIND 7922 04:15:49,318 --> 04:15:52,488 THE CURVE IN LARGE PRAGMATIC 7923 04:15:52,488 --> 04:15:54,390 STUDIES WHERE OUR EUROPEAN 7924 04:15:54,390 --> 04:15:58,861 COLLEAGUES CLEETION AND OUR COLN 7925 04:15:58,861 --> 04:16:00,929 COLLEAGUES ARE BETTER EQUIPPED 7926 04:16:00,929 --> 04:16:02,131 BECAUSE THEIR HEALTH SYSTEMS ARE 7927 04:16:02,131 --> 04:16:04,032 DESIGNED TO BE MORE EQUITABLE 7928 04:16:04,032 --> 04:16:07,369 AND REACH INTO EVERY SECTION. 7929 04:16:07,369 --> 04:16:08,704 I JUST READ A FABULOUS ARTICLE 7930 04:16:08,704 --> 04:16:09,905 ABOUT THE DECLINE OF LIFE 7931 04:16:09,905 --> 04:16:13,742 EXPECTANCY IN THE U.S., WHICH IS 7932 04:16:13,742 --> 04:16:14,943 STARKLY DIFFERENT THAN ALL THE 7933 04:16:14,943 --> 04:16:15,811 OTHER COUNTRIES THAT WE'RE 7934 04:16:15,811 --> 04:16:17,212 TALKING ABOUT, AND I THINK IT'S 7935 04:16:17,212 --> 04:16:19,248 FOR ALL THE SAME REASONS THAT 7936 04:16:19,248 --> 04:16:21,750 RESEARCH IS HARD TO DO HERE. 7937 04:16:21,750 --> 04:16:23,385 WE'RE NOT DELIVERING THE GOODS 7938 04:16:23,385 --> 04:16:24,253 OUT IN THE COMMUNITIES WHERE 7939 04:16:24,253 --> 04:16:25,587 IT'S NEEDED. 7940 04:16:25,587 --> 04:16:29,057 A POINT MADE IN THE LAST PANEL. 7941 04:16:29,057 --> 04:16:31,493 SO I THINK FOR THE FDA 7942 04:16:31,493 --> 04:16:32,895 PERSPECTIVE, I HAVE TO ASK THE 7943 04:16:32,895 --> 04:16:33,962 QUESTION, WHY DID I HAVE TO CALL 7944 04:16:33,962 --> 04:16:36,598 ISRAEL TO FIGURE OUT WHAT TO DO 7945 04:16:36,598 --> 04:16:39,101 WITH THE NEXT VACCINE DOSE? 7946 04:16:39,101 --> 04:16:40,002 AND WHY DID I HAVE TO CALL THE 7947 04:16:40,002 --> 04:16:41,403 U.K. TO FIGURE OUT WHICH 7948 04:16:41,403 --> 04:16:43,505 TREATMENTS WERE EFFECTIVE FOR 7949 04:16:43,505 --> 04:16:43,939 COVID? 7950 04:16:43,939 --> 04:16:45,407 IT'S BECAUSE THEY HAD NATIONAL 7951 04:16:45,407 --> 04:16:48,110 SYSTEMS THAT ARE INTEGRATED, 7952 04:16:48,110 --> 04:16:50,179 DISTRIBUTED, AND MUCH MORE 7953 04:16:50,179 --> 04:16:51,613 EQUITABLE WITHIN THEIR 7954 04:16:51,613 --> 04:16:53,115 POPULATIONS. 7955 04:16:53,115 --> 04:16:54,550 BUT I COULD POINT OUT MANY 7956 04:16:54,550 --> 04:16:56,618 PROBLEMS WITH THEIR SYSTEMS TOO. 7957 04:16:56,618 --> 04:16:57,820 LIKE ISRAEL IS EQUITABLE FOR 7958 04:16:57,820 --> 04:16:59,688 SOME POPULATIONS BUT NOT OTHER 7959 04:16:59,688 --> 04:17:01,457 PARTS OF THE POPULATION. 7960 04:17:01,457 --> 04:17:02,758 SO I THINK THERE'S A LOT TO 7961 04:17:02,758 --> 04:17:05,828 LEARN FROM AROUND THE WORLD. 7962 04:17:05,828 --> 04:17:07,362 AND WE HAVE CERTAIN STRENGTHS IN 7963 04:17:07,362 --> 04:17:08,864 THE U.S. THAT OTHERS ENVY A LOT 7964 04:17:08,864 --> 04:17:13,836 AT THE SAME TIME. 7965 04:17:13,836 --> 04:17:14,470 >> TERRIFIC. 7966 04:17:14,470 --> 04:17:15,938 THANK YOU FOR THAT RESPONSE. 7967 04:17:15,938 --> 04:17:16,305 APPRECIATE THAT. 7968 04:17:16,305 --> 04:17:17,873 LET ME JUST THROW THIS OUT AS A 7969 04:17:17,873 --> 04:17:20,042 GENERAL QUESTION AND THEN -- 7970 04:17:20,042 --> 04:17:21,610 OLGA, GIVE ME A HIGH 5 IF 7971 04:17:21,610 --> 04:17:22,277 THERE'S SOMETHING ELSE THAT YOU 7972 04:17:22,277 --> 04:17:23,579 THINK WE SHOULD ASK FROM THE 7973 04:17:23,579 --> 04:17:25,547 CHAT. 7974 04:17:25,547 --> 04:17:27,816 A QUESTION ABOUT DATA HAS BEEN A 7975 04:17:27,816 --> 04:17:28,817 BIG QUESTION, AND I KNOW IT'S 7976 04:17:28,817 --> 04:17:29,918 SOMETHING THAT'S OF INTEREST TO 7977 04:17:29,918 --> 04:17:30,586 MANY OF YOU. 7978 04:17:30,586 --> 04:17:32,988 WE'VE GOT LOTS OF DATA, I THINK, 7979 04:17:32,988 --> 04:17:34,089 AROUND THE -- ABOUT 7980 04:17:34,089 --> 04:17:34,723 REPRESENTATIVE, BUT IT'S 7981 04:17:34,723 --> 04:17:36,792 DIFFICULT TO ACCESS AND 7982 04:17:36,792 --> 04:17:37,559 MANIPULATE. 7983 04:17:37,559 --> 04:17:38,961 ANYBODY HAVE ANY STRATEGIES 7984 04:17:38,961 --> 04:17:39,862 ABOUT HOW WE MIGHT GET AT THAT 7985 04:17:39,862 --> 04:17:41,196 DATA TO UNDERSTAND WHAT'S GOING 7986 04:17:41,196 --> 04:17:42,464 ON UNDERNEATH THE SURFACE? 7987 04:17:42,464 --> 04:17:43,999 AND I'M LOOKING AT YOUR NICE -- 7988 04:17:43,999 --> 04:17:45,434 THANK YOU, I CAN SEE DR. EMBI, 7989 04:17:45,434 --> 04:17:46,635 YOU'RE ALREADY READY TO GO WITH 7990 04:17:46,635 --> 04:17:47,002 THIS ONE. 7991 04:17:47,002 --> 04:17:48,537 >> AND I'M HAPPY TO JUMP IN 7992 04:17:48,537 --> 04:17:49,838 FIRST, BUT I KNOW MY COLLEAGUES 7993 04:17:49,838 --> 04:17:52,241 WILL ALL HAVE AN OPINION ABOUT 7994 04:17:52,241 --> 04:17:53,842 THIS, AND I'M PARTICULARLY 7995 04:17:53,842 --> 04:17:54,877 INTERESTED IN DR. CALIFF'S POINT 7996 04:17:54,877 --> 04:17:59,014 OF VIEW TOO, BUT I WILL TELL 7997 04:17:59,014 --> 04:18:00,449 YOU, IT SORT OF MIRRORS TO SOME 7998 04:18:00,449 --> 04:18:03,418 EXTENT WHAT ROB JUST SAID ABOUT 7999 04:18:03,418 --> 04:18:04,853 SORT OF THE -- WE HAVE A LOT OF 8000 04:18:04,853 --> 04:18:06,488 STRENGTHS IN THIS COUNTRY, BUT 8001 04:18:06,488 --> 04:18:07,689 AGAIN, THEY ARE APPLIED AND 8002 04:18:07,689 --> 04:18:08,390 AVAILABLE DIFFERENTIALLY, 8003 04:18:08,390 --> 04:18:09,358 DEPENDING ON WHO YOU ARE AND 8004 04:18:09,358 --> 04:18:10,893 WHERE YOU COME FROM, RIGHT? 8005 04:18:10,893 --> 04:18:12,494 SO WE KNOW THAT WHILE WE HAVE 8006 04:18:12,494 --> 04:18:14,396 VERY ROBUST DATA ASSETS AND THEY 8007 04:18:14,396 --> 04:18:15,964 CAN BE LEVERAGED AND THEY ARE 8008 04:18:15,964 --> 04:18:17,165 BEING LEVERAGED FOR DISCOVERY 8009 04:18:17,165 --> 04:18:18,567 AND RECRUITMENT AND ALL THE 8010 04:18:18,567 --> 04:18:19,535 OTHER THINGS WE'RE TALKING ABOUT 8011 04:18:19,535 --> 04:18:21,870 IN VERY INNOVATIVE AND EXCITING 8012 04:18:21,870 --> 04:18:23,505 WAY, THERE ARE ALSO LIMITATIONS 8013 04:18:23,505 --> 04:18:27,009 TO THOSE DATA THAT ARE -- THAT 8014 04:18:27,009 --> 04:18:29,011 BASICALLY INHERIT THE STRUCTURAL 8015 04:18:29,011 --> 04:18:30,178 AND SYSTEMIC RACISM AND OTHER 8016 04:18:30,178 --> 04:18:31,613 THINGS THAT EXIST IN OUR 8017 04:18:31,613 --> 04:18:33,148 SOCIETY, RIGHT, AND THE 8018 04:18:33,148 --> 04:18:34,516 DIFFERENTIAL IN TERMS OF PEOPLE 8019 04:18:34,516 --> 04:18:35,417 THAT HAVE HEALTHCARE COVERAGE 8020 04:18:35,417 --> 04:18:36,885 AND THOSE WHO DON'T, ET CETERA, 8021 04:18:36,885 --> 04:18:39,421 WE'RE SEEING THAT PLAY OUT NOW 8022 04:18:39,421 --> 04:18:40,956 AS WE'RE TRYING TO LEVERAGE THE 8023 04:18:40,956 --> 04:18:45,561 DATA FOR ARTIFICIAL INTELLIGENCE 8024 04:18:45,561 --> 04:18:47,863 TECHNOLOGIES WHERE WE SEAL BIAS 8025 04:18:47,863 --> 04:18:49,364 AND DISPARITIES GET SORT OF 8026 04:18:49,364 --> 04:18:49,965 BAKED IN. 8027 04:18:49,965 --> 04:18:52,034 THE SAME SORT OF THINGS HAPPENS 8028 04:18:52,034 --> 04:18:54,102 WHEN IT COMES TO IDENTIFYING AND 8029 04:18:54,102 --> 04:18:55,337 APPROACHES PEOPLE FOR CLINICAL 8030 04:18:55,337 --> 04:18:56,672 RESEARCH STUDIES. 8031 04:18:56,672 --> 04:18:58,707 WE'VE ACTUALLY HAD STUDYS THAT 8032 04:18:58,707 --> 04:18:59,441 INADVERTENTLY DEMONSTRATE THAT 8033 04:18:59,441 --> 04:19:00,509 WHEN YOU START TO USE 8034 04:19:00,509 --> 04:19:01,610 TECHNOLOGIES AND CAPABILITY AND 8035 04:19:01,610 --> 04:19:03,378 DATA TO BETTER IDENTIFY PEOPLE 8036 04:19:03,378 --> 04:19:05,113 WHO MIGHT BE ELIGIBLE FOR 8037 04:19:05,113 --> 04:19:08,083 STUDIES, YOU CAN ACTUALLY, IN A 8038 04:19:08,083 --> 04:19:09,818 REVERSE FASHION TO WHAT YOU 8039 04:19:09,818 --> 04:19:11,420 MIGHT INTEND, INCREASE 8040 04:19:11,420 --> 04:19:13,355 RECRUITMENT OF THOSE WHO ARE THE 8041 04:19:13,355 --> 04:19:14,556 HAVES OVER THE HAVE-NOTS BECAUSE 8042 04:19:14,556 --> 04:19:17,192 YOU JUST HAVE BETTER DATA ABOUT 8043 04:19:17,192 --> 04:19:17,392 THEM. 8044 04:19:17,392 --> 04:19:18,627 SO ONE OF THE THINGS WE HAVE TO 8045 04:19:18,627 --> 04:19:20,829 ADDRESS IS, HOW DO WE EVEN THAT 8046 04:19:20,829 --> 04:19:23,899 PLAYING FIELD WHILE 8047 04:19:23,899 --> 04:19:24,533 SIMULTANEOUSLY RECOGNIZING THAT 8048 04:19:24,533 --> 04:19:26,301 WE HAVE A LOT OF DATA THAT ARE 8049 04:19:26,301 --> 04:19:27,502 FLOWING AROUND US THAT WE CAN 8050 04:19:27,502 --> 04:19:30,172 AND SHOULD BE LEVERAGING, AND 8051 04:19:30,172 --> 04:19:31,607 RIGHT NOW FOR THE MOST PART, 8052 04:19:31,607 --> 04:19:33,141 THOSE DATA ARE NOT BEING USED 8053 04:19:33,141 --> 04:19:33,809 FOR GOOD. 8054 04:19:33,809 --> 04:19:35,277 THEY'RE BEING USED FOR, YOU 8055 04:19:35,277 --> 04:19:37,179 KNOW, MARKETING AND ELECTIONS 8056 04:19:37,179 --> 04:19:40,315 AND VARIOUS OTHER THINGS. 8057 04:19:40,315 --> 04:19:42,451 SOME OF WHICH, YOU KNOW, MAY BE 8058 04:19:42,451 --> 04:19:45,020 GOOD, MAYBE NOT SO GREAT, AND 8059 04:19:45,020 --> 04:19:46,121 FRANKLY IN TERMS OF WHAT HE WITH 8060 04:19:46,121 --> 04:19:49,191 NEED TO DO FOR IMPROVING 8061 04:19:49,191 --> 04:19:51,259 PEOPLE'S HEALTH, THERE IS 8062 04:19:51,259 --> 04:19:52,260 INCREDIBLE POTENTIAL BUT A LOT 8063 04:19:52,260 --> 04:19:53,228 MORE ATTENTION NEEDS TO BE PAID. 8064 04:19:53,228 --> 04:19:55,230 SO I'M VERY BULLISH ON IT. 8065 04:19:55,230 --> 04:19:57,099 I THINK THERE'S A LOT -- I'M 8066 04:19:57,099 --> 04:19:58,266 QUITE BIASED, OF COURSE, BUT I 8067 04:19:58,266 --> 04:19:59,868 THINK THERE'S A LOT WE CAN AND 8068 04:19:59,868 --> 04:20:04,039 SHOULD BE DOING WITH OUR DATA TO 8069 04:20:04,039 --> 04:20:05,107 IMPROVE HEALTH AND HEALTH 8070 04:20:05,107 --> 04:20:06,308 RESEARCH. 8071 04:20:06,308 --> 04:20:07,309 IT'S WHAT I'VE SPENT MOST OF MY 8072 04:20:07,309 --> 04:20:08,844 CAREER DOING BUT I'M ALSO VERY 8073 04:20:08,844 --> 04:20:10,145 AWARE OF THE DISCREPANCIES THAT 8074 04:20:10,145 --> 04:20:14,549 EXIST IN THAT REGARD. 8075 04:20:14,549 --> 04:20:14,916 >> TERRIFIC. 8076 04:20:14,916 --> 04:20:15,517 THANK YOU. 8077 04:20:15,517 --> 04:20:16,818 ANYBODY ELSE WANT TO WEIGH IN ON 8078 04:20:16,818 --> 04:20:17,686 THAT ONE, ON DATA? 8079 04:20:17,686 --> 04:20:19,688 >> I THINK WE HAVE TO DO A 8080 04:20:19,688 --> 04:20:21,423 BETTER JOB OF ASKING PEOPLE IF 8081 04:20:21,423 --> 04:20:23,959 THEY'RE WILLING TO SHARE THEIR 8082 04:20:23,959 --> 04:20:24,926 DATA. 8083 04:20:24,926 --> 04:20:25,827 RESEARCH!AMERICA DOES SURVEYS 8084 04:20:25,827 --> 04:20:28,797 AND THE LAST NATIONAL SURVEY WE 8085 04:20:28,797 --> 04:20:31,133 DID ON CLINICAL RESEARCH WAS IN 8086 04:20:31,133 --> 04:20:31,600 2017. 8087 04:20:31,600 --> 04:20:33,602 WE HOPE TO DO A NEW ONE. 8088 04:20:33,602 --> 04:20:36,538 BUT IN THE 2017 STUDY, AFRICAN 8089 04:20:36,538 --> 04:20:38,306 AMERICANS WERE WILLING TO SHARE 8090 04:20:38,306 --> 04:20:39,875 THEIR PERSONAL HEALTH DATA SO 8091 04:20:39,875 --> 04:20:41,576 THAT RESEARCHERS COULD BETTER 8092 04:20:41,576 --> 04:20:42,778 UNDERSTAND DISEASE, IMPROVE 8093 04:20:42,778 --> 04:20:46,415 PATIENT CARE, ADVANCE MEDICAL 8094 04:20:46,415 --> 04:20:46,682 RESEARCH. 8095 04:20:46,682 --> 04:20:47,716 SO OFTEN IT COMES DOWN TO 8096 04:20:47,716 --> 04:20:48,617 ASKING, AND OBVIOUSLY THERE 8097 04:20:48,617 --> 04:20:51,019 ARE -- YOU KNOW, THERE'S HIPAA 8098 04:20:51,019 --> 04:20:53,321 AND THERE'S LOTS OF VARIOUS 8099 04:20:53,321 --> 04:20:54,623 REGULATORY AND LEGAL HURDLES, 8100 04:20:54,623 --> 04:20:59,461 BUT I DO THINK IT'S THE ASK THAT 8101 04:20:59,461 --> 04:21:02,197 NEEDS TO HAPPEN MUCH MORE 8102 04:21:02,197 --> 04:21:03,632 UNIVERSALLY. 8103 04:21:03,632 --> 04:21:08,003 WHEN IT COMES TO DATA. 8104 04:21:08,003 --> 04:21:10,639 >> WONDERFUL. 8105 04:21:10,639 --> 04:21:11,073 DR. CALIFF, PLEASE. 8106 04:21:11,073 --> 04:21:13,475 >> I'M VERY OPTIMISTIC ON WHERE 8107 04:21:13,475 --> 04:21:14,476 WE'RE HEADED WITH THE DATA 8108 04:21:14,476 --> 04:21:16,712 BECAUSE TECHNOLOGY HAS IMPROVED 8109 04:21:16,712 --> 04:21:16,945 SO MUCH. 8110 04:21:16,945 --> 04:21:17,979 I THINK IT'S JUST A MATTER OF 8111 04:21:17,979 --> 04:21:19,047 TIME UNTIL THE TECHNOLOGY MAKES 8112 04:21:19,047 --> 04:21:20,916 IT REALLY, REALLY EASY. 8113 04:21:20,916 --> 04:21:24,886 BUT THE PROBLEM WE HAVE IS WHAT 8114 04:21:24,886 --> 04:21:28,423 WAS JUST ALLUDED TO, WHICH IS 8115 04:21:28,423 --> 04:21:30,225 JENNY POINTED OUT, WE NEED TO 8116 04:21:30,225 --> 04:21:32,461 ASK PEOPLE, BUT I ALSO THINK ALL 8117 04:21:32,461 --> 04:21:35,097 OF US NEED TO SPEND A LOT MORE 8118 04:21:35,097 --> 04:21:39,735 TIME MAKING SURE WE ALL 8119 04:21:39,735 --> 04:21:41,369 UNDERSTAND THE BARGAIN, THE 8120 04:21:41,369 --> 04:21:42,571 DEAL, WHAT IS THE REASON PEOPLE 8121 04:21:42,571 --> 04:21:44,306 SHOULD VOLUNTEER THEIR DATA AND 8122 04:21:44,306 --> 04:21:45,974 WHAT ASSURANCE ARE THEY GET THAT 8123 04:21:45,974 --> 04:21:47,609 IT'S GOING TO BE USED FOR GOOD, 8124 04:21:47,609 --> 04:21:49,478 BECAUSE IT'S BEEN THE CASE FOR 8125 04:21:49,478 --> 04:21:51,146 30 YEARS, AND SURVEY AFTER 8126 04:21:51,146 --> 04:21:53,915 SURVEY, PEOPLE SAY IF MY DATA 8127 04:21:53,915 --> 04:21:54,883 CAN HELP SOMEONE ELSE WITH A 8128 04:21:54,883 --> 04:21:56,418 HEALTH PROBLEM, I'M ALL FOUR IT. 8129 04:21:56,418 --> 04:21:59,054 IT'S LIKE 90% OF PEOPLE. 8130 04:21:59,054 --> 04:21:59,287 SAY YES 8131 04:21:59,287 --> 04:22:02,357 TO THAT. 8132 04:22:02,357 --> 04:22:03,425 BUT THEY ALSO KNOW THAT RIGHT 8133 04:22:03,425 --> 04:22:05,093 NOW, THEIR DATA IS BEING USED BY 8134 04:22:05,093 --> 04:22:07,662 ALL KINDS OF PEOPLE IN WAYS THEY 8135 04:22:07,662 --> 04:22:10,298 DON'T KNOW, NOT NECESSARILY FOR 8136 04:22:10,298 --> 04:22:10,932 THEIR BENEFIT, INCLUDING BY OUR 8137 04:22:10,932 --> 04:22:12,400 OWN HEALTH SYSTEMS WHO ARE OFTEN 8138 04:22:12,400 --> 04:22:14,803 USING TO LOOK AT WHAT'S CALLED 8139 04:22:14,803 --> 04:22:16,171 PAYOR MIX, WHICH IS BASICALLY 8140 04:22:16,171 --> 04:22:18,006 WHAT TYPES OF PATIENTS GET US 8141 04:22:18,006 --> 04:22:20,408 THE MOST PROFIT. 8142 04:22:20,408 --> 04:22:21,376 AND THAT DETERMINES WHERE 8143 04:22:21,376 --> 04:22:22,878 CLINICS GO AND ALL SORTS OF 8144 04:22:22,878 --> 04:22:27,082 OTHER THINGS. 8145 04:22:27,082 --> 04:22:28,750 SO I THINK WE NEED TO HAVE A 8146 04:22:28,750 --> 04:22:29,818 SOCIETAL DISCUSSION. 8147 04:22:29,818 --> 04:22:30,952 IT'S TIME TO HAVE IT. 8148 04:22:30,952 --> 04:22:32,020 ONE THING WE LEARNED FROM COVID, 8149 04:22:32,020 --> 04:22:33,555 IT'S NOT A NEW LESSON BUT IT WAS 8150 04:22:33,555 --> 04:22:37,192 VERY CLEAR THAT HAVING THE DATA 8151 04:22:37,192 --> 04:22:38,527 THAT GOT US INTO WHAT TREATMENTS 8152 04:22:38,527 --> 04:22:40,695 WERE EFFECTIVE AND COULD SAVE A 8153 04:22:40,695 --> 04:22:41,363 LOT OF LIVES. 8154 04:22:41,363 --> 04:22:43,131 WE NEED THAT FOR EVERY DISEASE 8155 04:22:43,131 --> 04:22:45,767 AND EVERY MEDICAL PROBLEM. 8156 04:22:45,767 --> 04:22:47,736 >> I JUST WANTED TO ADD ONE 8157 04:22:47,736 --> 04:22:49,471 QUICK POINT TO THIS GREAT 8158 04:22:49,471 --> 04:22:51,106 DISCUSSION AND IT RELATES TO 8159 04:22:51,106 --> 04:22:52,274 ASKING THE RIGHT QUESTIONS AND 8160 04:22:52,274 --> 04:22:53,308 OF THE RIGHT PEOPLE. 8161 04:22:53,308 --> 04:22:54,709 ONE OF THE THINGS THAT WE'VE 8162 04:22:54,709 --> 04:22:56,711 BEEN RECENTLY WORKING ON AT 8163 04:22:56,711 --> 04:22:57,946 PCORI IS SOMETHING WE'RE CALLING 8164 04:22:57,946 --> 04:23:00,615 OUR INCLUSIVE DATA STRATEGY, 8165 04:23:00,615 --> 04:23:02,017 WHICH REALLY RELATES TO THE TYPE 8166 04:23:02,017 --> 04:23:03,852 OF DEMOGRAPHIC DATA THAT'S 8167 04:23:03,852 --> 04:23:07,355 COLLECTED AROUND RESEARCH DATA. 8168 04:23:07,355 --> 04:23:09,057 THERE WERE FUNDAMENTAL QUESTIONS 8169 04:23:09,057 --> 04:23:09,691 THAT WE'RE WORKING WITH 8170 04:23:09,691 --> 04:23:10,058 STAKEHOLDERS ON. 8171 04:23:10,058 --> 04:23:12,527 YOU KNOW, BASICALLY WHO IS 8172 04:23:12,527 --> 04:23:14,062 THE -- WHO NEEDS THE DATA, AND 8173 04:23:14,062 --> 04:23:16,798 FOR WHAT REASONS, AND WHAT DATA 8174 04:23:16,798 --> 04:23:18,567 SHOULD BE COLLECTED, AND ABOUT 8175 04:23:18,567 --> 04:23:20,769 WHICH GROUPS OF PEOPLE, AND WHEN 8176 04:23:20,769 --> 04:23:22,003 SHOULD THAT DATA BE COLLECTED 8177 04:23:22,003 --> 04:23:27,008 AND HOW SHOULD THAT DATA BE 8178 04:23:27,008 --> 04:23:29,010 COLLECTED, PROTECTED AN USED AND 8179 04:23:29,010 --> 04:23:30,412 WITH WHOM SHOULD IT BE SHARED? 8180 04:23:30,412 --> 04:23:31,613 HAVING THOSE QUESTIONS 8181 04:23:31,613 --> 04:23:33,281 EXPLICITLY DISCUSSED WITH THOSE 8182 04:23:33,281 --> 04:23:35,584 THAT YOU'RE REALLY THINKING TO 8183 04:23:35,584 --> 04:23:36,985 COLLECT DATA ABOUT IS INCREDIBLY 8184 04:23:36,985 --> 04:23:37,319 INFORMATIVE. 8185 04:23:37,319 --> 04:23:40,088 SO THERE MAY BE SOMETHING 8186 04:23:40,088 --> 04:23:40,755 EXTRAPOLATABLE FROM THE WAY THAT 8187 04:23:40,755 --> 04:23:42,057 WE'RE TALKING ABOUT THIS AND 8188 04:23:42,057 --> 04:23:44,226 THINKING ABOUT THIS TYPE OF 8189 04:23:44,226 --> 04:23:45,393 STRATEGY THAT COULD BE QUITE 8190 04:23:45,393 --> 04:23:46,761 HELPFUL AS WE THINK ABOUT DATA 8191 04:23:46,761 --> 04:23:47,863 MORE BROADLY. 8192 04:23:47,863 --> 04:23:49,297 WE'RE ACTUALLY HOPING TO PUBLISH 8193 04:23:49,297 --> 04:23:50,732 THIS LANDSCAPE ANALYSIS THAT 8194 04:23:50,732 --> 04:23:51,933 WE'RE DOING IN ORDER TO BE ABLE 8195 04:23:51,933 --> 04:23:54,336 TO SHARE THAT MORE BROADLY, SO 8196 04:23:54,336 --> 04:23:57,072 THOUGHT IT WAS WORTH A MENTION 8197 04:23:57,072 --> 04:23:57,272 HERE. 8198 04:23:57,272 --> 04:23:58,974 >> MAKE SURE WE SEE THAT AT FDA 8199 04:23:58,974 --> 04:24:00,375 WHEN YOU DO IT BECAUSE WE'RE 8200 04:24:00,375 --> 04:24:01,810 GOING TO WANT TO PILE ON AND 8201 04:24:01,810 --> 04:24:02,711 SUPPORT IT. 8202 04:24:02,711 --> 04:24:04,813 IT'S WHAT I WAS ALLUDING, TO WE 8203 04:24:04,813 --> 04:24:05,780 NEED TO REALLY HAVE THE 8204 04:24:05,780 --> 04:24:11,486 DISCUSSION ABOUT THESE THINGS. 8205 04:24:11,486 --> 04:24:11,887 >> GREAT COMMENTS. 8206 04:24:11,887 --> 04:24:13,154 I LOVE THIS DISCUSSION AROUND 8207 04:24:13,154 --> 04:24:14,155 BUILDING COLLABORATIONS AND 8208 04:24:14,155 --> 04:24:15,357 INFRASTRUCTURE AND HOW WE MANAGE 8209 04:24:15,357 --> 04:24:17,192 AND COLLECT DATA. 8210 04:24:17,192 --> 04:24:19,327 WE'VE GOT ABOUT ONE MINUTE LEFT, 8211 04:24:19,327 --> 04:24:20,195 SO ONE QUICK SPEED DATING 8212 04:24:20,195 --> 04:24:20,762 QUESTIONS. 8213 04:24:20,762 --> 04:24:22,497 THERE'S LOTS OF QUESTIONS IN THE 8214 04:24:22,497 --> 04:24:23,131 CHAT, PLEASE IF YOU GET A CLANS 8215 04:24:23,131 --> 04:24:24,165 TO LOOK IN THE CHAT, I THINK 8216 04:24:24,165 --> 04:24:25,033 THERE'S SOME TERRIFIC QUESTIONS 8217 04:24:25,033 --> 04:24:26,902 IN THERE, BUT HERE'S THE QUICK 8218 04:24:26,902 --> 04:24:27,068 ONE. 8219 04:24:27,068 --> 04:24:28,370 IN THE NEXT SESSION, IT'S REALLY 8220 04:24:28,370 --> 04:24:30,739 GOING TO BE ABOUT ACTIONABLE 8221 04:24:30,739 --> 04:24:31,172 SOLUTIONS. 8222 04:24:31,172 --> 04:24:32,841 I'D LIKE TO ASK EACH OF YOU TO 8223 04:24:32,841 --> 04:24:34,142 PROVIDE ONE RECOMMENDATION FOR A 8224 04:24:34,142 --> 04:24:35,377 SYSTEM-LEVEL ACTION THAT CAN 8225 04:24:35,377 --> 04:24:37,579 DRIVE CHANGE TO REALLY IMPROVE A 8226 04:24:37,579 --> 04:24:38,947 DIVERSE AND INCLUSIVE 8227 04:24:38,947 --> 04:24:39,915 REPRESENTATION IN CLINICAL 8228 04:24:39,915 --> 04:24:40,548 TRIALS. 8229 04:24:40,548 --> 04:24:41,349 SO ONE RECOMMENDATION. 8230 04:24:41,349 --> 04:24:43,018 QUICK SPEED DATING ROUND. 8231 04:24:43,018 --> 04:24:50,892 SO WHO WANTS TO GO FIRST? 8232 04:24:50,892 --> 04:24:51,126 OKAY. 8233 04:24:51,126 --> 04:24:52,327 I'M GOING TO START CALLING ON 8234 04:24:52,327 --> 04:24:53,862 PEOPLE. 8235 04:24:53,862 --> 04:24:54,729 SO JENNY. 8236 04:24:54,729 --> 04:24:56,064 WHY DON'T YOU JUMP IN. 8237 04:24:56,064 --> 04:24:58,934 OH, SORRY. 8238 04:24:58,934 --> 04:25:03,405 >> YES. 8239 04:25:03,405 --> 04:25:06,675 SO CREATE INCENTIVES FOR 8240 04:25:06,675 --> 04:25:09,144 UNIVERSITIES LIKE VAN DE, CASE 8241 04:25:09,144 --> 04:25:10,011 WESTERN, CLEVELAND CLINIC TO 8242 04:25:10,011 --> 04:25:12,747 WORK WITHIN THEIR COMMUNITIES 8243 04:25:12,747 --> 04:25:18,453 AND HELP CREATE THOSE COMMUNITY 8244 04:25:18,453 --> 04:25:20,121 INTERFACES THAT WILL ALLOW FOR 8245 04:25:20,121 --> 04:25:21,756 MORE COMMUNITY INVOLVEMENT. 8246 04:25:21,756 --> 04:25:24,926 VANDY IS ALREADY DOING IT, CASE 8247 04:25:24,926 --> 04:25:26,261 WESTERN IS ALREADY DOING IT. 8248 04:25:26,261 --> 04:25:28,229 HOW CAN WE INCENTIVIZE MORE OF 8249 04:25:28,229 --> 04:25:31,299 THESE HUBS, CLINICAL RESEARCH 8250 04:25:31,299 --> 04:25:33,501 HUBS. 8251 04:25:33,501 --> 04:25:34,002 FOCUSED ON DIVERSITY. 8252 04:25:34,002 --> 04:25:34,602 THANK YOU. 8253 04:25:34,602 --> 04:25:35,437 >> WONDERFUL. 8254 04:25:35,437 --> 04:25:36,237 THANK YOU. 8255 04:25:36,237 --> 04:25:38,406 PETER, PLEASE. 8256 04:25:38,406 --> 04:25:39,607 >> GOSH, THERE'S SO MANY. 8257 04:25:39,607 --> 04:25:40,842 IT'S SO HARD TO CHOOSE. 8258 04:25:40,842 --> 04:25:46,181 I'LL JUST MENTION ONE WHICH IS 8259 04:25:46,181 --> 04:25:51,252 WE HAVE TO ACHIEVE CONSISTENCY 8260 04:25:51,252 --> 04:25:51,920 AND THE LIKE IN TERMS OF HOW IT 8261 04:25:51,920 --> 04:25:54,556 IS WE'RE COLLECTING DATA ON THE 8262 04:25:54,556 --> 04:25:57,425 FRONT END, PARTICULARLY AROUND 8263 04:25:57,425 --> 04:25:58,293 ISSUES THAT ARE RELEVANT TO 8264 04:25:58,293 --> 04:25:59,494 OVERCOMING DISPARITIES AND 8265 04:25:59,494 --> 04:26:03,331 ACHIEVING HEALTH EQUITY, WE HAVE 8266 04:26:03,331 --> 04:26:07,602 A LOT OF DIFFERENT WAYS WE 8267 04:26:07,602 --> 04:26:09,137 INTERPRET WHAT IT IS WE'RE 8268 04:26:09,137 --> 04:26:10,872 SUPPOSED TO BE DOING RIGHT NOW. 8269 04:26:10,872 --> 04:26:13,241 I WOULD GO AS UPSTREAMS AS WE 8270 04:26:13,241 --> 04:26:15,310 CAN TO ALIGN STANDARDS TO DO 8271 04:26:15,310 --> 04:26:16,945 THAT IN WAY THAT WILL HELP US 8272 04:26:16,945 --> 04:26:18,246 MAKE SENSE OF OUR DATA AND USE 8273 04:26:18,246 --> 04:26:18,546 IT FOR GOOD. 8274 04:26:18,546 --> 04:26:19,914 >> I LOVE THAT. 8275 04:26:19,914 --> 04:26:20,515 BRITTANY, ONE RECOMMENDATION, 8276 04:26:20,515 --> 04:26:20,749 PLEASE. 8277 04:26:20,749 --> 04:26:22,450 >> I WOULD SAY REALLY JUST 8278 04:26:22,450 --> 04:26:22,784 TRANSPARENCY. 8279 04:26:22,784 --> 04:26:23,351 THERE ARE ORGANIZATIONS AND 8280 04:26:23,351 --> 04:26:24,219 COMPANIES THAT ARE DOING THINGS 8281 04:26:24,219 --> 04:26:25,887 REALLY WELL AND I THINK SHARING 8282 04:26:25,887 --> 04:26:28,323 WITH OTHERS HOW THEY CAN HELP IN 8283 04:26:28,323 --> 04:26:29,290 THE ORGANIZATION IS GREAT, 8284 04:26:29,290 --> 04:26:30,258 SHARING OUR CHALLENGES, 8285 04:26:30,258 --> 04:26:32,127 OPPORTUNITIES, I THINK WILL HELP 8286 04:26:32,127 --> 04:26:32,861 THE INDUSTRY OVERALL. 8287 04:26:32,861 --> 04:26:37,632 >> TERRIFIC. 8288 04:26:37,632 --> 04:26:37,866 NAKELA? 8289 04:26:37,866 --> 04:26:39,167 >> BROADENING THE CONCEPT OF 8290 04:26:39,167 --> 04:26:40,502 WHAT YOU THINK ABOUT IN A 8291 04:26:40,502 --> 04:26:41,169 RESEARCH TEAM. 8292 04:26:41,169 --> 04:26:42,804 AND TO REALLY THINK ABOUT THE 8293 04:26:42,804 --> 04:26:44,472 WORKFORCE AND THE RESEARCH TEAM 8294 04:26:44,472 --> 04:26:46,241 MUCH MORE BROADLY THAN WE HAVE 8295 04:26:46,241 --> 04:26:47,609 IN THE PAST, INCLUDING THINKING 8296 04:26:47,609 --> 04:26:49,744 ABOUT HOW WE MOVE RESEARCH FROM 8297 04:26:49,744 --> 04:26:52,247 THE ACADEMIC INSTITUTIONS INTO 8298 04:26:52,247 --> 04:26:53,048 COMMUNITIES AND REALLY 8299 04:26:53,048 --> 04:26:54,582 RECOGNIZING THAT COMMUNITIES RB 8300 04:26:54,582 --> 04:26:58,119 A PIAREA PIECE OF THAT RESEARCHI 8301 04:26:58,119 --> 04:26:59,320 THINK THAT ACTUALLY MAKES THAT 8302 04:26:59,320 --> 04:27:00,188 CONNECTION INTO THE COMMUNITIES 8303 04:27:00,188 --> 04:27:01,723 THAT WE'RE REALLY TRYING TO 8304 04:27:01,723 --> 04:27:04,626 INCLUDE IN THE CLINICAL TRIAL 8305 04:27:04,626 --> 04:27:04,926 ENTERPRISE. 8306 04:27:04,926 --> 04:27:05,927 >> FANTASTIC. 8307 04:27:05,927 --> 04:27:08,430 ROB, BRING US HOME. 8308 04:27:08,430 --> 04:27:10,298 LAST WORD HERE. 8309 04:27:10,298 --> 04:27:11,866 >> SOMETHING PROVOCATIVE AT THE 8310 04:27:11,866 --> 04:27:12,934 END, IF I WERE KING, WHICH I 8311 04:27:12,934 --> 04:27:14,169 WILL NEVER BE, WHAT I WOULD DO 8312 04:27:14,169 --> 04:27:17,906 IS TO TAKE OUR INSURERS, BOTH 8313 04:27:17,906 --> 04:27:19,674 PRIVATE AND -- ALLOCATE SOME 8314 04:27:19,674 --> 04:27:21,276 AMOUNT LIKE A HALF A PERCENT, 8315 04:27:21,276 --> 04:27:23,745 THIS IS NOT A NEW IDEA, OR 1% 8316 04:27:23,745 --> 04:27:25,580 INTO THE RESEARCH ENTERPRISE, 8317 04:27:25,580 --> 04:27:28,116 CALL IT LEARNING INSTEAD OF 8318 04:27:28,116 --> 04:27:29,484 RESEARCH, REQUIRE THAT IT BE 8319 04:27:29,484 --> 04:27:33,188 DISTRIBUTED TO WHERE IT'S 8320 04:27:33,188 --> 04:27:34,289 NEEDED, PROPORTIONATELY TO THE 8321 04:27:34,289 --> 04:27:37,959 COMMUNITY, AND TO THE RESEARCH 8322 04:27:37,959 --> 04:27:39,828 CENTERS AND CLINICIANS WHO NEED 8323 04:27:39,828 --> 04:27:43,731 TO OVERSEE HIGH RISK RESEARCH, 8324 04:27:43,731 --> 04:27:47,702 WHERE PATIENTS ARE INVOLVED. 8325 04:27:47,702 --> 04:27:51,005 AND THAT THE FINDINGS OF THAT 8326 04:27:51,005 --> 04:27:52,440 RESEARCH BE RETURNED BACK TO 8327 04:27:52,440 --> 04:27:54,609 STOP DOING THINGS IN OUR 8328 04:27:54,609 --> 04:27:56,044 HEALTHCARE SYSTEMS THAT DON'T 8329 04:27:56,044 --> 04:27:56,644 WORK AND FOCUS ON THE THINGS 8330 04:27:56,644 --> 04:27:57,712 THAT ACTUALLY MAKE A DIFFERENCE. 8331 04:27:57,712 --> 04:27:58,146 VERY SIMPLE. 8332 04:27:58,146 --> 04:27:59,147 I'M SURE IT COULD HAPPEN 8333 04:27:59,147 --> 04:28:00,415 TOMORROW. 8334 04:28:00,415 --> 04:28:01,883 >> FOCUS ON THE THINGS THAT CAN 8335 04:28:01,883 --> 04:28:02,484 MAKE A DIFFERENCE. 8336 04:28:02,484 --> 04:28:03,017 VERY GOOD. 8337 04:28:03,017 --> 04:28:05,220 THOSE ARE GREAT PARTING WORDS. 8338 04:28:05,220 --> 04:28:06,554 THANK YOU TO THE WHOLE PANEL FOR 8339 04:28:06,554 --> 04:28:07,522 YOUR PARTICIPATION TODAY. 8340 04:28:07,522 --> 04:28:08,857 THANKS FOR ALL THE GREAT 8341 04:28:08,857 --> 04:28:10,959 QUESTIONS FROM THE AUDIENCE. 8342 04:28:10,959 --> 04:28:11,826 VANESSA AND GINA, I'M GOING TO 8343 04:28:11,826 --> 04:28:14,028 TURN IT BACK OVER TO YOU BUT 8344 04:28:14,028 --> 04:28:14,796 THANKS FOR A GREAT SESSION. 8345 04:28:14,796 --> 04:28:15,730 THANK YOU ALL. 8346 04:28:15,730 --> 04:28:18,099 THANK YOU. 8347 04:28:18,099 --> 04:28:19,300 YES, THANK YOU, EVERYONE. 8348 04:28:19,300 --> 04:28:23,571 NOW WE'RE GOING TO HAVE A 8349 04:28:23,571 --> 04:28:24,873 10-MINUTE BREAK AND COME BACK. 8350 04:28:24,873 --> 04:28:31,062 THANK YOU. 8351 04:28:31,217 --> 04:28:31,617 HI, WELCOME BACK. 8352 04:28:31,617 --> 04:28:32,018 EVERYONE. 8353 04:28:32,018 --> 04:28:34,654 THIS IS OUR NEXT SESSION, WHICH 8354 04:28:34,654 --> 04:28:36,956 IS SESSION 6. 8355 04:28:36,956 --> 04:28:39,058 AND SO OVERALL, THE LAST TWO 8356 04:28:39,058 --> 04:28:40,359 DAYS, WE'VE HAD A GREAT 8357 04:28:40,359 --> 04:28:42,495 DISCUSSION ABOUT HOW TO IMPROVE 8358 04:28:42,495 --> 04:28:44,664 IMPLEMENTATION OF EVIDENCE-BASED 8359 04:28:44,664 --> 04:28:46,966 BEST PRACTICES TO INCREASE 8360 04:28:46,966 --> 04:28:48,501 INCLUSIVE PARTICIPATION IN 8361 04:28:48,501 --> 04:28:50,069 CLINICAL RESEARCH ACTIVITIES 8362 04:28:50,069 --> 04:28:52,238 THAT TAKE PLACE BEFORE THE 8363 04:28:52,238 --> 04:28:53,439 STUDY, DURING THE STUDY, AND 8364 04:28:53,439 --> 04:28:56,809 AFTER THE STUDY. 8365 04:28:56,809 --> 04:28:58,511 OUR PARTICIPANTS, SPEAKERS, 8366 04:28:58,511 --> 04:28:59,812 PANELISTS AND MODERATORS HAVE 8367 04:28:59,812 --> 04:29:01,914 SHARED THEIR GREAT EXPERTISE AND 8368 04:29:01,914 --> 04:29:04,684 INSIGHTS REGARDING INCLUSIVE 8369 04:29:04,684 --> 04:29:07,086 PARTICIPATION IN CLINICAL 8370 04:29:07,086 --> 04:29:07,353 RESEARCH. 8371 04:29:07,353 --> 04:29:07,653 >> YES. 8372 04:29:07,653 --> 04:29:10,022 AND SO THIS SESSION, AND WE'RE 8373 04:29:10,022 --> 04:29:13,159 GOING TO BE MOVING STRAIGHT TO 8374 04:29:13,159 --> 04:29:14,694 THE DISCUSSION PART, THIS IS FOR 8375 04:29:14,694 --> 04:29:16,228 ALL PARTICIPANTS TO BE ABLE TO 8376 04:29:16,228 --> 04:29:19,098 CONTINUE THE DISCUSSIONS FROM 8377 04:29:19,098 --> 04:29:20,433 YESTERDAY AND EARLIER TODAY. 8378 04:29:20,433 --> 04:29:24,170 THIS IS YOUR OPPORTUNITY TO ASK 8379 04:29:24,170 --> 04:29:25,671 ANY FOLLOW-UP QUESTIONS FOR 8380 04:29:25,671 --> 04:29:27,006 SPEAKERS OR PANELISTS. 8381 04:29:27,006 --> 04:29:28,908 I THINK FOR EVERY SESSION, WE 8382 04:29:28,908 --> 04:29:29,675 DIDN'T GET TO ALL OF THE 8383 04:29:29,675 --> 04:29:30,543 QUESTIONS IN THE CHAT, AND THIS 8384 04:29:30,543 --> 04:29:32,445 IS ALSO THE OPPORTUNITY FOR YOU 8385 04:29:32,445 --> 04:29:34,847 TO OFFER YOUR OWN KNOWLEDGE AND 8386 04:29:34,847 --> 04:29:37,450 YOUR OWN PERSPECTIVES BECAUSE WE 8387 04:29:37,450 --> 04:29:38,884 KNOW THERE'S A WEALTH OF 8388 04:29:38,884 --> 04:29:40,353 KNOWLEDGE AMONG EVERYONE HERE 8389 04:29:40,353 --> 04:29:41,554 NOT JUST THE PEOPLE WHO WERE 8390 04:29:41,554 --> 04:29:44,590 SPEAKERS OR PANELISTS. 8391 04:29:44,590 --> 04:29:46,826 SO AS BEFORE, THERE ARE A COUPLE 8392 04:29:46,826 --> 04:29:48,894 OF WAYS THAT YOU CAN 8393 04:29:48,894 --> 04:29:49,462 PARTICIPATE. 8394 04:29:49,462 --> 04:29:50,763 FOR THIS SESSION, WE'D REALLY 8395 04:29:50,763 --> 04:29:53,899 LIKE TO BE AS INTERACTIVE AS 8396 04:29:53,899 --> 04:29:54,967 POSSIBLE, SOG WE VERY MUCH 8397 04:29:54,967 --> 04:29:58,471 ENCOURAGE YOU TO COME ON VIDEO 8398 04:29:58,471 --> 04:30:01,874 AND SPEAK VERBALLY, GIVE ANY 8399 04:30:01,874 --> 04:30:05,177 COMMENTS, THOUGHTS, QUESTIONS, 8400 04:30:05,177 --> 04:30:06,379 YOU CAN ALSO PUT COMMENTS OR 8401 04:30:06,379 --> 04:30:08,581 QUESTIONS IN THE CHAT, SUBMIT TO 8402 04:30:08,581 --> 04:30:10,850 THE EMAIL ADDRESS, AND IF YOU'RE 8403 04:30:10,850 --> 04:30:12,685 WATCHING ON VIDEOCAST, YOU CAN 8404 04:30:12,685 --> 04:30:17,923 USE THE LIVE FEEDBACK BUTTON. 8405 04:30:17,923 --> 04:30:20,393 SO I WILL POSE A QUESTION TO GET 8406 04:30:20,393 --> 04:30:22,862 US STARTED, AND SO -- OKAY, SO 8407 04:30:22,862 --> 04:30:25,865 IN DESIGNING THIS WORKSHOP, 8408 04:30:25,865 --> 04:30:27,299 VANESSA AND I AND THE PLANNING 8409 04:30:27,299 --> 04:30:28,501 COMMITTEE, WE WORKED VERY HARD 8410 04:30:28,501 --> 04:30:33,439 TO TRY TO ADDRESS AS MANY TOPICS 8411 04:30:33,439 --> 04:30:36,842 AS POSSIBLE, BUT WE KNOW WE HAD 8412 04:30:36,842 --> 04:30:38,277 IT FINITE AMOUNT OF TIME SO WE 8413 04:30:38,277 --> 04:30:40,045 WEREN'T ABLE TO GET TO 8414 04:30:40,045 --> 04:30:41,046 EVERYTHING. 8415 04:30:41,046 --> 04:30:42,515 SO I'D LOVE TO HEAR FROM YOU ALL 8416 04:30:42,515 --> 04:30:43,816 IF YOU FEEL THERE WERE TOPICS 8417 04:30:43,816 --> 04:30:45,217 NOT TOUCHED ON DURING THIS 8418 04:30:45,217 --> 04:30:46,552 WORKSHOP THAT DO NEED TO BE 8419 04:30:46,552 --> 04:30:48,287 ADDRESSED TO PROMOTE INCLUSIVE 8420 04:30:48,287 --> 04:30:50,956 PARTICIPATION IN CLINICAL 8421 04:30:50,956 --> 04:30:54,860 RESEARCH. 8422 04:30:54,860 --> 04:30:57,229 MONICA, WOULD YOU LIKE TO SPEAK? 8423 04:30:57,229 --> 04:31:00,266 >> HI. 8424 04:31:00,266 --> 04:31:01,534 THE ONLY SUGGESTION I MADE IN 8425 04:31:01,534 --> 04:31:05,905 ONE OF THE EARLIER SESSIONS WAS 8426 04:31:05,905 --> 04:31:07,673 IN ATTENDANCE TO NUMBER OF 8427 04:31:07,673 --> 04:31:08,774 DIFFERENT SYMPOSIUMS WHERE THE 8428 04:31:08,774 --> 04:31:11,177 IMPORTANCE OF FAITH-BASED 8429 04:31:11,177 --> 04:31:14,447 LEADERS AND FAITH-BASED 8430 04:31:14,447 --> 04:31:17,283 COMMUNITIES IN PARTNERING INTO 8431 04:31:17,283 --> 04:31:19,018 MANY DIVERSE COMMUNITIES, THAT 8432 04:31:19,018 --> 04:31:22,254 THERE'S OFTEN BEEN A LOT OF 8433 04:31:22,254 --> 04:31:23,923 REPRESENTATION OF PROTESTANT 8434 04:31:23,923 --> 04:31:27,827 CHRISTIAN BLACK PASTORS AND 8435 04:31:27,827 --> 04:31:29,495 LEADERS, AND I ALSO WANTED TO 8436 04:31:29,495 --> 04:31:32,798 ENCOURAGE OUTREACH TOWARDS BLACK 8437 04:31:32,798 --> 04:31:35,634 CATHOLIC AND BLACK MUSLIM 8438 04:31:35,634 --> 04:31:36,268 FAITH-BASED COMMUNITIES AS WELL 8439 04:31:36,268 --> 04:31:38,871 BECAUSE THERE ARE NUANCES IN HOW 8440 04:31:38,871 --> 04:31:39,438 THOSE DIFFERENT COMMUNITIES 8441 04:31:39,438 --> 04:31:43,676 RESPOND TO RESEARCH, AND RESPOND 8442 04:31:43,676 --> 04:31:46,445 TO THE SENSE OF COMMUNITY. 8443 04:31:46,445 --> 04:31:47,947 SO THAT WAS THE ONLY SUGGESTION 8444 04:31:47,947 --> 04:31:50,382 I WOULD MAKE. 8445 04:31:50,382 --> 04:31:51,484 >> THANK YOU. 8446 04:31:51,484 --> 04:31:53,419 I REMEMBER SEEING THAT COMMENT, 8447 04:31:53,419 --> 04:31:55,754 THAT'S SUCH A GOOD POINT THAT I 8448 04:31:55,754 --> 04:31:57,823 FEEL LIKE CHRISTIANITY IS KIND 8449 04:31:57,823 --> 04:31:59,592 OF THE DOMINANT RELIGION IN THE 8450 04:31:59,592 --> 04:32:03,062 UNITED STATES BUT THERE IS MANY 8451 04:32:03,062 --> 04:32:09,902 RELIGIOUS TRADITIONS AND -- TO 8452 04:32:09,902 --> 04:32:10,336 CONNECT WITH FOLKS. 8453 04:32:10,336 --> 04:32:12,171 >> IN PARTICULAR WITH THE BLACK 8454 04:32:12,171 --> 04:32:13,706 COMMUNITY, I THINK, HAVING LIVED 8455 04:32:13,706 --> 04:32:15,274 BOTH IN THE SOUTH AND NORTH 8456 04:32:15,274 --> 04:32:17,343 CAROLINA AND IN THE NORTH IN 8457 04:32:17,343 --> 04:32:21,514 NEW YORK, THERE'S A STRONG BLACK 8458 04:32:21,514 --> 04:32:22,915 CATHOLIC SERVICE SENSIBILITY AND 8459 04:32:22,915 --> 04:32:25,818 OBVIOUSLY THERE'S A STRONG BLACK 8460 04:32:25,818 --> 04:32:29,655 MUSLIM FAITH-BASED COMMUNITY AS 8461 04:32:29,655 --> 04:32:31,657 WELL. 8462 04:32:31,657 --> 04:32:33,826 INTEGRATING THOSE INTO ACTIVISM 8463 04:32:33,826 --> 04:32:38,197 AROUND RESEARCH WOULD BE GREAT. 8464 04:32:38,197 --> 04:32:47,106 >> THANK YOU. 8465 04:32:47,106 --> 04:32:49,408 A POPULATION WE DIDN'T TOUCH ON 8466 04:32:49,408 --> 04:32:50,509 THAT COULD BE IMPORTANT TO 8467 04:32:50,509 --> 04:32:58,050 HIGHLIGHT? 8468 04:32:58,050 --> 04:32:59,952 IF YOU'RE A MODERATOR, FEEL FREE 8469 04:32:59,952 --> 04:33:00,753 TO PARTICIPATE. 8470 04:33:00,753 --> 04:33:02,054 OH, WONDERFUL! 8471 04:33:02,054 --> 04:33:03,722 BEVERLY, TAKE IT AWAY. 8472 04:33:03,722 --> 04:33:05,491 >> HI. 8473 04:33:05,491 --> 04:33:06,825 I'M HAPPY TO BE IN THIS SPACE 8474 04:33:06,825 --> 04:33:08,127 WITH YOU ALL. 8475 04:33:08,127 --> 04:33:09,929 SO I'M A REPRODUCTIVE BIOLOGIST 8476 04:33:09,929 --> 04:33:12,431 AS WELL AS A DEI PRACTITIONER, 8477 04:33:12,431 --> 04:33:13,432 AND I THINK ONE OF THE CONCERNS 8478 04:33:13,432 --> 04:33:15,701 I HAD FOR THESE LAST TWO DAYS 8479 04:33:15,701 --> 04:33:17,636 WAS THERE'S KIND OF A LOT OF 8480 04:33:17,636 --> 04:33:19,171 EMPHASIS ON TEACHING PEOPLE WHO 8481 04:33:19,171 --> 04:33:22,141 SEEM TO BE NOT ENGAGED OUTSIDE 8482 04:33:22,141 --> 04:33:26,145 OF ACADEMIA TO INFILTRATE OUR 8483 04:33:26,145 --> 04:33:26,979 COMMUNITIES. 8484 04:33:26,979 --> 04:33:29,214 I DIDN'T SEE A LOT OF EMPHASIS 8485 04:33:29,214 --> 04:33:33,218 ON THE EFFORTS TO MAKE SURE THAT 8486 04:33:33,218 --> 04:33:34,486 BLACK AND BROWN FOLKS AND THOSE 8487 04:33:34,486 --> 04:33:35,487 FROM OTHER MARGINALIZED 8488 04:33:35,487 --> 04:33:37,990 COMMUNITIES WERE PIs. 8489 04:33:37,990 --> 04:33:41,961 AND I FEEL LIKE THAT IS AN 8490 04:33:41,961 --> 04:33:44,296 IMBALANCE IN HOW THIS IS BEING 8491 04:33:44,296 --> 04:33:44,597 DISCUSSED. 8492 04:33:44,597 --> 04:33:46,165 WE HAVE TO TEACH OTHER PEOPLE 8493 04:33:46,165 --> 04:33:47,466 WHO ARE NOT A PART OF OUR 8494 04:33:47,466 --> 04:33:49,068 COMMUNITY TO BUILD TRUST WITH 8495 04:33:49,068 --> 04:33:49,802 OUR COMMUNITY. 8496 04:33:49,802 --> 04:33:51,236 PERHAPS AN EMPHASIS ON MAKING 8497 04:33:51,236 --> 04:33:53,439 SURE THAT WE'RE LEADING THE WORK 8498 04:33:53,439 --> 04:33:55,207 BECAUSE EVEN IF YOU DO ALL OF 8499 04:33:55,207 --> 04:33:57,343 THIS WORK TO COME INTO THE 8500 04:33:57,343 --> 04:33:58,611 COMMUNITY TO RECRUIT PEOPLE FOR 8501 04:33:58,611 --> 04:34:03,983 THEIR PROJECT, YOU KIND OF -- 8502 04:34:03,983 --> 04:34:05,551 AFTER YOU GET WHAT YOU NEEDED SO 8503 04:34:05,551 --> 04:34:08,721 WE'RE PRE PE TWAITING A CYCLE OF 8504 04:34:08,721 --> 04:34:09,922 PILLAGING, AND I THINK THAT 8505 04:34:09,922 --> 04:34:11,523 SHIFTS A BIT WHEN THE PI 8506 04:34:11,523 --> 04:34:13,726 REPRESENTS THE COMMUNITY. 8507 04:34:13,726 --> 04:34:15,561 AND SO I'M HOPING THAT IN THE 8508 04:34:15,561 --> 04:34:18,931 FUTURE, THERE'S A BALANCED 8509 04:34:18,931 --> 04:34:21,233 CONVERSATION AROUND RECRUITING 8510 04:34:21,233 --> 04:34:21,867 AND EDUCATING. 8511 04:34:21,867 --> 04:34:24,303 PEOPLE COME FROM THESE 8512 04:34:24,303 --> 04:34:25,504 COMMUNITIES TO LEAD THIS WORK 8513 04:34:25,504 --> 04:34:27,039 BECAUSE THEY'RE INVESTED IN 8514 04:34:27,039 --> 04:34:27,840 STAYING IN THOSE COMMUNITIES AND 8515 04:34:27,840 --> 04:34:31,910 NOT PEOPLE WHO MAY BE DOING THIS 8516 04:34:31,910 --> 04:34:32,544 SIMPLY BECAUSE THERE'S A 8517 04:34:32,544 --> 04:34:34,380 REQUIREMENT TO DIVERSIFY THEIR 8518 04:34:34,380 --> 04:34:34,647 RESEARCH. 8519 04:34:34,647 --> 04:34:36,782 >> YEAH, DEFINITELY. 8520 04:34:36,782 --> 04:34:39,418 VERY IMPORTANT POINT. 8521 04:34:39,418 --> 04:34:42,254 AND I THINK WE'D EVEN TALKED 8522 04:34:42,254 --> 04:34:44,056 ABOUT HAVING A SPECIFIC TALK ON 8523 04:34:44,056 --> 04:34:45,257 THIS IN THE WORKSHOP AND THEN, 8524 04:34:45,257 --> 04:34:47,359 YOU KNOW, THERE ARE SO MANY 8525 04:34:47,359 --> 04:34:48,227 OTHER TOPICS. 8526 04:34:48,227 --> 04:34:50,062 I WILL PIGGY BACK OFF THAT AND 8527 04:34:50,062 --> 04:34:52,631 JUST GIVE A SHOUT OUT FOR THE 8528 04:34:52,631 --> 04:34:55,501 FIRST PROGRAM THROUGH THE COMMON 8529 04:34:55,501 --> 04:34:58,303 FUND IS A PROGRAM TO INCREASE 8530 04:34:58,303 --> 04:35:01,340 THE DIVERSITY OF THE BIOMEDICAL 8531 04:35:01,340 --> 04:35:03,542 RESEARCH WORKFORCE, FIRST 8532 04:35:03,542 --> 04:35:04,743 FACULTY INSTITUTIONAL 8533 04:35:04,743 --> 04:35:08,847 RECRUITMENT FOR SUSTAINABLE 8534 04:35:08,847 --> 04:35:09,548 TRANSFORMATION. 8535 04:35:09,548 --> 04:35:11,150 THERE'S ACTUALLY -- WE'RE NOT 8536 04:35:11,150 --> 04:35:13,318 TAKING APPLICATIONS ANYMORE, 8537 04:35:13,318 --> 04:35:14,953 SO -- BUT IT'S A -- ANYWAY, 8538 04:35:14,953 --> 04:35:17,556 THAT'S AN EXAMPLE OF AN EFFORT 8539 04:35:17,556 --> 04:35:20,959 THAT'S HAPPENING TO ADDRESS, 8540 04:35:20,959 --> 04:35:25,097 YEAH, DEFINITELY AN IMPORTANT 8541 04:35:25,097 --> 04:35:27,566 FACTOR. 8542 04:35:27,566 --> 04:35:28,467 HAVE PEOPLE WHO CAN LOOK LIKE 8543 04:35:28,467 --> 04:35:30,002 THE COMMUNITIES THAT THEY'RE 8544 04:35:30,002 --> 04:35:40,145 SERVING. 8545 04:35:41,246 --> 04:35:44,416 >> SO I WOULD LIKE TO JUST 8546 04:35:44,416 --> 04:35:47,119 CONTINUE FROM EARLIER TODAY, 8547 04:35:47,119 --> 04:35:48,554 LIKE A FURTHER DISCUSSION ON IF 8548 04:35:48,554 --> 04:35:50,723 WE CAN PROVIDE SOME MORE 8549 04:35:50,723 --> 04:35:53,425 ACTIONABLE SOLUTIONS FOR SYSTEM 8550 04:35:53,425 --> 04:35:54,460 LEVEL ACTIONS TO DRIVE THE 8551 04:35:54,460 --> 04:35:56,829 CHANGE FOR THE BROAD SCALE TO 8552 04:35:56,829 --> 04:35:58,664 IMPROVE OUR DIVERSITY, EQUITY, 8553 04:35:58,664 --> 04:36:01,366 INCLUSION AND ACCESSIBILITY FOR 8554 04:36:01,366 --> 04:36:01,900 REPRESENTATION OF CLINICAL 8555 04:36:01,900 --> 04:36:02,134 TRIALS. 8556 04:36:02,134 --> 04:36:04,737 JUST SEEING IF ANYONE OF OUR 8557 04:36:04,737 --> 04:36:06,538 PARTICIPANTS HAD ANY ADDITIONAL 8558 04:36:06,538 --> 04:36:16,949 COMMENTS OR SUGGESTIONS. 8559 04:36:19,785 --> 04:36:30,162 >> ANY OF THE MODERATORS? 8560 04:36:41,774 --> 04:36:45,778 >> WE DO HAVE A COMMENT IN THE 8561 04:36:45,778 --> 04:36:53,318 CHAT, AND ERIC RUBENSTEIN? 8562 04:36:53,318 --> 04:36:55,053 >> I'LL UNMUTE MYSELF. 8563 04:36:55,053 --> 04:36:56,121 I'M ACTUALLY ON VACATION. 8564 04:36:56,121 --> 04:36:57,422 BUT I JUST WANTED TO COMMENT ON 8565 04:36:57,422 --> 04:37:00,125 THIS BECAUSE I REALLY ABSOLUTELY 8566 04:37:00,125 --> 04:37:02,027 AGREE WITH WHAT THE MODERATOR 8567 04:37:02,027 --> 04:37:02,628 SAID. 8568 04:37:02,628 --> 04:37:05,497 WE NEED MORE DIVERSE 8569 04:37:05,497 --> 04:37:06,031 REPRESENTATION AS FAR AS 8570 04:37:06,031 --> 04:37:06,932 PHYSICIAN INVESTIGATORS. 8571 04:37:06,932 --> 04:37:10,235 BUT I ALSO FEEL THAT SOMETIMES 8572 04:37:10,235 --> 04:37:13,739 THERE IS A BIT TOO MUCH OF 8573 04:37:13,739 --> 04:37:15,174 SEGREGATION, AS IF, YOU KNOW, 8574 04:37:15,174 --> 04:37:18,544 BLACK INVESTIGATORS NEED TO 8575 04:37:18,544 --> 04:37:19,144 INVESTIGATE -- TO CONDUCT 8576 04:37:19,144 --> 04:37:20,412 STUDIES IN BLACK COMMUNITIES OR 8577 04:37:20,412 --> 04:37:21,113 VICE VERSA. 8578 04:37:21,113 --> 04:37:23,448 I FEEL LIKE THERE SHOULD BE MORE 8579 04:37:23,448 --> 04:37:24,049 COLLABORATION SORT OF ACROSS 8580 04:37:24,049 --> 04:37:30,589 COMMUNITIES. 8581 04:37:30,589 --> 04:37:32,224 >> THANK YOU. 8582 04:37:32,224 --> 04:37:34,393 >> THANK YOU. 8583 04:37:34,393 --> 04:37:37,129 DEFINITELY A GOOD POINT. 8584 04:37:37,129 --> 04:37:38,597 I'VE HEARD BEFORE RESEARCHERS 8585 04:37:38,597 --> 04:37:40,699 FEELING LIKE IF THEY'RE A PERSON 8586 04:37:40,699 --> 04:37:42,100 OF COLOR THAT THEY HAVE TO DO 8587 04:37:42,100 --> 04:37:44,670 RESEARCH IN THAT -- IN HEALTH 8588 04:37:44,670 --> 04:37:46,104 DISPARITIES, FOR EXAMPLE. 8589 04:37:46,104 --> 04:37:48,307 SO YEAH, DEFINITELY IT'S 8590 04:37:48,307 --> 04:37:49,274 SOMETHING TO KEEP IN MIND. 8591 04:37:49,274 --> 04:37:51,677 WE HAVE A COMMENT FROM THE 8592 04:37:51,677 --> 04:37:53,846 VIDEOCAST THAT I THINK I WILL 8593 04:37:53,846 --> 04:37:59,618 JUST SHARE FROM EUGINA BROOKS. 8594 04:37:59,618 --> 04:38:01,019 RESEARCH DOES NOT HAVE A GOOD 8595 04:38:01,019 --> 04:38:01,987 REPUTATION IN COMMUNITIES OF 8596 04:38:01,987 --> 04:38:02,955 COLOR IN GENERAL. 8597 04:38:02,955 --> 04:38:04,823 ESPECIALLY THE BLACK 8598 04:38:04,823 --> 04:38:05,123 COMMUNITIES. 8599 04:38:05,123 --> 04:38:07,092 THE ATTITUDE ON INCLUSION WITHIN 8600 04:38:07,092 --> 04:38:08,393 THE MEDICAL COMMUNITY ONLY 8601 04:38:08,393 --> 04:38:09,828 REINFORCES THE ISSUE. 8602 04:38:09,828 --> 04:38:10,696 YEAH, DEFINITELY GOOD POINT. 8603 04:38:10,696 --> 04:38:14,800 THERE'S A LOT OF HISTORY OF -- 8604 04:38:14,800 --> 04:38:17,402 AND PRESENT, YOU KNOW, REASONS 8605 04:38:17,402 --> 04:38:20,138 FOR DISTRUST AND MISTRUST. 8606 04:38:20,138 --> 04:38:29,047 THAT WE NEED TO ADDRESS. 8607 04:38:29,047 --> 04:38:31,550 WE HAVE A QUESTION FROM THE 8608 04:38:31,550 --> 04:38:39,925 VIDEOCAST. 8609 04:38:39,925 --> 04:38:41,693 NICOLETTE, I DO NOT KNOW HOW TO 8610 04:38:41,693 --> 04:38:42,995 PRONOUNCE THE LAST NAME, I 8611 04:38:42,995 --> 04:38:45,564 SHOULDN'T HAVE DECIDED TO READ 8612 04:38:45,564 --> 04:38:45,931 PEOPLE'S NAMES. 8613 04:38:45,931 --> 04:38:48,000 ARE THERE RESOURCES TO SUPPORT 8614 04:38:48,000 --> 04:38:49,101 NON- DEGREE HOLDING INDIVIDUALS, 8615 04:38:49,101 --> 04:38:51,236 SO LEAVE RESEARCH IN THE 8616 04:38:51,236 --> 04:38:52,104 EXTRAMURAL SPACE OR THROUGH 8617 04:38:52,104 --> 04:38:53,171 SMALL BUSINESS? 8618 04:38:53,171 --> 04:38:54,506 OOO, THAT IS A REALLY GOOD 8619 04:38:54,506 --> 04:38:59,811 QUESTION FOR ANY OF OUR NIH 8620 04:38:59,811 --> 04:39:00,679 COLLEAGUES WHO ARE IN THE ZOOM 8621 04:39:00,679 --> 04:39:08,020 MEETING OR OTHER FOLKS FROM 8622 04:39:08,020 --> 04:39:18,397 FUNDING ORGANIZATIONS. 8623 04:39:31,944 --> 04:39:33,645 >> HI, GINA. 8624 04:39:33,645 --> 04:39:34,046 I CAN JUMP IN. 8625 04:39:34,046 --> 04:39:35,681 >> THANK YOU, JENNIFER. 8626 04:39:35,681 --> 04:39:38,317 >> A COUPLE PROGRAMS THAT THE 8627 04:39:38,317 --> 04:39:41,386 SMALL BUSINESS GRANT PROGRAM, 8628 04:39:41,386 --> 04:39:45,424 WHICH FOCUSES ON OBVIOUSLY SMALL 8629 04:39:45,424 --> 04:39:50,896 FOR-PROFIT BUSINESSES DOESN'T 8630 04:39:50,896 --> 04:39:52,197 HAVE THE SAME SORT OF 8631 04:39:52,197 --> 04:39:53,565 EXPECTATIONS OF WHAT KIND 8632 04:39:53,565 --> 04:39:56,435 OF DEGREE YOU MIGHT HAVE, SO 8633 04:39:56,435 --> 04:39:57,302 JUST AS LONG AS YOU'RE RUNNING A 8634 04:39:57,302 --> 04:39:58,537 BUSINESS AND YOU'RE DOING 8635 04:39:58,537 --> 04:40:00,138 SOMETHING IN THE HEALTH-RELATED 8636 04:40:00,138 --> 04:40:00,772 FIELD THAT, YOU KNOW, YOUR 8637 04:40:00,772 --> 04:40:05,577 BUSINESS IS ENGAGED IN, AND THEN 8638 04:40:05,577 --> 04:40:07,879 THERE ARE SOME PROGRAMS LIKE THE 8639 04:40:07,879 --> 04:40:08,714 COMPASS PROGRAM THAT NIH -- 8640 04:40:08,714 --> 04:40:12,017 THROUGH THE NIH COMMON FUND. 8641 04:40:12,017 --> 04:40:15,487 THAT'S ANOTHER ONE THAT'S NOT 8642 04:40:15,487 --> 04:40:16,822 ACCEPTING APPLICATIONS FOR 8643 04:40:16,822 --> 04:40:18,957 RESEARCH PROJECTS, BUT THAT 8644 04:40:18,957 --> 04:40:20,158 PROGRAM, THE PROJECTS ARE GOING 8645 04:40:20,158 --> 04:40:21,059 TO COMMUNITY ORGANIZATIONS 8646 04:40:21,059 --> 04:40:23,962 RATHER THAN ACADEMIC 8647 04:40:23,962 --> 04:40:24,596 INSTITUTIONS, SO AGAIN, THERE'S 8648 04:40:24,596 --> 04:40:28,567 GOING TO BE A VARIETY OF 8649 04:40:28,567 --> 04:40:30,102 BACKGROUNDS OF FOLKS WHO ARE 8650 04:40:30,102 --> 04:40:32,571 SERVING AS PRINCIPAL 8651 04:40:32,571 --> 04:40:34,773 INVESTIGATORS OF THOSE PROJECTS. 8652 04:40:34,773 --> 04:40:35,307 >> GREAT. 8653 04:40:35,307 --> 04:40:41,546 THANK YOU SO MUCH, JENNIFER. 8654 04:40:41,546 --> 04:40:45,317 IT LOOKS LIKE THERE WAS A 8655 04:40:45,317 --> 04:40:48,053 QUESTION IN THE CHAT EARLIER. 8656 04:40:48,053 --> 04:40:49,721 HOW DO YOU DEAL WITH RESEARCHERS 8657 04:40:49,721 --> 04:40:53,492 WHO THINK DEI IN CLINICAL 8658 04:40:53,492 --> 04:40:54,593 RESEARCH IS A FORM OF REVERSE 8659 04:40:54,593 --> 04:40:55,927 DISCRIMINATION? 8660 04:40:55,927 --> 04:41:03,101 THAT IS A GOOD QUESTION. 8661 04:41:03,101 --> 04:41:05,037 DOES ANYONE WANT TO SHARE ANY 8662 04:41:05,037 --> 04:41:15,380 THOUGHTS, INSIGHTS? 8663 04:41:16,314 --> 04:41:18,950 OH, MY GORK. 8664 04:41:18,950 --> 04:41:20,385 GOSH, OUR CLOSING 8665 04:41:20,385 --> 04:41:21,987 SPEAKER, DR. MARIE BERNARD. 8666 04:41:21,987 --> 04:41:23,588 >> I COULDN'T HELP IT. 8667 04:41:23,588 --> 04:41:24,189 >> THANK YOU. 8668 04:41:24,189 --> 04:41:25,524 >> ONE OF THE THINGS THAT IS 8669 04:41:25,524 --> 04:41:27,025 REALLY IMPORTANT IN HELPING 8670 04:41:27,025 --> 04:41:28,126 PEOPLE TO UNDERSTAND THE BENEFIT 8671 04:41:28,126 --> 04:41:30,729 OF DEI IS THE DATA THAT SHOWS 8672 04:41:30,729 --> 04:41:32,898 THAT WHEN YOU HAVE DIVERSE 8673 04:41:32,898 --> 04:41:34,399 PERSPECTIVES, YOU HAVE BETTER 8674 04:41:34,399 --> 04:41:35,400 SCIENCE. 8675 04:41:35,400 --> 04:41:37,335 GREATER CREATIVITY, GREATER 8676 04:41:37,335 --> 04:41:38,403 INNOVATION. 8677 04:41:38,403 --> 04:41:40,472 IT'S NOT A HANDOUT, IT'S NOT 8678 04:41:40,472 --> 04:41:41,506 REVERSE DISCRIMINATION, IT'S 8679 04:41:41,506 --> 04:41:42,541 JUST TRYING TO MAKE SURE WE DO 8680 04:41:42,541 --> 04:41:46,244 THE BEST SCIENCE. 8681 04:41:46,244 --> 04:41:46,978 >> THANK YOU. 8682 04:41:46,978 --> 04:41:48,513 >> YES, THANK YOU. 8683 04:41:48,513 --> 04:41:50,949 >> BEVERLY? 8684 04:41:50,949 --> 04:41:53,985 DID YOU ALSO WANT TO -- 8685 04:41:53,985 --> 04:41:56,588 >> I THINK I'M REALLY GLAD THAT 8686 04:41:56,588 --> 04:41:57,589 SOME OF THE QUESTIONS ARE COMING 8687 04:41:57,589 --> 04:41:59,324 IN TO THE CHAT BECAUSE IT REALLY 8688 04:41:59,324 --> 04:42:01,193 SPEAKS TO THE MINDSET WHERE 8689 04:42:01,193 --> 04:42:02,828 PEOPLE ARE WHEN WE BRING THESE 8690 04:42:02,828 --> 04:42:03,595 TOPICS IN. 8691 04:42:03,595 --> 04:42:05,097 AND THINKING ABOUT DOING A 8692 04:42:05,097 --> 04:42:06,832 PRIMER TO MAKE SURE THAT WE'RE 8693 04:42:06,832 --> 04:42:09,434 ALL UNDERSTANDING WHAT WE'RE 8694 04:42:09,434 --> 04:42:13,271 DOING AND WHY IS CRITICAL, 8695 04:42:13,271 --> 04:42:14,372 BECAUSE THERE'S MAYBE A THOUGHT 8696 04:42:14,372 --> 04:42:16,208 THAT WE JUST DON'T KNOW HOW TO 8697 04:42:16,208 --> 04:42:17,175 DIVERSIFY OUR RESEARCH AND WHAT 8698 04:42:17,175 --> 04:42:18,376 WE'RE SEEING IN THE COMMENT 8699 04:42:18,376 --> 04:42:21,546 SECTION IS PEOPLE ACTUALLY ARE 8700 04:42:21,546 --> 04:42:22,481 DEALING WITH OTHER THINGS FROM 8701 04:42:22,481 --> 04:42:23,915 PERCEPTIONS ABOUT WHAT THIS 8702 04:42:23,915 --> 04:42:25,117 REALLY MEANS AND WHY WE'RE DOING 8703 04:42:25,117 --> 04:42:26,218 THIS. 8704 04:42:26,218 --> 04:42:27,719 AND SO IT'S NOT JUST ABOUT HOW 8705 04:42:27,719 --> 04:42:29,788 CAN YOU RECRUIT DIVERSE 8706 04:42:29,788 --> 04:42:31,857 CANDIDATES FOR YOUR RESEARCH. 8707 04:42:31,857 --> 04:42:33,625 IT REALLY IS UNDERSTANDING THE 8708 04:42:33,625 --> 04:42:34,326 HISTORY OF THIS COUNTRY AND HOW 8709 04:42:34,326 --> 04:42:35,327 WE GOT HERE. 8710 04:42:35,327 --> 04:42:38,363 WHERE THESE PROBLEMS ARISE, AND 8711 04:42:38,363 --> 04:42:39,564 WHY IT'S IMPORTANT. 8712 04:42:39,564 --> 04:42:40,632 THIS ISN'T JUST ABOUT CORRECTING 8713 04:42:40,632 --> 04:42:41,733 A WRONG. 8714 04:42:41,733 --> 04:42:43,502 THIS IS ACTUALLY -- I THINK THE 8715 04:42:43,502 --> 04:42:45,971 FIRST SPEAKER FROM YESTERDAY, 8716 04:42:45,971 --> 04:42:48,573 REALLY TALKING ABOUT SOME OF THE 8717 04:42:48,573 --> 04:42:49,341 EVOLUTIONARY CHANGES THAT HAVE 8718 04:42:49,341 --> 04:42:50,208 HAPPENED IN COMMUNITIES THAT 8719 04:42:50,208 --> 04:42:53,945 IMPACT HOW THEY RE-UPTAKE SOME 8720 04:42:53,945 --> 04:42:55,113 OF THE THINGS THAT WE'RE 8721 04:42:55,113 --> 04:42:55,647 CREATING. 8722 04:42:55,647 --> 04:42:59,584 IT IMPACTS HOW WE RESPOND TO 8723 04:42:59,584 --> 04:43:01,086 TREATMENTS, AND UNDERSTANDING 8724 04:43:01,086 --> 04:43:02,854 THE KIND OF BIOLOGY THAT IS 8725 04:43:02,854 --> 04:43:06,458 UNDERPINNING WHY WE NEED TO 8726 04:43:06,458 --> 04:43:08,393 DIVERSIFY THE BODIES THAT ARE 8727 04:43:08,393 --> 04:43:09,361 INVOLVED IN OUR WORK SO THAT OUR 8728 04:43:09,361 --> 04:43:12,864 TREATMENTS WORK FOR MULTIPLE 8729 04:43:12,864 --> 04:43:13,398 DIFFERENT POPULATIONS. 8730 04:43:13,398 --> 04:43:15,667 BUT I'VE DONE ENOUGH WORKSHOPS 8731 04:43:15,667 --> 04:43:17,102 TEACHING PEOPLE ABOUT GENETICS 8732 04:43:17,102 --> 04:43:19,404 VERSUS EPIGENETICS VERSUS RACE 8733 04:43:19,404 --> 04:43:21,373 BEING A SOCIAL CONSTRUCT TO KNOW 8734 04:43:21,373 --> 04:43:22,741 THAT PEOPLE STILL DON'T 8735 04:43:22,741 --> 04:43:25,944 UNDERSTAND THOSE FOUNDATIONAL 8736 04:43:25,944 --> 04:43:26,144 TERMS. 8737 04:43:26,144 --> 04:43:28,880 THERE WAS A COMMENT I MADE 8738 04:43:28,880 --> 04:43:31,583 EARLIER THAT SOMEONE SOMEHOW 8739 04:43:31,583 --> 04:43:32,450 JUMPED TO SE SEGREGATION. 8740 04:43:32,450 --> 04:43:34,186 SO WE WANT TO MAKE SURE WE HAVE 8741 04:43:34,186 --> 04:43:35,921 THAT FOUNDATIONAL UNDERSTANDING 8742 04:43:35,921 --> 04:43:36,988 OF WHAT'S BEING DISCUSSED HERE 8743 04:43:36,988 --> 04:43:38,190 AND WHAT'S NOT BEING DISCUSSED 8744 04:43:38,190 --> 04:43:43,628 HERE, BECAUSE THERE IS NO REA 8745 04:43:43,628 --> 04:43:47,032 REVERSE DISCE DISCRIMINATION, IS 8746 04:43:47,032 --> 04:43:48,800 EXPANDING THE WORK BECAUSE IN 8747 04:43:48,800 --> 04:43:49,401 ORDER FOR OUR TREATMENTS TO 8748 04:43:49,401 --> 04:43:52,804 SERVE ALL POPULATIONS. 8749 04:43:52,804 --> 04:43:53,872 >> DEFINITELY. 8750 04:43:53,872 --> 04:43:56,775 I THINK YOU RAISE A REALLY GOOD 8751 04:43:56,775 --> 04:43:57,909 POINT, BEVERLY, ABOUT CULTURE, 8752 04:43:57,909 --> 04:43:59,444 ABOUT CHANGING THE CULTURE THAT 8753 04:43:59,444 --> 04:44:01,947 PEOPLE ARE IN AND THE SOCIAL 8754 04:44:01,947 --> 04:44:04,082 NORMS. 8755 04:44:04,082 --> 04:44:06,718 VANESSA, DO YOU WANT TO READ -- 8756 04:44:06,718 --> 04:44:07,586 SOMEONE RESPONDED TO THIS 8757 04:44:07,586 --> 04:44:09,387 QUESTION ON THE VIDEOCAST. 8758 04:44:09,387 --> 04:44:10,722 >> SURE. 8759 04:44:10,722 --> 04:44:11,389 ONE SECOND. 8760 04:44:11,389 --> 04:44:21,466 LET ME JUST OPEN THIS. 8761 04:44:21,466 --> 04:44:23,201 LET'S SEE. 8762 04:44:23,201 --> 04:44:25,804 SO FROM LAURIE LO. 8763 04:44:25,804 --> 04:44:27,872 EDUCATION FOR EMPLOYEES WHO ARE 8764 04:44:27,872 --> 04:44:29,641 ACTIVELY DOING RECRUITMENT ON 8765 04:44:29,641 --> 04:44:31,810 WHERE MISTRUST COMES FROM IN 8766 04:44:31,810 --> 04:44:33,078 RESEARCH. 8767 04:44:33,078 --> 04:44:40,151 HOW TO TACKLE THAT MISTRUST AND 8768 04:44:40,151 --> 04:44:41,786 ORGANIZATION LEVEL CAN HELP 8769 04:44:41,786 --> 04:44:43,521 TACKLE INEQUITIES AND BIAS FROM 8770 04:44:43,521 --> 04:44:44,723 THOSE WHO INTERACT WITH 8771 04:44:44,723 --> 04:44:52,163 PARTICIPANTS THE MOST. 8772 04:44:52,163 --> 04:44:53,565 >> THEN THERE WAS ANOTHER 8773 04:44:53,565 --> 04:44:54,933 QUESTION IN THE CHAT, DO YOU 8774 04:44:54,933 --> 04:44:58,436 HAVE ANY EXAMPLES OF COMMUNITY 8775 04:44:58,436 --> 04:44:59,871 BENEFIT COMMUNITY 8776 04:44:59,871 --> 04:45:02,841 [UNDER A SCHEDULE H BUILDING 8777 04:45:02,841 --> 04:45:06,978 EFFORTS IN RESEARCH EFFORTS? 8778 04:45:06,978 --> 04:45:08,913 I DON'T UNDERSTAND WHAT THIS IS 8779 04:45:08,913 --> 04:45:10,415 ASKING ABOUT. 8780 04:45:10,415 --> 04:45:11,416 BUT I KNOW THAT THERE ARE PEOPLE 8781 04:45:11,416 --> 04:45:13,952 IN THIS MEETING WHO DO. 8782 04:45:13,952 --> 04:45:15,920 >> SORRY, I WAS REFERRING TO 8783 04:45:15,920 --> 04:45:19,591 COMMUNITY BUILDING. 8784 04:45:19,591 --> 04:45:22,160 >> SURE, BUT THE ACA SCHEDULE H, 8785 04:45:22,160 --> 04:45:24,129 IS THAT SOMETHING SPECIFIC TO 8786 04:45:24,129 --> 04:45:24,562 COMMUNITY BUILDING? 8787 04:45:24,562 --> 04:45:29,868 >> YES. 8788 04:45:29,868 --> 04:45:32,804 >> CAN YOU EXPAND UPON THAT A 8789 04:45:32,804 --> 04:45:33,805 LITTLE BIT? 8790 04:45:33,805 --> 04:45:38,376 >> SO FOR THE ACA, SO IN 8791 04:45:38,376 --> 04:45:40,111 ADDITION TO REQUIRING A 8792 04:45:40,111 --> 04:45:41,379 COMMUNITY HEALTH NEEDS 8793 04:45:41,379 --> 04:45:46,584 ASSESSMENT, THEY'VE ALSO SORT OF 8794 04:45:46,584 --> 04:45:47,218 OPENED -- KIND OF OPENED UP THE 8795 04:45:47,218 --> 04:45:49,454 FIELD AS FAR AS WHAT 8796 04:45:49,454 --> 04:45:50,555 INSTITUTIONS CAN DO TO BENEFIT 8797 04:45:50,555 --> 04:45:51,723 THE COMMUNITY, INCLUDING 8798 04:45:51,723 --> 04:45:56,628 PROVIDING SERVICES OR ACTUALLY 8799 04:45:56,628 --> 04:45:57,662 BUILDING STRUCTURES THAT PROVIDE 8800 04:45:57,662 --> 04:45:58,930 BENEFIT TO THE COMMUNITY SUCH AS 8801 04:45:58,930 --> 04:46:03,735 GROCERY STORES OR IN THIS CASE 8802 04:46:03,735 --> 04:46:06,438 SOMETHING LIKE A RESEARCH 8803 04:46:06,438 --> 04:46:16,681 INTERVENTION. 8804 04:46:17,048 --> 04:46:19,250 >> I THINK MAYBE THE COMPASS 8805 04:46:19,250 --> 04:46:20,452 EFFORT THAT JENNIFER HAD 8806 04:46:20,452 --> 04:46:21,986 MENTIONED IS A GOOD EXAMPLE OF 8807 04:46:21,986 --> 04:46:22,821 THAT, WHERE IT'S PROVIDING 8808 04:46:22,821 --> 04:46:24,556 FUNDING DIRECTLY TO COMMUNITY 8809 04:46:24,556 --> 04:46:27,759 ORGANIZATIONS AND SO -- TO A 8810 04:46:27,759 --> 04:46:31,096 RESEARCH ENTITY THAT THEN HAS TO 8811 04:46:31,096 --> 04:46:31,930 SHARE IT WITH THE COMMUNITY 8812 04:46:31,930 --> 04:46:33,164 ORGANIZATION. 8813 04:46:33,164 --> 04:46:41,806 I THINK THAT'S ONE PROBLEM. 8814 04:46:41,806 --> 04:46:42,040 MONIKA? 8815 04:46:42,040 --> 04:46:42,774 >> JUST AN IDEA, I'M NOT SURE 8816 04:46:42,774 --> 04:46:44,442 HOW THE NIH CAN SUPPORT THIS, 8817 04:46:44,442 --> 04:46:47,245 BUT I KNOW IN MY EXPERIENCE, 8818 04:46:47,245 --> 04:46:49,047 WORKING AS A NON-PROFIT WITH 8819 04:46:49,047 --> 04:46:52,150 UNIVERSITY OF IDAHO AND THE 8820 04:46:52,150 --> 04:46:55,286 UNDERGRAD AND GRADUATE RESEARCH 8821 04:46:55,286 --> 04:46:56,721 ASSISTANTS THERE WHO ARE FUTURE 8822 04:46:56,721 --> 04:46:57,589 INVESTIGATORS, AND BEING ABLE TO 8823 04:46:57,589 --> 04:46:59,891 BRING THEM WITH FUNDING TO 8824 04:46:59,891 --> 04:47:01,359 INTERNATIONAL CONFERENCES WHERE 8825 04:47:01,359 --> 04:47:03,128 WE'RE PRESENTING OUR RESEARCH 8826 04:47:03,128 --> 04:47:05,663 POSTERS AND SO FORTH, AND HOW 8827 04:47:05,663 --> 04:47:08,767 INFLUENTIAL THAT IS AND 8828 04:47:08,767 --> 04:47:09,434 IMPACTFUL FOR THEIR FUTURES IN 8829 04:47:09,434 --> 04:47:11,636 TERMS OF MENTORSHIP, ARE THERE 8830 04:47:11,636 --> 04:47:15,573 WAYS THAT THE NIH CAN SUPPORT 8831 04:47:15,573 --> 04:47:20,478 NEW DIVERSE POPULATION, FUTURE 8832 04:47:20,478 --> 04:47:22,447 INVESTIGATORS TO BE ABLE TO BE 8833 04:47:22,447 --> 04:47:25,450 MENTORED TO COME TO CONFERENCES, 8834 04:47:25,450 --> 04:47:29,320 TO LEARN MORE ABOUT HOW THEY CAN 8835 04:47:29,320 --> 04:47:31,923 CONDUCT RESEARCH, AND ALSO TO DO 8836 04:47:31,923 --> 04:47:35,126 LISTENING SESSIONS, LISTENING 8837 04:47:35,126 --> 04:47:35,960 SESSIONS WHERE YOU CAN INVITE 8838 04:47:35,960 --> 04:47:38,596 THEM IN TO SAY WHAT ARE YOU 8839 04:47:38,596 --> 04:47:39,998 INTERESTED IN RESEARCHING, WHAT 8840 04:47:39,998 --> 04:47:42,167 DO YOU THINK NEEDS TO BE 8841 04:47:42,167 --> 04:47:46,004 RESEARCHED AS A YOUNG PERSON IN 8842 04:47:46,004 --> 04:47:51,943 AMERICA TODAY? 8843 04:47:51,943 --> 04:47:57,715 >> THANK YOU. 8844 04:47:57,715 --> 04:48:01,286 I SEE A LONG COMMENT FROM TINA 8845 04:48:01,286 --> 04:48:02,287 DOTHARD PETERSON. 8846 04:48:02,287 --> 04:48:03,922 WOULD YOU COME OFF MUTE AND 8847 04:48:03,922 --> 04:48:04,889 SPEAK MORE ABOUT WHAT YOU WROTE 8848 04:48:04,889 --> 04:48:13,865 IN THE CHAT? 8849 04:48:13,865 --> 04:48:15,700 >> HI. 8850 04:48:15,700 --> 04:48:20,605 YES, I'M AN ALUMNI OF AN HBCU, 8851 04:48:20,605 --> 04:48:23,775 AND MY RESEARCH -- I'M A SOCIAL 8852 04:48:23,775 --> 04:48:24,976 WORKER, ACADEMIC, ASSOCIATE 8853 04:48:24,976 --> 04:48:26,744 PROFESSOR AT THE UNIVERSITY OF 8854 04:48:26,744 --> 04:48:28,580 CINCINNATI SCHOOL OF SOCIAL 8855 04:48:28,580 --> 04:48:30,515 WORK. 8856 04:48:30,515 --> 04:48:33,485 I JUST KNOW DEURN DURING THE HEF 8857 04:48:33,485 --> 04:48:35,887 COVID THAT A LOT OF THE HBCUs 8858 04:48:35,887 --> 04:48:38,490 WERE HOSTING TOWN HALLS AND THEY 8859 04:48:38,490 --> 04:48:42,427 WERE ALREADY DOING A LOT OF WORK 8860 04:48:42,427 --> 04:48:43,828 PRIOR TO THE COMMUNITY 8861 04:48:43,828 --> 04:48:45,763 ENGAGEMENT THAT TOOK PLACE IN 8862 04:48:45,763 --> 04:48:47,298 TERMS OF OUTREACH IN THE 8863 04:48:47,298 --> 04:48:48,433 COMMUNITY. 8864 04:48:48,433 --> 04:48:49,601 SO I APPRECIATED THAT AND WE 8865 04:48:49,601 --> 04:48:52,003 KNOW THE LIMITED RESOURCES ARE 8866 04:48:52,003 --> 04:48:54,806 THERE, THEY REMAIN. 8867 04:48:54,806 --> 04:48:56,341 THE OTHER THING IS, I THINK THAT 8868 04:48:56,341 --> 04:48:58,309 WE ALSO NEED TO CONTINUE TO TAKE 8869 04:48:58,309 --> 04:49:03,615 A LOOK AT WHO IS ACTUALLY 8870 04:49:03,615 --> 04:49:05,617 GAINING ACCESS ON A REGULAR 8871 04:49:05,617 --> 04:49:09,187 BASIS TO THE MENTORING NETWORKS, 8872 04:49:09,187 --> 04:49:12,223 AND WHO IS NOT, BECAUSE WE KNOW 8873 04:49:12,223 --> 04:49:14,492 THAT THIS PLAYS A CRUCIAL ROLE 8874 04:49:14,492 --> 04:49:15,126 IN ABSOLUTELY EVERYTHING THAT 8875 04:49:15,126 --> 04:49:17,095 WE'RE TALKING ABOUT IN TERMS OF 8876 04:49:17,095 --> 04:49:20,932 THE PREVIOUS SPEAKER WHO SAID 8877 04:49:20,932 --> 04:49:22,133 SOMETHING ABOUT NOT JUST FUNDING 8878 04:49:22,133 --> 04:49:26,437 ABOUT THE PIs AND PIs THAT 8879 04:49:26,437 --> 04:49:28,106 MATCH THE COMMUNITIES. 8880 04:49:28,106 --> 04:49:29,641 AND WE KNOW THAT STARTS 8881 04:49:29,641 --> 04:49:30,842 SOMEWHERE WITH ACTUALLY 8882 04:49:30,842 --> 04:49:34,212 CONNECTING WITH SOMEONE'S 8883 04:49:34,212 --> 04:49:35,413 RESEARCH, RESEARCH LABS, 8884 04:49:35,413 --> 04:49:37,415 SOMEBODY'S GRADUATE RESEARCH, 8885 04:49:37,415 --> 04:49:40,118 AND SO I APPRECIATE BECAUSE 8886 04:49:40,118 --> 04:49:41,452 THERE ARE MANY VIRTUAL WORKSHOPS 8887 04:49:41,452 --> 04:49:44,022 THAT I'VE BEEN ABLE TO ATTEND 8888 04:49:44,022 --> 04:49:45,089 THAT ORDINARILY PRE-COVID, I 8889 04:49:45,089 --> 04:49:49,160 WASN'T AWARE OF THEM. 8890 04:49:49,160 --> 04:49:52,230 >> THANK YOU SO MUCH FOR 8891 04:49:52,230 --> 04:49:52,463 SHARING. 8892 04:49:52,463 --> 04:49:57,602 >> THANK YOU. 8893 04:49:57,602 --> 04:49:59,637 >> LET'S SEE. 8894 04:49:59,637 --> 04:50:02,607 ANYONE ELSE LIKE TO SHARE ANY OF 8895 04:50:02,607 --> 04:50:03,441 YOUR QUESTIONS? 8896 04:50:03,441 --> 04:50:08,613 >> THERE'S A QUESTION FROM 8897 04:50:08,613 --> 04:50:10,348 SHIRLEY DORVAL IN THE CHAT. 8898 04:50:10,348 --> 04:50:12,216 HOW DO WE TACKLE BIAS BY TRIAL 8899 04:50:12,216 --> 04:50:13,851 SITES TO OFFER TRIAL 8900 04:50:13,851 --> 04:50:19,090 PARTICIPANTS FROM VULNERABLE 8901 04:50:19,090 --> 04:50:20,391 POPULATIONS OUTSIDE -- OH, NO, 8902 04:50:20,391 --> 04:50:22,460 THE CHAT MOVED. 8903 04:50:22,460 --> 04:50:23,528 OUTSIDE OF RACE AND ETHNICITY, 8904 04:50:23,528 --> 04:50:26,297 FOR EXAMPLE, ELDERLY AND PEOPLE 8905 04:50:26,297 --> 04:50:27,832 WHO ARE DIFFERENTLILY ABLED 8906 04:50:27,832 --> 04:50:30,835 COGNITIVELY OR PHYSICALLY. 8907 04:50:30,835 --> 04:50:31,336 THAT'S A GREAT QUESTION. 8908 04:50:31,336 --> 04:50:34,606 I THINK MAYBE IF ANY OF OUR 8909 04:50:34,606 --> 04:50:36,474 PANELISTS FROM THE SPECIAL 8910 04:50:36,474 --> 04:50:38,142 CONSENT CONSIDERATIONS PANEL ARE 8911 04:50:38,142 --> 04:50:45,617 STILL ON, THAT COULD BE 8912 04:50:45,617 --> 04:50:47,151 SOMETHING -- CARRIE NIEMAN WAS 8913 04:50:47,151 --> 04:50:51,189 OUR OLDER ADULTS EXPERT. 8914 04:50:51,189 --> 04:50:54,459 ANGEL MILES WAS OUR PEOPLE WITH 8915 04:50:54,459 --> 04:51:04,836 DISABILITIES EXPERT. 8916 04:51:04,836 --> 04:51:05,937 RICHARD HARVEY, WOULD YOU LIKE 8917 04:51:05,937 --> 04:51:07,905 TO -- OH, WONDERFUL. 8918 04:51:07,905 --> 04:51:08,172 YES. 8919 04:51:08,172 --> 04:51:11,275 COME OFF VIDEO, RICHARD. 8920 04:51:11,275 --> 04:51:12,844 TELL US YOUR THOUGHTS. 8921 04:51:12,844 --> 04:51:14,245 >> YEAH, THANK YOU. 8922 04:51:14,245 --> 04:51:17,181 THIS IS AN AMAZING PRESENTATION. 8923 04:51:17,181 --> 04:51:19,484 I WAS RESPONDING TO SHIRLEY D'S 8924 04:51:19,484 --> 04:51:20,018 QUESTION. 8925 04:51:20,018 --> 04:51:23,221 IT'S NOT ONLY IN REGARDS TO 8926 04:51:23,221 --> 04:51:24,422 PARTICIPANTS, BUT ALSO 8927 04:51:24,422 --> 04:51:26,824 INVESTIGATIVE TEAMS THEMSELVES. 8928 04:51:26,824 --> 04:51:28,359 AND SOMETIMES THERE'S VARIOUS 8929 04:51:28,359 --> 04:51:33,464 TYPES OF BIASES OR PRACTICES 8930 04:51:33,464 --> 04:51:37,268 THAT ARE -- IT'S TOUGH SOMETIMES 8931 04:51:37,268 --> 04:51:39,037 TO DO RESEARCH. 8932 04:51:39,037 --> 04:51:40,238 I'M GOING TO STOP THERE. 8933 04:51:40,238 --> 04:51:42,707 THERE'S A LONG RIFT IN THE CHAT. 8934 04:51:42,707 --> 04:51:46,878 >> OKAY. 8935 04:51:46,878 --> 04:51:48,012 VIRGINIA, DID YOU WANT TO SHARE? 8936 04:51:48,012 --> 04:51:49,280 >> YES, I DID. 8937 04:51:49,280 --> 04:51:50,181 I THINK THIS IS A GREAT WORKSHOP 8938 04:51:50,181 --> 04:51:51,883 AND I THINK IT DEMONSTRATES TO 8939 04:51:51,883 --> 04:51:56,788 ALL OF US HOW MUCH TIME IT TAKES 8940 04:51:56,788 --> 04:52:00,625 UP FRONT TO DEVELOP A STRONG 8941 04:52:00,625 --> 04:52:06,330 GRANT APPLICATION BECAUSE YOU 8942 04:52:06,330 --> 04:52:07,999 KNOW, ONE OF THE PRESENTATIONS, 8943 04:52:07,999 --> 04:52:12,303 I THINK IT WAS DR. EGEDE FROM 8944 04:52:12,303 --> 04:52:12,870 MEDICAL COLLEGE OF WISCONSIN 8945 04:52:12,870 --> 04:52:13,938 ABOUT DIFFERENT SUBGROUPS TRYING 8946 04:52:13,938 --> 04:52:16,574 TO GET THIS, THERE'S A LOT WE 8947 04:52:16,574 --> 04:52:18,042 DON'T KNOW ABOUT THE PREVALENCE 8948 04:52:18,042 --> 04:52:18,543 OF THE DISEASE IN THESE 8949 04:52:18,543 --> 04:52:19,043 DIFFERENT GROUPS. 8950 04:52:19,043 --> 04:52:27,719 WE DON'T KNOW HOW MUCH WHAT 8951 04:52:27,719 --> 04:52:28,786 PERCENTAGE OF WOMEN SHOULD WE 8952 04:52:28,786 --> 04:52:33,691 EXPECT TO ENROLL GIVEN WHAT THE 8953 04:52:33,691 --> 04:52:35,126 DISEASE PREVALENCE IS IN WOMEN, 8954 04:52:35,126 --> 04:52:38,062 AND WITH RACE AND ANY OF THESE 8955 04:52:38,062 --> 04:52:42,066 SUBGROUPS, BECAUSE FOR EXAMPLE, 8956 04:52:42,066 --> 04:52:48,473 WE DON'T HAVE DATA ON DIFFERENT 8957 04:52:48,473 --> 04:52:49,207 GENDER GROUPS. 8958 04:52:49,207 --> 04:52:51,209 THOSE ARE JUST NOT -- AS WE 8959 04:52:51,209 --> 04:52:51,709 COLLECT DATA ON THAT. 8960 04:52:51,709 --> 04:52:54,979 SO IF WE ARE TRYING TO GET 8961 04:52:54,979 --> 04:52:57,615 ENOUGH PEOPLE ENROLLED IN OUR 8962 04:52:57,615 --> 04:52:58,249 STUDIES ACROSS DIFFERENT GROUPS 8963 04:52:58,249 --> 04:53:01,886 AND HAVE SUFFICIENT SAMPLE SIZES 8964 04:53:01,886 --> 04:53:05,223 TO BE ABLE TO DO MEANINGFUL 8965 04:53:05,223 --> 04:53:06,657 SUBGROUP ANALYSES OR TEST FOR 8966 04:53:06,657 --> 04:53:08,192 INTERACTION, THEN WE NEED TO 8967 04:53:08,192 --> 04:53:10,161 KNOW WHAT'S A REALISTIC 8968 04:53:10,161 --> 04:53:11,329 EXPECTATION. 8969 04:53:11,329 --> 04:53:15,266 IT'S ALSO TRUE FOR MONITORING 8970 04:53:15,266 --> 04:53:16,434 COMMITTEES, MONITORING BOARDS 8971 04:53:16,434 --> 04:53:17,802 AND FOR REVIEWERS OF OUR GRANTS 8972 04:53:17,802 --> 04:53:28,312 TO SAY WELL, THEY'RE GOING TO 8973 04:53:29,547 --> 04:53:30,014 GET 50% OF THIS. 8974 04:53:30,014 --> 04:53:31,883 SO WE HAVE TO DO A LOT OF 8975 04:53:31,883 --> 04:53:34,285 PRELIMINARY WORK ON OUR SAMPLE 8976 04:53:34,285 --> 04:53:35,486 SIZES AND OUR PLANNING AND WHO 8977 04:53:35,486 --> 04:53:37,021 DO WE WANT TO ENROLL IN THE 8978 04:53:37,021 --> 04:53:42,360 SENSE OF WHERE ARE OUR LOCATIONS 8979 04:53:42,360 --> 04:53:43,427 THAT MAYBE THEY SEE MORE OF THE 8980 04:53:43,427 --> 04:53:43,895 DISEASE. 8981 04:53:43,895 --> 04:53:45,396 IN OUR BREAKOUT SESSION 8982 04:53:45,396 --> 04:53:46,898 YESTERDAY, SOMEBODY WAS TALKING 8983 04:53:46,898 --> 04:53:47,431 ABOUT WHERE THEY DO THEIR 8984 04:53:47,431 --> 04:53:49,667 RESEARCH FROM, AND THEY ARE 8985 04:53:49,667 --> 04:53:51,836 ISOLATED IN A CERTAIN PART OF A 8986 04:53:51,836 --> 04:53:55,206 BIG CITY, AND THEY DON'T SEE THE 8987 04:53:55,206 --> 04:53:57,942 PEOPLE WHO ARE SOCIALLY 8988 04:53:57,942 --> 04:53:58,509 DISADVANTAGED. 8989 04:53:58,509 --> 04:54:01,879 THEY ONLY SEE KIND OF LIKE, OH, 8990 04:54:01,879 --> 04:54:03,948 THE WEALTHIER PEOPLE COME TO 8991 04:54:03,948 --> 04:54:04,482 THAT HOSPITAL. 8992 04:54:04,482 --> 04:54:06,984 SO HOW DO WE REALLY COLLABORATE 8993 04:54:06,984 --> 04:54:09,954 AND SO A LOT OF TIME HAS GOT TO 8994 04:54:09,954 --> 04:54:11,689 BE SPENT REALLY, REALLY 8995 04:54:11,689 --> 04:54:12,790 DEVELOPING THIS, A COUPLE YEARS, 8996 04:54:12,790 --> 04:54:17,261 YOU KNOW, BEFORE YOU CAN WRITE A 8997 04:54:17,261 --> 04:54:18,095 STRONG GRANT APPLICATION THAT 8998 04:54:18,095 --> 04:54:21,299 YOU HAVE ALL OF YOUR 8999 04:54:21,299 --> 04:54:23,868 JUSTIFICATION AND DOCUMENT WHY 9000 04:54:23,868 --> 04:54:25,336 YOU THINK THIS AND WHY YOU DO 9001 04:54:25,336 --> 04:54:25,770 THAT. 9002 04:54:25,770 --> 04:54:27,405 SO IT'S GREAT SESSIONS FOR ALL 9003 04:54:27,405 --> 04:54:28,606 OF US TO BUILD ON FUTURE 9004 04:54:28,606 --> 04:54:31,142 PROJECTS. 9005 04:54:31,142 --> 04:54:32,276 >> SURE. 9006 04:54:32,276 --> 04:54:32,577 THANK YOU. 9007 04:54:32,577 --> 04:54:34,212 I FEEL LIKE THAT WAS SOMETHING 9008 04:54:34,212 --> 04:54:35,413 THAT HAD BEEN MENTIONED IN THE 9009 04:54:35,413 --> 04:54:39,217 COMMENTS BEFORE, IS THAT IT IS 9010 04:54:39,217 --> 04:54:42,053 VERY DIFFICULT TO GET STARTED SO 9011 04:54:42,053 --> 04:54:43,688 ANY RESOURCES WE CAN SHARE WITH 9012 04:54:43,688 --> 04:54:46,524 EARLY STAGE INVESTIGATORS IS 9013 04:54:46,524 --> 04:54:48,259 IMPORTANT AND MENTORSHIP IS A 9014 04:54:48,259 --> 04:54:50,261 BIG PART OF THAT. 9015 04:54:50,261 --> 04:54:52,864 VANESSA, HOW ARE WE WITH THE 9016 04:54:52,864 --> 04:54:53,297 VIDEOCAST? 9017 04:54:53,297 --> 04:54:55,066 ANY ADDITIONAL QUESTIONS THERE? 9018 04:54:55,066 --> 04:54:57,134 >> NO ADDITIONAL QUESTIONS WITH 9019 04:54:57,134 --> 04:54:57,902 OUR VIDEOCAST. 9020 04:54:57,902 --> 04:54:59,003 I'M JUST LOOKING NOW THROUGH THE 9021 04:54:59,003 --> 04:55:09,113 CHAT. 9022 04:55:12,483 --> 04:55:14,418 >> HERE'S A QUESTION FROM 9023 04:55:14,418 --> 04:55:14,752 DUSTIN. 9024 04:55:14,752 --> 04:55:17,488 WHY DO YOU THINK THE ISSUE OF 9025 04:55:17,488 --> 04:55:19,023 DISPARITIES IS FRAMED THROUGH 9026 04:55:19,023 --> 04:55:21,359 THE LENS OF RACE AND ETHNICITY 9027 04:55:21,359 --> 04:55:22,727 RATHER THAN THROUGH OTHER 9028 04:55:22,727 --> 04:55:24,896 UNDERLYING ISSUES THAT MOST 9029 04:55:24,896 --> 04:55:27,031 UNDERREPRESENTED POPULATIONS 9030 04:55:27,031 --> 04:55:27,965 EXPERIENCE LIKE INCOME LEVEL, 9031 04:55:27,965 --> 04:55:32,003 EDUCATION, ET CETERA? 9032 04:55:32,003 --> 04:55:38,676 GOOD QUESTION. 9033 04:55:38,676 --> 04:55:40,611 ANYONE WANT TO PROVIDE FEEDBACK 9034 04:55:40,611 --> 04:55:45,549 ON THAT? 9035 04:55:45,549 --> 04:55:48,052 >> MAYBE IF I MAY, CAN YOU HEAR 9036 04:55:48,052 --> 04:55:48,219 ME? 9037 04:55:48,219 --> 04:55:49,053 >> YES, YES. 9038 04:55:49,053 --> 04:55:49,420 GO AHEAD. 9039 04:55:49,420 --> 04:55:51,555 >> EXPAND. 9040 04:55:51,555 --> 04:55:53,057 THIS HAS BEEN SUPER HELPFUL, AND 9041 04:55:53,057 --> 04:55:54,258 I HAVEN'T BEEN ABLE TO ATTEND 9042 04:55:54,258 --> 04:55:56,227 ALL THE SESSIONS BUT I'VE BEEN 9043 04:55:56,227 --> 04:55:58,195 ABLE TO ATTEND A FEW HOURS, AND 9044 04:55:58,195 --> 04:56:00,264 I GUESS THAT'S ONE QUESTION. 9045 04:56:00,264 --> 04:56:03,668 I THINK THIS IS TENDENCY IN THE 9046 04:56:03,668 --> 04:56:05,069 LANGUAGE ALWAYS SEEMS TO CAST 9047 04:56:05,069 --> 04:56:09,540 THESE DIFFERENCES BASED ON RACE 9048 04:56:09,540 --> 04:56:12,944 AND ETHNICITY, AND YET IF YOU 9049 04:56:12,944 --> 04:56:14,845 LOOK AT SOME OF THE UNDERLYING 9050 04:56:14,845 --> 04:56:17,281 ISSUES WHEN YOU GET DOWN TO IT 9051 04:56:17,281 --> 04:56:18,149 AS SAID IN SOME OF THE TALKS 9052 04:56:18,149 --> 04:56:20,117 HERE, SOME OF THESE ARE ISSUES 9053 04:56:20,117 --> 04:56:21,485 REGARDING ACCESS OR EDUCATION OR 9054 04:56:21,485 --> 04:56:24,155 INCOME LEVEL, AND THESE ARE BIG 9055 04:56:24,155 --> 04:56:29,694 ISSUES TO ADDRESS BUT I DON'T 9056 04:56:29,694 --> 04:56:30,695 UNDERSTAND SOMETIMES WHY AS A 9057 04:56:30,695 --> 04:56:32,563 SOCIETY WE DON'T CAST THINGS IN 9058 04:56:32,563 --> 04:56:36,600 THAT LIGHT OR MAYBE IN THAT 9059 04:56:36,600 --> 04:56:37,335 PERSPECTIVE. 9060 04:56:37,335 --> 04:56:41,038 LIKE MAYBE THE CURRENT -- I 9061 04:56:41,038 --> 04:56:42,573 DON'T KNOW, I HAD SOME QUESTION 9062 04:56:42,573 --> 04:56:47,278 ABOUT THAT IN TERMS OF SOME OF 9063 04:56:47,278 --> 04:56:49,313 THE UNDERLYING ISSUES MIGHT 9064 04:56:49,313 --> 04:56:50,014 ACTUALLY GET CLOSER TO THE HEART 9065 04:56:50,014 --> 04:56:53,284 OF SOME OF THESE -- SOME OF 9066 04:56:53,284 --> 04:56:56,887 THESE PROBLEMS IN TERMS OF 9067 04:56:56,887 --> 04:56:58,522 POVERTY AND EDUCATION AND INCOME 9068 04:56:58,522 --> 04:56:59,924 AND HEALTH ACCESS AND SOME OF 9069 04:56:59,924 --> 04:57:10,234 THOSE OTHER THINGS. 9070 04:57:10,234 --> 04:57:12,403 >> SO I HAVE A RESPONSE BUT I 9071 04:57:12,403 --> 04:57:14,305 WANTED TO GIVE OUR ATTENDEES 9072 04:57:14,305 --> 04:57:16,540 FIRST AN OPPORTUNITY IF ANYONE 9073 04:57:16,540 --> 04:57:19,844 WANTS TO JUMP IN AND OFFER 9074 04:57:19,844 --> 04:57:30,287 THOUGHT ON THEM, ON THIS. 9075 04:57:37,395 --> 04:57:39,196 WELL, I THINK THE FOCUS ON RACE 9076 04:57:39,196 --> 04:57:40,398 AND ETHNICITY FROM MY 9077 04:57:40,398 --> 04:57:43,934 UNDERSTANDING IS BECAUSE THROUGH 9078 04:57:43,934 --> 04:57:48,739 SO MUCH OF OUR HISTORY AND 9079 04:57:48,739 --> 04:57:49,707 PRESENT, THERE HAVE BEEN A LOT 9080 04:57:49,707 --> 04:57:54,945 OF RACE-SPECIFIC DISCRIMINATORY 9081 04:57:54,945 --> 04:57:58,616 THINGS, BIASES, POLICIES, AND SO 9082 04:57:58,616 --> 04:58:01,385 FOR EXAMPLE, YOU KNOW, LIKE RED 9083 04:58:01,385 --> 04:58:04,355 LINES WAS A HOUSING POLICY THAT 9084 04:58:04,355 --> 04:58:07,191 BASICALLY CREATED THE SEGREGATED 9085 04:58:07,191 --> 04:58:08,292 COMMUNITIES THAT WE HAVE TODAY, 9086 04:58:08,292 --> 04:58:10,895 AND THAT WAS A POLICY VERY 9087 04:58:10,895 --> 04:58:14,065 SPECIFICALLY ABOUT RACE THAT DID 9088 04:58:14,065 --> 04:58:15,599 HAVE SOCIOECONOMIC CONSEQUENCES 9089 04:58:15,599 --> 04:58:18,335 AND THAT REDLINED AREAS WEREN'T 9090 04:58:18,335 --> 04:58:24,775 ABLE TO BE AS PROSPEROUS BECAUSE 9091 04:58:24,775 --> 04:58:26,210 REALTORS OR INVESTORS WEREN'T 9092 04:58:26,210 --> 04:58:28,179 WILLING TO PUT PROPERTIES THERE, 9093 04:58:28,179 --> 04:58:31,215 BUT THE ROOT CAUSE OF THAT OR -- 9094 04:58:31,215 --> 04:58:33,651 YEAH, THE ROOT CAUSE OF THAT 9095 04:58:33,651 --> 04:58:36,387 REDLINING WAS RACIAL BIAS, AND 9096 04:58:36,387 --> 04:58:39,790 THERE'S ALSO WORK IN DIFFERENT 9097 04:58:39,790 --> 04:58:40,591 AREAS WHAT I'M MOST FAMILIAR 9098 04:58:40,591 --> 04:58:42,626 WITH IS MATERNAL MORTALITY, 9099 04:58:42,626 --> 04:58:48,866 WHERE YOU KNOW, EDUCATION AND 9100 04:58:48,866 --> 04:58:50,634 SES DO INFLUENCE RATES OF 9101 04:58:50,634 --> 04:58:53,571 MATERNAL MORTALITY, BUT WE STILL 9102 04:58:53,571 --> 04:58:56,207 ACTUALLY DO SEE RACIAL 9103 04:58:56,207 --> 04:58:58,509 DISPARITIES AMONG THE HIGHLY 9104 04:58:58,509 --> 04:59:01,545 EDUCATED WOMEN, AND THAT'S ONE 9105 04:59:01,545 --> 04:59:03,114 OF THE -- I THINK CURRENTLY 9106 04:59:03,114 --> 04:59:03,981 RIGHT NOW ONE OF THE THINGS 9107 04:59:03,981 --> 04:59:06,283 WE'RE TRYING TO WORK ON, IS 9108 04:59:06,283 --> 04:59:08,152 OKAY, IF WE ADDRESS THE ISSUE OF 9109 04:59:08,152 --> 04:59:11,655 JUST, YOU KNOW, POVERTY AND 9110 04:59:11,655 --> 04:59:13,724 EDUCATION, WHY IS THERE STILL A 9111 04:59:13,724 --> 04:59:14,725 GAP? 9112 04:59:14,725 --> 04:59:15,326 IT MUST BE SOMETHING ELSE, IT 9113 04:59:15,326 --> 04:59:16,293 MUST BE SOMETHING SPECIFIC TO 9114 04:59:16,293 --> 04:59:18,162 RACE BECAUSE WE CONTROLLED FOR 9115 04:59:18,162 --> 04:59:26,604 THE OTHER FACTORS. 9116 04:59:26,604 --> 04:59:28,005 >> THAT'S A GOOD POINT. 9117 04:59:28,005 --> 04:59:32,376 I JUST THINK SOME OF -- SO ON A 9118 04:59:32,376 --> 04:59:33,711 NATIONAL OR SORT OF POLICY 9119 04:59:33,711 --> 04:59:36,347 LEVEL, WHEN WE BEGIN ADDRESSING 9120 04:59:36,347 --> 04:59:37,314 THIS, HAS BEEN RELATIVELY 9121 04:59:37,314 --> 04:59:40,050 RECENT, RIGHT? 9122 04:59:40,050 --> 04:59:41,519 SO YOU'RE REFERRING TO SOMETHING 9123 04:59:41,519 --> 04:59:43,888 THAT WAS BACK, YOU KNOW, DECADES 9124 04:59:43,888 --> 04:59:45,623 AGO AND I THINK SOME OF THE 9125 04:59:45,623 --> 04:59:49,026 INSTITUTIONS CERTAINLY FROM 9126 04:59:49,026 --> 04:59:51,862 YEARS AGO HAVE BEEN VERY RACIST. 9127 04:59:51,862 --> 04:59:56,367 I THINK WE -- I'M GLAD AS A 9128 04:59:56,367 --> 04:59:58,002 COUNTRY, WE ARE MAKING SOME 9129 04:59:58,002 --> 05:00:01,405 PROGRESS, BUT I THINK THE 9130 05:00:01,405 --> 05:00:02,973 MEASURING STICK SOMETIMES, EVEN 9131 05:00:02,973 --> 05:00:03,874 IN THE STUDIES AND THE RESEARCH 9132 05:00:03,874 --> 05:00:05,209 THAT'S PRESENTED THAT'S FROM THE 9133 05:00:05,209 --> 05:00:10,347 90s OR THE 50s OR -- AND I 9134 05:00:10,347 --> 05:00:10,881 THINK SOMETIMES IT MAY BE 9135 05:00:10,881 --> 05:00:11,815 INTERESTING, WE MIGHT GET A 9136 05:00:11,815 --> 05:00:12,983 DIFFERENT PICTURE IF WE COMPARE 9137 05:00:12,983 --> 05:00:15,753 THINGS OVER THE LAST FIVE YEARS 9138 05:00:15,753 --> 05:00:18,923 WHEN THIS HAS BECOME MORE OF A 9139 05:00:18,923 --> 05:00:22,593 NATIONAL SORT OF POLICY WHEN 9140 05:00:22,593 --> 05:00:24,028 IT'S BEEN ADDRESSED, RIGHT? 9141 05:00:24,028 --> 05:00:27,798 I DON'T THINK -- I THINK WE 9142 05:00:27,798 --> 05:00:29,266 MIGHT GET JUST A LITTLE BIT MORE 9143 05:00:29,266 --> 05:00:30,034 ACCURATE PERCEPTION TO WHERE WE 9144 05:00:30,034 --> 05:00:32,403 ARE IF WE LOOK AT THESE THINGS 9145 05:00:32,403 --> 05:00:35,606 IN RELATIONSHIP TO THE LAST 9146 05:00:35,606 --> 05:00:38,776 COUPLE YEARS RATHER THAN THINGS 9147 05:00:38,776 --> 05:00:40,077 FROM LONG TIME PAST BECAUSE THAT 9148 05:00:40,077 --> 05:00:41,912 GIVES US A BETTER SENSE OF SORT 9149 05:00:41,912 --> 05:00:45,082 OF THE RATE AT WHICH WE ARE 9150 05:00:45,082 --> 05:00:46,617 CHANGING RATHER THAN CREATING A 9151 05:00:46,617 --> 05:00:48,252 PERCEPTION THAT THERE HAS NOT 9152 05:00:48,252 --> 05:00:51,989 BEEN CHANGE. 9153 05:00:51,989 --> 05:00:54,158 OR THAT CHANGE IS NOT OCCURRING. 9154 05:00:54,158 --> 05:00:55,759 JUST A THOUGHT. 9155 05:00:55,759 --> 05:01:00,564 >> BEV EARLY, BEVERLY, WOULD YO 9156 05:01:00,564 --> 05:01:00,798 COMMENT? 9157 05:01:00,798 --> 05:01:03,267 >> ABSOLUTELY. 9158 05:01:03,267 --> 05:01:05,102 DR. RODANTE, I TAKE YOUR POINT 9159 05:01:05,102 --> 05:01:05,603 AND I WOULD LIKE TO ADD 9160 05:01:05,603 --> 05:01:06,870 SOMETHING TO THAT. 9161 05:01:06,870 --> 05:01:10,608 SO FROM A BIOLOGICAL 9162 05:01:10,608 --> 05:01:11,375 PERSPECTIVE, THE ISSUES THAT 9163 05:01:11,375 --> 05:01:14,545 HAVE AFFECTED COMMUNITIES IN 9164 05:01:14,545 --> 05:01:15,846 THIS COUNTRY FOR HUNDREDS OF 9165 05:01:15,846 --> 05:01:17,881 YEARS, THEY DON'T CHANGE IN TWO 9166 05:01:17,881 --> 05:01:18,349 YEARS. 9167 05:01:18,349 --> 05:01:19,917 YOU CAN'T REVERSE THAT BIOLOGY 9168 05:01:19,917 --> 05:01:23,854 IN A PERSON'S LIFETIME. 9169 05:01:23,854 --> 05:01:25,723 SO IF I'M GOING TO LOOK AT THE 9170 05:01:25,723 --> 05:01:28,559 CONSEQUENCES OF AFRICAN AMERICAN 9171 05:01:28,559 --> 05:01:30,928 MATERNAL RATES AND I UNDERSTAND 9172 05:01:30,928 --> 05:01:33,464 EPIGENETICS, I UNDERSTAND THAT 9173 05:01:33,464 --> 05:01:35,099 IT TAKES A MINIMUM OF THREE 9174 05:01:35,099 --> 05:01:36,433 GENERATIONS TO REVERSE THAT 9175 05:01:36,433 --> 05:01:38,068 BIOLOGY BACK TO THE ORIGINAL 9176 05:01:38,068 --> 05:01:38,569 HOMEOSTASIS. 9177 05:01:38,569 --> 05:01:41,538 AND SO I CAN'T THEN JUST LOOK AT 9178 05:01:41,538 --> 05:01:43,741 SOME POLICIES THAT HAVE BEEN 9179 05:01:43,741 --> 05:01:45,609 CHANGED AND MAY OR MAY NOT BE 9180 05:01:45,609 --> 05:01:50,748 EFFECTIVELY IMPLEMENTED WITHIN 9181 05:01:50,748 --> 05:01:51,582 COMMUNITIES AND THINK THAT THAT 9182 05:01:51,582 --> 05:01:54,351 IS SOMEHOW A MEASURE THAT IS 9183 05:01:54,351 --> 05:01:55,519 STATISTICALLY SIGNIFICANT 9184 05:01:55,519 --> 05:01:59,590 BECAUSE -- AND WE DIDN'T GET TE 9185 05:01:59,590 --> 05:02:00,157 CONDITIONS IN TWO YEARS AND 9186 05:02:00,157 --> 05:02:01,792 WE'RE NOT GOING TO GET OUT OF 9187 05:02:01,792 --> 05:02:03,527 THEM IN THAT PERIOD OF TIME, SO 9188 05:02:03,527 --> 05:02:04,995 I JUST WANT TO KIND OF POINT 9189 05:02:04,995 --> 05:02:06,063 THAT OUT, AND UNDERSTANDING THAT 9190 05:02:06,063 --> 05:02:10,000 RED LINING PERSISTS, IT IS NOT 9191 05:02:10,000 --> 05:02:10,634 SOMETHING FROM THE PAST. 9192 05:02:10,634 --> 05:02:12,836 IF YOU LOOK AT MILWAUKEE, 9193 05:02:12,836 --> 05:02:15,539 WISCONSIN, WHICH WHERE I'M FROM, 9194 05:02:15,539 --> 05:02:17,374 OR CHICAGO OR A NUMBER OF 9195 05:02:17,374 --> 05:02:19,410 DIFFERENT SPACES, THERE IS 9196 05:02:19,410 --> 05:02:21,278 RECENT PUBLICATIONS THAT THE ZIP 9197 05:02:21,278 --> 05:02:23,881 CODE FOR WHICH PEOPLE COME FROM 9198 05:02:23,881 --> 05:02:25,749 DETERMINES THEIR HEALTH 9199 05:02:25,749 --> 05:02:27,618 OUTCOMES, DETERMINES THEIR LIFE 9200 05:02:27,618 --> 05:02:29,453 EXPECTANCY, BECAUSE OF ALL OF 9201 05:02:29,453 --> 05:02:33,324 THE THINGS THAT THAT ZIP CODE 9202 05:02:33,324 --> 05:02:33,857 DICTATES FINANCIALLY, FROM 9203 05:02:33,857 --> 05:02:34,858 POLICY, FROM MONEY DISTRIBUTION, 9204 05:02:34,858 --> 05:02:36,260 FROM SCHOOLS. 9205 05:02:36,260 --> 05:02:40,531 SO I JUST -- I UNDERSTAND THE 9206 05:02:40,531 --> 05:02:46,537 HESITATION THAT RACE MAY BE NOT 9207 05:02:46,537 --> 05:02:47,771 ENOUGH, BUT IT'S HOW RACE IS 9208 05:02:47,771 --> 05:02:49,173 TREATED IN THIS COUNTRY AND NOT 9209 05:02:49,173 --> 05:02:51,141 RACE ITSELF THAT'S THE DRIVER OF 9210 05:02:51,141 --> 05:02:51,575 THESE OUTCOMES. 9211 05:02:51,575 --> 05:02:55,746 AND I THINK THAT'S AN IMPORTANT 9212 05:02:55,746 --> 05:02:57,047 DISTINCTION, THAT RACE ISN'T A 9213 05:02:57,047 --> 05:02:58,716 DRIVER, IT'S HOW RACE IS TREATED 9214 05:02:58,716 --> 05:02:59,583 IN THIS COUNTRY THAT DRIVES 9215 05:02:59,583 --> 05:03:01,785 THESE OUTCOMES. 9216 05:03:01,785 --> 05:03:06,490 >> THAT'S A GREAT POINT. 9217 05:03:06,490 --> 05:03:07,925 THANK YOU FOR SHARING THAT. 9218 05:03:07,925 --> 05:03:10,327 ONE LAST THING, SO WHEN YOU LOOK 9219 05:03:10,327 --> 05:03:13,497 AT THESE STUDIES WHERE WE'RE 9220 05:03:13,497 --> 05:03:14,365 COMPARING PEOPLE, LIKE THERE'S 9221 05:03:14,365 --> 05:03:17,835 ALWAYS A TENDENCY TO COMPARE, I 9222 05:03:17,835 --> 05:03:21,004 THINK, PEOPLE BASED ON 9223 05:03:21,004 --> 05:03:22,373 ETHNICITY, AND I'M JUST 9224 05:03:22,373 --> 05:03:23,107 WONDERING IF YOU LOOK WITHIN 9225 05:03:23,107 --> 05:03:27,044 THOSE ETHNIC SUBGROUPS THAT WE 9226 05:03:27,044 --> 05:03:28,445 TRADITIONALLY DIVIDE. 9227 05:03:28,445 --> 05:03:30,080 SO DOES ANYONE KNOW OFFHAND WHAT 9228 05:03:30,080 --> 05:03:32,483 THEN -- OR THESE RATES OF 9229 05:03:32,483 --> 05:03:35,452 POVERTY OR ACCESS OR DISPARITIES 9230 05:03:35,452 --> 05:03:37,054 BASED ON -- SO IF YOU'RE LOOKING 9231 05:03:37,054 --> 05:03:40,457 AT A RURAL APPALACHIAN COUNTY IN 9232 05:03:40,457 --> 05:03:43,827 TENNESSEE OR ALABAMA WHO IS 9233 05:03:43,827 --> 05:03:44,695 LARGELY REPRESENTED BY WHITE, DO 9234 05:03:44,695 --> 05:03:47,131 THEY HAVE THE SAME RATE AND BARE 9235 05:03:47,131 --> 05:03:49,733 THE SAME OR SIMILAR BURDEN OF 9236 05:03:49,733 --> 05:03:53,203 DISEASE AS THE SAME ETHNIC 9237 05:03:53,203 --> 05:03:56,974 GROUPS THAT LIVE IN CERTAIN ZIP 9238 05:03:56,974 --> 05:03:59,343 CODES IN URBAN AREAS THAT ARE 9239 05:03:59,343 --> 05:04:02,646 TYPICALLY DISADVANTAGED? 9240 05:04:02,646 --> 05:04:05,115 >> THAT IS A POINT TO CONSIDER. 9241 05:04:05,115 --> 05:04:07,217 WE ARE ABOUT AT TIME BUT I DID 9242 05:04:07,217 --> 05:04:08,852 SEE THAT THERE WAS ONE QUESTION 9243 05:04:08,852 --> 05:04:12,122 FROM THE VIDEOCAST AND I WANT TO 9244 05:04:12,122 --> 05:04:16,059 MAKE SURE WE REPRESENT THE VIEWS 9245 05:04:16,059 --> 05:04:17,728 OF CHAT FOLKS AND THE VIDEOCAST 9246 05:04:17,728 --> 05:04:19,997 FOLKS SO I THINK I'D LIKE TO END 9247 05:04:19,997 --> 05:04:24,701 ON THIS QUESTION FROM NICOLETTE. 9248 05:04:24,701 --> 05:04:26,804 SO WE SPEND A LOT OF TIME ON OUR 9249 05:04:26,804 --> 05:04:28,305 CELL PHONES AND MOBILE DEVICES. 9250 05:04:28,305 --> 05:04:30,841 HOW CAN WE USE INTELLIGENT GAMES 9251 05:04:30,841 --> 05:04:33,710 AND GAMIFICATION TO TRANSFORM 9252 05:04:33,710 --> 05:04:34,978 PERCEPTIONS AND TO HELP 9253 05:04:34,978 --> 05:04:36,313 UNDERSERVED POPULATIONS TO BE 9254 05:04:36,313 --> 05:04:36,880 HEALTHIER? 9255 05:04:36,880 --> 05:04:39,249 SHOULD WE ATTEMPT TO CHANGE THE 9256 05:04:39,249 --> 05:04:41,552 PARADIGM FROM PUSHING FOR 9257 05:04:41,552 --> 05:04:44,388 DECREASING SCREEN TIME TO 9258 05:04:44,388 --> 05:04:46,590 INFUSING GAMES /CONTENT INTO THAT 9259 05:04:46,590 --> 05:04:48,459 SCREEN TIME THAT EMPOWER 9260 05:04:48,459 --> 05:04:49,760 INDIVIDUALS AND COMMUNITIES TO 9261 05:04:49,760 --> 05:04:52,729 MAKE HEALTHIER CHOICES AND HAVE 9262 05:04:52,729 --> 05:04:56,567 MORE INFORMED PREVENTIVE 9263 05:04:56,567 --> 05:04:57,067 DISCUSSIONS? 9264 05:04:57,067 --> 05:05:04,308 THIS IS A RE A REALLY GOOD QUES. 9265 05:05:04,308 --> 05:05:05,742 I WILL SAY USE OF GAMES FOR GOOD 9266 05:05:05,742 --> 05:05:07,644 IS SOMETHING THAT I WAS REALLY 9267 05:05:07,644 --> 05:05:09,713 INTERESTED IN, IN GRAD SCHOOL, 9268 05:05:09,713 --> 05:05:12,115 AND I THINK IT'S DEFINITELY AN 9269 05:05:12,115 --> 05:05:18,021 AREA THAT WE CAN CAPITALIZE ON. 9270 05:05:18,021 --> 05:05:19,122 YEAH, THAT INTEREST THAT 9271 05:05:19,122 --> 05:05:21,391 ESPECIALLY YOUNG PEOPLE HAVE 9272 05:05:21,391 --> 05:05:23,727 WITH, YOU KNOW, THEIR GAMES AND 9273 05:05:23,727 --> 05:05:26,797 THEIR APPS. 9274 05:05:26,797 --> 05:05:29,967 ANYONE ELSE WANT TO -- FINAL 9275 05:05:29,967 --> 05:05:32,636 THOUGHTS? 9276 05:05:32,636 --> 05:05:43,113 ABOUT THAT OR ANYTHING ELSE? 9277 05:05:50,187 --> 05:05:52,923 >> WELL, IN DUE OF TIME, WE WANT 9278 05:05:52,923 --> 05:05:55,692 TO MOVE TO OUR LAST SESSION, AND 9279 05:05:55,692 --> 05:05:58,529 IT'S OUR CLOSING SESSION. 9280 05:05:58,529 --> 05:06:02,266 THANK YOU, EVERYONE, FOR THIS 9281 05:06:02,266 --> 05:06:03,567 GREAT DISCUSSION. 9282 05:06:03,567 --> 05:06:05,769 AND SO NEXT, NOW WE'RE GOING TO 9283 05:06:05,769 --> 05:06:08,739 PROVIDE CLOSING REMARKS, AND 9284 05:06:08,739 --> 05:06:09,806 PLEASE WELCOME DR. MARIE 9285 05:06:09,806 --> 05:06:11,775 BERNARD, OUR CHIEF OFFICER OF 9286 05:06:11,775 --> 05:06:13,410 SCIENTIFIC WORKFORCE DIVERSITY 9287 05:06:13,410 --> 05:06:16,813 AT NIH. 9288 05:06:16,813 --> 05:06:18,515 >> WELL, THANK YOU VERY MUCH. 9289 05:06:18,515 --> 05:06:20,784 THIS HAS REALLY BEEN EXCITING 9290 05:06:20,784 --> 05:06:22,319 SETS OF DISCUSSIONS. 9291 05:06:22,319 --> 05:06:25,856 I AM A RECOVERING GERIATRICIAN. 9292 05:06:25,856 --> 05:06:27,824 I WAS DEPUTY DIRECTOR OF THE 9293 05:06:27,824 --> 05:06:29,426 NATIONAL INSTITUTE ON AGING FOR 9294 05:06:29,426 --> 05:06:29,693 13 YEARS. 9295 05:06:29,693 --> 05:06:31,461 IN THE LAST COUPLE YEARS, I'VE 9296 05:06:31,461 --> 05:06:32,930 BEEN SERVING AS THE NIH CHIEF 9297 05:06:32,930 --> 05:06:34,932 OFFICER FOR SCIENTIFIC WORKFORCE 9298 05:06:34,932 --> 05:06:35,299 DIVERSITY. 9299 05:06:35,299 --> 05:06:39,937 SO IT WAS WONDERFUL TO INCLUDE 9300 05:06:39,937 --> 05:06:42,105 ISSUES OF OLDER ADULTS BASED 9301 05:06:42,105 --> 05:06:43,707 UPON RACE/ETHNICITY, GENDER, I 9302 05:06:43,707 --> 05:06:44,308 HOPE THERE WAS DISCUSSION OF 9303 05:06:44,308 --> 05:06:44,708 CHILDREN. 9304 05:06:44,708 --> 05:06:46,944 BUT I'M GOING TO TALK ABOUT VERY 9305 05:06:46,944 --> 05:06:48,812 BRIEFLY WHAT WE ARE CURRENTLY 9306 05:06:48,812 --> 05:06:52,015 DOING AT NIH, JUST TO MAKE SURE 9307 05:06:52,015 --> 05:06:55,953 THAT EVERYONE IS AWARE. 9308 05:06:55,953 --> 05:06:59,790 SO I'LL START OFF WITH TALKING 9309 05:06:59,790 --> 05:07:02,092 ABOUT ADUCANUMAB. 9310 05:07:02,092 --> 05:07:06,463 I'M GLAD ROB CALIFF HAS LEFT, 9311 05:07:06,463 --> 05:07:08,565 THIS IS A DRUG THAT RECEIVED 9312 05:07:08,565 --> 05:07:10,434 ACCELERATED APPROVAL FROM THE 9313 05:07:10,434 --> 05:07:12,736 FDA BECAUSE OF THE IMPACT THAT 9314 05:07:12,736 --> 05:07:14,905 IT HAD ON AMYLOID PLAQUES. 9315 05:07:14,905 --> 05:07:16,640 AGAIN AS I SAID, I'M A 9316 05:07:16,640 --> 05:07:18,942 RECOVERING GERIATRICIAN. 9317 05:07:18,942 --> 05:07:19,676 WITH ALZHEIMER'S DISEASE, WE 9318 05:07:19,676 --> 05:07:22,312 KNOW THAT VERY EARLY ON, PEOPLE 9319 05:07:22,312 --> 05:07:26,950 GET THESE AMYLOID PLAQUES AND 9320 05:07:26,950 --> 05:07:28,585 TAU TANGLES, AND THE THEORY WAS 9321 05:07:28,585 --> 05:07:29,720 IF YOU COULD PREVENT THE 9322 05:07:29,720 --> 05:07:31,488 DEVELOPMENT OF THE PLAQUES, THAT 9323 05:07:31,488 --> 05:07:33,523 YOU MIGHT SLOW OR PREVENT THE 9324 05:07:33,523 --> 05:07:34,091 DEVELOPMENT OF THE DISEASE. 9325 05:07:34,091 --> 05:07:36,393 IT'S A VERY CONTROVERSIAL COUPLE 9326 05:07:36,393 --> 05:07:39,129 OF TRIALS THAT LED TO AN 9327 05:07:39,129 --> 05:07:41,865 ACCELERATED APPROVAL OF THE DRUG 9328 05:07:41,865 --> 05:07:44,067 BASED UPON WORK ON PEOPLE WHO 9329 05:07:44,067 --> 05:07:45,702 HAD MILD COGNITIVE IMPAIRMENT, 9330 05:07:45,702 --> 05:07:47,270 MEANING JUST -- THEY WERE 9331 05:07:47,270 --> 05:07:49,206 COGNITIVELY IMPAIRED BUT NOT 9332 05:07:49,206 --> 05:07:51,708 WITH DEMENTIA, OR MAYBE EARLY 9333 05:07:51,708 --> 05:07:52,175 ALZHEIMER'S DISEASE. 9334 05:07:52,175 --> 05:07:54,611 IT WAS INITIALLY APPROVED 9335 05:07:54,611 --> 05:07:55,812 BROADLY AND THEN AGAIN VERY 9336 05:07:55,812 --> 05:07:57,581 CONTROVERSIALLY IT WAS APPROVED 9337 05:07:57,581 --> 05:07:59,983 FOR MEDICARE COVERAGE IN A 9338 05:07:59,983 --> 05:08:02,819 CLINICAL TRIAL, BECAUSE THERE IS 9339 05:08:02,819 --> 05:08:03,420 SO MUCH CONTROVERSY ABOUT THE 9340 05:08:03,420 --> 05:08:03,620 DATA. 9341 05:08:03,620 --> 05:08:05,088 I WILL NOT ADDRESS THE DATA, BUT 9342 05:08:05,088 --> 05:08:07,724 I WILL ADDRESS WHO WAS INCLUDED 9343 05:08:07,724 --> 05:08:08,325 IN THE TRIALS. 9344 05:08:08,325 --> 05:08:11,261 ONE OF THE BIG ISSUES IS THAT 9345 05:08:11,261 --> 05:08:12,029 UNDERREPRESENTED GROUPS AND, 9346 05:08:12,029 --> 05:08:13,964 YES, WE USE RACE AND ETHNICITY 9347 05:08:13,964 --> 05:08:16,433 AS A MARKER FOR SOCIOECONOMIC 9348 05:08:16,433 --> 05:08:20,904 STATUS IN MANY CASES, THEY OFTEN 9349 05:08:20,904 --> 05:08:22,372 EXPERIENCED MISSED OR DELAYED 9350 05:08:22,372 --> 05:08:23,540 DIAGNOSES OF DEMENTIA COMPARED 9351 05:08:23,540 --> 05:08:25,409 TO NON-HISPANIC WHITES. 9352 05:08:25,409 --> 05:08:27,511 FOR NON-HISPANIC WHITES, A LOT 9353 05:08:27,511 --> 05:08:28,679 OF PEOPLE HAVE THE DIAGNOSIS 9354 05:08:28,679 --> 05:08:29,246 MISSED. 9355 05:08:29,246 --> 05:08:31,748 41% HAVE THE DIAGNOSIS MISSED. 9356 05:08:31,748 --> 05:08:34,184 BUT 46% OF NON-HISPANIC BLACKS 9357 05:08:34,184 --> 05:08:36,586 AND 54% OF HISPANICS DO NOT GET 9358 05:08:36,586 --> 05:08:38,789 THAT DIAGNOSIS EARLY ON, AND 9359 05:08:38,789 --> 05:08:41,058 JUST BASED UPON THAT, IT WOULD 9360 05:08:41,058 --> 05:08:42,826 SKEW A STUDY OF THE SORT IN 9361 05:08:42,826 --> 05:08:46,963 TERMS OF HAVING REPRESENTATIVE 9362 05:08:46,963 --> 05:08:47,764 NUMBERS. 9363 05:08:47,764 --> 05:08:52,035 AND THEN WHEN YOU LOOK AT WHO 9364 05:08:52,035 --> 05:08:53,904 ACTUALLY PARTICIPATE IN THE 9365 05:08:53,904 --> 05:08:54,871 STUDY, 89% OF THE PARTICIPANTS 9366 05:08:54,871 --> 05:08:57,407 WERE NON-HISPANIC WHITES, 9% 9367 05:08:57,407 --> 05:08:58,608 WERE ASIAN, LEAVING A VERY SMALL 9368 05:08:58,608 --> 05:08:59,876 PERCENTAGE FOR OTHER GROUPS, AND 9369 05:08:59,876 --> 05:09:01,878 YET WHEN YOU LOOK AT THE DATA, 9370 05:09:01,878 --> 05:09:03,914 WITH REGARDS TO THE PREVALENCE 9371 05:09:03,914 --> 05:09:05,515 OF ALZHEIMER'S DISEASE IN THE 9372 05:09:05,515 --> 05:09:09,052 UNITED STATES, YOU FIND THAT THE 9373 05:09:09,052 --> 05:09:11,121 HIGHEST PREVALENCE IS AMONG 9374 05:09:11,121 --> 05:09:13,023 AFRICAN AMERICANS AND BLACKS, 9375 05:09:13,023 --> 05:09:15,992 AND HISPANICS, AND MUCH LOWER 9376 05:09:15,992 --> 05:09:17,427 PREVALENCE IN NON-HISPANIC 9377 05:09:17,427 --> 05:09:19,596 WHITES AND ASIANS, BEGGING THE 9378 05:09:19,596 --> 05:09:23,533 QUESTION, WAS THE POPULATION 9379 05:09:23,533 --> 05:09:24,201 TRULY A REPRESENTATIVE 9380 05:09:24,201 --> 05:09:25,202 POPULATION? 9381 05:09:25,202 --> 05:09:26,303 WHY WAS THAT? 9382 05:09:26,303 --> 05:09:28,271 I WILL PUT FORTH THAT PART OF 9383 05:09:28,271 --> 05:09:30,640 THE ISSUE IS THAT THERE WAS NOT 9384 05:09:30,640 --> 05:09:32,642 A VERY DIVERSE SCIENTIFIC TEAM. 9385 05:09:32,642 --> 05:09:34,778 I CAN TELL YOU WHEN YOU LOOK AT 9386 05:09:34,778 --> 05:09:36,179 WHO THE INVESTIGATORS ARE IN 9387 05:09:36,179 --> 05:09:37,714 ALZHEIMER'S, IT'S FAIR LEA 9388 05:09:37,714 --> 05:09:38,582 HOMOGENEOUS. 9389 05:09:38,582 --> 05:09:40,150 THE NATIONAL INSTITUTE ON AGING 9390 05:09:40,150 --> 05:09:41,118 IS TRYING TO WORK ON THAT. 9391 05:09:41,118 --> 05:09:42,319 BUT THAT'S AN IMPORTANT ISSUE 9392 05:09:42,319 --> 05:09:45,388 AND IT'S BEEN RAISED HERE, THAT 9393 05:09:45,388 --> 05:09:47,090 BLACK AFRICAN AMERICAN HISPANIC 9394 05:09:47,090 --> 05:09:48,058 AND NATIVE AMERICAN PHYSICIANS 9395 05:09:48,058 --> 05:09:49,926 ARE MORE LIKELY THAN WHITE 9396 05:09:49,926 --> 05:09:51,762 PHYSICIANS TO PRACTICE IN 9397 05:09:51,762 --> 05:09:53,463 UNDERSERVED COMMUNITIES. 9398 05:09:53,463 --> 05:09:54,998 AND THAT THE PATIENTS WHO HAVE A 9399 05:09:54,998 --> 05:09:56,867 CHOICE ARE MORE LIKELY TO SELECT 9400 05:09:56,867 --> 05:09:59,035 A HEALTHCARE PROFESSIONAL OF 9401 05:09:59,035 --> 05:10:00,570 THEIR OWN RACIAL OR ETHNIC 9402 05:10:00,570 --> 05:10:01,238 BACKGROUND. 9403 05:10:01,238 --> 05:10:02,773 AND I THINK THAT TRANSLATES INTO 9404 05:10:02,773 --> 05:10:05,842 RESEARCH AS WELL, ALTHOUGH IT 9405 05:10:05,842 --> 05:10:06,843 WOULD BE NICE TO HAVE SOME 9406 05:10:06,843 --> 05:10:10,447 REALLY GOOD SOLID DATA ABOUT 9407 05:10:10,447 --> 05:10:12,182 THAT. 9408 05:10:12,182 --> 05:10:14,384 WE AS NIH THINK IT'S REALLY 9409 05:10:14,384 --> 05:10:15,385 IMPORTANT TO HAVE DIVERSE 9410 05:10:15,385 --> 05:10:16,386 PERSPECTIVES, DIVERSE TEAMS 9411 05:10:16,386 --> 05:10:17,554 CONDUCTING THE SCIENCE. 9412 05:10:17,554 --> 05:10:19,623 I'M NOT -- I DIDN'T INCLUDE ALL 9413 05:10:19,623 --> 05:10:20,557 OF MY DATA SLIDES, BUT IF YOU 9414 05:10:20,557 --> 05:10:22,526 WANT TO SEE THE DATA, TAKE A 9415 05:10:22,526 --> 05:10:25,862 LOOK AT NATURE MEDICINE, 9416 05:10:25,862 --> 05:10:27,063 NOVEMBER 2021 AND AN ARTICLE 9417 05:10:27,063 --> 05:10:31,001 WHERE LARRY TABAK, ALFRED 9418 05:10:31,001 --> 05:10:31,968 JOHNSON AND I TALKED ABOUT THE 9419 05:10:31,968 --> 05:10:34,070 NEEDS FOR DIVERSE PERSPECTIVES. 9420 05:10:34,070 --> 05:10:36,139 WHAT WE'RE TRYING TO ADDRESS IN 9421 05:10:36,139 --> 05:10:38,141 BIOMEDICAL RESEARCH AND 9422 05:10:38,141 --> 05:10:38,708 BEHAVIORAL RESEARCH IS LIKE 9423 05:10:38,708 --> 05:10:40,110 TRYING TO DESCRIBE AN ELEPHANT 9424 05:10:40,110 --> 05:10:40,577 WITHOUT SIGHT. 9425 05:10:40,577 --> 05:10:42,312 YOU HAVE TO COME AT IT IN A LOT 9426 05:10:42,312 --> 05:10:43,547 OF DIFFERENT WAYS. 9427 05:10:43,547 --> 05:10:45,515 PART OF WHAT WE'RE DOING TO MAKE 9428 05:10:45,515 --> 05:10:48,685 THIS HAPPEN IS THAT WE HAVE A 9429 05:10:48,685 --> 05:10:50,887 DIVERSITY, EQUITY, INCLUSION AND 9430 05:10:50,887 --> 05:10:51,755 ACCESSIBILITY STRATEGIC PLAN 9431 05:10:51,755 --> 05:10:52,756 THAT WAS JUST PUBLISHED. 9432 05:10:52,756 --> 05:10:56,393 IT LAYS OUT THE FRAMEWORK FOR 9433 05:10:56,393 --> 05:10:57,260 WHAT WE WILL BE DOING HERE AT 9434 05:10:57,260 --> 05:10:58,562 NIH FOR THE NEXT FIVE YEARS. 9435 05:10:58,562 --> 05:11:01,898 IT INCLUDES EVERYTHING THAT THE 9436 05:11:01,898 --> 05:11:03,300 INSTITUTES AND CENTERS ARE 9437 05:11:03,300 --> 05:11:04,734 DOING, THAT THE VERY SPECIAL 9438 05:11:04,734 --> 05:11:05,936 OFFICES LIKE MINE ARE DOING. 9439 05:11:05,936 --> 05:11:07,470 ONE OF THE THINGS THAT'S 9440 05:11:07,470 --> 05:11:08,238 HIGHLIGHTED IN THAT IS SOMETHING 9441 05:11:08,238 --> 05:11:09,573 CALLED THE COMMUNITY ENGAGEMENT 9442 05:11:09,573 --> 05:11:11,208 ALLIANCE THAT GOT STARTED DURING 9443 05:11:11,208 --> 05:11:13,276 THE HEIGHT OF THE COVID 9444 05:11:13,276 --> 05:11:13,743 PANDEMIC. 9445 05:11:13,743 --> 05:11:18,748 YES, AS HAS BEEN DISCUSSED, NIH 9446 05:11:18,748 --> 05:11:20,083 RESEARCH IS OFTEN HELICOPTERED 9447 05:11:20,083 --> 05:11:22,118 IN AND HELICOPTERED OUT. 9448 05:11:22,118 --> 05:11:22,786 IT WAS REALLY CLEAR WHEN THERE 9449 05:11:22,786 --> 05:11:26,556 WAS A NEED TO MAKE OUTREACH TO 9450 05:11:26,556 --> 05:11:28,091 POPULATIONS WHO WERE 9451 05:11:28,091 --> 05:11:28,925 DISPROPORTIONATELY IMPACTED, YOU 9452 05:11:28,925 --> 05:11:30,193 NEED TO WORK WITH PEOPLE IN THE 9453 05:11:30,193 --> 05:11:30,660 COMMUNITY. 9454 05:11:30,660 --> 05:11:34,264 IT WAS ALSO VERY CLEAR THAT JUST 9455 05:11:34,264 --> 05:11:35,899 HELICOPTERS OUT WOULD NOT BE 9456 05:11:35,899 --> 05:11:37,534 SATISFACTORY SO THE INTENT HERE 9457 05:11:37,534 --> 05:11:39,336 IS TO KEEP THIS ALLIANCE GOING. 9458 05:11:39,336 --> 05:11:40,637 AND THEN WE HAVE THE NIH UNITE 9459 05:11:40,637 --> 05:11:41,838 INITIATIVE THAT I HAVE THE 9460 05:11:41,838 --> 05:11:43,840 PRIVILEGE OF CO-LEADING. 9461 05:11:43,840 --> 05:11:46,176 UNITE IS AN INITIATIVE WITH A 9462 05:11:46,176 --> 05:11:47,677 VERY BOLD GOAL OF ENDING 9463 05:11:47,677 --> 05:11:49,179 STRUCTURAL RACISM. 9464 05:11:49,179 --> 05:11:52,349 IT WAS BORN FROM WHAT WE SAW IN 9465 05:11:52,349 --> 05:11:53,817 THE SPRING OF 2020, WITH 9466 05:11:53,817 --> 05:11:56,686 DISPROPORTIONATE MORBIDITY AND 9467 05:11:56,686 --> 05:11:59,055 MORTALITY, DEATHS, SEVERE 9468 05:11:59,055 --> 05:12:01,091 HOSPITALIZATIONS FOR PEOPLE, 9469 05:12:01,091 --> 05:12:02,692 AFRICAN AMERICANS AND BLACK, 9470 05:12:02,692 --> 05:12:04,661 HISPANIC, LATINOS, AMERICAN 9471 05:12:04,661 --> 05:12:07,097 INDIAS, ALASKA NATIVES, AND THEN 9472 05:12:07,097 --> 05:12:09,466 PUNCTUATED BY THE VIDEOTAPED 9473 05:12:09,466 --> 05:12:10,467 MURDER OF GEORGE FLOYD. 9474 05:12:10,467 --> 05:12:13,136 AND WE SPENT A LOT OF TIME, 9475 05:12:13,136 --> 05:12:14,671 PEOPLE ACROSS THE COUNTRY DID, 9476 05:12:14,671 --> 05:12:15,872 SEARCHING OUR SOUL, TRYING TO 9477 05:12:15,872 --> 05:12:17,641 FIGURE OUT WHAT WE SHOULD DO 9478 05:12:17,641 --> 05:12:17,941 ABOUT THIS. 9479 05:12:17,941 --> 05:12:20,277 AND CAME UP WITH THIS GOAL. 9480 05:12:20,277 --> 05:12:22,445 WE RECOGNIZE THAT SYSTEMIC 9481 05:12:22,445 --> 05:12:25,415 RACISM OR STRUCTURAL RACISM IS 9482 05:12:25,415 --> 05:12:27,517 MUCH BROADER ISSUE THAN NIH 9483 05:12:27,517 --> 05:12:28,818 ALONE CAN SOLVE BUT WE ARE THE 9484 05:12:28,818 --> 05:12:31,621 LARGEST FUNDER OF BIOMEDICAL AND 9485 05:12:31,621 --> 05:12:32,155 BEHAVIORAL RESEARCH IN THE 9486 05:12:32,155 --> 05:12:34,457 UNITED STATES, AND WE ARE INTENT 9487 05:12:34,457 --> 05:12:37,294 UPON USING OUR INFLUENCE TO MAKE 9488 05:12:37,294 --> 05:12:39,896 A DIFFERENCE IN THESE FOUR 9489 05:12:39,896 --> 05:12:41,164 CONTENT AREAS: MINORITY HEALTH 9490 05:12:41,164 --> 05:12:43,099 AND HEALTH DISPARITIES RESEARCH, 9491 05:12:43,099 --> 05:12:44,601 WE'VE DONE A LOT OF LOOKING AT 9492 05:12:44,601 --> 05:12:49,706 THE PROBLEMS TO MAKE A 9493 05:12:49,706 --> 05:12:50,774 DIFFERENCE. 9494 05:12:50,774 --> 05:12:52,008 GETTING OUR OWN INTERNAL 9495 05:12:52,008 --> 05:12:53,310 WORKFORCE IN PLACE AND DOING 9496 05:12:53,310 --> 05:12:54,611 THINGS FOR THE EXTERNAL 9497 05:12:54,611 --> 05:12:55,278 WORKFORCE. 9498 05:12:55,278 --> 05:12:56,446 ALL PEOPLE DRIVEN AND PEOPLE 9499 05:12:56,446 --> 05:12:57,647 FOCUSED AND DATA-DRIVEN. 9500 05:12:57,647 --> 05:12:59,416 SOME OF THE DATA THAT WE'VE 9501 05:12:59,416 --> 05:13:01,084 LOOKED AT ARE DATA SUCH AS THESE 9502 05:13:01,084 --> 05:13:03,820 THAT SHOW THE LONG-STANDING 9503 05:13:03,820 --> 05:13:04,854 DIFFERENCE IN LONGEVITY FOR 9504 05:13:04,854 --> 05:13:06,656 AFRICAN AMERICANS AND BLACKS 9505 05:13:06,656 --> 05:13:08,058 VERSUS NON-HISPANIC WHITES 9506 05:13:08,058 --> 05:13:10,260 VERSUS LATINOS HISPANICS. 9507 05:13:10,260 --> 05:13:12,195 IN FACT, THIS IS CALL WOULD THE 9508 05:13:12,195 --> 05:13:14,464 LATINO PARADOX, BECAUSE LATINO 9509 05:13:14,464 --> 05:13:15,565 HISPANICS HAVE THE SAME BURDEN 9510 05:13:15,565 --> 05:13:18,501 OF HYPERTENSION AND DIABETES OF 9511 05:13:18,501 --> 05:13:21,805 AFRICAN AMERICANS OR BLACKS AND 9512 05:13:21,805 --> 05:13:23,673 YET GREATER LONGEVITY, THOUGH 9513 05:13:23,673 --> 05:13:26,076 EVERYONE SUFFERED AS A RESULT OF 9514 05:13:26,076 --> 05:13:26,409 THE PANDEMIC. 9515 05:13:26,409 --> 05:13:27,844 HERE IS A LINE OF NON-HISPANIC 9516 05:13:27,844 --> 05:13:29,813 WHITES, IT WAS APPEARING THAT 9517 05:13:29,813 --> 05:13:31,614 HISPANIC LATINOS MIGHT BE LOSING 9518 05:13:31,614 --> 05:13:32,148 THE ADVANTAGE THAT THEY 9519 05:13:32,148 --> 05:13:35,418 PREVIOUSLY HAD. 9520 05:13:35,418 --> 05:13:36,953 SO, AS A RESULT OF THOUGHTS FROM 9521 05:13:36,953 --> 05:13:40,056 UNITE, WE FIRST HAD SOME COMMON 9522 05:13:40,056 --> 05:13:41,124 FUND INITIATIVES FOR 9523 05:13:41,124 --> 05:13:42,425 TRANSFORMATIVE RESEARCH IN 9524 05:13:42,425 --> 05:13:44,894 HEALTH DISPARITIES AND MINORITY 9525 05:13:44,894 --> 05:13:47,364 HEALTH, SOME $58 MILLION OVER 9526 05:13:47,364 --> 05:13:48,131 FIVE YEARS. 9527 05:13:48,131 --> 05:13:49,666 THE UNITE TEAM SAID THAT'S 9528 05:13:49,666 --> 05:13:57,173 REALLY NOT ENOUGH, AND WE RELY 9529 05:13:57,173 --> 05:13:58,475 HAPPILY -- THE COMPASS, THE 9530 05:13:58,475 --> 05:13:59,809 COMMUNITY LED HEALTH EQUITY 9531 05:13:59,809 --> 05:14:01,277 STRUCTURAL INTERVENTIONS, UP TO 9532 05:14:01,277 --> 05:14:02,812 25 COMMUNITIES WILL SAY THIS IS 9533 05:14:02,812 --> 05:14:03,880 WHAT WE SEE AS A PROBLEM, THIS 9534 05:14:03,880 --> 05:14:06,182 IS WHAT WE WANT TO HAVE DONE. 9535 05:14:06,182 --> 05:14:08,718 PARTNERING WITH ACADEMIC HUBS 9536 05:14:08,718 --> 05:14:09,352 AND A COORDINATING CENTER TO 9537 05:14:09,352 --> 05:14:11,554 MAKE SURE THAT THIS ALL GOES 9538 05:14:11,554 --> 05:14:14,224 SMOOTHLY SO WE CAN LEARN WHAT AS 9539 05:14:14,224 --> 05:14:20,663 WORKS AND HOPEFULLY HAVE SOME -- 9540 05:14:20,663 --> 05:14:22,198 NOFOs AS WE'RE NOW CALLING 9541 05:14:22,198 --> 05:14:22,532 THEM. 9542 05:14:22,532 --> 05:14:24,134 WE WERE ALSO VERY IMPRESSED WITH 9543 05:14:24,134 --> 05:14:25,602 WHAT THE NIH-WIDE BRAIN 9544 05:14:25,602 --> 05:14:27,837 INITIATIVE DID IN WHAT'S CALLED 9545 05:14:27,837 --> 05:14:30,006 THE DEVELOPMENT OF PLANS TO 9546 05:14:30,006 --> 05:14:31,107 ENHANCE DIVERSE PERSPECTIVES. 9547 05:14:31,107 --> 05:14:33,510 THEY WERE LOOKING AT WHO WERE 9548 05:14:33,510 --> 05:14:35,645 THE PEOPLE IN THEIR CLINICAL 9549 05:14:35,645 --> 05:14:37,347 STUDIES, WHO WERE THE PEOPLE IN 9550 05:14:37,347 --> 05:14:38,681 THEIR AUTOPSY STUDIES, AND THEY 9551 05:14:38,681 --> 05:14:40,450 FOUND THEY WERE PRETTY 9552 05:14:40,450 --> 05:14:41,651 HOMOGENEOUS. 9553 05:14:41,651 --> 05:14:42,318 AND THEY STEPPED BACK AND THEY 9554 05:14:42,318 --> 05:14:45,288 LOOKED AT IT AND THEY FELT THAT 9555 05:14:45,288 --> 05:14:46,489 THAT'S BECAUSE THEIR SCIENTISTS 9556 05:14:46,489 --> 05:14:48,024 WERE PRETTY HOMOGENEOUS. 9557 05:14:48,024 --> 05:14:49,993 SO THEY WANTED TO DO SOMETHING 9558 05:14:49,993 --> 05:14:51,761 TO ENHANCE THE DIVERSITY OF 9559 05:14:51,761 --> 05:14:53,530 THEIR SCIENTISTS WHO ARE 9560 05:14:53,530 --> 05:14:55,065 INVOLVED IN THE BRAIN INITIATIVE 9561 05:14:55,065 --> 05:14:56,800 AND CAME UP WITH PLANS TO 9562 05:14:56,800 --> 05:14:59,135 ENHANCE DIVERSE PERSPECTIVES AS 9563 05:14:59,135 --> 05:15:00,336 AN EXPECTATION WHEN PEOPLE WERE 9564 05:15:00,336 --> 05:15:01,471 APPLYING FOR GRANTS THROUGH THE 9565 05:15:01,471 --> 05:15:02,305 BRAIN INITIATIVE. 9566 05:15:02,305 --> 05:15:03,973 THE OFFICE OF GENERAL COUNSEL, 9567 05:15:03,973 --> 05:15:04,974 WE'RE CLOSELY WITH THEM, AND 9568 05:15:04,974 --> 05:15:07,377 WHEN THEY TALK ABOUT DIVERSE 9569 05:15:07,377 --> 05:15:09,813 PERSPECTIVES, THEY'RE TALKING 9570 05:15:09,813 --> 05:15:11,981 ABOUT DIVERSITY BY GEOGRAPHY, BY 9571 05:15:11,981 --> 05:15:13,850 DISCIPLINE, YES AND KEEPING WITH 9572 05:15:13,850 --> 05:15:15,618 THE NOTICE OF SPECIAL INTEREST 9573 05:15:15,618 --> 05:15:16,753 FROM NIH THAT INCLUDES GENDER, 9574 05:15:16,753 --> 05:15:18,188 RACE, ETHNICITY, DISABILITY, 9575 05:15:18,188 --> 05:15:20,523 COMING FROM A DISADVANTAGED 9576 05:15:20,523 --> 05:15:22,692 BACKGROUND. 9577 05:15:22,692 --> 05:15:24,027 AND THIS -- THE BRAIN INITIATIVE 9578 05:15:24,027 --> 05:15:28,498 IS USED IN SCORING THE GRANTS. 9579 05:15:28,498 --> 05:15:30,567 YOU ALL DO HUMAN SUBJECT 9580 05:15:30,567 --> 05:15:32,402 RESEARCH, YOU KNOW WITH HUMAN 9581 05:15:32,402 --> 05:15:36,673 SUBJECT RESEARCH YOU REVIEW, 9582 05:15:36,673 --> 05:15:40,677 SCORE SEPARATELY IS INCLUSION 9583 05:15:40,677 --> 05:15:41,845 ACCEPTABLE OR NOT. 9584 05:15:41,845 --> 05:15:44,814 THE DIVERSITY OF THE TEAM, THE 9585 05:15:44,814 --> 05:15:45,882 DIVERSE PERSPECTIVES OF THE TEAM 9586 05:15:45,882 --> 05:15:49,319 ARE CONSIDERED AT EVERY PHASE OF 9587 05:15:49,319 --> 05:15:50,753 THE EVALUATION AND PART OF THE 9588 05:15:50,753 --> 05:15:52,155 SCORING. 9589 05:15:52,155 --> 05:15:54,457 UNITE IS ADVOCATING FOR ALL THE 9590 05:15:54,457 --> 05:15:55,492 INSTITUTES AND CENTERS TO 9591 05:15:55,492 --> 05:15:57,527 INCLUDE THIS IN THEIR NOFOS AND 9592 05:15:57,527 --> 05:15:59,329 I KNOW THERE ARE A COUPLE OF 9593 05:15:59,329 --> 05:16:00,730 ICs VERY AGGRESSIVELY GOING 9594 05:16:00,730 --> 05:16:01,631 ABOUT THAT. 9595 05:16:01,631 --> 05:16:03,933 WE ALSO HAVE EXPANDED WHAT'S 9596 05:16:03,933 --> 05:16:06,302 CALLED THE SCIENCE EDUCATION 9597 05:16:06,302 --> 05:16:07,170 PARTNERSHIP AWARDS, THE SEPA 9598 05:16:07,170 --> 05:16:14,010 AUTOIMMUNE AWARDS, NOW THERE AR7 9599 05:16:14,010 --> 05:16:14,777 INSTITUTES AND CENTERS THAT ARE 9600 05:16:14,777 --> 05:16:15,645 DOING THIS. 9601 05:16:15,645 --> 05:16:17,280 RECOGNIZING THAT SCIENCE 9602 05:16:17,280 --> 05:16:18,815 IDENTITY IS OFTEN DEVELOPED AS 9603 05:16:18,815 --> 05:16:20,250 EARLY AS MIDDLE SCHOOL, AND 9604 05:16:20,250 --> 05:16:24,420 THERE'S QUITE A BIT OF DIVERSITY 9605 05:16:24,420 --> 05:16:28,291 AMONG BID EL SCHMIDDLE SCHOOLER. 9606 05:16:28,291 --> 05:16:29,926 IT'S IMPORTANT TO GET THEM 9607 05:16:29,926 --> 05:16:31,494 ENERGIZED AS THIS IS ONE MEANS 9608 05:16:31,494 --> 05:16:31,828 OF DOING THAT. 9609 05:16:31,828 --> 05:16:32,929 WE'VE ALSO WITHIN THE LAST 10 9610 05:16:32,929 --> 05:16:35,565 DAYS HAVE THIS NEWLY RELEASED 9611 05:16:35,565 --> 05:16:38,968 NOFO FOR RESEARCH ACTIVITIES 9612 05:16:38,968 --> 05:16:39,736 RELATED TO DIVERSITY. 9613 05:16:39,736 --> 05:16:41,838 AN OPPORTUNITY FOR SCIENTISTS 9614 05:16:41,838 --> 05:16:44,107 WHO DON'T HAVE NIH FUNDING TO 9615 05:16:44,107 --> 05:16:47,443 GET FUNDED AND RECOGNIZE THE 9616 05:16:47,443 --> 05:16:48,378 WORK IN DIVERSITY. 9617 05:16:48,378 --> 05:16:53,883 SO THIS IS A REAL OPPORTUNITY 9618 05:16:53,883 --> 05:16:56,853 FOR HBCUs, TRIBAL COLLEGES AND 9619 05:16:56,853 --> 05:16:58,388 UNIVERSITY, IT'S A GREAT PARTNER 9620 05:16:58,388 --> 05:16:59,722 TO AN ADMINISTRATIVE SUPPLEMENT 9621 05:16:59,722 --> 05:17:01,157 THAT MY TEAM HAS BEEN GIVING, 9622 05:17:01,157 --> 05:17:02,258 AND YES, THIS WILL HELP TO 9623 05:17:02,258 --> 05:17:04,027 SUPPORT THE MENTORING THAT'S 9624 05:17:04,027 --> 05:17:06,129 REALLY ESSENTIAL FOR SUCCESS 9625 05:17:06,129 --> 05:17:09,832 BECAUSE MENTORING IS NOT USUALLY 9626 05:17:09,832 --> 05:17:11,801 COMPENSATED. 9627 05:17:11,801 --> 05:17:13,469 ADDITIONALLY, JUST IN THE LAST 9628 05:17:13,469 --> 05:17:14,370 10 DAYS, THERE'S A NOTICE OF 9629 05:17:14,370 --> 05:17:16,039 FUNDING OPPORTUNITY FOR 9630 05:17:16,039 --> 05:17:16,906 INSTRUMENTATION GRANTS FOR 9631 05:17:16,906 --> 05:17:18,107 RESOURCE LIMITED INSTITUTIONS. 9632 05:17:18,107 --> 05:17:19,842 AGAIN, SOME OF THE INSTITUTIONS 9633 05:17:19,842 --> 05:17:22,212 WE'RE TALKING ABOUT, HBCUs, 9634 05:17:22,212 --> 05:17:24,280 TRIBAL COLLEGES AND 9635 05:17:24,280 --> 05:17:27,183 UNIVERSITIES, AND THEN WE HAVE A 9636 05:17:27,183 --> 05:17:30,220 PRIZE COMPETITION FOR 9637 05:17:30,220 --> 05:17:31,821 INSTITUTIONAL EXCELLENCE IN 9638 05:17:31,821 --> 05:17:32,455 DIVERSITY, EQUITY AND INCLUSION 9639 05:17:32,455 --> 05:17:33,523 AND ACCESSIBILITY AND WE HOPE TO 9640 05:17:33,523 --> 05:17:36,492 BE ANNOUNCING IF THE VERY NEAR 9641 05:17:36,492 --> 05:17:37,293 FUTURE, SO THAT'S A SPACE TO 9642 05:17:37,293 --> 05:17:37,727 WATCH. 9643 05:17:37,727 --> 05:17:38,928 THERE ARE SOME CONCEPTS THAT 9644 05:17:38,928 --> 05:17:43,366 HAVE BEEN APPROVED BY THE NIGMS 9645 05:17:43,366 --> 05:17:46,202 AND BY THE NIMHD COUNCIL, AND 9646 05:17:46,202 --> 05:17:47,303 ONCE A CONCEPT HAS BEEN APPROVED 9647 05:17:47,303 --> 05:17:49,872 BY AN ADVISORY COUNCIL, THE VAST 9648 05:17:49,872 --> 05:17:51,841 MAJORITY OF CASES IT ENDS UP 9649 05:17:51,841 --> 05:17:53,543 BEING A NOTICE OF FUNDING 9650 05:17:53,543 --> 05:17:54,010 OPPORTUNITY. 9651 05:17:54,010 --> 05:17:59,215 ONE IS AN INSTITUTIONAL CLIMATE 9652 05:17:59,215 --> 05:18:00,383 GRANT LIKE THE FIRST INITIATIVE 9653 05:18:00,383 --> 05:18:04,487 THAT WAS MENTIONED, JUST NOT 9654 05:18:04,487 --> 05:18:05,555 WITH FUNDS FOR GROUPS BUT IT 9655 05:18:05,555 --> 05:18:08,358 HELPS TO LOOK AT THE CLIMATE AND 9656 05:18:08,358 --> 05:18:09,993 MAKE IT RECEPTIVE FOR A NUMBER 9657 05:18:09,993 --> 05:18:12,729 OF SCIENTISTS. 9658 05:18:12,729 --> 05:18:14,364 RESEARCH CAPACITY BUILDING 9659 05:18:14,364 --> 05:18:15,465 PROGRAM TO ENHANCE WORKFORCE 9660 05:18:15,465 --> 05:18:17,834 DIVERSITY JUST APPROVED BY THE 9661 05:18:17,834 --> 05:18:19,736 NIGMS COUNCIL IN FEBRUARY TO 9662 05:18:19,736 --> 05:18:21,070 TARGET LOW RESOURCE INSTITUTIONS 9663 05:18:21,070 --> 05:18:23,039 FROM WHAT I UNDERSTAND. 9664 05:18:23,039 --> 05:18:24,040 AND AN INSTITUTIONAL RESEARCH 9665 05:18:24,040 --> 05:18:25,475 CAPACITY BUILDING NEEDS 9666 05:18:25,475 --> 05:18:27,243 ASSESSMENT AND ACTION PLAN 9667 05:18:27,243 --> 05:18:28,878 DEVELOPMENT GRANTS, VERY 9668 05:18:28,878 --> 05:18:29,679 SPECIFICALLY MEANT TO ADDRESS 9669 05:18:29,679 --> 05:18:31,881 THE NEEDS OF, AGAIN, LOWER 9670 05:18:31,881 --> 05:18:35,952 RESOURCE INSTITUTIONS THAT NEED 9671 05:18:35,952 --> 05:18:38,888 ADDITIONAL -- WE TALKED EARLIER 9672 05:18:38,888 --> 05:18:40,423 ABOUT INFRASTRUCTURE RESOURCES, 9673 05:18:40,423 --> 05:18:43,760 THIS IS TARGETED TOWARDS THOSE 9674 05:18:43,760 --> 05:18:45,295 INSTITUTIONS. 9675 05:18:45,295 --> 05:18:46,496 THERE'S A LOT THAT'S GOING ON. 9676 05:18:46,496 --> 05:18:48,031 I WOULD REALLY ENCOURAGE YOU TO 9677 05:18:48,031 --> 05:18:49,465 JUST GOOGLE NIH UNITE. 9678 05:18:49,465 --> 05:18:50,266 TAKE A LOOK AT THE PROGRESS 9679 05:18:50,266 --> 05:18:51,034 REPORT. 9680 05:18:51,034 --> 05:18:54,971 IT'S AN ECK SA S EXCITING TIME,A 9681 05:18:54,971 --> 05:18:55,772 LOT GOING ON, AND I THINK IT 9682 05:18:55,772 --> 05:18:57,006 WILL HELP AS WAS NOTED DURING 9683 05:18:57,006 --> 05:18:58,174 THE CONVERSATION, THINGS DON'T 9684 05:18:58,174 --> 05:18:59,642 TURN ON A DIME. 9685 05:18:59,642 --> 05:19:01,210 IT WILL TAKE A WHILE TO SEE THE 9686 05:19:01,210 --> 05:19:02,845 FULL IMPACT OF ALL OF THIS. 9687 05:19:02,845 --> 05:19:04,747 BUT I THINK IT GOING TO BE 9688 05:19:04,747 --> 05:19:06,916 REALLY SUPPORTIVE TO ALL THINGS 9689 05:19:06,916 --> 05:19:08,117 THAT WERE DISCUSSED HERE AND 9690 05:19:08,117 --> 05:19:10,453 REALLY I'M LOOKING FORWARD TO 9691 05:19:10,453 --> 05:19:10,887 SEEING THE OUTCOMES. 9692 05:19:10,887 --> 05:19:14,190 THANK YOU. 9693 05:19:14,190 --> 05:19:15,258 >> OH, THANK YOU. 9694 05:19:15,258 --> 05:19:19,762 THANK YOU SO MUCH, DR. BERNARD, 9695 05:19:19,762 --> 05:19:21,798 FOR YOUR GRATEFUL COMMENTS AND 9696 05:19:21,798 --> 05:19:26,336 GREAT PRESENTATION. 9697 05:19:26,336 --> 05:19:29,539 >> YEAH. 9698 05:19:29,539 --> 05:19:31,240 >> AND SO WE WANT TO CLOSE BY 9699 05:19:31,240 --> 05:19:33,476 THANKING ALL OF THE INDIVIDUALS 9700 05:19:33,476 --> 05:19:36,546 THAT HELPED MAKE THIS WORKSHOP A 9701 05:19:36,546 --> 05:19:37,547 SUCCESS. 9702 05:19:37,547 --> 05:19:38,281 FIRST AND FOREMOST. 9703 05:19:38,281 --> 05:19:39,382 THANK YOU TO ALL THE 9704 05:19:39,382 --> 05:19:40,750 PARTICIPANTS FOR ATTENDING THIS 9705 05:19:40,750 --> 05:19:41,718 TWO-DAY WORKSHOP. 9706 05:19:41,718 --> 05:19:43,720 WE WOULD ALSO LIKE TO THANK THE 9707 05:19:43,720 --> 05:19:46,089 MODERATORS, THE SPEAKERS AND THE 9708 05:19:46,089 --> 05:19:48,191 PANELISTS. 9709 05:19:48,191 --> 05:19:49,559 >> YES. 9710 05:19:49,559 --> 05:19:53,062 AND IN ADDITION, THERE IS A HUGE 9711 05:19:53,062 --> 05:19:55,465 HOST OF PEOPLE WHO HELPED TO 9712 05:19:55,465 --> 05:19:57,133 PLAN, ORGANIZE, AND COORDINATE 9713 05:19:57,133 --> 05:20:00,737 THIS WORKSHOP, SO WE'D LIKE TO 9714 05:20:00,737 --> 05:20:02,939 THANK OUR PLANNING COMMITTEE 9715 05:20:02,939 --> 05:20:05,408 MEMBERS, NIMHD COMMUNICATIONS 9716 05:20:05,408 --> 05:20:07,076 AND ADMINISTRATIVE STAFFS, NIH 9717 05:20:07,076 --> 05:20:08,578 EVENTS MANAGEMENT STAFF WHO 9718 05:20:08,578 --> 05:20:11,414 COORDINATED THE VIDEOCAST LIVE 9719 05:20:11,414 --> 05:20:12,849 STREAM, OUR CONTRACTOR SUPPORT 9720 05:20:12,849 --> 05:20:15,985 THROUGH SIDEM, AND OUR ASL 9721 05:20:15,985 --> 05:20:17,019 INTERPRETERS. 9722 05:20:17,019 --> 05:20:20,757 AND LASTLY, WE WANTED TO 9723 05:20:20,757 --> 05:20:24,360 ACKNOWLEDGE THE ART AND THE 9724 05:20:24,360 --> 05:20:27,130 ARTIST FEATURED ON THE WORKSHOP 9725 05:20:27,130 --> 05:20:28,831 MATERIALS. 9726 05:20:28,831 --> 05:20:33,236 SHYAMA KUVER SUBMITTED THIS 9727 05:20:33,236 --> 05:20:38,674 ARTWORK TO THE NIMHD ENVISIONING 9728 05:20:38,674 --> 05:20:39,776 HEALTH EQUITY ART CHALLENGE. 9729 05:20:39,776 --> 05:20:42,211 IN THE PIECE ENTITLED "TOGETHER 9730 05:20:42,211 --> 05:20:45,081 WE THRIVE," THE MOON ORBITS 9731 05:20:45,081 --> 05:20:46,516 REPRESENT PERSISTENCE AND 9732 05:20:46,516 --> 05:20:48,184 RESILIENCE, AND THE HANDS 9733 05:20:48,184 --> 05:20:48,718 REPRESENT CONNECTEDNESS. 9734 05:20:48,718 --> 05:20:50,052 SO WE LEAVE YOU WITH THE 9735 05:20:50,052 --> 05:20:52,789 REMINDER THAT WHEN WE WORK 9736 05:20:52,789 --> 05:20:53,656 TOGETHER, OUR COMMUNITIES 9737 05:20:53,656 --> 05:20:54,924 THRIVE. 9738 05:20:54,924 --> 05:20:57,527 THANK YOU SO, SO MUCH FOR COMING 9739 05:20:57,527 --> 05:21:00,129 TO THIS WORKSHOP. 9740 05:21:00,129 --> 05:21:01,030 YES, THANK YOU. 9741 05:21:01,030 --> 05:21:01,564 IT'S BEEN GREAT. 9742 05:21:01,564 --> 05:21:11,808 THANK YOU.