1 00:00:05,022 --> 00:00:05,856 WELCOME, EVERYONE. 2 00:00:05,856 --> 00:00:07,358 AND THANKS FOR JOINING US TODAY 3 00:00:07,358 --> 00:00:08,893 FOR THE VIRTUAL WEBINAR AND 4 00:00:08,893 --> 00:00:10,861 LISTENING SESSION ON ENGAGING 5 00:00:10,861 --> 00:00:20,604 THE PUBLIC AS PARTNERS IN 6 00:00:20,604 --> 00:00:23,674 CLINICAL RESEARCH I'M ARE LYRIC 7 00:00:23,674 --> 00:00:30,815 JORGENSON AND GRATEFUL TO BE 8 00:00:30,815 --> 00:00:34,685 JOINED BY KEN GETZ 9 00:00:34,685 --> 00:00:35,319 CLINICAL RESEARCH PARTICIPATION 10 00:00:35,319 --> 00:00:35,953 CENTER FOR INFORMATION AND STUDY 11 00:00:35,953 --> 00:00:36,420 ON CLINICAL RESEARCH 12 00:00:36,420 --> 00:00:37,188 PARTICIPATION AND SEVERAL 13 00:00:37,188 --> 00:00:38,055 COLLEAGUES FROM COLUMBIA 14 00:00:38,055 --> 00:00:39,690 UNIVERSITY, CHRIS VEASLEY FROM 15 00:00:39,690 --> 00:00:41,192 THE RESEARCH ALLIANCE WHO WILL 16 00:00:41,192 --> 00:00:42,493 ALSO BE SPEAKING A BIT LATER IN 17 00:00:42,493 --> 00:00:44,261 TODAY'S SESSION. 18 00:00:44,261 --> 00:00:46,831 FOR AWARENESS TODAY'S WEBINAR IS 19 00:00:46,831 --> 00:00:51,769 CO-HOSTED BY NIH WITH THE BIG 20 00:00:51,769 --> 00:00:56,807 PICTURE SHARED GOAL VISION OF 21 00:00:56,807 --> 00:00:57,741 ENGAGING PUBLIC VISION FOR 22 00:00:57,741 --> 00:00:59,376 CLINICAL RESEARCH. 23 00:00:59,376 --> 00:01:02,313 THIS IS PART OF AN INITIATIVE TO 24 00:01:02,313 --> 00:01:05,549 DEVELOP CONCRETE STRATEGIES TO 25 00:01:05,549 --> 00:01:09,286 ENSURE THOUGHTS AND PREFERENCES 26 00:01:09,286 --> 00:01:11,522 ARE INTEGRATED INTO CLINICAL 27 00:01:11,522 --> 00:01:17,294 RESEARCH. 28 00:01:17,294 --> 00:01:20,397 I'D LIKE TO EMPHASIZE THAT 29 00:01:20,397 --> 00:01:22,366 MEANINGFULLY ENGAGING PEOPLE 30 00:01:22,366 --> 00:01:25,002 CANNOT BE A ONE SIZE FITS ALL 31 00:01:25,002 --> 00:01:26,003 APPROACH. 32 00:01:26,003 --> 00:01:27,938 WE BELIEVE ENGAGEMENT CAN BE A 33 00:01:27,938 --> 00:01:29,039 PERSONAL EXPERIENCE OR SHARED 34 00:01:29,039 --> 00:01:30,841 AND WE NEED TO THINK HOW TO 35 00:01:30,841 --> 00:01:32,910 TAILOR EFFORTS TO THE NEEDS AND 36 00:01:32,910 --> 00:01:34,845 EXPERIENCES OF PEOPLE AND THEIR 37 00:01:34,845 --> 00:01:36,614 COMMUNITIES. 38 00:01:36,614 --> 00:01:38,482 SECOND, IT IS IMPORTANT TO LEVEL 39 00:01:38,482 --> 00:01:40,050 SET THE FACT THAT HISTORICALLY 40 00:01:40,050 --> 00:01:41,118 COMMUNITIES THAT COULD BENEFIT 41 00:01:41,118 --> 00:01:44,655 THE MOST FROM OUTCOMES OF 42 00:01:44,655 --> 00:01:49,760 CLINICAL RESEARCH STUDIES CAN 43 00:01:49,760 --> 00:01:50,828 OFTEN BE LEAST LIKELY WILL IN 44 00:01:50,828 --> 00:01:52,096 THE RESEARCH. 45 00:01:52,096 --> 00:01:55,366 THE GOAL IS TO THINK HOW TO FLIP 46 00:01:55,366 --> 00:01:58,035 THE SCRIPT ON THIS AND BLAZE A 47 00:01:58,035 --> 00:02:02,273 NEW PARADIGM BOTH FOR BETTER 48 00:02:02,273 --> 00:02:03,307 SCIENCE AND IMPROVING OUTCOMES 49 00:02:03,307 --> 00:02:05,676 FOR PEOPLE. 50 00:02:05,676 --> 00:02:08,479 FINALLY, ORGANIZATIONS AND 51 00:02:08,479 --> 00:02:14,852 COMMUNITIES ACROSS THE GLOBE ARE 52 00:02:14,852 --> 00:02:15,886 ENGAGING COMMUNITIES IN CLINICAL 53 00:02:15,886 --> 00:02:16,654 RESEARCH. 54 00:02:16,654 --> 00:02:18,856 WE'RE NOT ALONE AND IN NIH THE 55 00:02:18,856 --> 00:02:21,158 27 INSTITUTES AND CENTERS ARE 56 00:02:21,158 --> 00:02:22,826 WORKING TO PIONEER APPROACHES TO 57 00:02:22,826 --> 00:02:24,795 FULFILL THE MISSIONS. 58 00:02:24,795 --> 00:02:29,300 THE GOAL OF THIS SPECIFIC 59 00:02:29,300 --> 00:02:32,570 INITIATIVE IS TO PROVIDE NIH 60 00:02:32,570 --> 00:02:35,706 WITH THE NORTH STAR FOR 61 00:02:35,706 --> 00:02:37,374 PARTICIPANT ENGAGEMENT WITH A 62 00:02:37,374 --> 00:02:39,510 TOOLKIT THAT CAN BE USED BY 63 00:02:39,510 --> 00:02:41,712 PATIENTS, RESEARCH PARTICIPANTS, 64 00:02:41,712 --> 00:02:42,846 RESEARCHERS, CLINICIANS AND MORE 65 00:02:42,846 --> 00:02:46,383 TO ACHIEVE THIS COLLECTIVE 66 00:02:46,383 --> 00:02:46,617 VISION. 67 00:02:46,617 --> 00:02:50,521 ALL OF THAT SAID, TO GET THERE, 68 00:02:50,521 --> 00:02:54,091 NIH IS BRINGING TOGETHER LEADERS 69 00:02:54,091 --> 00:02:55,726 AND CONVENING AND TRANSLATING 70 00:02:55,726 --> 00:02:58,429 PATIENT NEEDS AND THE PUBLIC AND 71 00:02:58,429 --> 00:02:59,163 RESEARCHERS TO PROVIDE INPUT 72 00:02:59,163 --> 00:03:00,664 ALONG THE WAY ON THE VISION AND 73 00:03:00,664 --> 00:03:03,634 OF COURSE DEVELOP THE APPROACH. 74 00:03:03,634 --> 00:03:06,870 I'M PLEASED TO SAY THE EFFORT IS 75 00:03:06,870 --> 00:03:08,639 LED ABLY BY THE ENGAGE WORKING 76 00:03:08,639 --> 00:03:10,808 GROUP AND YOU'LL HEAR DIRECTLY 77 00:03:10,808 --> 00:03:13,310 FROM THE LEADERS OF THAT TEAM IN 78 00:03:13,310 --> 00:03:16,013 A BIT. 79 00:03:16,013 --> 00:03:20,985 THIS GROUP IS IDENTIFIED TO WILL 80 00:03:20,985 --> 00:03:22,353 TARGET WHAT MATTERS MOST IN 81 00:03:22,353 --> 00:03:23,220 CLINICAL RESEARCH AND THE 82 00:03:23,220 --> 00:03:24,855 ANSWERS WILL SERVE AS A 83 00:03:24,855 --> 00:03:27,024 CORNERSTONE OF THE WORK THIS 84 00:03:27,024 --> 00:03:27,691 GROUP CONTINUES. 85 00:03:27,691 --> 00:03:28,659 IN RECOGNITION OF THE IMPORTANCE 86 00:03:28,659 --> 00:03:32,663 OF THE ANSWERS TO THESE 87 00:03:32,663 --> 00:03:34,164 QUESTIONS ARE OPPORTUNITIES FOR 88 00:03:34,164 --> 00:03:38,369 WRITTEN AND VERBAL COMMENT AND 89 00:03:38,369 --> 00:03:40,537 MAKE IT CLEAR THERE WILL BE MANY 90 00:03:40,537 --> 00:03:41,472 OPPORTUNITIES NOW AND ALONG THE 91 00:03:41,472 --> 00:03:42,706 WAY AND IN THE FUTURE TO MAKE 92 00:03:42,706 --> 00:03:43,841 YOUR VOICE HEARD. 93 00:03:43,841 --> 00:03:45,175 THAT'S THE WHOLE POINT OF WHAT 94 00:03:45,175 --> 00:03:46,844 WE'RE TRYING TO DO. 95 00:03:46,844 --> 00:03:50,414 TODAY'S WEBINAR IS ONE OF THOSE 96 00:03:50,414 --> 00:03:50,748 OPPORTUNITIES. 97 00:03:50,748 --> 00:03:53,717 ANOTHER OPPORTUNITY OUT NOW IS 98 00:03:53,717 --> 00:03:55,619 THE REQUEST FOR INFORMATION NIH 99 00:03:55,619 --> 00:03:57,988 HAS RECENTLY ISSUED AND ANYONE 100 00:03:57,988 --> 00:03:59,423 AND EVERYONE SHOULD TAKE TIME TO 101 00:03:59,423 --> 00:04:00,557 THINK OF COMMENTING. 102 00:04:00,557 --> 00:04:04,428 VISIT THE ENGAGE WEBSITE AT 103 00:04:04,428 --> 00:04:06,263 PARTICIPANT -- SORRY, PARTNERS 104 00:04:06,263 --> 00:04:09,967 IN RESEARCH AT NIH.gov TO LEARN 105 00:04:09,967 --> 00:04:11,635 HOW TO SUBMIT A WRITTEN COMMENT 106 00:04:11,635 --> 00:04:14,471 BY THE AUGUST 14 CLOSING DATE. 107 00:04:14,471 --> 00:04:15,239 ULTIMATELY YOUR OPINIONS AND 108 00:04:15,239 --> 00:04:16,040 PERSPECTIVE MATTER. 109 00:04:16,040 --> 00:04:16,974 THEY'LL SHAPE THE WORK OF THE 110 00:04:16,974 --> 00:04:20,844 EFFORT AND PUBLIC ENGAGE 111 00:04:20,844 --> 00:04:22,546 THE IN NIH-SUPPORTED CLINICAL 112 00:04:22,546 --> 00:04:25,516 RESEARCH NOW AND FOR THE YEARS 113 00:04:25,516 --> 00:04:25,749 TO COME. 114 00:04:25,749 --> 00:04:27,284 WE'RE COMMITTED TO THIS TOPIC. 115 00:04:27,284 --> 00:04:29,453 IN ADDITION TO BEING THE FOUNDER 116 00:04:29,453 --> 00:04:31,455 AND BOARD CHAIR, KEN GETZ IS 117 00:04:31,455 --> 00:04:32,623 ALSO A PROFESSOR AND DIRECTOR OF 118 00:04:32,623 --> 00:04:35,492 THE CENTER FOR THE STUDY OF DRUG 119 00:04:35,492 --> 00:04:36,994 DEVELOPMENT AT TUFTS UNIVERSITY 120 00:04:36,994 --> 00:04:38,729 SCHOOL OF MEDICINE. 121 00:04:38,729 --> 00:04:39,897 AMONG KEN'S MANY MANY 122 00:04:39,897 --> 00:04:40,698 ACCOMPLISHMENTS WE DON'T HAVE 123 00:04:40,698 --> 00:04:42,733 TIME TO COVER HERE TODAY, HE'S 124 00:04:42,733 --> 00:04:44,668 THE AUTHOR OF TWO NATIONALLY 125 00:04:44,668 --> 00:04:45,502 RECOGNIZED BOOKS FOR PATIENTS 126 00:04:45,502 --> 00:04:48,806 AND ADVOCATES ALONG WITH OTHER 127 00:04:48,806 --> 00:04:49,306 SCHOLARLY PUBLICATIONS. 128 00:04:49,306 --> 00:04:51,909 I'M NOW GOING TO TURN IT OVER TO 129 00:04:51,909 --> 00:04:53,343 KEN, THE REAL EXPERT ON THE 130 00:04:53,343 --> 00:04:54,878 TOPIC WE'RE ABOUT TO TALK ABOUT 131 00:04:54,878 --> 00:04:55,979 TODAY TO SHARE HIS PERSPECTIVE 132 00:04:55,979 --> 00:04:57,581 ON EFFORTS FOR UNDERTAKING AND 133 00:04:57,581 --> 00:04:59,717 HOW TO COLLECTIVELY MOVE 134 00:04:59,717 --> 00:05:00,484 FORWARD. 135 00:05:00,484 --> 00:05:02,086 KEN IS MY ABSOLUTE PLEASURE 136 00:05:02,086 --> 00:05:03,220 YOU'RE HERE WITH US TODAY AND 137 00:05:03,220 --> 00:05:04,521 WOULD LOVE TO TURN IT OVER TO 138 00:05:04,521 --> 00:05:04,788 YOU. 139 00:05:04,788 --> 00:05:06,857 >> THANK YOU SO MUCH FOR THAT 140 00:05:06,857 --> 00:05:08,659 KIND INTRODUCTION, LYRIC. 141 00:05:08,659 --> 00:05:09,626 IT'S MY PLEASURE TO BE HERE 142 00:05:09,626 --> 00:05:17,601 TODAY AND ON BEHALF OF WE'RE 143 00:05:17,601 --> 00:05:28,112 PLEASED TO ON THE INITIATIVE. 144 00:05:32,483 --> 00:05:34,051 THE RESEARCH COMMUNITY IS TRUE 145 00:05:34,051 --> 00:05:34,885 PARTNERS IN THE PROCESS TO 146 00:05:34,885 --> 00:05:37,821 DISCOVER AND DEVELOP NEW MEDICAL 147 00:05:37,821 --> 00:05:38,088 THERAPIES. 148 00:05:38,088 --> 00:05:40,557 BEFORE THAT TIME ENGAGEMENT WAS 149 00:05:40,557 --> 00:05:42,459 LARGELY ONE SIDED. 150 00:05:42,459 --> 00:05:44,762 IT WAS DRIVEN BY HIGHLY 151 00:05:44,762 --> 00:05:47,064 MOTIVATED COMMUNITY ACTIVISTS. 152 00:05:47,064 --> 00:05:50,434 THINK OF PATIENTS AND FAMILIES 153 00:05:50,434 --> 00:05:53,771 AND THE HIV COMMUNITY AND 154 00:05:53,771 --> 00:05:56,106 PARKINSON'S AND CYSTIC FIBROSIS 155 00:05:56,106 --> 00:05:57,441 DISEASE COMMUNITIES. 156 00:05:57,441 --> 00:05:59,443 THESE INDIVIDUALS LED MOVEMENTS 157 00:05:59,443 --> 00:06:01,311 TO PRESSURE THE RESEARCH 158 00:06:01,311 --> 00:06:02,646 COMMUNITY TO DEVELOP NEW 159 00:06:02,646 --> 00:06:05,315 THERAPIES, TO ACCELERATE 160 00:06:05,315 --> 00:06:06,517 REGULATORY REVIEW AND MAKE 161 00:06:06,517 --> 00:06:07,017 CERTAIN TREATMENTS MORE 162 00:06:07,017 --> 00:06:10,020 ACCESSIBLE. 163 00:06:10,020 --> 00:06:11,155 WELL, OCCURRING THE PAST 15 164 00:06:11,155 --> 00:06:14,691 YEARS AS LYRIC WAS MENTIONING, 165 00:06:14,691 --> 00:06:16,527 THE ENTIRE PHILOSOPHY AND 166 00:06:16,527 --> 00:06:18,562 CONCEPT OF ENGAGEMENT IN 167 00:06:18,562 --> 00:06:21,832 CLINICAL RESEARCH HAS SHIFTED 168 00:06:21,832 --> 00:06:23,300 REMARKABLY TO EMPHASIZE 169 00:06:23,300 --> 00:06:26,603 TWO-SIDED PARTNERSHIP AND 170 00:06:26,603 --> 00:06:26,937 COLLABORATION. 171 00:06:26,937 --> 00:06:29,907 GOVERNMENT AGENCIES AROUND THE 172 00:06:29,907 --> 00:06:32,342 WORLD HAVE FORMALIZED ELEMENTS 173 00:06:32,342 --> 00:06:34,044 OF ENGAGEMENT TO RECOMMENDED 174 00:06:34,044 --> 00:06:36,880 PRACTICES AND LAW, PUBLIC AND 175 00:06:36,880 --> 00:06:41,718 PATIENT COMMUNITIES ARM IN ARM 176 00:06:41,718 --> 00:06:42,219 WITH CLINICAL RESEARCH 177 00:06:42,219 --> 00:06:45,422 PROFESSIONALS ARE SHARING THEIR 178 00:06:45,422 --> 00:06:47,224 VOICES, THEIR PERSPECTIVES AND 179 00:06:47,224 --> 00:06:50,227 INSIGHTS ON THE BURDEN OF LIVING 180 00:06:50,227 --> 00:06:52,095 WITH A GIVEN DISEASE ON 181 00:06:52,095 --> 00:06:54,364 PREFERRED TREATMENT OUTCOMES 182 00:06:54,364 --> 00:06:55,699 AROUND HOW TO BEST EVALUATE THE 183 00:06:55,699 --> 00:06:57,568 SAFETY AND EFFICACY OF NEW 184 00:06:57,568 --> 00:07:01,872 INVESTIGATIONAL TREATMENTS. 185 00:07:01,872 --> 00:07:03,974 JUST A QUICK WORD ABOUT CISCRP, 186 00:07:03,974 --> 00:07:06,176 IT WAS FOUNDED IN 2003. 187 00:07:06,176 --> 00:07:08,445 THE CENTER FOR INFORMATION AND 188 00:07:08,445 --> 00:07:10,714 STUDY ON CLINICAL RESEARCH 189 00:07:10,714 --> 00:07:11,849 PARTICIPATION HAS CONTRIBUTED TO 190 00:07:11,849 --> 00:07:14,918 THIS REMARKABLE SHIFT IN A 191 00:07:14,918 --> 00:07:16,220 NUMBER OF WAYS. 192 00:07:16,220 --> 00:07:17,921 CISCRP IS VERY PASSIONATE ABOUT 193 00:07:17,921 --> 00:07:20,324 ITS MISSION AS LYRIC NOTED. 194 00:07:20,324 --> 00:07:22,526 IT IS DEDICATED TO PUBLIC AND 195 00:07:22,526 --> 00:07:26,830 PATIENT ADVOCACY AND ENGAGEMENT 196 00:07:26,830 --> 00:07:28,031 ON A VARIETY OF LEVELS. 197 00:07:28,031 --> 00:07:33,103 RAISING PUBLIC AWARENESS AND 198 00:07:33,103 --> 00:07:34,972 OVER ALL CLINICAL RESEARCH 199 00:07:34,972 --> 00:07:35,839 LITERACY AROUND INFORMING 200 00:07:35,839 --> 00:07:37,107 PATIENTS AND FAMILIES HOW BEST 201 00:07:37,107 --> 00:07:42,346 TO NAVIGATE AND PARTICIPATE IN 202 00:07:42,346 --> 00:07:44,047 CLINICAL RESEARCH, GATHERING 203 00:07:44,047 --> 00:07:45,782 FEEDBACK FROM PATIENT 204 00:07:45,782 --> 00:07:46,850 COMMUNITIES TO INFORM BETTER 205 00:07:46,850 --> 00:07:50,053 PROTOCOL DESIGN AND RETURNING 206 00:07:50,053 --> 00:07:51,154 NON-TECHNICAL, EASY TO 207 00:07:51,154 --> 00:07:52,289 UNDERSTAND TRIAL RESULTS AND 208 00:07:52,289 --> 00:07:54,291 INFORMATION TO STUDY VOLUNTEERS 209 00:07:54,291 --> 00:07:54,992 AND THEIR FAMILIES. 210 00:07:54,992 --> 00:07:58,495 CISCRP IS ALSO COMMITTED TO 211 00:07:58,495 --> 00:08:00,130 ENHANCING THE PARTICIPATION 212 00:08:00,130 --> 00:08:03,033 EXPERIENCE DURING AND AFTER 213 00:08:03,033 --> 00:08:04,201 CLINICAL TRIALS. 214 00:08:04,201 --> 00:08:05,702 IMPROVING PATIENT DIVERSITY, 215 00:08:05,702 --> 00:08:06,303 INCLUSION, ACCESSIBILITY AND 216 00:08:06,303 --> 00:08:09,006 CONVENIENCE. 217 00:08:09,006 --> 00:08:10,841 EMPOWERMENT AND THE ENGAGEMENT 218 00:08:10,841 --> 00:08:13,176 OF PATIENTS AND THE PUBLIC AS 219 00:08:13,176 --> 00:08:15,212 PARTNERS IN CLINICAL RESEARCH 220 00:08:15,212 --> 00:08:19,249 HAS SO MANY BENEFITS AND IT'S A 221 00:08:19,249 --> 00:08:19,716 WIN-WIN FOR EVERYONE. 222 00:08:19,716 --> 00:08:21,785 TO NAME A FEW OF THE BENEFITS 223 00:08:21,785 --> 00:08:23,887 THROUGH COLLABORATION AND 224 00:08:23,887 --> 00:08:24,855 PARTNERSHIP, CLINICAL RESEARCH 225 00:08:24,855 --> 00:08:27,291 CAN FOCUS ON THE MOST RELEVANT 226 00:08:27,291 --> 00:08:29,726 END POINTS AND IT CAN GATHER THE 227 00:08:29,726 --> 00:08:32,763 MOST CLINICALLY MEANINGFUL AND 228 00:08:32,763 --> 00:08:33,630 USEFUL INFORMATION. 229 00:08:33,630 --> 00:08:37,567 IT CAN HELP SPEED UP THE PACE OF 230 00:08:37,567 --> 00:08:38,402 TRIALS AND DRIVE HIGHER SUCCESS 231 00:08:38,402 --> 00:08:41,271 RATES AND ULTIMATELY AND PERHAPS 232 00:08:41,271 --> 00:08:44,708 MOST IMPORTANTLY ENGAGEMENT 233 00:08:44,708 --> 00:08:45,742 DELIVERS BETTER MEDICAL 234 00:08:45,742 --> 00:08:50,580 TREATMENTS TO PATIENTS AND THEIR 235 00:08:50,580 --> 00:08:52,649 FAMILIES WAITING FOR THEM. 236 00:08:52,649 --> 00:08:54,251 WE'RE EXCITING TO BE CO-HOSTING 237 00:08:54,251 --> 00:08:55,786 TODAY'S IMPORTANT WEBINAR WITH 238 00:08:55,786 --> 00:08:57,955 THE NIH AND VERY EXCITED TO BE 239 00:08:57,955 --> 00:09:00,824 PART OF THIS LISTENING SESSION. 240 00:09:00,824 --> 00:09:01,825 LYRIC, I'LL TURN THE MEETING 241 00:09:01,825 --> 00:09:04,027 BACK OVER TO YOU AND THANK YOU 242 00:09:04,027 --> 00:09:05,729 AGAIN FOR THE OPPORTUNITY TO 243 00:09:05,729 --> 00:09:14,738 COLLABORATE WITH YOU. 244 00:09:14,738 --> 00:09:16,340 WE'RE EXCITED TO PARTNER WITH 245 00:09:16,340 --> 00:09:17,641 YOU AND BE HERE TODAY. 246 00:09:17,641 --> 00:09:19,977 I'D LIKE TO GET OUR PROGRAM 247 00:09:19,977 --> 00:09:20,744 STARTED TO GET OUR DISCUSSION 248 00:09:20,744 --> 00:09:22,012 GOING AND HEAR FROM THE PUBLIC 249 00:09:22,012 --> 00:09:23,146 WHICH IS WHAT WE'RE TRYING TO DO 250 00:09:23,146 --> 00:09:23,447 HERE TODAY. 251 00:09:23,447 --> 00:09:26,850 AS I MENTIONED, WE HAVE OUR 252 00:09:26,850 --> 00:09:30,354 ENGAGED LEADERSHIP HERE TODAY, 253 00:09:30,354 --> 00:09:32,556 SUE BAKKEN AND CHRIS VEASLEY 254 00:09:32,556 --> 00:09:37,728 WORKING ON A PLAN TO IMPROVE 255 00:09:37,728 --> 00:09:38,428 PUBLIC ENGAGEMENT AND RESEARCH 256 00:09:38,428 --> 00:09:39,563 AND WE'LL DIVE TOO THE WORK 257 00:09:39,563 --> 00:09:40,664 THEY'VE BEEN DOING. 258 00:09:40,664 --> 00:09:43,900 SUE BAKKEN IS A PROFESSOR OF 259 00:09:43,900 --> 00:09:48,372 NURSING IN BIO INFORMATICS AT 260 00:09:48,372 --> 00:09:49,439 COLUMBIA UNIVERSITY AND PROMOTES 261 00:09:49,439 --> 00:09:51,641 HEALTH AND REDUCES HEALTH 262 00:09:51,641 --> 00:09:53,477 DISPARITIES IN UNDER SERVED 263 00:09:53,477 --> 00:09:53,777 POPULATIONS. 264 00:09:53,777 --> 00:09:58,849 CHRIS VEASLEY IS CO-FOUNDER AND 265 00:09:58,849 --> 00:10:02,853 DIRECTOR OF THE CP -- CHRONIC 266 00:10:02,853 --> 00:10:05,322 PAIN RESEARCH ALLIANCE AND HOLDS 267 00:10:05,322 --> 00:10:07,758 POSITIONS AT THE NIH, CDC AND 268 00:10:07,758 --> 00:10:10,093 FOOD AND DRUG ADMINISTRATION. 269 00:10:10,093 --> 00:10:13,797 SHE HAS BEEN A PASSIONATE AND 270 00:10:13,797 --> 00:10:14,931 SUCCESSFUL ADVOCATE FOR PEOPLE 271 00:10:14,931 --> 00:10:16,533 LEAVING WITH PAIN AND PATIENT IS 272 00:10:16,533 --> 00:10:17,467 PERSPECTIVES IN RESEARCH. 273 00:10:17,467 --> 00:10:19,936 IT'S AN HONOR TO BE SHARING THE 274 00:10:19,936 --> 00:10:21,438 STAGE -- THE VIRTUAL STAGE WITH 275 00:10:21,438 --> 00:10:23,740 THESE LADIES WHO HAVE BEEN 276 00:10:23,740 --> 00:10:24,975 TREMENDOUSLY INSPIRATIONAL AND 277 00:10:24,975 --> 00:10:27,177 WORK REALLY HARD TO MAKE VOICES 278 00:10:27,177 --> 00:10:28,879 HEARD IN WAYS THAT ARE 279 00:10:28,879 --> 00:10:31,548 MEANINGFUL AND IMPACTFUL FOR 280 00:10:31,548 --> 00:10:32,282 ALL. 281 00:10:32,282 --> 00:10:34,217 I WILL TURN IT OVER TO YOU 282 00:10:34,217 --> 00:10:35,619 LADIES TO KICK OFF OUR PROGRAM 283 00:10:35,619 --> 00:10:36,086 FOR TODAY. 284 00:10:36,086 --> 00:10:38,822 >> THANKS, IT'S GREAT TO HEAR 285 00:10:38,822 --> 00:10:40,724 FROM YOU, LYRIC, AS WELL AS KEN 286 00:10:40,724 --> 00:10:41,224 AND SETTING US UP. 287 00:10:41,224 --> 00:10:46,997 CHRIS AND I ARE GOING TO 288 00:10:46,997 --> 00:10:51,435 CONTINUE WITH A BRIEF BACKGROUND 289 00:10:51,435 --> 00:10:53,737 BECAUSE TODAY IS REALLY A 290 00:10:53,737 --> 00:10:54,237 LISTENING SESSION. 291 00:10:54,237 --> 00:10:56,773 WE'RE REALLY HERE MORE TO LISTEN 292 00:10:56,773 --> 00:10:57,941 THAN TO TALK. 293 00:10:57,941 --> 00:11:00,143 BUT WE'LL START OUT WITH A FEW 294 00:11:00,143 --> 00:11:02,012 DEFINITIONS AND LET YOU KNOW 295 00:11:02,012 --> 00:11:03,713 WHAT WE'VE BEEN UP TO BEFORE WE 296 00:11:03,713 --> 00:11:05,715 OPEN THE FLOOR FOR YOUR 297 00:11:05,715 --> 00:11:12,422 COMMENTS. 298 00:11:12,422 --> 00:11:14,825 SO, JUST A LITTLE BIT OF 299 00:11:14,825 --> 00:11:16,993 BACKGROUND. 300 00:11:16,993 --> 00:11:20,597 THE NIH INFORMATION'S MEDICAL 301 00:11:20,597 --> 00:11:22,165 RESEARCH AGENCY, THE NIH FUNDS 302 00:11:22,165 --> 00:11:24,835 RESEARCH ACROSS THE U.S. TO MAKE 303 00:11:24,835 --> 00:11:25,702 IMPORTANT DISCOVERIES THAT 304 00:11:25,702 --> 00:11:28,071 IMPROVE HEALTH AND SAVE LIVES. 305 00:11:28,071 --> 00:11:32,609 IN TERMS OF FUNDING, NIH 306 00:11:32,609 --> 00:11:35,178 INVESTED NEARLY $18 BILLION IN 307 00:11:35,178 --> 00:11:37,347 CLINICAL RESEARCH IN 2022. 308 00:11:37,347 --> 00:11:38,849 THIS IS THE LARGEST AMOUNT IN 309 00:11:38,849 --> 00:11:45,555 THE U.S. 310 00:11:45,555 --> 00:11:48,058 IN TERMS OF SOME NEXTS, IT'S 311 00:11:48,058 --> 00:11:50,927 IMPORTANT WE THINK BROADLY ABOUT 312 00:11:50,927 --> 00:11:53,230 WHAT CLINICAL RESEARCH IS SO YOU 313 00:11:53,230 --> 00:11:56,566 HAVE A SENSE OF THE ENGAGEMENT 314 00:11:56,566 --> 00:11:58,902 ACTIVITIES IN CONJUNCTION WITH 315 00:11:58,902 --> 00:12:01,705 THE RESEARCH LIFE CYCLE. 316 00:12:01,705 --> 00:12:05,075 AND IT'S MEDICAL RESEARCH THAT 317 00:12:05,075 --> 00:12:06,343 IMPROVES PEOPLE AND LEARN MORE 318 00:12:06,343 --> 00:12:08,845 ABOUT DISEASE AND IMPROVE 319 00:12:08,845 --> 00:12:09,613 HEALTH. 320 00:12:09,613 --> 00:12:10,847 THIS INCLUDES MULTIPLE STAGES 321 00:12:10,847 --> 00:12:12,749 FROM CONCEPT DEVELOPMENT TO 322 00:12:12,749 --> 00:12:14,851 DESIGN AND PLANNING A STUDY, 323 00:12:14,851 --> 00:12:19,856 CONDUCTING THE STUDY AND 324 00:12:19,856 --> 00:12:20,657 ANALYZING THE RESULTS AROUND 325 00:12:20,657 --> 00:12:22,826 SHARING THE RESULTS. 326 00:12:22,826 --> 00:12:25,662 THE IDEA OF THE WORK IN THE BIG 327 00:12:25,662 --> 00:12:28,298 PICTURE IS PUBLIC ENGAGEMENT IS 328 00:12:28,298 --> 00:12:32,402 NECESSARY THROUGHOUT THE CYCLE. 329 00:12:32,402 --> 00:12:35,472 AND IMPORTANTLY, WHEN WE'RE 330 00:12:35,472 --> 00:12:37,340 THINKING ABOUT THAT RESEARCH 331 00:12:37,340 --> 00:12:38,842 ENGAGEMENT, IT HAPPENS WHEN 332 00:12:38,842 --> 00:12:40,343 INDIVIDUALS SUCH AS PATIENTS AND 333 00:12:40,343 --> 00:12:41,912 GROUPS OF PEOPLE AND COMMUNITIES 334 00:12:41,912 --> 00:12:44,414 AND ORGANIZATIONS PARTNER WITH 335 00:12:44,414 --> 00:12:51,755 RESEARCHERS TO PLAN, BEING 336 00:12:51,755 --> 00:12:53,723 CONDUCTING IN RESEARCH OR DESIGN 337 00:12:53,723 --> 00:12:55,325 AND WHEN PEOPLE THINK OF 338 00:12:55,325 --> 00:12:57,827 RESEARCH DESIGN AND ENGAGEMENT 339 00:12:57,827 --> 00:12:59,729 THEY MAY THINK PRIMARILY ABOUT 340 00:12:59,729 --> 00:13:00,697 CLINICAL TRIALS BUT IT'S VERY 341 00:13:00,697 --> 00:13:02,832 IMPORTANT FOR THIS WORK THAT 342 00:13:02,832 --> 00:13:06,303 WE'RE CONDUCTING TO NOT JUST 343 00:13:06,303 --> 00:13:07,671 THINK ABOUT CLINICAL TRIALS BUT 344 00:13:07,671 --> 00:13:11,041 BROADLY THINK OF OTHER TYPES OF 345 00:13:11,041 --> 00:13:11,741 RESEARCH THAT ARE BEING 346 00:13:11,741 --> 00:13:20,951 CONDUCTED. 347 00:13:20,951 --> 00:13:23,720 AND SOME DIFFERENT WAYS WE THINK 348 00:13:23,720 --> 00:13:24,988 ABOUT INCLUDING PUBLIC 349 00:13:24,988 --> 00:13:26,723 ENGAGEMENT IN RESEARCH, REALLY 350 00:13:26,723 --> 00:13:28,458 HIGHLIGHTING THE POINT THAT 351 00:13:28,458 --> 00:13:30,860 PATIENTS, COMMUNITIES AND OTHER 352 00:13:30,860 --> 00:13:32,329 MEMBERS ARE ESSENTIAL PARTNERS 353 00:13:32,329 --> 00:13:37,334 TO THE SUCCESS OF THE RESEARCH. 354 00:13:37,334 --> 00:13:38,435 SO THIS IS NOT ABOUT ONLY 355 00:13:38,435 --> 00:13:42,839 RESEARCH PARTICIPANTS AND MAKING 356 00:13:42,839 --> 00:13:43,974 SURE THEY'RE ADEQUATE 357 00:13:43,974 --> 00:13:48,511 PARTICIPANTS IN RESEARCH STUDIES 358 00:13:48,511 --> 00:13:49,512 IT'S BROADER THAN THAT IN TERMS 359 00:13:49,512 --> 00:13:51,181 OF RESEARCH ENGAGEMENT AND 360 00:13:51,181 --> 00:13:52,983 IMPORTANT TO THINK ABOUT THE 361 00:13:52,983 --> 00:13:54,851 FACT THAT ENGAGEMENT SHOULD BE 362 00:13:54,851 --> 00:13:56,086 TAILORED TO THE NEEDS AND 363 00:13:56,086 --> 00:14:01,291 EXPERIENCE OF PEOPLE IN 364 00:14:01,291 --> 00:14:03,560 COMMUNITIES AND THESE GROUPS 365 00:14:03,560 --> 00:14:08,098 SHOULD GUIDE THE RESEARCH 366 00:14:08,098 --> 00:14:09,733 IMPACTFUL TO THEM. 367 00:14:09,733 --> 00:14:13,670 IT'S NOT A ONE-SIZE FITS ALL 368 00:14:13,670 --> 00:14:15,505 APPROACH AND WHICH COMMUNITIES 369 00:14:15,505 --> 00:14:17,307 AND WHICH STAGE OF THE LIFE 370 00:14:17,307 --> 00:14:18,341 CYCLE WE NEED APPROPRIATE 371 00:14:18,341 --> 00:14:25,515 APPROACHES TO WORK WITH THEM. 372 00:14:25,515 --> 00:14:26,850 TO ACCOMPLISH THIS NIH HAS 373 00:14:26,850 --> 00:14:28,785 DEVELOPED A VISION AND FRAMEWORK 374 00:14:28,785 --> 00:14:31,254 FOR INCORPORATING PUBLIC VOICES 375 00:14:31,254 --> 00:14:33,256 IN ALL PHASES AND TYPES OF 376 00:14:33,256 --> 00:14:34,157 CLINICAL RESEARCH. 377 00:14:34,157 --> 00:14:38,762 THIS IS THE ENGAGE WORKING GROUP 378 00:14:38,762 --> 00:14:41,765 LYRIC HAS MENTIONED. 379 00:14:41,765 --> 00:14:44,901 AND CHRIS AND I ARE DELIGHTED TO 380 00:14:44,901 --> 00:14:47,270 BE LEADING THE ENGAGE WORKING 381 00:14:47,270 --> 00:14:48,738 GROUP AND NOW I'M FOG TO TURN IT 382 00:14:48,738 --> 00:14:51,608 OVER TO CHRIS TO TALK A LITTLE 383 00:14:51,608 --> 00:14:53,109 BIT MORE ABOUT WHAT THE ENGAGE 384 00:14:53,109 --> 00:14:54,911 WORKING GROUP IS DOING BEFORE WE 385 00:14:54,911 --> 00:14:58,815 HEAR BACK FROM YOU. 386 00:14:58,815 --> 00:15:00,150 CHRIS. 387 00:15:00,150 --> 00:15:06,323 >> THANKS, SUE AND LYRIC AND 388 00:15:06,323 --> 00:15:06,690 KEN. 389 00:15:06,690 --> 00:15:07,924 IT'S A PLEASURE TO BE HERE. 390 00:15:07,924 --> 00:15:09,893 THE NIH BROUGHT TOGETHER A GROUP 391 00:15:09,893 --> 00:15:13,330 OF PATIENTS, ADVOCATES, 392 00:15:13,330 --> 00:15:14,831 RESEARCHERS, CLINICIANS AND 393 00:15:14,831 --> 00:15:16,099 NON-PROFIT REPRESENTATIVES WHO 394 00:15:16,099 --> 00:15:17,267 ARE EACH EXPERTS IN CLINICAL 395 00:15:17,267 --> 00:15:18,835 RESEARCH AND ENGAGEMENT. 396 00:15:18,835 --> 00:15:20,904 AND MEMBERS OF OUR WORKING GROUP 397 00:15:20,904 --> 00:15:23,340 ARE SHOWN HERE ON THE SCREEN. 398 00:15:23,340 --> 00:15:26,242 THIS GROUP AS SUE JUST MENTIONED 399 00:15:26,242 --> 00:15:27,110 IS COLLECTIVELY REFERRED TO AS 400 00:15:27,110 --> 00:15:28,445 THE ENGAGE WORKING GROUP. 401 00:15:28,445 --> 00:15:32,716 AND WE ARE DEVELOPING A VISION 402 00:15:32,716 --> 00:15:34,884 AND FRAMEWORK FOR ENGAGEMENT IN 403 00:15:34,884 --> 00:15:38,521 CLINICAL RESEARCH. 404 00:15:38,521 --> 00:15:40,623 SO WE'VE BEEN HARD AT WORK SINCE 405 00:15:40,623 --> 00:15:42,525 LAST YEAR AND HAVE BEEN 406 00:15:42,525 --> 00:15:43,960 DEVELOPING A VISION AND GOAL 407 00:15:43,960 --> 00:15:45,829 STATEMENT TO GUIDE OR WORK. 408 00:15:45,829 --> 00:15:47,831 OUR VISION SHOWN HERE ON THE 409 00:15:47,831 --> 00:15:49,632 SCREEN IS THAT IF WE ARE 410 00:15:49,632 --> 00:15:51,835 SUCCESSFUL IN THE WORK WE'RE 411 00:15:51,835 --> 00:15:53,403 DOING, ENGAGEMENT IN CLINICAL 412 00:15:53,403 --> 00:15:55,438 RESEARCH WILL BECOME A STANDARD 413 00:15:55,438 --> 00:15:59,976 PRACTICE THAT WILL PROMOTE 414 00:15:59,976 --> 00:16:00,477 RECE 415 00:16:00,477 --> 00:16:01,578 RESPONSIVENESS TO COMMUNITY 416 00:16:01,578 --> 00:16:03,113 NEEDS AND TRANSPARENCY WHILE 417 00:16:03,113 --> 00:16:05,682 MEETING THE NIH MISSION OF 418 00:16:05,682 --> 00:16:06,649 HELPING TURN DISCOVERIES TO 419 00:16:06,649 --> 00:16:09,986 IMPROVED LEATH OF ALL PEOPLE. 420 00:16:09,986 --> 00:16:11,321 IN SIMILAR TERMS IS PEOPLE IN 421 00:16:11,321 --> 00:16:15,759 COMMUNITIES HAVE A SAY IN THE 422 00:16:15,759 --> 00:16:17,894 AGENDA IN RESEARCH THAT'S 423 00:16:17,894 --> 00:16:19,829 IMPACTFUL TO THEM. 424 00:16:19,829 --> 00:16:20,764 BOTH STATEMENTS ARE STILL IN 425 00:16:20,764 --> 00:16:22,332 DRAFT FORM AND WE PLAN TO 426 00:16:22,332 --> 00:16:23,733 CONTINUE TO UPDATE AND SEEK 427 00:16:23,733 --> 00:16:25,602 PUBLIC INPUT ON THEM. 428 00:16:25,602 --> 00:16:27,370 IF YOU HAVE FEED BACK, PLEASE 429 00:16:27,370 --> 00:16:28,905 LET US HEAR FROM YOU. 430 00:16:28,905 --> 00:16:31,608 THE GROUP IS ALSO WORKING ON 431 00:16:31,608 --> 00:16:33,510 OTHER DRAFT PRODUCTS GUIDED BY 432 00:16:33,510 --> 00:16:34,911 THE COMMENTS YOU'LL HEAR IN 433 00:16:34,911 --> 00:16:36,679 TODAY'S SESSION AND IN RESPONSE 434 00:16:36,679 --> 00:16:38,014 TO OTHER CALLS THAT WE HAVE TO 435 00:16:38,014 --> 00:16:43,353 HEAR FROM THE COMMUNITY. 436 00:16:43,353 --> 00:16:45,355 SO I'M SUPER EXCITED TO 437 00:16:45,355 --> 00:16:46,823 HIGHLIGHT THE NIH RECENTLY 438 00:16:46,823 --> 00:16:48,458 RELEASED A NEW WEBSITE LYRIC 439 00:16:48,458 --> 00:16:50,326 MENTIONED EARLIER AND IT'S GOING 440 00:16:50,326 --> 00:16:53,763 TO SERVE AS A CENTRAL RESEARCH 441 00:16:53,763 --> 00:17:02,071 FOR OUR EFFORT AND PARTNERS IN 442 00:17:02,071 --> 00:17:03,006 RESEARCH.NIH .GOV AND ENCOURAGE 443 00:17:03,006 --> 00:17:04,474 YOU TO LEARN MORE ABOUT THE 444 00:17:04,474 --> 00:17:05,141 EFFORT. 445 00:17:05,141 --> 00:17:07,310 WE'RE LOOKING FORWARD TODAY TO 446 00:17:07,310 --> 00:17:09,279 ALL THE COMMENTS THAT WE'LL HEAR 447 00:17:09,279 --> 00:17:10,613 FROM YOU BUT ALSO WANT TO 448 00:17:10,613 --> 00:17:12,882 EMPHASIZE THIS IS JUST ONE OF 449 00:17:12,882 --> 00:17:15,819 MANY OPPORTUNITIES TO PROVIDE 450 00:17:15,819 --> 00:17:16,019 INPUT. 451 00:17:16,019 --> 00:17:18,154 THERE'S CURRENTLY AN OPEN 452 00:17:18,154 --> 00:17:19,456 OPPORTUNITY TO SUBMIT WRITTEN 453 00:17:19,456 --> 00:17:21,291 COMMENTS TO THE NIH AS WELL AND 454 00:17:21,291 --> 00:17:23,226 I'LL SPEAK MORE ABOUT THAT IN A 455 00:17:23,226 --> 00:17:23,460 MOMENT. 456 00:17:23,460 --> 00:17:25,929 THE UPCOMING FALL AND WINTER 457 00:17:25,929 --> 00:17:28,465 WE'RE ENTHUSIASTIC TO START 458 00:17:28,465 --> 00:17:30,667 HOSTING A SERIES OF COMMUNITY 459 00:17:30,667 --> 00:17:31,334 CONVERSATIONS ACROSS THE UNITED 460 00:17:31,334 --> 00:17:33,203 STATES TO SEEK INPUT AND 461 00:17:33,203 --> 00:17:34,571 FEEDBACK FROM PEOPLE LIKE YOU. 462 00:17:34,571 --> 00:17:36,940 SO PLEASE STAY TUNED FOR MORE 463 00:17:36,940 --> 00:17:39,576 MOTIVATION HOW TO JOIN A 464 00:17:39,576 --> 00:17:39,809 SESSION. 465 00:17:39,809 --> 00:17:44,547 WE'RE ALSO PLANNING ADDITIONAL 466 00:17:44,547 --> 00:17:48,017 MEETINGS AND WE RECEIVED A HIGH 467 00:17:48,017 --> 00:17:51,321 LEVEL OF INTEREST AND YOU CAN 468 00:17:51,321 --> 00:17:52,922 EMAILING THE SCIENCE POLICY 469 00:17:52,922 --> 00:18:02,832 ADDRESS LISTED ON THE SLIDE. 470 00:18:02,832 --> 00:18:04,434 OUR FINAL REPORT WILL BE 471 00:18:04,434 --> 00:18:08,505 RELEASED IN SUMMER 2025 SO CHECK 472 00:18:08,505 --> 00:18:09,305 BACK REGULARLY FOR UPDATES. 473 00:18:09,305 --> 00:18:15,778 AS I MENTIONED, THE NIH IS 474 00:18:15,778 --> 00:18:17,714 CURREN 475 00:18:17,714 --> 00:18:19,015 CURRENTLY SEEKING INFORMATION 476 00:18:19,015 --> 00:18:21,351 VIA RFI, REQUEST FOR 477 00:18:21,351 --> 00:18:22,085 INFORMATION. 478 00:18:22,085 --> 00:18:24,053 VISIT THE ADDRESS ON THE SCREEN 479 00:18:24,053 --> 00:18:25,555 OR SCAN THE QR CODE TO LEARN HOW 480 00:18:25,555 --> 00:18:27,257 TO RESPOND TO THIS OR SIMPLY 481 00:18:27,257 --> 00:18:29,893 VISIT THE WEBSITE WE JUST 482 00:18:29,893 --> 00:18:33,796 MENTIONED, PARTNERS IN 483 00:18:33,796 --> 00:18:36,299 RESEARCH.NIH.gov AND YOU'LL FIND 484 00:18:36,299 --> 00:18:36,766 MORE THERE. 485 00:18:36,766 --> 00:18:39,202 IT PROVIDES A SERIES OF PROMPTS 486 00:18:39,202 --> 00:18:41,304 YOU CAN EASILY RESPOND TO 487 00:18:41,304 --> 00:18:41,538 ONLINE. 488 00:18:41,538 --> 00:18:43,306 PLEASE SEND IN YOUR COMMENTS BY 489 00:18:43,306 --> 00:18:44,841 AUGUST 14, THAT'S THE DEADLINE 490 00:18:44,841 --> 00:18:46,876 FOR THIS FIRST RFI TO MAKE JUR 491 00:18:46,876 --> 00:18:48,912 VOICE HEARD. 492 00:18:48,912 --> 00:18:49,746 -- YOUR VOICE HEARD. 493 00:18:49,746 --> 00:18:52,215 SUE, THE ENTIRE WORKING GROUP 494 00:18:52,215 --> 00:18:53,283 AND I ARE EXTREMELY EXCITED TO 495 00:18:53,283 --> 00:18:54,851 HEAR YOUR THOUGHTS ON THIS TOPIC 496 00:18:54,851 --> 00:18:58,821 AND THANK EVERYONE WHO SIGNED UP 497 00:18:58,821 --> 00:19:02,825 TO PROVIDE COMMENTS TODAY. 498 00:19:02,825 --> 00:19:05,728 WITH THAT I'LL OPEN IT BACK UP 499 00:19:05,728 --> 00:19:07,630 TO LYRIC FOR THE COMMENT PERIOD. 500 00:19:07,630 --> 00:19:08,865 >> THANK YOU, SUE AND CHRIS. 501 00:19:08,865 --> 00:19:11,234 WITH ALL OF THAT IN MIND, WE ARE 502 00:19:11,234 --> 00:19:14,304 REALLY EXCITED TO OPEN MORE TO 503 00:19:14,304 --> 00:19:16,372 HEAR FROM INDIVIDUALS WHO SIGNED 504 00:19:16,372 --> 00:19:17,674 UP TO SPEAK PRIOR TO THE 505 00:19:17,674 --> 00:19:17,907 WEBINAR. 506 00:19:17,907 --> 00:19:18,341 WE'RE EXCITED. 507 00:19:18,341 --> 00:19:20,410 WE HAVE A LOT OF PEOPLE WHO WANT 508 00:19:20,410 --> 00:19:22,512 TO TALK SO I'M GOING TO DO MY 509 00:19:22,512 --> 00:19:24,847 BEST ON REFRAIN ON ENTERING INTO 510 00:19:24,847 --> 00:19:26,849 DISCUSSION TO HEAR ALL THE 511 00:19:26,849 --> 00:19:27,684 PERSPECTIVES THOUGH I THINK IT 512 00:19:27,684 --> 00:19:29,719 WILL BE HARD FOR US NOT WANT TO 513 00:19:29,719 --> 00:19:32,722 ENGAGE GIVEN THE GOALS OF 514 00:19:32,722 --> 00:19:34,824 ENGAGEMENT. 515 00:19:34,824 --> 00:19:38,828 WITH THAT, RYAN, THE DIRECTOR OF 516 00:19:38,828 --> 00:19:39,495 ADMINISTRATION ENGAGEMENT WILL 517 00:19:39,495 --> 00:19:42,665 OPEN AND MODERATE THIS PORTION 518 00:19:42,665 --> 00:19:43,766 OF THE SESSION. 519 00:19:43,766 --> 00:19:44,801 PLEASE TAKE OVER. 520 00:19:44,801 --> 00:19:47,737 >> THANKS, LYRIC. 521 00:19:47,737 --> 00:19:50,273 I'M LETTING IN OUR FIRST 522 00:19:50,273 --> 00:19:52,175 PARTICIPANT, BILLY HANDLIN. 523 00:19:52,175 --> 00:19:53,743 HE SHOULD BE JOINING US IN ONE 524 00:19:53,743 --> 00:20:02,885 MOMENT. 525 00:20:02,885 --> 00:20:04,954 FOR BILLY, I THINK YOU MAY HAVE 526 00:20:04,954 --> 00:20:08,157 YOUR VIDEOCAST ON IN A DIFFERENT 527 00:20:08,157 --> 00:20:09,993 WINDOW IF YOU COULD MUTE THAT SO 528 00:20:09,993 --> 00:20:12,228 WE CAN HEAR YOUR COMMENTS. 529 00:20:12,228 --> 00:20:16,866 I'M GOING TO PUT UP A TIMER TO 530 00:20:16,866 --> 00:20:18,835 HELP GUIDE YOUR COMMENTS AND 531 00:20:18,835 --> 00:20:22,839 WHENEVER YOU ARE READY, YOU MAY 532 00:20:22,839 --> 00:20:24,507 START. 533 00:20:24,507 --> 00:20:26,843 >> THANK YOU FOR THAT, RYAN. 534 00:20:26,843 --> 00:20:30,380 CAN YOU HEAR ME? 535 00:20:30,380 --> 00:20:30,780 OKAY. 536 00:20:30,780 --> 00:20:31,047 WONDERFUL. 537 00:20:31,047 --> 00:20:35,718 I JUST FIRST WANTED TO THANK NIH 538 00:20:35,718 --> 00:20:37,620 OSP FOR HOSTING THE PUBLIC 539 00:20:37,620 --> 00:20:37,887 FORUM. 540 00:20:37,887 --> 00:20:39,789 I THINK THE WORK IS IMPORTANT 541 00:20:39,789 --> 00:20:41,724 AND IT'S SO IMPORTANT. 542 00:20:41,724 --> 00:20:44,761 THE FOLLOWING IS MY PUBLIC 543 00:20:44,761 --> 00:20:47,930 COMMENT AND DO MY BEST TO STAY 544 00:20:47,930 --> 00:20:49,499 BRIEF AND THE RECOVER INITIATIVE 545 00:20:49,499 --> 00:20:50,867 STUDYING LONG COVID HAS BEEN 546 00:20:50,867 --> 00:20:52,802 REPORTED IN THE PRESS AT LENG 547 00:20:52,802 --> 00:20:53,736 MANY. 548 00:20:53,736 --> 00:20:56,139 ONE CENTRAL CONCERN HAS BEEN THE 549 00:20:56,139 --> 00:20:58,841 LACK OF PATIENT INCLUSION IN A 550 00:20:58,841 --> 00:21:05,715 MEANINGFUL WAY WITH RESPECT TO 551 00:21:05,715 --> 00:21:07,717 THE CLINICAL TRIAL DESIGN 552 00:21:07,717 --> 00:21:09,585 DESPITE PUBLIC'S PLEASE THEY'VE 553 00:21:09,585 --> 00:21:10,520 FORGED LEAD ON WHAT SEEMS TO BE 554 00:21:10,520 --> 00:21:11,688 THEIR OWN INTENTIONS. 555 00:21:11,688 --> 00:21:14,791 THIS IS REFLECTED IN THE 556 00:21:14,791 --> 00:21:16,192 CLINICAL TRIALS SO FAR HAVE BEEN 557 00:21:16,192 --> 00:21:18,094 RATHER UNAMBITIOUS AND 558 00:21:18,094 --> 00:21:19,362 DISCONNECT WITH THE COMMUNITY. 559 00:21:19,362 --> 00:21:22,832 MOST INTERVENTIONS DIDN'T AIM AT 560 00:21:22,832 --> 00:21:26,235 THE POSSIBLE BIOLOGICAL UNDER 561 00:21:26,235 --> 00:21:27,870 PROCESSES UNDERLYING THE ILLNESS 562 00:21:27,870 --> 00:21:29,138 WHILE THE APPRECIATION PUBLIC 563 00:21:29,138 --> 00:21:30,740 FUNDS HAVE BEEN SUPPORTING THE 564 00:21:30,740 --> 00:21:30,940 WORK. 565 00:21:30,940 --> 00:21:40,750 THE FRUSTRATIONS HAVE MIRRORED 566 00:21:40,750 --> 00:21:40,983 ME/CFS. 567 00:21:40,983 --> 00:21:45,922 IT'S AN INFECTIOUS ASSOCIATED 568 00:21:45,922 --> 00:21:50,693 DISEASE IT MEETING THE 569 00:21:50,693 --> 00:21:53,062 DIAGNOSTIC CRITERIA. 570 00:21:53,062 --> 00:21:59,335 OSP I'M URGING NIH AND 571 00:21:59,335 --> 00:22:01,270 LEADERSHIP TO LOOK TO THE 572 00:22:01,270 --> 00:22:04,273 CLINICAL TRIAL RECOMMENDATIONS 573 00:22:04,273 --> 00:22:14,884 FOR LONG COVID IN ME/CFS. 574 00:22:14,884 --> 00:22:20,757 DR. NATH CAMPAIGNED FOR 575 00:22:20,757 --> 00:22:22,825 INTERVENTIONS AND THE NEW 576 00:22:22,825 --> 00:22:26,095 DIRECTOR BERTAGNOLLI SAID THE 577 00:22:26,095 --> 00:22:28,965 FUNDS WOULD GO TO THE NEXT ROUND 578 00:22:28,965 --> 00:22:32,201 OF THE NIH MEETING IN JUNE. 579 00:22:32,201 --> 00:22:33,469 HEEDING THIS ADVICE WOULD BE 580 00:22:33,469 --> 00:22:36,038 WELCOME AND ALIGN WITH THEIR 581 00:22:36,038 --> 00:22:38,841 LEADER JUST HONORED FOR THEIR 582 00:22:38,841 --> 00:22:41,744 INFLUENCE AS A TRUSTED MENTAL 583 00:22:41,744 --> 00:22:45,615 HEALTH LEADING. 584 00:22:45,615 --> 00:22:47,583 FUNDING ME-CFS FOR RESEARCH AND 585 00:22:47,583 --> 00:22:48,951 SPEARHEADING PROMISING CLINICAL 586 00:22:48,951 --> 00:22:51,587 TRIALS WOULD BE AN APT STARTING 587 00:22:51,587 --> 00:22:53,356 POINT FOR THE BRIGHTER FUTURE 588 00:22:53,356 --> 00:22:57,860 AND MAKE IT MORE LIKELY TO 589 00:22:57,860 --> 00:23:02,098 AUTHENTICALLY ENGAGE WITH NIH 590 00:23:02,098 --> 00:23:04,500 AND NEW INSTITUTIONAL LEADERSHIP 591 00:23:04,500 --> 00:23:07,303 RECOGNIZED THE WOUNDS AND 592 00:23:07,303 --> 00:23:07,570 BLEMISHES. 593 00:23:07,570 --> 00:23:09,238 NOW IT'S TIME TO SUBSEQUENT 594 00:23:09,238 --> 00:23:10,840 ACTIONS TO INDICATE CHANGE IS 595 00:23:10,840 --> 00:23:12,141 INDEED UNDERWAY. 596 00:23:12,141 --> 00:23:13,009 THANK YOU AGAIN FOR HOSTING THIS 597 00:23:13,009 --> 00:23:14,844 TODAY AND THANK YOU FOR YOUR 598 00:23:14,844 --> 00:23:24,854 TIME. 599 00:23:24,854 --> 00:23:26,823 >> THANK YOU. 600 00:23:26,823 --> 00:23:31,294 I'M LETTING IN BRIAN DINGER NEXT 601 00:23:31,294 --> 00:23:34,831 FROM THE WAITING ROOM. 602 00:23:34,831 --> 00:23:44,340 ARE YOU ABLE TO HEAR US? 603 00:23:44,340 --> 00:23:46,609 >> BRIAN, YOU MAY HAVE YOUR 604 00:23:46,609 --> 00:23:49,579 VIDEOCAST ON IN ANOTHER WINDOW. 605 00:23:49,579 --> 00:23:51,848 IF YOU CAN MUTE THAT WHILE 606 00:23:51,848 --> 00:23:52,415 YOU'RE GIVING YOUR COMMENTS 607 00:23:52,415 --> 00:23:52,615 HERE. 608 00:23:52,615 --> 00:23:52,949 >> THANK YOU. 609 00:23:52,949 --> 00:23:53,516 I CLOSED THAT WINDOW. 610 00:23:53,516 --> 00:23:56,886 YOU CAN HEAR ME WELL? 611 00:23:56,886 --> 00:23:58,588 >> YEAH, TELL ME WHEN YOU WANT 612 00:23:58,588 --> 00:24:03,693 ME TO ARE THE START THE 613 00:24:03,693 --> 00:24:04,794 COUNTDOWN. 614 00:24:04,794 --> 00:24:10,466 >> I'M PART OF THE DUCHENNE'S 615 00:24:10,466 --> 00:24:12,802 MUSCULAR CAN CAN DYSTROPHY AND 616 00:24:12,802 --> 00:24:15,137 MY COMMENTS ARE ACCESSING MORE 617 00:24:15,137 --> 00:24:17,740 INDIVIDUALS BROADLY TO THE 618 00:24:17,740 --> 00:24:18,808 CONVERSATIONS. 619 00:24:18,808 --> 00:24:20,977 IN MANY YEARS INVOLVED WITH RARE 620 00:24:20,977 --> 00:24:22,812 DISEASE ADVOCACY ORGANIZATIONS 621 00:24:22,812 --> 00:24:24,146 I'VE HAD NUMEROUS OPPORTUNITIES 622 00:24:24,146 --> 00:24:26,482 TO PARTICIPATE IN NIH AND ATTEND 623 00:24:26,482 --> 00:24:28,150 SCIENTIFIC MEETINGS AND 624 00:24:28,150 --> 00:24:29,151 WORKSHOPS AND HAVE BEEN INVOLVED 625 00:24:29,151 --> 00:24:31,988 WITH LISTENING SESSIONS WITH 626 00:24:31,988 --> 00:24:34,390 COMPANIES SEEKING MY OPINION 627 00:24:34,390 --> 00:24:36,993 ABOUT POTENTIAL AND ONGOING 628 00:24:36,993 --> 00:24:38,160 RESEARCH AND HAVE ALSO MADE AN 629 00:24:38,160 --> 00:24:42,098 EFFORT TO REACH OUT TO LOCAL 630 00:24:42,098 --> 00:24:46,135 SCIENTISTS AT THE JACKSON 631 00:24:46,135 --> 00:24:48,371 LABORATORIES IN MAINE AND MET 632 00:24:48,371 --> 00:24:53,743 REGULARLY FOR 20 YEARS. 633 00:24:53,743 --> 00:24:58,447 THERE ARE MANY PEOPLE IN THE 634 00:24:58,447 --> 00:24:59,115 DISEASE COMMUNITY. 635 00:24:59,115 --> 00:25:01,784 WE'RE A BIASSED SAMPLE AND I 636 00:25:01,784 --> 00:25:02,385 RECOGNIZE THAT'S PARTS OF THE 637 00:25:02,385 --> 00:25:02,585 ISSUE. 638 00:25:02,585 --> 00:25:05,721 WE NEED TO REACH OUT TO MORE 639 00:25:05,721 --> 00:25:07,456 INDIVIDUALS. 640 00:25:07,456 --> 00:25:08,858 SOLICITING PARTICIPATION THROUGH 641 00:25:08,858 --> 00:25:10,826 ADVOCACY ORGANIZATIONS IS AN 642 00:25:10,826 --> 00:25:11,761 IMPORTANT ELEMENT IN FINDING 643 00:25:11,761 --> 00:25:13,930 ADDITIONAL PARTICIPANTS. 644 00:25:13,930 --> 00:25:15,798 FAMILIES CONNECTED TO THESE 645 00:25:15,798 --> 00:25:16,766 ORGANIZATIONS ARE GENERALLY 646 00:25:16,766 --> 00:25:20,369 INFORMED AND MOTIVATED TO HELP. 647 00:25:20,369 --> 00:25:22,772 GENERALLY LEADERSHIP OF THESE 648 00:25:22,772 --> 00:25:25,541 ORGANIZATIONS KNOW MANY WITHIN 649 00:25:25,541 --> 00:25:26,943 THE COMMUNITY AND SPONSOR 650 00:25:26,943 --> 00:25:28,311 REGISTRIES AND DATABASES WHICH 651 00:25:28,311 --> 00:25:31,380 MAY BE HELPFUL IN IDENTIFYING 652 00:25:31,380 --> 00:25:32,815 ADDITIONAL TARGETS OF A SUBSET 653 00:25:32,815 --> 00:25:34,917 OF A POPULATION OF INTEREST TO 654 00:25:34,917 --> 00:25:38,587 AN OUTSIDE GROUP. 655 00:25:38,587 --> 00:25:41,590 ADVOCACY ORGANIZATIONS ALSO HOST 656 00:25:41,590 --> 00:25:42,825 REGULAR CONFERENCES AND MEETINGS 657 00:25:42,825 --> 00:25:45,328 WHICH MAY BE HELPFUL IN 658 00:25:45,328 --> 00:25:46,462 ENGAGEMENT WITH RESEARCH AND 659 00:25:46,462 --> 00:25:47,730 MEMBERS OF THE PATIENT 660 00:25:47,730 --> 00:25:48,698 COMMUNITY. 661 00:25:48,698 --> 00:25:50,833 THE PROCESS MAKES THESE GROUPS 662 00:25:50,833 --> 00:25:53,035 GATE KEEPERS FOR INTERESTED 663 00:25:53,035 --> 00:25:55,404 PARTICIPANTS AND LIMITS THE TO 664 00:25:55,404 --> 00:25:57,506 THOSE WHO WILL BE PARTICIPATING 665 00:25:57,506 --> 00:25:59,742 IN THE ORGANIZATION'S ACTIVITIES 666 00:25:59,742 --> 00:26:01,477 AND THE NEED FOR MORE INFORMED 667 00:26:01,477 --> 00:26:03,346 PARTICIPANTS DOES COME AT THE 668 00:26:03,346 --> 00:26:05,781 COST OF BEING SELECTED BY THE 669 00:26:05,781 --> 00:26:07,950 LEADERSHIP OF THESE 670 00:26:07,950 --> 00:26:08,284 ORGANIZATIONS. 671 00:26:08,284 --> 00:26:10,353 AS IS TRUE IN THE RARE AND MORE 672 00:26:10,353 --> 00:26:12,088 COMMON DISEASE COMMUNITIES, 673 00:26:12,088 --> 00:26:13,122 PATIENT AGE, CURRENT DISEASE 674 00:26:13,122 --> 00:26:15,358 STATE AND OTHER FACTORS SUCH AS 675 00:26:15,358 --> 00:26:18,060 DEMOGRAPHICS AND ABILITY TO 676 00:26:18,060 --> 00:26:19,695 ACCESS APPROPRIATE CARE INFORMS 677 00:26:19,695 --> 00:26:20,129 THEIR OPINION. 678 00:26:20,129 --> 00:26:22,698 THESE PEOPLE'S OPINIONS ARE 679 00:26:22,698 --> 00:26:24,300 EQUALLY AS IMPORTANT YET SOME 680 00:26:24,300 --> 00:26:26,836 WITHIN THE COMMUNITY ARE MORE 681 00:26:26,836 --> 00:26:27,737 DIFFICULT TO REACH. 682 00:26:27,737 --> 00:26:29,705 EFFORTS TO REACH A LARGER SAMPLE 683 00:26:29,705 --> 00:26:32,575 OF THE DISEASE COMMUNITY WILL 684 00:26:32,575 --> 00:26:35,211 TAKE CREATIVE MEASURES INCLUDING 685 00:26:35,211 --> 00:26:36,812 IDENTIFYING THOSE UNABLE TO MEET 686 00:26:36,812 --> 00:26:39,248 THE COMMUNITY TARGETING CLINICS 687 00:26:39,248 --> 00:26:42,685 AND HOSPITALS FOR THE GROUP OF 688 00:26:42,685 --> 00:26:45,287 INTEREST ARE LIKELY OUR BEST 689 00:26:45,287 --> 00:26:47,289 OPPORTUNITIES AND ANOTHER WAY OF 690 00:26:47,289 --> 00:26:49,392 REACHING OUT TO THESE PATIENT 691 00:26:49,392 --> 00:26:50,826 COMMUNITIES WHETHER IT'S THROUGH 692 00:26:50,826 --> 00:26:53,763 POLLING, DIRECT CONTACT, ALL OF 693 00:26:53,763 --> 00:26:54,830 THESE ARE MEASURES TO INCREASE 694 00:26:54,830 --> 00:26:58,100 THE VOICE OF THOSE WHO ARE LEFT 695 00:26:58,100 --> 00:27:08,611 OUTSIDE THE LARGER COMMUNITY. 696 00:27:09,378 --> 00:27:09,812 THANK YOU. 697 00:27:09,812 --> 00:27:11,781 >> THANK YOU, BRIAN. 698 00:27:11,781 --> 00:27:15,184 THERE'S NO ONE CURRENTLY IN THE 699 00:27:15,184 --> 00:27:17,486 WAITING ROOM OUR NEXT SPEAKER 700 00:27:17,486 --> 00:27:21,257 HAS NOT SHOWED UP IF YOU HAVE 701 00:27:21,257 --> 00:27:22,091 ANOTHER POINT YOU WANTED TO MAKE 702 00:27:22,091 --> 00:27:22,825 FEEL FREE. 703 00:27:22,825 --> 00:27:25,161 >> THANK YOU, I WAS RUSHING 704 00:27:25,161 --> 00:27:27,863 THROUGH MY LAST COMMENT. 705 00:27:27,863 --> 00:27:31,867 SO FOLLOWING UP WITH REGULAR 706 00:27:31,867 --> 00:27:34,837 VIRTUAL MEETINGS IS IMPORTANT TO 707 00:27:34,837 --> 00:27:36,839 SCREEN INDIVIDUALS BY PHONE OR 708 00:27:36,839 --> 00:27:41,744 BY COMPUTER ACCESS. 709 00:27:41,744 --> 00:27:42,812 THAT'S IMPORTANT IN IDENTIFYING 710 00:27:42,812 --> 00:27:45,347 PEOPLE OUTSIDE THE TYPICAL 711 00:27:45,347 --> 00:27:47,583 SELECTION GROUP WHO ARE 712 00:27:47,583 --> 00:27:48,250 PARTICIPANTS WITH THESE ADVOCACY 713 00:27:48,250 --> 00:27:52,188 ORGANIZATIONS. 714 00:27:52,188 --> 00:27:54,056 ANOTHER OPPORTUNITY IS ENSURING 715 00:27:54,056 --> 00:27:57,093 THAT THERE ARE REGULAR FOLLOW-UP 716 00:27:57,093 --> 00:27:59,762 MEETINGS WITH THESE INDIVIDUALS 717 00:27:59,762 --> 00:28:01,097 TO DETERMINE WHO WOULD BE MOST 718 00:28:01,097 --> 00:28:05,768 APPROPRIATE FOR YOUR ENGAGEMENT. 719 00:28:05,768 --> 00:28:08,437 THE OTHER ASPECT IS TIMING OF 720 00:28:08,437 --> 00:28:11,740 THE MEETS WILL NEED TO BE 721 00:28:11,740 --> 00:28:12,007 FLEXIBLE. 722 00:28:12,007 --> 00:28:17,780 WHILE EVENING MEETINGS MAY WORK 723 00:28:17,780 --> 00:28:20,282 FOR CARETAKERS IT LATE NIGHT MAY 724 00:28:20,282 --> 00:28:25,187 BE MORE SUITABLE WHO CANNOT 725 00:28:25,187 --> 00:28:27,756 COMMIT EARLIER IN THE DAY. 726 00:28:27,756 --> 00:28:31,393 SPREADING A LARGER NET NEEDS TO 727 00:28:31,393 --> 00:28:34,830 ACCOUNT FOR IF CONFLICTS IN 728 00:28:34,830 --> 00:28:35,998 REGULAR ATTENDANCE OR LIMITS FOR 729 00:28:35,998 --> 00:28:37,833 THOSE WHO WANT TO CONNECT AND 730 00:28:37,833 --> 00:28:39,568 FINDING THE MOST INTERESTED 731 00:28:39,568 --> 00:28:39,902 PARTICIPANTS. 732 00:28:39,902 --> 00:28:41,804 AS A CORE OF INTERESTED 733 00:28:41,804 --> 00:28:43,005 PARTICIPANTS IS IDENTIFIED, 734 00:28:43,005 --> 00:28:45,307 FURTHER POLLING MAY BE HELPFUL 735 00:28:45,307 --> 00:28:47,543 IN ENSURING SCHEDULING 736 00:28:47,543 --> 00:28:48,377 APPROPRIATE MEETING TIME FOR 737 00:28:48,377 --> 00:28:49,778 THOSE THAT WORK. 738 00:28:49,778 --> 00:28:51,847 ADDITIONAL STARTING POINTS 739 00:28:51,847 --> 00:28:52,681 INCLUDE DETERMINING WHETHER A 740 00:28:52,681 --> 00:28:53,749 PARTICULAR COMMUNITY HAS A 741 00:28:53,749 --> 00:28:58,754 CONNECTED GROUP OF PATIENT 742 00:28:58,754 --> 00:29:00,923 AND/OR CAREGIVERS WHETHER 743 00:29:00,923 --> 00:29:02,825 THROUGH SOCIAL MEDIA OR ADVOCACY 744 00:29:02,825 --> 00:29:03,159 ORGANIZATION. 745 00:29:03,159 --> 00:29:04,460 THERE MAY BE GROUPS UNABLE TO 746 00:29:04,460 --> 00:29:06,962 MEET IN PERSON OR BROADER IN 747 00:29:06,962 --> 00:29:07,997 CONNECTED AGAIN BY SOCIAL MEDIA. 748 00:29:07,997 --> 00:29:11,433 WHEN LED BY A MEMBER OF AN 749 00:29:11,433 --> 00:29:12,735 ADVOCACY ORGANIZATION, OR A 750 00:29:12,735 --> 00:29:14,069 METHOD TO ENSURE MEMBERS ARE 751 00:29:14,069 --> 00:29:15,838 PART OF A COMMUNITY, THAT CAN BE 752 00:29:15,838 --> 00:29:17,806 A SOURCE FOR NEW VOICES NEEDED 753 00:29:17,806 --> 00:29:18,807 TO INTERACT WITH RESEARCHERS. 754 00:29:18,807 --> 00:29:28,918 THANK YOU. 755 00:29:28,918 --> 00:29:29,785 >> THANK YOU. 756 00:29:29,785 --> 00:29:34,823 OUR NEXT SPEAKER IS GOING TO BE 757 00:29:34,823 --> 00:29:36,759 C. DANIEL MULLENS. 758 00:29:36,759 --> 00:29:38,561 CAN YOU HEAR ME? 759 00:29:38,561 --> 00:29:40,963 >> YES, THANK YOU VERY MUCH. 760 00:29:40,963 --> 00:29:44,667 THANK YOU FOR THE OPPORTUNITY TO 761 00:29:44,667 --> 00:29:45,768 PROVIDE COMMENTS. 762 00:29:45,768 --> 00:29:48,437 TRUSTWORTHY COMMUNITY ACADEMIC 763 00:29:48,437 --> 00:29:49,939 PARTNERSHIPS ARE CO-DEVELOPED 764 00:29:49,939 --> 00:29:50,806 AND SUSTAINABLE. 765 00:29:50,806 --> 00:29:53,809 OTHERWISE EFFORTS TO IMPROVE 766 00:29:53,809 --> 00:29:55,611 PUBLIC ENGAGEMENT IN CLINICAL 767 00:29:55,611 --> 00:29:57,112 RESEARCH ARE TRANSACTIONAL NOT 768 00:29:57,112 --> 00:29:58,480 AUTHENTIC. 769 00:29:58,480 --> 00:29:59,782 HELICOPTER RESEARCH IS WHEN 770 00:29:59,782 --> 00:30:00,816 RESEARCHERS SCOOP INTO 771 00:30:00,816 --> 00:30:03,986 COMMUNITIES TO OBTAIN DATA OR 772 00:30:03,986 --> 00:30:05,554 BIO SPECIMENS LEAVE BEHIND GIFT 773 00:30:05,554 --> 00:30:08,290 CARDS FOR PARTICIPANTS THEN 774 00:30:08,290 --> 00:30:10,492 SWOOP BACK OUT WITHOUT 775 00:30:10,492 --> 00:30:11,694 MEANINGFUL COLLABORATION WITH 776 00:30:11,694 --> 00:30:12,194 COMMUNITY STAKEHOLDERS. 777 00:30:12,194 --> 00:30:14,830 THANK YOU FOR ALLOWING ME THE 778 00:30:14,830 --> 00:30:16,999 OPPORTUNITY TO COMMENT. 779 00:30:16,999 --> 00:30:21,103 I, DANIEL MULLINS HAVE HAD THE 780 00:30:21,103 --> 00:30:22,838 PLEASURE OF WORKING WITH SEVERAL 781 00:30:22,838 --> 00:30:25,541 COMMUNITY LEADERS IN WEST 782 00:30:25,541 --> 00:30:29,912 BALTIMORE TO BUILD AN ACADEMIC 783 00:30:29,912 --> 00:30:32,414 COMMUNITY CALLED THE PATIENTS 784 00:30:32,414 --> 00:30:32,648 PROGRAM. 785 00:30:32,648 --> 00:30:35,818 STARTED BY AN AGENCY R24 786 00:30:35,818 --> 00:30:37,953 INFRASTRUCTURE GRANT IN 2012. 787 00:30:37,953 --> 00:30:38,821 OUR GOVERNANCE STRUCTURE 788 00:30:38,821 --> 00:30:42,458 REQUIRES THE MAJORITY OF OUR 789 00:30:42,458 --> 00:30:43,626 STEERING COMMUNITY MEMBERS ARE 790 00:30:43,626 --> 00:30:45,794 PATIENTS AND COMMUNITY LEADERS 791 00:30:45,794 --> 00:30:51,133 NOT PART OF UNIVERSITY OF 792 00:30:51,133 --> 00:30:51,567 MARYLAND-BALTIMORE. 793 00:30:51,567 --> 00:30:52,701 THEY CAN HOST COMMUNITY MEMBERS 794 00:30:52,701 --> 00:30:54,470 INTEREST THE UNIVERSITY. 795 00:30:54,470 --> 00:30:55,504 INFRASTRUCTURE AND GOVERNANCE 796 00:30:55,504 --> 00:30:58,841 STRUCTURE HAS A HUGE IMPACT ON 797 00:30:58,841 --> 00:30:59,775 PUBLIC ENGAGEMENT AND CLINICAL 798 00:30:59,775 --> 00:31:01,310 RESEARCH AND TRUST IN 799 00:31:01,310 --> 00:31:02,278 TRANSLATIONAL SCIENCE. 800 00:31:02,278 --> 00:31:05,381 THE PATIENTS PROGRAM HAS BEEN 801 00:31:05,381 --> 00:31:07,816 FUNDED BY SEVERAL NIH INSTITUTES 802 00:31:07,816 --> 00:31:10,386 AND OTHERS SUCH AS THE U.S. FOOD 803 00:31:10,386 --> 00:31:12,955 AND DRUG ADMINISTRATION AND THE 804 00:31:12,955 --> 00:31:14,256 OUTCOMES RESEARCH. 805 00:31:14,256 --> 00:31:15,457 OUR DIVERSIFIED FUNDING STREAM 806 00:31:15,457 --> 00:31:18,327 SUPPORTS SUSTAINABILITY YET MANY 807 00:31:18,327 --> 00:31:19,895 COMMUNITY ACADEMIC PARTNERSHIPS 808 00:31:19,895 --> 00:31:22,131 DISSOLVE AT THE END OF A SINGLE 809 00:31:22,131 --> 00:31:23,232 GRANT BECAUSE THERE ARE NO FUNDS 810 00:31:23,232 --> 00:31:24,900 TO SUPPORT CONTINUATION. 811 00:31:24,900 --> 00:31:28,437 IN MANY INSTANCES COMMUNITY 812 00:31:28,437 --> 00:31:30,472 MEMBERS FEEL ABANDONED, PATIENTS 813 00:31:30,472 --> 00:31:32,408 FEEL USED AND THE PUBLIC ONCE 814 00:31:32,408 --> 00:31:35,544 AGAIN FEELS THEY'RE TREATED LIKE 815 00:31:35,544 --> 00:31:37,880 GUINEA PIGS RATHER THAN 816 00:31:37,880 --> 00:31:38,280 PARTNERS. 817 00:31:38,280 --> 00:31:45,621 MY SECOND POINT, NIH FUNDING 818 00:31:45,621 --> 00:31:47,156 SHOULD EXIST BEYOND A SINGLE 819 00:31:47,156 --> 00:31:49,358 PROJECT AND RETURN RESULTS TO 820 00:31:49,358 --> 00:31:51,727 PATIENTS WHO VOLUNTEER IN 821 00:31:51,727 --> 00:31:52,728 CLINICAL RESEARCH STUDIES YET 822 00:31:52,728 --> 00:31:54,830 OFTEN IS THE RETURN OF RESULTS 823 00:31:54,830 --> 00:31:59,068 IS WITHOUT MEANINGFUL 824 00:31:59,068 --> 00:32:00,836 TRANSLATION AND BROADER 825 00:32:00,836 --> 00:32:02,338 DISSEMINATION WOULD LEAD TO 826 00:32:02,338 --> 00:32:04,573 FASTER AND TRANSLATION OF 827 00:32:04,573 --> 00:32:07,710 RESEARCH FIND TO ROUTINE 828 00:32:07,710 --> 00:32:08,410 CLINICAL PRACTICE. 829 00:32:08,410 --> 00:32:11,347 MY THIRD AND FINAL POINT. 830 00:32:11,347 --> 00:32:13,148 WE CAN DO A BETTER JOB IF WE 831 00:32:13,148 --> 00:32:15,217 EXPLAIN HOW RESEARCH FINDINGS 832 00:32:15,217 --> 00:32:17,252 ARE SOLUTIONS TO THE HEALTH 833 00:32:17,252 --> 00:32:18,620 PROBLEMS PATIENTS FACE. 834 00:32:18,620 --> 00:32:21,190 WE CAN AND MUST DO BETTER AT 835 00:32:21,190 --> 00:32:22,825 DISSEMINATING HEALTH SOLUTIONS 836 00:32:22,825 --> 00:32:23,759 AND THAT SHOULD OCCURRED BEYOND 837 00:32:23,759 --> 00:32:25,794 THE END OF A SINGLE RESEARCH 838 00:32:25,794 --> 00:32:26,362 GRANT. 839 00:32:26,362 --> 00:32:29,198 IN SUMMARY, NIH FUNDING SHOULD 840 00:32:29,198 --> 00:32:32,735 SUPPORT AND DEMAND CONTINUOUS 841 00:32:32,735 --> 00:32:34,470 ENGAGEMENT IN CLINICAL RESEARCH 842 00:32:34,470 --> 00:32:36,605 BOTH SHORT-TERM INNOVATION AND 843 00:32:36,605 --> 00:32:37,139 SCIENTIFIC DISCOVERY AND 844 00:32:37,139 --> 00:32:38,607 LONG-TERM COMMUNITY ACADEMIC 845 00:32:38,607 --> 00:32:40,976 PARTNERSHIPS FOR ENGAGEMENT IN 846 00:32:40,976 --> 00:32:41,810 CLINICAL RESEARCH. 847 00:32:41,810 --> 00:32:51,987 THANK YOU. 848 00:32:54,123 --> 00:32:54,823 >> THANK YOU. 849 00:32:54,823 --> 00:32:57,893 THE NEXT SPEAKER IS TRACY 850 00:32:57,893 --> 00:32:58,827 MUELLER. 851 00:32:58,827 --> 00:33:05,801 JOINING US MOMENTARILY. 852 00:33:05,801 --> 00:33:15,911 HEL 853 00:33:18,247 --> 00:33:18,380 HELLO. 854 00:33:18,380 --> 00:33:22,818 >> MY NAME IS TRACY WHEELER WITH 855 00:33:22,818 --> 00:33:27,289 A NON-PROFIT THAT FUNDS RESEARCH 856 00:33:27,289 --> 00:33:28,724 AND PROGRAMS IN SPINAL CORD 857 00:33:28,724 --> 00:33:28,991 INJURY. 858 00:33:28,991 --> 00:33:33,262 I WAS SO EXCITED TO SEE THAT THE 859 00:33:33,262 --> 00:33:34,530 THOUGHT OF CREATING A WEBINAR 860 00:33:34,530 --> 00:33:35,330 LIKE THIS. 861 00:33:35,330 --> 00:33:37,666 I'M PLEASED TO HAVE THE 862 00:33:37,666 --> 00:33:40,202 OPPORTUNITY TO ACTUALLY 863 00:33:40,202 --> 00:33:41,804 CONTRIBUTE TO IT. 864 00:33:41,804 --> 00:33:44,740 AS A PROGRAM OFFICER I MANAGE 865 00:33:44,740 --> 00:33:49,378 SOME OF THE RESEARCH THAT THE 866 00:33:49,378 --> 00:33:53,782 FOUNDATION SUPPORTS AND I'M 867 00:33:53,782 --> 00:33:57,019 MOSTLY CONCERNED ABOUT BANDWIDTH 868 00:33:57,019 --> 00:33:58,821 BOTTLENECKS AND EFFECTIVENESS 869 00:33:58,821 --> 00:33:59,822 WHEN PARTNERING. 870 00:33:59,822 --> 00:34:02,291 THE CLINICAL TRIALS I'M 871 00:34:02,291 --> 00:34:04,059 SUPPORTING CAN REACH OUT TO 872 00:34:04,059 --> 00:34:09,031 SEVERAL GREAT COMMUNITY 873 00:34:09,031 --> 00:34:10,766 ORGANIZATIONS THAT WE HAVE IN 874 00:34:10,766 --> 00:34:12,835 THE FINAL CORT INJURY FIELD TO 875 00:34:12,835 --> 00:34:14,403 BUILD THE PARTNERSHIPS. 876 00:34:14,403 --> 00:34:19,374 WHAT I SEE IS THAT EFFECTIVE 877 00:34:19,374 --> 00:34:22,644 PARTNERING REALLY REQUIRES HIGH 878 00:34:22,644 --> 00:34:22,845 TOUCH. 879 00:34:22,845 --> 00:34:24,413 FINDING THE RIGHT PERSON TO WORK 880 00:34:24,413 --> 00:34:25,547 WITH THE RIGHT GROUP AND HOW 881 00:34:25,547 --> 00:34:28,417 THAT ALL WORKS OUT RIGHT NOW IS 882 00:34:28,417 --> 00:34:31,620 BEING DONE AGAIN PHENOMENALLY 883 00:34:31,620 --> 00:34:33,055 BUT WHAT HAPPENS WHEN THIS 884 00:34:33,055 --> 00:34:33,288 SCALES? 885 00:34:33,288 --> 00:34:34,823 THAT'S WHAT I ENVISION FOR THE 886 00:34:34,823 --> 00:34:39,628 FUTURE. 887 00:34:39,628 --> 00:34:45,200 SO MY COMMENT IS, IF THERE'S ANY 888 00:34:45,200 --> 00:34:46,835 WAY AN ORGANIZATION THAT'S LARGE 889 00:34:46,835 --> 00:34:50,672 AND WELL KNOWN SUCH AS THE NIH 890 00:34:50,672 --> 00:34:52,040 COULD HELP THESE ORGANIZATIONS 891 00:34:52,040 --> 00:34:56,545 OR HELP PARTNER WITH THEM SO 892 00:34:56,545 --> 00:34:58,814 THEY'RE EFFECTIVENESS AND THE 893 00:34:58,814 --> 00:35:06,355 SMALLER SCALE CAN HANDLE THE 894 00:35:06,355 --> 00:35:09,091 GROWTH I ANTICIPATE THEY 895 00:35:09,091 --> 00:35:09,725 EXPERIENCE AND IF YOU PULL 896 00:35:09,725 --> 00:35:11,793 SOMEONE OFF THE STREETS AND ASK 897 00:35:11,793 --> 00:35:13,929 THEM IF THEY KNOW OF THE 898 00:35:13,929 --> 00:35:15,030 NATIONAL INSTITUTES OF HEALTH 899 00:35:15,030 --> 00:35:20,168 WILL THEY SAY THE SAME WITH THE 900 00:35:20,168 --> 00:35:23,805 SPINAL CORD INJURY CORNER 901 00:35:23,805 --> 00:35:24,740 CONSORTIUM? 902 00:35:24,740 --> 00:35:26,074 I DON'T THINK SO. 903 00:35:26,074 --> 00:35:34,816 I THINK AS YOU THINK ABOUT THIS 904 00:35:34,816 --> 00:35:37,719 PROBLEM, I ENCOURAGE YOU TO 905 00:35:37,719 --> 00:35:38,820 SPEND TIME THINK ABOUT THE 906 00:35:38,820 --> 00:35:41,123 SUPPORT AND INFORMATION SHARING 907 00:35:41,123 --> 00:35:45,527 THAT CAN HAPPEN WITH THE 908 00:35:45,527 --> 00:35:46,828 GRASSROOTS AND ORGANIZATIONS TO 909 00:35:46,828 --> 00:35:47,229 REMAIN EFFECTIVE. 910 00:35:47,229 --> 00:35:55,437 THANK YOU. 911 00:35:55,437 --> 00:35:56,271 >> BEFORE YOU MOVE TO THE NEXT 912 00:35:56,271 --> 00:35:58,140 ONE I WANT TO MAKE IT CLEAR TO 913 00:35:58,140 --> 00:36:02,578 THOSE ON THE WEBINAR I CAN SEE 914 00:36:02,578 --> 00:36:04,546 ALL MY FELLOW LEADS FURIOUSLY 915 00:36:04,546 --> 00:36:09,518 WRITING THINGS DOWN AND SEE YOUR 916 00:36:09,518 --> 00:36:10,152 HEADS CONTINUOUSLY GOING LIKE 917 00:36:10,152 --> 00:36:11,820 THIS BECAUSE WE'RE TAKING NOTES. 918 00:36:11,820 --> 00:36:12,721 THANK YOU SO MUCH. 919 00:36:12,721 --> 00:36:16,425 >> OUR NEXT SPEAKER COMING IN IS 920 00:36:16,425 --> 00:36:17,960 ANNA POLLA. 921 00:36:17,960 --> 00:36:18,427 SHE SHOULD BE JOINING 922 00:36:18,427 --> 00:36:28,637 MOMENTARILY. 923 00:36:31,073 --> 00:36:33,175 YOU MAY HAVE A VIDEOCAST ON IN A 924 00:36:33,175 --> 00:36:34,843 SEPARATE WINDOW. 925 00:36:34,843 --> 00:36:36,511 YOU MAY NEED TO MUTE THAT SO YOU 926 00:36:36,511 --> 00:36:38,413 DON'T GET THE FEEDBACK. 927 00:36:38,413 --> 00:36:38,680 >> HELLO. 928 00:36:38,680 --> 00:36:41,850 >> WE CAN HEAR YOU. 929 00:36:41,850 --> 00:36:44,786 >> HELLO. 930 00:36:44,786 --> 00:36:55,297 I WILL START MY NAME IS ANNA 931 00:37:05,907 --> 00:37:07,776 POLEA -- SORRY, SOME KIND OF LAG 932 00:37:07,776 --> 00:37:08,176 IN COMMUNICATION. 933 00:37:08,176 --> 00:37:14,850 I'LL START. 934 00:37:14,850 --> 00:37:21,089 I'M RESEARCHER ONE A UNIVERSITY 935 00:37:21,089 --> 00:37:22,157 AND WE'RE TRYING TO DEVELOP 936 00:37:22,157 --> 00:37:26,161 TECHNICAL SOLUTION FOR 937 00:37:26,161 --> 00:37:35,737 ENGAGEMENT OF THE PUBLIC NAMELY 938 00:37:35,737 --> 00:37:37,673 PARTLIES IN CLINICAL TRIALS IN 939 00:37:37,673 --> 00:37:38,774 DATA SHARING. 940 00:37:38,774 --> 00:37:40,876 -- PARTICIPANTS IN CLINICAL 941 00:37:40,876 --> 00:37:45,013 TRIALS IN DATA SHARING AND 942 00:37:45,013 --> 00:37:47,449 TRYING TO COMBINE EXPERIENCES IN 943 00:37:47,449 --> 00:37:50,852 THE U.S. AND EUROPEAN UNION TO 944 00:37:50,852 --> 00:37:55,891 BUILD A PROPER FRAMEWORK. 945 00:37:55,891 --> 00:37:58,760 MY CONCERN AND MY COMMENT 946 00:37:58,760 --> 00:38:01,063 RELATED TO THE DISABILITY OF THE 947 00:38:01,063 --> 00:38:05,901 WORLD WIDE PUBLIC ACCESS TO THE 948 00:38:05,901 --> 00:38:09,304 MEDICAL DATA AND DATA SHARING 949 00:38:09,304 --> 00:38:11,840 FACILITIES AS WELL AS WORLD WIDE 950 00:38:11,840 --> 00:38:15,110 ENGAGEMENT OF THE PARTICIPANTS 951 00:38:15,110 --> 00:38:16,478 CLINICAL TRIAL PARTICIPANTS AND 952 00:38:16,478 --> 00:38:22,851 OTHER ORGANIZATIONS AND SO ON. 953 00:38:22,851 --> 00:38:30,358 SO WHAT I WANTED TO DISCUSS WITH 954 00:38:30,358 --> 00:38:35,397 YOU IS MAYBE NIH COULD WE COULD 955 00:38:35,397 --> 00:38:38,166 INCLUDE SOME INFORMATION AND 956 00:38:38,166 --> 00:38:40,635 PROVISIONS INTO THIS PUBLIC 957 00:38:40,635 --> 00:38:46,508 ACCESS DOCUMENT AND PUBLIC 958 00:38:46,508 --> 00:38:49,277 ACCESS IN ORDER TO MAKE THIS 959 00:38:49,277 --> 00:38:54,516 WORLDWIDE AND CONNECTION 960 00:38:54,516 --> 00:38:56,918 POSSIBLE AND WE COULD SHARE 961 00:38:56,918 --> 00:38:59,855 INFORMATION WORLDWIDE. 962 00:38:59,855 --> 00:39:10,398 I'M SORRY, FOR MY SPEECH BECAUSE 963 00:39:11,233 --> 00:39:13,668 IT'S SOME KIND OF LAG IN 964 00:39:13,668 --> 00:39:16,404 COMMUNICATION I MEAN IN 965 00:39:16,404 --> 00:39:17,105 CONNECTION. 966 00:39:17,105 --> 00:39:18,840 THANK YOU VERY MUCH FOR GIVING 967 00:39:18,840 --> 00:39:22,043 ME THIS OPPORTUNITY TO MAKE MY 968 00:39:22,043 --> 00:39:22,844 COMMENTS. 969 00:39:22,844 --> 00:39:25,213 I'LL PROBABLY DO WRITTEN 970 00:39:25,213 --> 00:39:26,848 COMMENTS LATER AND PROBABLY WE 971 00:39:26,848 --> 00:39:29,851 COULD COLLABORATE WITH SOME OF 972 00:39:29,851 --> 00:39:31,853 THE COMMENTERS AND FORUMS. 973 00:39:31,853 --> 00:39:35,524 IT WOULD BE BENEFICIAL FOR ALL 974 00:39:35,524 --> 00:39:35,991 THE PARTS. 975 00:39:35,991 --> 00:39:38,860 THANK YOU VERY MUCH ONE MORE 976 00:39:38,860 --> 00:39:42,197 TIME. 977 00:39:42,197 --> 00:39:43,865 >> THANK YOU VERY MUCH. 978 00:39:43,865 --> 00:39:45,734 YOU CAME THROUGH LOUD AND CLEAR. 979 00:39:45,734 --> 00:39:48,804 THANK YOU, WE APPRECIATE THAT. 980 00:39:48,804 --> 00:39:49,905 CURRENTLY THERE IS NO ONE IN THE 981 00:39:49,905 --> 00:39:50,505 WAITING ROOM. 982 00:39:50,505 --> 00:39:51,706 WE HAVE OTHER SPEAKERS THAT ARE 983 00:39:51,706 --> 00:39:54,142 GOING TO BE COMING ONLINE. 984 00:39:54,142 --> 00:39:54,843 WE'RE A LITTLE BIT AHEAD OF 985 00:39:54,843 --> 00:39:58,146 SCHEDULE. 986 00:39:58,146 --> 00:40:01,149 WE DO EXPECT TO HAVE ANOTHER 987 00:40:01,149 --> 00:40:02,851 SPEAKER IN THE NEXT SEVERAL 988 00:40:02,851 --> 00:40:09,958 MOMENTS HOPEFULLY. 989 00:40:09,958 --> 00:40:12,427 >> THANK YOU FOR THE COMMENTS. 990 00:40:12,427 --> 00:40:14,863 IT WAS INTERESTING TO TALK ABOUT 991 00:40:14,863 --> 00:40:17,165 THE GROUP AND I KNOW THE ENGAGE 992 00:40:17,165 --> 00:40:18,867 GROUP HAS BEEN THINKING ABOUT 993 00:40:18,867 --> 00:40:20,902 THE SCIENCE AND ENGAGEMENT 994 00:40:20,902 --> 00:40:21,503 GLOBAL SO THOSE WERE HELPFUL 995 00:40:21,503 --> 00:40:31,680 COMMENTS. 996 00:40:31,680 --> 00:40:33,849 >> THE COMMITTEE FOR THIS 997 00:40:33,849 --> 00:40:36,651 PARTICULAR ENGAGED GROUP IS 998 00:40:36,651 --> 00:40:38,253 EXCEPTIONAL TECHNOLOGIES IN 999 00:40:38,253 --> 00:40:41,890 RESEARCH ADVISORY COMMITTEE. 1000 00:40:41,890 --> 00:40:48,063 WE ARE THINKING VERY MUCH ABOUT 1001 00:40:48,063 --> 00:40:49,564 EXCEPTIONAL TECHNOLOGIES AS WELL 1002 00:40:49,564 --> 00:40:56,438 AS TRADITIONAL RESEARCH METHODS. 1003 00:40:56,438 --> 00:40:58,340 HAD THERE'S POTENTIAL ISSUES AND 1004 00:40:58,340 --> 00:41:06,781 IN TERMS OF POTENTIAL SOLUTIONS. 1005 00:41:06,781 --> 00:41:09,951 TO THE NEXT COMMENTER HAS JOINED 1006 00:41:09,951 --> 00:41:20,462 CAROLINE CASEY JOINING US NOW. 1007 00:41:26,468 --> 00:41:36,678 CAN YOU HEAR ME? 1008 00:41:46,922 --> 00:41:57,132 HELLO, CAROLINE. 1009 00:42:09,477 --> 00:42:10,845 SHE'S HAVING MICROPHONE ISSUES 1010 00:42:10,845 --> 00:42:21,056 AS WE SPEAK. 1011 00:42:22,924 --> 00:42:27,329 SHE MAY BE TRYING TO GET THE AV 1012 00:42:27,329 --> 00:42:28,997 CHALLENGES UNDER CONTROL DESPITE 1013 00:42:28,997 --> 00:42:34,869 US USING THIS AS THE NEW NORM 1014 00:42:34,869 --> 00:42:37,372 HERE STILL ESCAPES ME SOMETIMES. 1015 00:42:37,372 --> 00:42:39,374 >> I'M SURE SHE'LL HAVE IT 1016 00:42:39,374 --> 00:42:40,475 FIGURED OUT MOMENTARILY. 1017 00:42:40,475 --> 00:42:41,509 I CAN UPDATE YOU ONCE SHE COMES 1018 00:42:41,509 --> 00:42:51,653 BACK IN. 1019 00:43:05,600 --> 00:43:07,569 WE HAD SOME DROP OFF LEADING TO 1020 00:43:07,569 --> 00:43:09,671 GAPS IN COMMENTS. 1021 00:43:09,671 --> 00:43:11,639 HOPE ANY SOME PEOPLE WILL BE 1022 00:43:11,639 --> 00:43:17,912 TUNING IN EARLIER TO -- I HAVE 1023 00:43:17,912 --> 00:43:23,218 ONE THERE'S SOMEONE ELSE 1024 00:43:23,218 --> 00:43:24,886 AVAILABLE. 1025 00:43:24,886 --> 00:43:29,924 THAT WILL BE ADOLF CHICCON. 1026 00:43:29,924 --> 00:43:40,168 HELLO, ADOLF? 1027 00:43:46,408 --> 00:43:50,412 >> CAN YOU HEAR ME? 1028 00:43:50,412 --> 00:43:53,415 >> YES, WHEN YOU'RE HAPPY TO 1029 00:43:53,415 --> 00:43:53,848 START. 1030 00:43:53,848 --> 00:43:55,016 >> I THOUGHT I'D COME EARLY. 1031 00:43:55,016 --> 00:43:57,252 >> THANK YOU FOR DOING THAT. 1032 00:43:57,252 --> 00:44:00,021 WE HAD SOME DEAD AIR SO YOU'RE 1033 00:44:00,021 --> 00:44:00,955 OUR M.V.P. SO FAR. 1034 00:44:00,955 --> 00:44:03,124 >> THANK YOU FOR THE OPPORTUNITY 1035 00:44:03,124 --> 00:44:05,026 TO PROVIDE COMMENTS TODAY. 1036 00:44:05,026 --> 00:44:13,701 MY NAME IS ADOLPH FOR THE 1037 00:44:13,701 --> 00:44:15,537 ALLIANCE WITH HISPANIC HEALTH A 1038 00:44:15,537 --> 00:44:17,305 COMMUNITY DRIVEN ORGANIZATION 1039 00:44:17,305 --> 00:44:19,574 THAT FOCUSES ON THE BEST HEALTH 1040 00:44:19,574 --> 00:44:20,041 FOR ALL. 1041 00:44:20,041 --> 00:44:30,552 OUR WORK IS TO ENSURE HEALTH 1042 00:44:32,620 --> 00:44:34,122 INCORPORATES CULTURE IN SCIENCE. 1043 00:44:34,122 --> 00:44:39,227 SCIENCE HAS ALWAYS 2K3W5GUIDE E 1044 00:44:39,227 --> 00:44:40,929 AND SUPPORTED HHS AND THE 1045 00:44:40,929 --> 00:44:41,930 DEVELOPMENT OF THE FIRST 1046 00:44:41,930 --> 00:44:46,234 HISPANIC HEALTH SURVEYS TO TODAY 1047 00:44:46,234 --> 00:44:48,570 LEADING OUTREACH FOR THE ALL OF 1048 00:44:48,570 --> 00:44:50,171 US PROGRAM AND THE HEALTHY 1049 00:44:50,171 --> 00:44:51,606 AMERICAS FOUNDATION. 1050 00:44:51,606 --> 00:44:54,409 NOT ONLY A CONSORTIUM OF 27 1051 00:44:54,409 --> 00:44:58,847 RESEARCH TEAMS AND RESEARCHERS 1052 00:44:58,847 --> 00:45:00,548 CONDUCTING GROUNDBREAKING 1053 00:45:00,548 --> 00:45:04,352 RESEARCH IN HISPANIC HEALTH AND 1054 00:45:04,352 --> 00:45:10,258 WELL BEING. 1055 00:45:10,258 --> 00:45:11,793 HFK HISPANICS ARE WILLING TO 1056 00:45:11,793 --> 00:45:16,764 PARTICIPATE AND A SURVEY SHOWED 1057 00:45:16,764 --> 00:45:19,434 6% WERE IN CLINICAL RESEARCH. 1058 00:45:19,434 --> 00:45:24,139 WE JUST COMPLETED ACROSS THE 1059 00:45:24,139 --> 00:45:25,206 NATION IN HISPANIC COMMUNITIES 1060 00:45:25,206 --> 00:45:26,741 PARTICIPANTS WERE WILLING TO 1061 00:45:26,741 --> 00:45:28,710 ENROLL IN RESEARCH AND THE 1062 00:45:28,710 --> 00:45:32,680 LARGEST MOTIVATOR WAS TO IMPROVE 1063 00:45:32,680 --> 00:45:33,681 THE HEALTH FOR THEIR 2367 AND 1064 00:45:33,681 --> 00:45:38,620 FAMILY AND COMMUNITY. 1065 00:45:38,620 --> 00:45:43,424 THESE ARE PERSONAL DECISIONS TO 1066 00:45:43,424 --> 00:45:47,662 IT ENTER IN CLINICAL RESEARCH. 1067 00:45:47,662 --> 00:45:48,563 DESPITE THE DATA SHOWING THE 1068 00:45:48,563 --> 00:45:50,031 CENTRAL ROLE OF A PERSON ASKING 1069 00:45:50,031 --> 00:45:53,034 TO JOIN CLINICAL RESEARCH THE 1070 00:45:53,034 --> 00:45:58,606 MOST IS UNIVERSITY BASED AND 1071 00:45:58,606 --> 00:46:08,850 DOES NOT WORK AND INVOLVE 1072 00:46:08,850 --> 00:46:10,018 COMMUNITY LOOKING AT BREAST 1073 00:46:10,018 --> 00:46:12,287 CANCER TREATMENT EXPERIENCES WE 1074 00:46:12,287 --> 00:46:16,858 FOUND THE LARGEST REASON PEOPLE 1075 00:46:16,858 --> 00:46:17,492 DIDN'T JOIN CLINICAL RESEARCH 1076 00:46:17,492 --> 00:46:18,593 WERE THEY WEREN'T ASKED. 1077 00:46:18,593 --> 00:46:19,227 REFORM IS NEEDED. 1078 00:46:19,227 --> 00:46:26,367 AND MANDATES HAVE NOT WORKED. 1079 00:46:26,367 --> 00:46:27,769 WE SHOULD BE IMPLEMENTING 1080 00:46:27,769 --> 00:46:30,538 PRINCIPLES OF COMMUNITY-BASED 1081 00:46:30,538 --> 00:46:31,973 RESEARCH. 1082 00:46:31,973 --> 00:46:37,412 NIH SHOULD NOT BE FUNDING 1083 00:46:37,412 --> 00:46:47,188 RESEARCH THAT SHOULD NOT BE 1084 00:46:47,188 --> 00:46:53,728 FUNDED IF NOT VATE -- SEPARATING 1085 00:46:53,728 --> 00:46:53,928 DATA. 1086 00:46:53,928 --> 00:46:57,899 HISPANICS ARE 16.2% OF 1087 00:46:57,899 --> 00:46:58,233 PARTICIPATION. 1088 00:46:58,233 --> 00:46:59,901 SO ON A LARGE SCALE WE KNOW IT 1089 00:46:59,901 --> 00:47:02,170 CAN BE DONE IF IT'S DONE THE 1090 00:47:02,170 --> 00:47:02,837 RIGHT WAY. 1091 00:47:02,837 --> 00:47:13,147 THANK YOU SO MUCH. 1092 00:47:13,982 --> 00:47:14,849 >> THANK YOU. 1093 00:47:14,849 --> 00:47:18,052 WE DON'T WANT TO CUT YOU SHORT 1094 00:47:18,052 --> 00:47:20,088 IF THERE'S ANOTHER POINT YOU 1095 00:47:20,088 --> 00:47:20,888 WANTED TO HIT UPON. 1096 00:47:20,888 --> 00:47:23,124 THERE'S NO ONE IN THE WAITING 1097 00:47:23,124 --> 00:47:33,234 ROOM. 1098 00:47:36,004 --> 00:47:41,809 WE'VE HAD DECADES OF ASKING FOR 1099 00:47:41,809 --> 00:47:42,410 INCLUSION AND IT NEEDS TO BE 1100 00:47:42,410 --> 00:47:46,080 STRUCTURAL. 1101 00:47:46,080 --> 00:47:54,856 IT NEEDS TO FOLLOW THE MONEY. 1102 00:47:54,856 --> 00:47:57,258 WHAT ARE THE IMPLEMENTS? 1103 00:47:57,258 --> 00:48:00,395 ONE IS ADEQUATE FUNDING OF 1104 00:48:00,395 --> 00:48:06,401 TRUSTED COMMUNITY PARTNERS, TWO 1105 00:48:06,401 --> 00:48:08,603 IS THE CO-DESIGN WITH COMMUNITY 1106 00:48:08,603 --> 00:48:09,771 PARTNERS AND FEEDBACK AND THEY 1107 00:48:09,771 --> 00:48:10,838 WANT TO KNOW THE PARTICIPATION 1108 00:48:10,838 --> 00:48:12,440 IS MAKING A DIFFERENCE AND THREE 1109 00:48:12,440 --> 00:48:13,741 IS THE ONE TO ONE INFORMATION IN 1110 00:48:13,741 --> 00:48:15,743 A MOMENT AND SUPPORT AND 1111 00:48:15,743 --> 00:48:17,945 FOLLOW-UP. 1112 00:48:17,945 --> 00:48:23,918 I CANNOT EMPHASIZE THAT ENOUGH 1113 00:48:23,918 --> 00:48:30,558 WE HAVE MANY DIGITAL APPROACHES 1114 00:48:30,558 --> 00:48:31,959 BUT THE HIGH TOUCH IS THE 1115 00:48:31,959 --> 00:48:34,262 DIFFERENCE IN INCLUSION. 1116 00:48:34,262 --> 00:48:38,833 I CANNOT EMPHASIZE IT'S THE 1117 00:48:38,833 --> 00:48:40,268 CRITICAL DIFFERENCE IN SUCCESS. 1118 00:48:40,268 --> 00:48:41,936 FULL INCLUSION OF UNDER 1119 00:48:41,936 --> 00:48:42,603 REPRESENTED POPULATION SHOULD BE 1120 00:48:42,603 --> 00:48:45,873 A METRIC FOR SUCCESS AND WE 1121 00:48:45,873 --> 00:48:47,775 SHOULD BE REQUIRING RESEARCH TO 1122 00:48:47,775 --> 00:48:50,111 CONDUCT ONGOING TRACTING OF 1123 00:48:50,111 --> 00:48:52,447 THEIR INCLUSION -- TRACKING AND 1124 00:48:52,447 --> 00:48:53,548 THEIR INCLUSION AND REPORT TO 1125 00:48:53,548 --> 00:48:55,516 THE FUNDER SHOULD BE OPPORTUNITY 1126 00:48:55,516 --> 00:48:57,552 FOR MID COURSE CORRECTION IF THE 1127 00:48:57,552 --> 00:48:58,519 METRICS AREN'T BEING MET. 1128 00:48:58,519 --> 00:49:00,988 AND FINALLY I WANT TO SAY THE 1129 00:49:00,988 --> 00:49:05,560 PAYOFF FOR DOING THIS RIGHT IS 1130 00:49:05,560 --> 00:49:05,927 TREMENDOUS. 1131 00:49:05,927 --> 00:49:06,928 FOR EXAMPLE, HISPANICS 1132 00:49:06,928 --> 00:49:10,298 REPRESENTED LESS THAN 1% OF 1133 00:49:10,298 --> 00:49:11,532 GENOME-WIDE ASSOCIATION STUDIES. 1134 00:49:11,532 --> 00:49:14,469 WHAT DOES THAT MEAN? 1135 00:49:14,469 --> 00:49:15,536 IT MEANS STRUCTURALLY HISPANIC 1136 00:49:15,536 --> 00:49:18,806 COMMUNITIES WILL NOT BENEFIT 1137 00:49:18,806 --> 00:49:22,176 FROM DISCOVERIES USING THE 1138 00:49:22,176 --> 00:49:23,778 GENOMIC DATABASE OR FROM 1139 00:49:23,778 --> 00:49:24,645 PERSONALIZED MEDICINE. 1140 00:49:24,645 --> 00:49:26,547 BUT IN THE ALL OF US RESEARCH 1141 00:49:26,547 --> 00:49:29,450 PROGRAM, DOING IT THE RIGHT WAY 1142 00:49:29,450 --> 00:49:33,087 AND GETTING 16.2% OF THE 1143 00:49:33,087 --> 00:49:34,856 DATABASE WITH HISPANIC 1144 00:49:34,856 --> 00:49:36,991 PARTICIPANTS HAS DRAMATICALLY 1145 00:49:36,991 --> 00:49:40,328 CHANGED THE AMOUNT OF GENETIC 1146 00:49:40,328 --> 00:49:42,430 DATA AVAILABLE AND IT'S VERY 1147 00:49:42,430 --> 00:49:45,199 ROBUST BECAUSE IT INCLUDES 1148 00:49:45,199 --> 00:49:46,868 ELECTRONIC HEALTH RECORDS AND 1149 00:49:46,868 --> 00:49:50,304 OTHER DATABASES. 1150 00:49:50,304 --> 00:49:52,106 THAT CHANGE MEANS THE STRUCTURAL 1151 00:49:52,106 --> 00:49:54,142 BARRIER IS GETTING REMOVED AND 1152 00:49:54,142 --> 00:49:56,010 DRAMATICALLY GOING TO CHANGE THE 1153 00:49:56,010 --> 00:49:57,779 FUTURE FOR HISPANICS BENEFITING 1154 00:49:57,779 --> 00:49:59,947 FROM PERSONALIZED MEDICINE. 1155 00:49:59,947 --> 00:50:02,583 AGAIN, THANK YOU SO MUCH. 1156 00:50:02,583 --> 00:50:04,085 >> THANK YOU FOR THOSE 1157 00:50:04,085 --> 00:50:04,886 INSIGHTFUL COMMENTS. 1158 00:50:04,886 --> 00:50:10,491 WE VERY MUCH APPRECIATE IT. 1159 00:50:10,491 --> 00:50:18,833 OUR NEXT SPEAKER IS HERE. 1160 00:50:18,833 --> 00:50:21,536 I'M LETTING HER IN RIGHT NOW. 1161 00:50:21,536 --> 00:50:31,646 HELLO? 1162 00:50:41,355 --> 00:50:42,457 >> CAN YOU HEAR ME? 1163 00:50:42,457 --> 00:50:44,358 >> THE FLOOR IS YOURS. 1164 00:50:44,358 --> 00:50:45,726 LET ME KNOW WHEN YOU WANT TO 1165 00:50:45,726 --> 00:50:46,828 START AND I'LL START THE 1166 00:50:46,828 --> 00:50:49,997 COUNTDOWN FOR YOU. 1167 00:50:49,997 --> 00:50:50,832 >> I'M ALL SET. 1168 00:50:50,832 --> 00:50:51,666 FIRST, THANK YOU FOR THE 1169 00:50:51,666 --> 00:50:54,402 OPPORTUNITY TO SPEAK THIS 1170 00:50:54,402 --> 00:50:57,205 MORNING AND FOR HOSTING THIS 1171 00:50:57,205 --> 00:50:58,272 PUBLIC COMMENT SESSION. 1172 00:50:58,272 --> 00:50:59,941 THANK YOU FOR FOCUSSING ON HOW 1173 00:50:59,941 --> 00:51:02,376 THE RESEARCH ENTERPRISE CAN WORK 1174 00:51:02,376 --> 00:51:04,078 TOWARDS BECOMING MORE 1175 00:51:04,078 --> 00:51:04,712 TRUSTWORTHY. 1176 00:51:04,712 --> 00:51:08,883 MY NAME IS RANA BARAR FOR THE 1177 00:51:08,883 --> 00:51:10,952 COMMUNITY ENGAGEMENT PROGRAM AT 1178 00:51:10,952 --> 00:51:13,254 THE CLINICAL SCIENCE INSTITUTE 1179 00:51:13,254 --> 00:51:15,823 AT THE UNIVERSITY OF CALIFORNIA 1180 00:51:15,823 --> 00:51:16,591 SAN FRANCISCO. 1181 00:51:16,591 --> 00:51:17,959 SINCE SO MUCH OF RESEARCH 1182 00:51:17,959 --> 00:51:19,093 PRACTICE TRICKLES DOWN FROM 1183 00:51:19,093 --> 00:51:21,329 POLICY AND FUNDING STRUCTURES 1184 00:51:21,329 --> 00:51:23,130 I'LL START MY COMMENTS AT THAT 1185 00:51:23,130 --> 00:51:25,633 LEX. 1186 00:51:25,633 --> 00:51:27,735 FUNDING AGENCIES NEED TO FULLY 1187 00:51:27,735 --> 00:51:29,937 EMBRACE THE IDEA THAT ENGAGEMENT 1188 00:51:29,937 --> 00:51:31,205 AND PARTNERSHIP ARE NOT 1189 00:51:31,205 --> 00:51:33,508 TRANSACTIONAL ENDEAVORS AND 1190 00:51:33,508 --> 00:51:35,476 ONGOING AND AS MANY HAVE SAID 1191 00:51:35,476 --> 00:51:38,846 ALREADY ON THE CALL 1192 00:51:38,846 --> 00:51:39,213 BI-DIRECTIONAL. 1193 00:51:39,213 --> 00:51:41,249 PARTNERSHIPS ARE BUILT ON TRUST 1194 00:51:41,249 --> 00:51:43,551 WHICH TAKES TIME AND MOST 1195 00:51:43,551 --> 00:51:44,785 IMPORTANTLY INVESTMENT. 1196 00:51:44,785 --> 00:51:46,220 HOW DOES AN EARLY CAREER 1197 00:51:46,220 --> 00:51:48,856 RESEARCHER BUILD TRUSTING 1198 00:51:48,856 --> 00:51:50,324 RELATIONSHIPS WITH COMMUNITY 1199 00:51:50,324 --> 00:51:52,093 PARTNERS WITHOUT THE TIME, 1200 00:51:52,093 --> 00:51:52,793 FUNDING AND INSTITUTIONAL 1201 00:51:52,793 --> 00:51:55,930 SUPPORT TO DO SO. 1202 00:51:55,930 --> 00:51:57,832 INVESTING IN COMMUNITY 1203 00:51:57,832 --> 00:52:02,837 ENGAGEMENT NETWORKS, PARTNERSHIP 1204 00:52:02,837 --> 00:52:05,940 DEVELOPMENT, DEVELOPMENT GRANTS 1205 00:52:05,940 --> 00:52:07,241 AND PARTNERSHIP SUSTAINABILITY 1206 00:52:07,241 --> 00:52:08,776 IS ESSENTIAL. 1207 00:52:08,776 --> 00:52:10,611 I KNOW THAT WE ALWAYS TEND TO 1208 00:52:10,611 --> 00:52:13,347 FOCUS ON RESOURCES BUT THIS IS 1209 00:52:13,347 --> 00:52:15,283 AN AREA WHERE RESOURCES CAN 1210 00:52:15,283 --> 00:52:18,586 REALLY MAKE A DIFFERENCE IN 1211 00:52:18,586 --> 00:52:21,355 ALLOWING RESEARCHERS TO 1212 00:52:21,355 --> 00:52:22,156 ESTABLISH ONGOING BI-DIRECTIONAL 1213 00:52:22,156 --> 00:52:23,791 TRUST IN PARTNERSHIPS. 1214 00:52:23,791 --> 00:52:25,660 FUNDERS CAN ALSO PLAY A 1215 00:52:25,660 --> 00:52:27,728 PROACTIVE ROLE IN DEVELOPING 1216 00:52:27,728 --> 00:52:30,831 TRAINING AND ORIENTATION FOR 1217 00:52:30,831 --> 00:52:32,199 COMMUNITIES ABOUT HOW RESEARCH 1218 00:52:32,199 --> 00:52:34,835 AND RESEARCH PARTICIPATION 1219 00:52:34,835 --> 00:52:35,069 HAPPENS. 1220 00:52:35,069 --> 00:52:36,571 SO MANY INSTITUTIONS INCLUDING 1221 00:52:36,571 --> 00:52:39,340 MY OWN END UP DEVELOPING THESE 1222 00:52:39,340 --> 00:52:41,943 KINDS OF RESOURCES THEMSELVES 1223 00:52:41,943 --> 00:52:43,411 AND HAVING THE NIH AND THE 1224 00:52:43,411 --> 00:52:46,280 WORKING GROUP PLAY A MORE ACTIVE 1225 00:52:46,280 --> 00:52:48,049 ROLE IN PROVIDING INFORMATION 1226 00:52:48,049 --> 00:52:51,252 AND TRAINING TO COMMUNITIES 1227 00:52:51,252 --> 00:52:53,220 WOULD PROVIDE AN ECONOMY OF 1228 00:52:53,220 --> 00:52:53,821 SCALE. 1229 00:52:53,821 --> 00:52:56,591 INSTITUTIONAL POLICY AS WE ALL 1230 00:52:56,591 --> 00:52:59,493 KNOW ALSO GOVERNANCES SO MUCH OF 1231 00:52:59,493 --> 00:53:01,929 HOW COMMUNITY ENGAGEMENT TAKES 1232 00:53:01,929 --> 00:53:05,433 PLACE AND POLICY MAKING AS IT 1233 00:53:05,433 --> 00:53:08,336 PERTAINS TO INTRAMURAL FUNDING 1234 00:53:08,336 --> 00:53:09,837 DECISIONS, IRB PRACTICES, A.I. 1235 00:53:09,837 --> 00:53:10,972 AND DATA SHARING PRACTICES AND 1236 00:53:10,972 --> 00:53:14,442 POLICIES IS REALLY IMPORTANT. 1237 00:53:14,442 --> 00:53:16,611 THIS IS PARTICULARLY CLEAR IN 1238 00:53:16,611 --> 00:53:18,212 THE AREA OF PARTICIPANT AND 1239 00:53:18,212 --> 00:53:20,381 COMMUNITY PARTNER REMUNERATION 1240 00:53:20,381 --> 00:53:21,182 WHICH ARE PRACTICES WHICH ARE 1241 00:53:21,182 --> 00:53:27,021 ALL OVER THE PLACE AND THE BANE 1242 00:53:27,021 --> 00:53:29,824 OF MOST RESEARCH MANAGER'S 1243 00:53:29,824 --> 00:53:31,993 EXPERIENCE AND NIH CAN EASE THIS 1244 00:53:31,993 --> 00:53:34,829 TENSION BY USING THE FAIR MARKET 1245 00:53:34,829 --> 00:53:35,930 CAL KWLATER. 1246 00:53:35,930 --> 00:53:37,064 -- CALCULATOR. 1247 00:53:37,064 --> 00:53:38,833 THERE'S NUMEROUS INTERVENTIONS 1248 00:53:38,833 --> 00:53:40,801 THAT MAKE A HUGE DIFFERENCE. 1249 00:53:40,801 --> 00:53:42,003 FIRST AND FOR MOST TREATING 1250 00:53:42,003 --> 00:53:43,771 PARTICIPANTS AND COMMUNITY 1251 00:53:43,771 --> 00:53:46,007 PARTNERS AS THE EXPERTS THEY AND 1252 00:53:46,007 --> 00:53:46,474 REMUNE RATING THEM AS 1253 00:53:46,474 --> 00:53:49,777 APPROPRIATE. 1254 00:53:49,777 --> 00:53:52,079 -- TO THEIR EXPERTISE. 1255 00:53:52,079 --> 00:53:53,514 REVIEW CRITERIA AT ALL LEVEL 1256 00:53:53,514 --> 00:53:57,752 SHOULD INCLUDE ADEQUACY OF 1257 00:53:57,752 --> 00:53:59,954 COMPENSATION AND NURTURING 1258 00:53:59,954 --> 00:54:02,857 DIVERSE TEAMS FOR BUDGET AND 1259 00:54:02,857 --> 00:54:05,426 TRANSLATION ARE ALSO ESSENTIAL 1260 00:54:05,426 --> 00:54:05,893 PARTS OF THIS. 1261 00:54:05,893 --> 00:54:08,095 LASTLY, I JUST WANT TO RECOMMEND 1262 00:54:08,095 --> 00:54:11,165 AND ENCOURAGE FOLKS TO LOOK AT 1263 00:54:11,165 --> 00:54:12,266 THE MANY EXCELLENT MATERIALS 1264 00:54:12,266 --> 00:54:14,669 THAT HAVE ALREADY BEEN DEVELOPED 1265 00:54:14,669 --> 00:54:15,836 IN THIS AREA. 1266 00:54:15,836 --> 00:54:18,773 THE AAMC PRINCIPLES OF 1267 00:54:18,773 --> 00:54:21,375 TRUSTWORTHINESS AND THE 1268 00:54:21,375 --> 00:54:22,009 RECOMMENDATIONS FOR 1269 00:54:22,009 --> 00:54:23,444 STRENGTHENING IN PARTNERSHIPS 1270 00:54:23,444 --> 00:54:26,047 AND THE BELONGING INSTITUTES 1271 00:54:26,047 --> 00:54:27,181 GUIDELINES ARE RECENT EXAMPLES 1272 00:54:27,181 --> 00:54:29,116 AND THERE ARE EXISTING WORKING 1273 00:54:29,116 --> 00:54:31,485 GROUPS IN NETWORKS ON COMMUNITY 1274 00:54:31,485 --> 00:54:33,320 ENGAGEMENT SUCH AS THE NCATS 1275 00:54:33,320 --> 00:54:40,127 WORKING GROUP ON CE AND THE CTSI 1276 00:54:40,127 --> 00:54:41,929 TASK FORCE ON DEIA BUILDING ON 1277 00:54:41,929 --> 00:54:43,230 EXPERTISE AND RESOURCES CAN BE 1278 00:54:43,230 --> 00:54:44,198 VERY FRUITFUL. 1279 00:54:44,198 --> 00:54:45,266 THANK YOU AND I'M SORRY FOR 1280 00:54:45,266 --> 00:54:47,835 GOING A COUPLE SECONDS OVER. 1281 00:54:47,835 --> 00:54:50,504 >> NOT A PROBLEM AT ALL. 1282 00:54:50,504 --> 00:54:52,039 THANK YOU VERY MUCH FOR THOSE 1283 00:54:52,039 --> 00:54:52,807 COMMENTS. 1284 00:54:52,807 --> 00:54:53,674 WE APPRECIATE YOU TAKING TIME 1285 00:54:53,674 --> 00:54:57,445 OUT OF YOUR DAY TO TALK WITH US. 1286 00:54:57,445 --> 00:54:58,979 OUR NEXT SPEAKER IS JACQUELINE 1287 00:54:58,979 --> 00:54:59,213 DALTON. 1288 00:54:59,213 --> 00:55:01,382 SHE'LL BE JOINING US FROM THE 1289 00:55:01,382 --> 00:55:09,557 WAITING ROOM VERY SOON. 1290 00:55:09,557 --> 00:55:11,859 HELLO, JACQUELINE. 1291 00:55:11,859 --> 00:55:12,593 >> HELLO. 1292 00:55:12,593 --> 00:55:13,160 >> HOW ARE YOU? 1293 00:55:13,160 --> 00:55:14,128 THE FLOOR IS YOURS. 1294 00:55:14,128 --> 00:55:15,830 YOU'RE NOW ON THE WEBINAR. 1295 00:55:15,830 --> 00:55:16,897 TELL ME WHENEVER YOU'D LIKE TO 1296 00:55:16,897 --> 00:55:18,332 START AND I'LL START THE TIMER 1297 00:55:18,332 --> 00:55:19,400 FOR YOU. 1298 00:55:19,400 --> 00:55:22,770 >> I'M READY. 1299 00:55:22,770 --> 00:55:23,037 >> GREAT. 1300 00:55:23,037 --> 00:55:23,704 HELLO, EVERYONE. 1301 00:55:23,704 --> 00:55:25,706 I'M JACQUELINE DALTON DIRECTOR 1302 00:55:25,706 --> 00:55:27,208 OF THE HEALTH EQUITY COMMUNITY 1303 00:55:27,208 --> 00:55:28,843 COLLABORATIVE AT THE NATIONAL 1304 00:55:28,843 --> 00:55:30,644 NONPROFIT HEALTH LEADS. 1305 00:55:30,644 --> 00:55:32,913 I'M JOINING FROM NASHVILLE, 1306 00:55:32,913 --> 00:55:37,585 TENNESSEE WHERE I CO-CHAIR THE 1307 00:55:37,585 --> 00:55:39,186 GREATER NASHVILLE HEALTH 1308 00:55:39,186 --> 00:55:41,288 DISPARITIES COALITION A 1309 00:55:41,288 --> 00:55:43,791 COLLABORATIVE STARTED OVER 25 1310 00:55:43,791 --> 00:55:46,627 YEARS AGO AND CONTINUES TO 1311 00:55:46,627 --> 00:55:47,928 MAINTAIN STRONG TIES AND 1312 00:55:47,928 --> 00:55:49,196 RELATIONSHIPS WITH OUR LOCAL 1313 00:55:49,196 --> 00:55:51,165 ACADEMIC INSTITUTIONS TODAY. 1314 00:55:51,165 --> 00:55:56,470 I WANT TO THANK THE NIH FOR THE 1315 00:55:56,470 --> 00:55:58,172 CISCRP TO COMMENT ON ENGAGEMENT 1316 00:55:58,172 --> 00:55:59,907 AND CLINICAL RESEARCH AND MY 1317 00:55:59,907 --> 00:56:02,443 RESEARCH HAS HAD PERSPECTIVES ON 1318 00:56:02,443 --> 00:56:04,311 THE LAST 10 OR 12 YEARS. 1319 00:56:04,311 --> 00:56:07,381 MY COMMENTS CENTERS AROUND A 1320 00:56:07,381 --> 00:56:09,383 QUOTE FROM ADRIAN MARIE BROWN 1321 00:56:09,383 --> 00:56:11,952 WHO LIKES TO SAY TREAT ME LIKE A 1322 00:56:11,952 --> 00:56:13,020 HUME AN. 1323 00:56:13,020 --> 00:56:15,556 PEOPLE ARE OFTEN TIMES SEEN AS 1324 00:56:15,556 --> 00:56:20,027 ONE DIMENSIONAL OR THE FOCUS OR 1325 00:56:20,027 --> 00:56:21,428 TARGET OF AN ISSUE OR 1326 00:56:21,428 --> 00:56:22,062 CIRCUMSTANCE OF WHICH THE 1327 00:56:22,062 --> 00:56:24,398 RESEARCH TYPICALLY FOCUSES ON. 1328 00:56:24,398 --> 00:56:26,233 AND THIS IS SIMILAR TO WHAT I'VE 1329 00:56:26,233 --> 00:56:29,270 SEEN WHEN IT COMES TO ENGAGING 1330 00:56:29,270 --> 00:56:32,406 PEOPLE IN CLINICAL RESEARCH. 1331 00:56:32,406 --> 00:56:34,842 EACH HUMAN BEING IS DYNAMIC. 1332 00:56:34,842 --> 00:56:36,744 THERE ARE MULTIPLE LIVED 1333 00:56:36,744 --> 00:56:38,145 EXPERIENCES AND AREAS OF 1334 00:56:38,145 --> 00:56:39,213 KNOWLEDGE AND INTERESTS THAT 1335 00:56:39,213 --> 00:56:40,681 GOES INTO HOW THEY MAY OR MAY 1336 00:56:40,681 --> 00:56:43,150 NOT SHOW UP WHEN IT COMES TO 1337 00:56:43,150 --> 00:56:44,185 BEING INVOLVED IN CLINICAL 1338 00:56:44,185 --> 00:56:45,586 RESEARCH. 1339 00:56:45,586 --> 00:56:49,657 SO WHEN SPEAK -- SEEKING TO 1340 00:56:49,657 --> 00:56:50,491 ENGAGE PEOPLE IN CLINICAL 1341 00:56:50,491 --> 00:56:52,526 RESEARCH I BELIEVE IT'S 1342 00:56:52,526 --> 00:56:53,961 IMPORTANT WE NOT ONLY TAKE 1343 00:56:53,961 --> 00:56:55,396 INFORMATION FROM THEM AND 1344 00:56:55,396 --> 00:56:56,697 UNDERSTAND THEY MAY NOT BE 1345 00:56:56,697 --> 00:56:58,666 WILLING TO RETURN IF WE JUST TO 1346 00:56:58,666 --> 00:57:01,402 THE INFORMATION AT THEM OR 1347 00:57:01,402 --> 00:57:02,069 INUNDATE THEM WITH INFORMATION 1348 00:57:02,069 --> 00:57:04,238 FROM A PROTE COOL. 1349 00:57:04,238 --> 00:57:06,340 WHEN IT COMES TO ENGAGING PEOPLE 1350 00:57:06,340 --> 00:57:08,676 IN RESEARCH THEY OFTEN WANT TO 1351 00:57:08,676 --> 00:57:10,845 BE RESPECTED AND TREATED AS 1352 00:57:10,845 --> 00:57:12,847 PARTNERS AND NOTE A CHECK BOX. 1353 00:57:12,847 --> 00:57:14,715 THEY WANT TO BE LISTENED AND SEE 1354 00:57:14,715 --> 00:57:18,352 THE VALUE OF THEIR INVOLVEMENT 1355 00:57:18,352 --> 00:57:20,354 REFLECTED IN THE RESEARCH YOU'RE 1356 00:57:20,354 --> 00:57:21,155 INVOLVING THEM. 1357 00:57:21,155 --> 00:57:22,423 NOT 1358 00:57:22,423 --> 00:57:26,060 >> UST -- NOT JUST THAT YOU 1359 00:57:26,060 --> 00:57:27,795 HEARD THEM BUT WHEN WILL THEY BE 1360 00:57:27,795 --> 00:57:30,364 ABLE TO SEE THE CHANGE IN THE 1361 00:57:30,364 --> 00:57:33,100 RESEARCH FOR OTHER INITIATIVES. 1362 00:57:33,100 --> 00:57:34,802 IF NOTHING ELSE MY COMMENT IS 1363 00:57:34,802 --> 00:57:37,304 WHEN YOU SEEK TO ENGAGE PEOPLE, 1364 00:57:37,304 --> 00:57:38,839 TREAT THEM AS HUMAN BEINGS WHO 1365 00:57:38,839 --> 00:57:42,910 ARE DYNAMIC AND HAVE A WORLD OF 1366 00:57:42,910 --> 00:57:44,979 VARYING KNOWLEDGE AND INTEREST 1367 00:57:44,979 --> 00:57:45,980 AND COMMUNITY TO BRING TO THE 1368 00:57:45,980 --> 00:57:47,681 TABLE WHEN IT COMES RESEARCH. 1369 00:57:47,681 --> 00:57:49,516 THEY WANT TO KNOW YOU CARE ABOUT 1370 00:57:49,516 --> 00:57:53,220 THEM AND OTHERS WHO THEY HAVE 1371 00:57:53,220 --> 00:57:53,954 SHARED CIRCUMSTANCE OR LIVED 1372 00:57:53,954 --> 00:57:55,990 EXPERIENCE LIKE THEY HAVE. 1373 00:57:55,990 --> 00:57:59,493 NOT JUST WHEN YOUR RESEARCH IS 1374 00:57:59,493 --> 00:58:00,628 FUNDED BUT BEYOND THE RESEARCH 1375 00:58:00,628 --> 00:58:02,029 OR GRANT. 1376 00:58:02,029 --> 00:58:04,064 THEY WANT TO KNOW YOU CARE ABOUT 1377 00:58:04,064 --> 00:58:07,167 THEM AND VALUE THEM AS HUMAN 1378 00:58:07,167 --> 00:58:08,969 BEINGS TO MAINTAIN CONNECTION 1379 00:58:08,969 --> 00:58:11,972 AND RELATIONSHIP EVEN WHEN THE 1380 00:58:11,972 --> 00:58:13,474 PROJECT IS OVER AND WHEN THERE'S 1381 00:58:13,474 --> 00:58:16,710 NO FUNDING THAT SAYS YOU NEED TO 1382 00:58:16,710 --> 00:58:16,977 CARE. 1383 00:58:16,977 --> 00:58:18,646 HUMAN BEINGS ARE CAPABLE OF 1384 00:58:18,646 --> 00:58:19,813 PROVIDING INVALUABLE INPUT AS 1385 00:58:19,813 --> 00:58:20,814 COLLABORATORS AND DECISION 1386 00:58:20,814 --> 00:58:21,048 MAKERS. 1387 00:58:21,048 --> 00:58:23,183 I BELIEVE IT'S TIME TO MAKE THIS 1388 00:58:23,183 --> 00:58:24,718 SHIFT IN THE RESEARCH BROADLY 1389 00:58:24,718 --> 00:58:25,953 TODAY TO TREAT PEOPLE AS HUMAN 1390 00:58:25,953 --> 00:58:26,854 BEINGS. 1391 00:58:26,854 --> 00:58:32,927 THANK YOU SO MUCH. 1392 00:58:32,927 --> 00:58:34,828 >> THANK YOU, JACQUELINE AND FOR 1393 00:58:34,828 --> 00:58:35,562 THOSE THOUGHTS. 1394 00:58:35,562 --> 00:58:37,865 OUR NEXT SPEAKER IS AVAILABLE, 1395 00:58:37,865 --> 00:58:48,309 IT'S SCOTT JOINING US NOW. 1396 00:59:00,020 --> 00:59:04,158 WE'RE HAPPY TO HERE YOUR 1397 00:59:04,158 --> 00:59:04,425 COMMENTS. 1398 00:59:04,425 --> 00:59:06,860 >> I'M GOOD TO START. 1399 00:59:06,860 --> 00:59:14,835 SO MY NAME IS SCOTT DID -- 1400 00:59:14,835 --> 00:59:17,237 DANISKA AND EXPERIENCED IT 1401 00:59:17,237 --> 00:59:18,038 THROUGH RESEARCH AND PARTICIPANT 1402 00:59:18,038 --> 00:59:20,307 AND HAVE SEEN HUNDREDS OF 1403 00:59:20,307 --> 00:59:21,742 DOCTORS AS A PATIENT AND SPOKEN 1404 00:59:21,742 --> 00:59:24,011 TO THOUSANDS OF OTHER PATIENTS 1405 00:59:24,011 --> 00:59:27,448 OVER THE COURSE OF EIGHT YEARS. 1406 00:59:27,448 --> 00:59:29,083 IN MY EXPERIENCE THE PATIENTS 1407 00:59:29,083 --> 00:59:31,185 KNOW MORE THAN THE DOCTORS. 1408 00:59:31,185 --> 00:59:37,424 THE DOCTORS RARELY READ NEW 1409 00:59:37,424 --> 00:59:38,425 PUBLICATION. 1410 00:59:38,425 --> 00:59:40,294 COORDINATION IS CRITICAL IF 1411 00:59:40,294 --> 00:59:42,396 WE'RE TO GET ANYWHERE IN TERMS 1412 00:59:42,396 --> 00:59:44,031 OF IMPROVING QUALITY OF HIVE AND 1413 00:59:44,031 --> 00:59:48,902 WE HAVE RESEARCHERS SO LOST IN 1414 00:59:48,902 --> 00:59:50,804 FIBROMYALGIA AND OTHERS AS IF 1415 00:59:50,804 --> 00:59:51,905 THEY'RE PSYCHOLOGICAL DISEASES. 1416 00:59:51,905 --> 00:59:53,407 JUST TALK TO ANY OF THESE 1417 00:59:53,407 --> 00:59:54,475 PATIENTS OUT THERE THAT HAVE THE 1418 00:59:54,475 --> 00:59:58,846 CONDITIONS AND YOU'LL FIND OUT 1419 00:59:58,846 --> 00:59:59,380 VERY QUICKLY THEY'RE NOT. 1420 00:59:59,380 --> 01:00:01,448 WE CANNOT AFFORD RESEARCH THAT 1421 01:00:01,448 --> 01:00:03,884 DOES NOT HAVE A CONSISTENT FOCUS 1422 01:00:03,884 --> 01:00:04,918 ON IMPROVING PATIENT QUALITY OF 1423 01:00:04,918 --> 01:00:10,057 LIFE ANYMORE. 1424 01:00:10,057 --> 01:00:11,692 IN ACADEMIA THAT'S FREQUENTLY 1425 01:00:11,692 --> 01:00:12,993 THE CASE OF LEARNING FOR THE 1426 01:00:12,993 --> 01:00:14,194 SAKE OF LEARNING AND WE'RE NEAR 1427 01:00:14,194 --> 01:00:16,130 THE BREAKING POINT OF SOCIETY IN 1428 01:00:16,130 --> 01:00:18,465 OUR ECONOMY IF WE DON'T 1429 01:00:18,465 --> 01:00:19,500 PRIORITIZE NOVEL TREATMENT 1430 01:00:19,500 --> 01:00:22,136 DEVELOPMENT AND PATIENT OUTCOMES 1431 01:00:22,136 --> 01:00:27,641 OUR SITUATION WILL SOON BECOME 1432 01:00:27,641 --> 01:00:34,515 CATASTROPHIC AS CHRONIC ILLNESS 1433 01:00:34,515 --> 01:00:35,482 CONTINUES TO RISE. 1434 01:00:35,482 --> 01:00:36,784 TO GET THE BEST REPRESENTATION 1435 01:00:36,784 --> 01:00:38,052 YOU NEED TO SPEAK TO A VARIETY 1436 01:00:38,052 --> 01:00:41,922 OF PATIENTS DIRECTLY. 1437 01:00:41,922 --> 01:00:43,724 I PROPOSE THERE'S TWO TYPES OF 1438 01:00:43,724 --> 01:00:45,526 PATIENTS, ONE A LAY GROUP THAT 1439 01:00:45,526 --> 01:00:46,026 REPRESENTS THE PATIENT 1440 01:00:46,026 --> 01:00:47,094 POPULATION AS A WHOLE AND THE 1441 01:00:47,094 --> 01:00:49,096 OTHER BEING PATIENTS WITH A 1442 01:00:49,096 --> 01:00:51,932 TECHNICAL BACKGROUND OR 1443 01:00:51,932 --> 01:00:53,934 UNDERSTANDING FOR GRANT 1444 01:00:53,934 --> 01:00:54,301 REVIEWING. 1445 01:00:54,301 --> 01:00:55,869 I PROPOSE FEEDBACK FROM THE 1446 01:00:55,869 --> 01:00:58,839 COMMUNITY AND WE HAVE A LIVE 1447 01:00:58,839 --> 01:01:02,276 CHAT SUCH AS DISCORD OR SLACK 1448 01:01:02,276 --> 01:01:04,511 WHERE PATIENTS CAN POST TO 1449 01:01:04,511 --> 01:01:06,313 RESEARCHERS FOR SOURCING IDEAS 1450 01:01:06,313 --> 01:01:07,815 AND BETTER UNDERSTANDING 1451 01:01:07,815 --> 01:01:09,216 SYMPTOMS AND HAVING A DIRECT 1452 01:01:09,216 --> 01:01:10,250 LINE OF COMMUNICATION RATHER 1453 01:01:10,250 --> 01:01:13,053 THAN TRYING TO BOMBARD RESEARCH 1454 01:01:13,053 --> 01:01:15,823 OFFICES AND EVERY LINKEDIN 1455 01:01:15,823 --> 01:01:17,191 PROFILE ON THE INTERNET. 1456 01:01:17,191 --> 01:01:21,161 THERE MUST BE STRATEGY FOR 1457 01:01:21,161 --> 01:01:23,297 INCLUDING SEVERE PATIENT 1458 01:01:23,297 --> 01:01:24,765 POPULATION WITHOUT THAT 1459 01:01:24,765 --> 01:01:27,367 RESEARCHERS DON'T UNDERSTAND HOW 1460 01:01:27,367 --> 01:01:30,938 SERIOUS IT IS AND DR. NATH MADE 1461 01:01:30,938 --> 01:01:41,281 A COMMENT ME/CFS PATIENTS AREN'T 1462 01:01:41,281 --> 01:01:42,850 SO SEVERE. 1463 01:01:42,850 --> 01:01:43,517 PATIENTS SACRIFICE A TREMENDOUS 1464 01:01:43,517 --> 01:01:45,686 AMOUNT OF TIME, ENERGY AND 1465 01:01:45,686 --> 01:01:47,287 LITERALLY BLOOD TO PROVIDE THE 1466 01:01:47,287 --> 01:01:49,189 SAMPLES AND NEED THE INFORMATION 1467 01:01:49,189 --> 01:01:50,824 TO UNDERSTAND THEIR OWN BODY 1468 01:01:50,824 --> 01:01:52,993 CHEMISTRY IN A WAY THAT DOESN'T 1469 01:01:52,993 --> 01:01:54,828 RACK UP FOR MEDICAL BILLS FOR 1470 01:01:54,828 --> 01:01:57,297 THOSE WHO HAVE NO INCOME. 1471 01:01:57,297 --> 01:01:58,298 THE CONSUMER REVIEWER PROGRAM 1472 01:01:58,298 --> 01:02:00,834 RAN BY THE DEPEND OF DEFENSE IS 1473 01:02:00,834 --> 01:02:01,135 GREAT. 1474 01:02:01,135 --> 01:02:04,004 I MADE A DRAMATIC IMPACT IN MY 1475 01:02:04,004 --> 01:02:05,672 EXPERIENCE WITH THE REST OFF THE 1476 01:02:05,672 --> 01:02:06,306 REVIEW BOARD AND THIS PROGRAM 1477 01:02:06,306 --> 01:02:09,109 SHOULD BE EXPANDED TO ALL OF 1478 01:02:09,109 --> 01:02:09,743 NIH. 1479 01:02:09,743 --> 01:02:10,811 HOWEVER, WE NEED TO LIMIT 1480 01:02:10,811 --> 01:02:13,013 PARTICIPATION TO PATIENTS WITH 1481 01:02:13,013 --> 01:02:14,181 SOME DEGREE OF SCIENTIFIC 1482 01:02:14,181 --> 01:02:17,284 LITERACY TO GET THE MOST 1483 01:02:17,284 --> 01:02:18,552 INFORMATIVE RESPONSES. 1484 01:02:18,552 --> 01:02:21,155 ONE CONSUMER WE VIEWER DIDN'T 1485 01:02:21,155 --> 01:02:22,156 HAVE A TECHNICAL BACKGROUND AND 1486 01:02:22,156 --> 01:02:26,026 COULDN'T SPEAK ON THE TOPIC. 1487 01:02:26,026 --> 01:02:27,928 PATIENTS ARE SO DESPERATE FOR 1488 01:02:27,928 --> 01:02:30,831 ANSWERS MANY WOULD RATHER DIE 1489 01:02:30,831 --> 01:02:33,400 LAN LIVE WITH THEIR CHRONIC 1490 01:02:33,400 --> 01:02:33,667 ILLNESS. 1491 01:02:33,667 --> 01:02:37,070 I KNOW OF OF AN INTERNET GROUP 1492 01:02:37,070 --> 01:02:38,372 EXPERIENCED IN THE TRIAL OF IT 1493 01:02:38,372 --> 01:02:39,973 AND PULL THEIR MONEY TOGETHER 1494 01:02:39,973 --> 01:02:42,776 NORTH OF $100,000 PER ORDER AND 1495 01:02:42,776 --> 01:02:44,311 HAVE EXPERIMENTAL DRUGS YOU 1496 01:02:44,311 --> 01:02:46,613 NEVER HEARD OF MANUFACTURED IN 1497 01:02:46,613 --> 01:02:50,050 CHINA, REPACKAGED IN SUPPLEMENT 1498 01:02:50,050 --> 01:02:51,652 BOTTLES DISTRIBUTED ACROSS THE 1499 01:02:51,652 --> 01:02:52,085 U.S. 1500 01:02:52,085 --> 01:02:53,487 PATIENTS WILL NOT WAIT FOR 1501 01:02:53,487 --> 01:02:56,657 ANSWERS TO COME AND SOME 1502 01:02:56,657 --> 01:03:03,330 CLINICAL TRIALS INCLUDING A 1503 01:03:03,330 --> 01:03:05,499 SLEEP TRIAL AND SUPPLEMENTS 1504 01:03:05,499 --> 01:03:06,099 WON'T CUT IT. 1505 01:03:06,099 --> 01:03:07,568 OUR RESEARCHERS NEED TO HEAR IT. 1506 01:03:07,568 --> 01:03:10,837 THAT'S IT. 1507 01:03:10,837 --> 01:03:13,807 THANK YOU. 1508 01:03:13,807 --> 01:03:17,978 THANK YOU FOR JOINING US, SCOTT. 1509 01:03:17,978 --> 01:03:21,848 WE APPRECIATE THE COMMENTS. 1510 01:03:21,848 --> 01:03:22,716 ADAM FAGAN IS JOINING US NEXT 1511 01:03:22,716 --> 01:03:23,984 FROM THE WAITING ROOM TO THE 1512 01:03:23,984 --> 01:03:34,127 WEBINAR. 1513 01:03:36,029 --> 01:03:39,399 >> WE'RE READY TO HEAR YOUR 1514 01:03:39,399 --> 01:03:42,436 COMMENTS WHEN YOU'RE READY TO 1515 01:03:42,436 --> 01:03:43,103 START. 1516 01:03:43,103 --> 01:03:45,138 >> I'M ADAM FAGAN FOR THE 1517 01:03:45,138 --> 01:03:47,007 ASSOCIATION OF SCIENCE AND 1518 01:03:47,007 --> 01:03:49,977 TECHNOLOGY CENTERS NONPROFIT 1519 01:03:49,977 --> 01:03:50,577 MEMBERSHIP ORGANIZATION FOR 1520 01:03:50,577 --> 01:03:53,113 SCIENCE CENTERS AN MUSEUMS AND 1521 01:03:53,113 --> 01:03:54,848 OTHERS WHO ENGAGE THE PUBLIC IN 1522 01:03:54,848 --> 01:03:58,819 SCIENCE AND PUBLIC. 1523 01:03:58,819 --> 01:04:03,590 OUR MEMBERS DIRECTLY ENGAGE OVER 1524 01:04:03,590 --> 01:04:05,225 100 MILLION INDIVIDUALS AND 1525 01:04:05,225 --> 01:04:06,493 PLAYERS IN THE INTERSECTION OF 1526 01:04:06,493 --> 01:04:07,861 SCIENCE AND SOCIETY IN EVERY 1527 01:04:07,861 --> 01:04:10,063 COMMUNITY ACROSS THE COUNTRY. 1528 01:04:10,063 --> 01:04:16,103 THANK YOU TO THE NIH OFFICE OF 1529 01:04:16,103 --> 01:04:18,772 SCIENCE POLICY AND CLINICAL 1530 01:04:18,772 --> 01:04:19,673 RESEARCH PARTICIPATION AND 1531 01:04:19,673 --> 01:04:22,843 SOLICITING PUBLIC INPUT. 1532 01:04:22,843 --> 01:04:26,847 WE'RE GLAD TO SEE NIH ENGAGE THE 1533 01:04:26,847 --> 01:04:29,283 PUBLIC IN RESEARCH AND THOUGH 1534 01:04:29,283 --> 01:04:31,852 IT'S KEY IN NIH PROGRAMS IT'S 1535 01:04:31,852 --> 01:04:33,787 NOT YET BEEN EMBRACED ACROSS THE 1536 01:04:33,787 --> 01:04:34,488 AGENCY. 1537 01:04:34,488 --> 01:04:36,990 ONE IMPORTANT WAY FOR PUBLIC TO 1538 01:04:36,990 --> 01:04:39,393 HAVE TRUST IN SCIENCE IS TO FEEL 1539 01:04:39,393 --> 01:04:40,827 AGENCY AND OWNERSHIP IN THE 1540 01:04:40,827 --> 01:04:41,194 PROCESS. 1541 01:04:41,194 --> 01:04:43,397 WHILE THE PACE OF SCIENCE HAS 1542 01:04:43,397 --> 01:04:44,631 ACCELERATED AND OUR 1543 01:04:44,631 --> 01:04:45,899 UNDERSTANDING OF WHAT MAKES FOR 1544 01:04:45,899 --> 01:04:47,601 ETHICAL RESEARCH HAS EVOLVED, 1545 01:04:47,601 --> 01:04:50,203 EFFORTS TO MORE FULLY ENGAGE THE 1546 01:04:50,203 --> 01:04:51,838 PUBLIC HAVE NOT KEPT PACE. 1547 01:04:51,838 --> 01:04:53,340 THE PUBLIC HAS GENERALLY NOT 1548 01:04:53,340 --> 01:04:54,608 BEEN BROUGHT INTO DISCUSSION OF 1549 01:04:54,608 --> 01:04:58,145 WHICH RESEARCH TO BE PURSUED, 1550 01:04:58,145 --> 01:05:00,614 HOW THE INVESTIGATIONS ARE TO BE 1551 01:05:00,614 --> 01:05:03,884 CONDUCTED AND WHO BENEFITS. 1552 01:05:03,884 --> 01:05:07,187 ABOUT THE ENGAGE INITIATIVE 1553 01:05:07,187 --> 01:05:13,727 INCLUDING THE WORKING GROUP IT'S 1554 01:05:13,727 --> 01:05:17,264 DEFINED THROUGH ADVOCATES AN FOR 1555 01:05:17,264 --> 01:05:18,832 THE PATIENT ADVOCACY COMMUNITY 1556 01:05:18,832 --> 01:05:21,268 ARE CRITICAL COMPONENTS AROUND 1557 01:05:21,268 --> 01:05:21,868 CLINICAL RESEARCH THERE'S A 1558 01:05:21,868 --> 01:05:22,669 WIDER UNIVERSE OF PEOPLE WHO 1559 01:05:22,669 --> 01:05:25,806 SHOULD BE ENGAGED. 1560 01:05:25,806 --> 01:05:26,840 PUBLIC ENGAGEMENT IS STRENGTHENS 1561 01:05:26,840 --> 01:05:29,976 IF IT INCORPORATES THE VOICES OF 1562 01:05:29,976 --> 01:05:31,812 THOSE NOT ONLY WITH A DIRECT 1563 01:05:31,812 --> 01:05:33,113 PERSONAL STAKE BUT THE PUBLIC. 1564 01:05:33,113 --> 01:05:35,849 THE MORE ENGAGED THE HIGHER 1565 01:05:35,849 --> 01:05:37,284 TRUST AND GREATER SUPPORT FOR 1566 01:05:37,284 --> 01:05:40,654 BIO MEDICAL RESEARCH. 1567 01:05:40,654 --> 01:05:46,460 MOREOVER, RESEARCH HAS SHOWN 1568 01:05:46,460 --> 01:05:49,629 SIXTY -- U.S. ADULTS HAVE AN 1569 01:05:49,629 --> 01:05:52,032 APPETITE FOR ENGAGING IN 1570 01:05:52,032 --> 01:05:52,899 RESEARCH AND CLINICAL TRIALS AND 1571 01:05:52,899 --> 01:05:55,869 A RANGE OF TOPICS RELEVANT TO OR 1572 01:05:55,869 --> 01:05:57,170 OF INTEREST TO A BROADER CROSS 1573 01:05:57,170 --> 01:05:57,971 SECTION OF PEOPLE INCLUDING MANY 1574 01:05:57,971 --> 01:06:00,440 WHO ARE NOT YET AWARE OF THE 1575 01:06:00,440 --> 01:06:01,875 FUTURE DIAGNOSIS. 1576 01:06:01,875 --> 01:06:04,411 THIS COMMITMENT TO BROAD PUBLIC 1577 01:06:04,411 --> 01:06:07,314 ENGAGEMENT ENSURES A VOICE FOR 1578 01:06:07,314 --> 01:06:09,249 ALL BACKGROUNDS AND RESEARCH, 1579 01:06:09,249 --> 01:06:10,817 PRIORITIES, PRACTICES AND 1580 01:06:10,817 --> 01:06:11,284 FINDINGS. 1581 01:06:11,284 --> 01:06:13,920 AS NIH CONTINUES TO REFINE ITS 1582 01:06:13,920 --> 01:06:17,791 PLANS WE URGE YOU TO BROADEN THE 1583 01:06:17,791 --> 01:06:19,426 REACH OF THE INITIATE AND TAP 1584 01:06:19,426 --> 01:06:20,160 INTO THOSE WITH EXPERIENCE IN 1585 01:06:20,160 --> 01:06:20,660 THE WORK. 1586 01:06:20,660 --> 01:06:22,229 AS AN ORGANIZATION WITH A VISION 1587 01:06:22,229 --> 01:06:23,597 OF INCREASING UNDERSTANDING OF 1588 01:06:23,597 --> 01:06:26,400 AND ENGAGEMENT WITH SCIENCE AND 1589 01:06:26,400 --> 01:06:29,169 TECHNOLOGY AMONG ALL PEOPLE, OUR 1590 01:06:29,169 --> 01:06:29,936 MEMBERS ARE AMONG THE 1591 01:06:29,936 --> 01:06:31,972 ORGANIZATIONS WELL POSITIONED TO 1592 01:06:31,972 --> 01:06:33,440 WORK WITH PARTNERS AT NIH AND 1593 01:06:33,440 --> 01:06:35,675 BEYOND TO ENGAGE THEIR 1594 01:06:35,675 --> 01:06:38,845 COMMUNITIES IN OPEN AND HONEST 1595 01:06:38,845 --> 01:06:39,513 DISCUSSIONS INCLUDING AROUND 1596 01:06:39,513 --> 01:06:40,547 CLINICAL RESEARCH AND THE 1597 01:06:40,547 --> 01:06:41,248 UNDERLYING SCIENCE. 1598 01:06:41,248 --> 01:06:42,883 AS HIGHLY TRUSTED INSTITUTIONS, 1599 01:06:42,883 --> 01:06:47,387 SCIENCE CENTERS AND MUSEUMS 1600 01:06:47,387 --> 01:06:48,622 TACKLE IMPORTANT CHALLENGES 1601 01:06:48,622 --> 01:06:50,824 INCLUDING THE MANY SUPPORTED BY 1602 01:06:50,824 --> 01:06:53,994 THE SCIENCE EDUCATION 1603 01:06:53,994 --> 01:06:55,028 PARTNERSHIP AWARD PROGRAM NOW 1604 01:06:55,028 --> 01:07:03,437 BASED NIGMS AND HAVE EXPERTISE 1605 01:07:03,437 --> 01:07:05,105 AND THOSE THAT TOUCH ON 1606 01:07:05,105 --> 01:07:06,072 SENSITIVE SOCIETAL ISSUES. 1607 01:07:06,072 --> 01:07:06,940 THANK YOU FOR THE COMMUNITY AND 1608 01:07:06,940 --> 01:07:09,109 WE LOOK FORWARD TO WORKING WITH 1609 01:07:09,109 --> 01:07:09,276 YOU. 1610 01:07:09,276 --> 01:07:13,780 >> THANK YOU, VERY MUCH, ADAM. 1611 01:07:13,780 --> 01:07:15,215 AT THIS POINT WE HAVE NO ONE IN 1612 01:07:15,215 --> 01:07:16,450 THE WAITING ROOM. 1613 01:07:16,450 --> 01:07:17,984 WE HAD A FEW PEOPLE 1614 01:07:17,984 --> 01:07:21,054 UNFORTUNATELY FOR ONE REASON OR 1615 01:07:21,054 --> 01:07:26,827 ANOTHER UNABLE TO JOIN US AND 1616 01:07:26,827 --> 01:07:28,795 AFTER THE MEETING WE'LL E-MAIL 1617 01:07:28,795 --> 01:07:29,963 THEM AND ENCOURAGE THEM TO 1618 01:07:29,963 --> 01:07:34,835 SUBMIT WHAT THE COMMENTS THEY 1619 01:07:34,835 --> 01:07:35,802 WERE GOING TO GIVE. 1620 01:07:35,802 --> 01:07:38,238 WE HAVE ONE MORE SPEAKER SIGNED 1621 01:07:38,238 --> 01:07:41,308 UP FOR 2:10 P.M. 1622 01:07:41,308 --> 01:07:43,677 THEY'RE NOT IN THE WAITING ROOM 1623 01:07:43,677 --> 01:07:45,745 YET SO I DON'T KNOW IF YOU AND 1624 01:07:45,745 --> 01:07:48,615 YOUR COLLEAGUES AND THE TO DO 1625 01:07:48,615 --> 01:07:50,684 WRAP-UP AND IF THAT PERSON JOINS 1626 01:07:50,684 --> 01:07:54,821 WE CAN ACCOMMODATE THEIR COMMENT 1627 01:07:54,821 --> 01:07:57,357 TO KEEP THE FLOW OF THE MEETING 1628 01:07:57,357 --> 01:07:57,557 GOING. 1629 01:07:57,557 --> 01:07:59,392 >> I WOULD LOVE TO HEAR FROM 1630 01:07:59,392 --> 01:08:01,127 CHRIS AND SUE DIRECTLY. 1631 01:08:01,127 --> 01:08:11,671 I KNOW WE STRUGGLED WITH HAVING 1632 01:08:14,908 --> 01:08:17,310 WE'RE NOT JUST TALKING ABOUT 1633 01:08:17,310 --> 01:08:18,445 PEOPLE JUST IN THE TIME OF NEED 1634 01:08:18,445 --> 01:08:21,615 AND I'D LOVE IT IF YOU WANTED TO 1635 01:08:21,615 --> 01:08:24,584 REFLECT ON THE COMMENT. 1636 01:08:24,584 --> 01:08:25,719 ADAM'S POINT WAS SPOT ON IF YOU 1637 01:08:25,719 --> 01:08:36,162 WANTED TO REFLECT ON THAT. 1638 01:08:39,866 --> 01:08:41,334 >> I WANT TO EXPRESS ON BEHALF 1639 01:08:41,334 --> 01:08:42,802 OF ALL OF US OUR APPRECIATION 1640 01:08:42,802 --> 01:08:44,638 FOR ALL THE COMMENTS THAT WE'VE 1641 01:08:44,638 --> 01:08:45,472 HEARD ESPECIALLY THE ONE YOU 1642 01:08:45,472 --> 01:08:46,840 JUST MENTIONED, LYRIC. 1643 01:08:46,840 --> 01:08:49,442 THIS IS SOMETHING OUR WORKING 1644 01:08:49,442 --> 01:08:54,848 GROUP HAS BEEN VERY PASSION NAL 1645 01:08:54,848 --> 01:08:58,752 ABOUT THE NEED TO EXPAND OUR 1646 01:08:58,752 --> 01:08:59,986 REACH. 1647 01:08:59,986 --> 01:09:05,992 IT CAN'T JUST BE A SPECIFIC 1648 01:09:05,992 --> 01:09:11,131 GROUP OF PEOPLE AND HARD TO 1649 01:09:11,131 --> 01:09:21,775 REACH POPULATIONS AND I AGREE 1650 01:09:23,843 --> 01:09:24,811 THE COMMENTS HAVE BEEN SPOT ON 1651 01:09:24,811 --> 01:09:26,846 AND MANY OF THE OTHERS WE HEARD 1652 01:09:26,846 --> 01:09:29,716 FROM THE OTHER SPEAKERS TODAY 1653 01:09:29,716 --> 01:09:31,952 OUR THEMES THAT HAVE COME UP 1654 01:09:31,952 --> 01:09:33,787 OVER AND OVER AGAIN. 1655 01:09:33,787 --> 01:09:35,422 ON ONE HAND NOT GREAT THAT WE 1656 01:09:35,422 --> 01:09:36,523 HAVE SO MANY ISSUES THAT WE IT 1657 01:09:36,523 --> 01:09:39,492 NEED TO TACKLE BUT ON THE OTHER 1658 01:09:39,492 --> 01:09:41,595 HAND WE LOOK AT THESE AS 1659 01:09:41,595 --> 01:09:45,966 OPPORTUNITIES TO BUILD AND GROW 1660 01:09:45,966 --> 01:09:47,801 FROM WHERE WE ARE SO AGAIN I 1661 01:09:47,801 --> 01:09:49,502 WANTED TO EXPRESS OUR 1662 01:09:49,502 --> 01:09:50,337 APPRECIATION. 1663 01:09:50,337 --> 01:09:51,905 SUE, I'M SURE YOU HAVE A FEW 1664 01:09:51,905 --> 01:09:55,108 THINGS YOU'D LIKE TO SAY ALSO. 1665 01:09:55,108 --> 01:10:00,280 >> I APPRECIATE IT SOME THINGS 1666 01:10:00,280 --> 01:10:10,790 THAT AND IT CAN'T BE STUDY BY 1667 01:10:14,861 --> 01:10:14,995 STUDY. 1668 01:10:14,995 --> 01:10:25,271 IT'S A PROCESS. 1669 01:10:27,774 --> 01:10:32,012 IT HAS TO BE ABOUT THE RETURN OF 1670 01:10:32,012 --> 01:10:37,717 VALUE AS WELL TO THE COMMUNITIES 1671 01:10:37,717 --> 01:10:44,791 AND THINKING ABOUT THEY ARE 1672 01:10:44,791 --> 01:10:51,331 PERHAPS BE DESIGN BY THE NIH TO 1673 01:10:51,331 --> 01:10:59,973 HELP WITH THAT AND INVOLVED IN 1674 01:10:59,973 --> 01:11:02,208 THE SCIENCE INSTITUTE IN 1675 01:11:02,208 --> 01:11:03,777 COLUMBIA FUNDED IN ROUND ONE A 1676 01:11:03,777 --> 01:11:09,182 LONG TIME AGO AND AS A RAPID 1677 01:11:09,182 --> 01:11:10,183 RADX OP INVESTIGATOR. 1678 01:11:10,183 --> 01:11:12,018 I THINK ABOUT THIS ALL THE TIME 1679 01:11:12,018 --> 01:11:17,991 BECAUSE I FEEL SO MUCH 1680 01:11:17,991 --> 01:11:21,895 INVESTMENTS GOES INTO 1681 01:11:21,895 --> 01:11:23,196 ESTABLISHING THESE NETWORKS 1682 01:11:23,196 --> 01:11:23,997 BUILT FOR PURPOSE. 1683 01:11:23,997 --> 01:11:26,833 I WONDER HOW DO WE KEEP THEM 1684 01:11:26,833 --> 01:11:28,668 WARM IN BETWEEN. 1685 01:11:28,668 --> 01:11:32,739 SO MANY EFFORT WENT TO RADX 1686 01:11:32,739 --> 01:11:37,744 AFTER COVID WITH AMAZING 1687 01:11:37,744 --> 01:11:43,750 COMMUNITY ENGAGEMENT AND HOW CAN 1688 01:11:43,750 --> 01:11:46,219 WE TAKE ADVANTAGE OF THOSE 1689 01:11:46,219 --> 01:11:48,421 IMPORTANT LESSONS. 1690 01:11:48,421 --> 01:11:51,391 I THINK PROBABLY SOME OF THE 1691 01:11:51,391 --> 01:11:54,394 THINGS THAT ARE OUR INITIATIVE 1692 01:11:54,394 --> 01:11:56,496 ARE INTERNAL TO THE NIH AND 1693 01:11:56,496 --> 01:11:58,565 CREATE IS PROBABLY TACKLING SOME 1694 01:11:58,565 --> 01:12:02,435 OF THOSE KINDS OF THINGS AS WELL 1695 01:12:02,435 --> 01:12:07,874 BUT WE HEAR THAT NOT 1696 01:12:07,874 --> 01:12:08,475 TRANSACTIONAL DOESN'T CREATE 1697 01:12:08,475 --> 01:12:08,675 TRUST. 1698 01:12:08,675 --> 01:12:11,911 YEAH. 1699 01:12:11,911 --> 01:12:13,413 >> I KNOW WE'RE SCHEDULED TO 1700 01:12:13,413 --> 01:12:15,582 WRAP UP TOGETHER BUT I WOULD 1701 01:12:15,582 --> 01:12:17,350 LOVE TO TURN TO YOU TO REFLECT 1702 01:12:17,350 --> 01:12:18,818 ON THE CONVERSATION AND I KNOW 1703 01:12:18,818 --> 01:12:21,054 IT'S SOMETHING YOU THINK ABOUT 1704 01:12:21,054 --> 01:12:21,354 DAILY. 1705 01:12:21,354 --> 01:12:23,990 >> FIRST, THANK YOU, LYRIC AND 1706 01:12:23,990 --> 01:12:24,390 SUZANNE. 1707 01:12:24,390 --> 01:12:26,292 I COULDN'T AGREE MORE WITH YOUR 1708 01:12:26,292 --> 01:12:28,228 COMMENTS AND ECHO SOME OF THE 1709 01:12:28,228 --> 01:12:29,996 RICH AND VALUABLE COMMENTS THAT 1710 01:12:29,996 --> 01:12:31,965 WERE MADE THAT I THINK HIGHLIGHT 1711 01:12:31,965 --> 01:12:34,834 HOW WE HAVE TO MOVE BEYOND JUST 1712 01:12:34,834 --> 01:12:36,870 THAT TRANSACTIONAL APPROACH WE 1713 01:12:36,870 --> 01:12:40,673 CONTINUE TO ENCOUNTER EVEN WHEN 1714 01:12:40,673 --> 01:12:43,543 WE'RE ALL WELL INTENTIONED AND 1715 01:12:43,543 --> 01:12:45,612 RECOGNIZE THE IMPORTANCE OF 1716 01:12:45,612 --> 01:12:50,216 REINFORCING AND BUILDING ENG 1717 01:12:50,216 --> 01:12:50,850 ENGAGE 1718 01:12:50,850 --> 01:12:51,151 ENGAGEMENT. 1719 01:12:51,151 --> 01:12:52,719 I FOUND SO MANY COMMENTS ON 1720 01:12:52,719 --> 01:12:54,254 RECONSIDERING THE SCOPE AND 1721 01:12:54,254 --> 01:12:55,421 QUALITY OF ENGAGEMENT. 1722 01:12:55,421 --> 01:12:57,357 THERE'S MORE WE CAN BE DOING. 1723 01:12:57,357 --> 01:12:59,425 THERE'S VALUABLE COMMENTS THAT 1724 01:12:59,425 --> 01:13:02,829 RELATED TO WAYS THAT NIH FUNDED 1725 01:13:02,829 --> 01:13:03,963 RESEARCH COULD BUILD ON THE 1726 01:13:03,963 --> 01:13:05,999 CURRENT FOUNDATION OF ENGAGEMENT 1727 01:13:05,999 --> 01:13:15,108 AND EXPAND THAT FURTHER. 1728 01:13:15,108 --> 01:13:20,346 AND WE NEED TO THINK ABOUT EACH 1729 01:13:20,346 --> 01:13:21,681 PERSON IN A CLINICAL TRIAL AND 1730 01:13:21,681 --> 01:13:23,316 THEIR UNIQUE SITUATION AND 1731 01:13:23,316 --> 01:13:23,616 NEEDS. 1732 01:13:23,616 --> 01:13:24,918 THAT'S A VALUABLE REMINDER FOR 1733 01:13:24,918 --> 01:13:25,285 US. 1734 01:13:25,285 --> 01:13:29,989 WE TEND TO THINK ABOUT ENG 1735 01:13:29,989 --> 01:13:34,327 ENGINEENGINE 1736 01:13:34,327 --> 01:13:35,995 -- ENGAGEMENT AND IT'S A BROAD 1737 01:13:35,995 --> 01:13:39,999 NUANCE AND HAS TO BE FOCUSSED AT 1738 01:13:39,999 --> 01:13:44,204 A LEVEL AND INTRODUCE ITSELF IN 1739 01:13:44,204 --> 01:13:47,207 GENE THERAPIES AND PERSONALIZED 1740 01:13:47,207 --> 01:13:49,409 AND PRECISION MEDICINE, ORPHAN 1741 01:13:49,409 --> 01:13:51,010 AND RARE DISEASES. 1742 01:13:51,010 --> 01:13:53,847 THERE'S A LOT WE CAN LEARN FROM 1743 01:13:53,847 --> 01:13:55,281 THESE COMMUNITY INITIATIVES TO 1744 01:13:55,281 --> 01:13:57,750 HELP US UNDERSTAND MORE BROADLY 1745 01:13:57,750 --> 01:14:01,754 THE VARIATION IN NEED BASED ON 1746 01:14:01,754 --> 01:14:03,756 DISEASE, BASED ON EACH PATIENT'S 1747 01:14:03,756 --> 01:14:04,324 UNIQUE SITUATION AND HEALTH 1748 01:14:04,324 --> 01:14:13,032 JOURNEY. 1749 01:14:13,032 --> 01:14:14,434 >> TO MAKE SURE WE DON'T HAVE 1750 01:14:14,434 --> 01:14:15,501 OTHER PEOPLE IN THE WAITING ROOM 1751 01:14:15,501 --> 01:14:18,838 AND TALK ABOUT WHAT WILL HAPPEN 1752 01:14:18,838 --> 01:14:21,608 AFTER TODAY BECAUSE OF THE 1753 01:14:21,608 --> 01:14:22,842 SUSTAINABILITY WE'RE GOING TO 1754 01:14:22,842 --> 01:14:24,477 TALK ABOUT IN LEAVING YOU SO 1755 01:14:24,477 --> 01:14:26,512 TALK ABOUT AND RYAN I WANT TO 1756 01:14:26,512 --> 01:14:27,547 MAKE SURE WE'RE NOT CUTTING 1757 01:14:27,547 --> 01:14:28,014 ANYONE OFF. 1758 01:14:28,014 --> 01:14:29,983 >> NO, THERE'S NO ONE CURRENT HI 1759 01:14:29,983 --> 01:14:30,817 IN THE WAITING ROOM. 1760 01:14:30,817 --> 01:14:33,253 >> THANK YOU SO MUCH. 1761 01:14:33,253 --> 01:14:38,358 I'D LIKE TO BEGIN BY THANK 1762 01:14:38,358 --> 01:14:41,828 EVERYONE WHO TOOK TIME TO 1763 01:14:41,828 --> 01:14:43,329 PROVIDE PUBLIC COMMENT. 1764 01:14:43,329 --> 01:14:46,132 HOW DO WE ENGAGE HUMAN BEINGS TO 1765 01:14:46,132 --> 01:14:49,435 ENGAGE AND YOU'RE TAKING TIME 1766 01:14:49,435 --> 01:14:50,236 FROM YOUR LIFE TO SPEND IT WITH 1767 01:14:50,236 --> 01:14:51,237 US AND WANT TO EMPHASIZE WE'RE 1768 01:14:51,237 --> 01:14:52,572 DOING THIS BECAUSE WE WANT TO 1769 01:14:52,572 --> 01:14:53,840 HEAR IT AND WE WANT TO LEARN 1770 01:14:53,840 --> 01:14:56,809 FROM IT AND WANT TO USE IT 1771 01:14:56,809 --> 01:14:58,278 MOVING FORWARD. 1772 01:14:58,278 --> 01:14:59,712 YOUR TIME HOPEFULLY YOU FEEL IS 1773 01:14:59,712 --> 01:15:00,914 WELL SPENT AND TALK ABOUT HOW WE 1774 01:15:00,914 --> 01:15:02,849 HOPE TO KEEP YOU ENGAGED MOVING 1775 01:15:02,849 --> 01:15:04,250 FORWARD. 1776 01:15:04,250 --> 01:15:05,952 SO COMMENTS LIKE WE HEARD TODAY 1777 01:15:05,952 --> 01:15:08,021 AND WE HOPE TO HEAR MORE AGAIN 1778 01:15:08,021 --> 01:15:09,789 THROUGH THE WRITTEN REQUEST FOR 1779 01:15:09,789 --> 01:15:11,324 INFORMATION RESPONSES WILL SERVE 1780 01:15:11,324 --> 01:15:13,893 AS AN IMPORTANT INPUT IN THE 1781 01:15:13,893 --> 01:15:17,230 BUILDING BLOCKS OF THE 1782 01:15:17,230 --> 01:15:19,432 ENGAGEMENT RECOMMENDATION. 1783 01:15:19,432 --> 01:15:21,434 YOU HEARD TEASER INTERNAL WORK 1784 01:15:21,434 --> 01:15:26,205 WITH THE PROGRAM FOLKS WHO HAVE 1785 01:15:26,205 --> 01:15:27,540 HAVE BEEN SMART IN PIONEERING 1786 01:15:27,540 --> 01:15:28,908 THAT AND HOPEFULLY HEAR MORE AT 1787 01:15:28,908 --> 01:15:30,743 THE NEXT WEBINAR. 1788 01:15:30,743 --> 01:15:33,279 SPECIFICALLY THE WORKING GROUP 1789 01:15:33,279 --> 01:15:34,514 WILL USE THE INFORMATION TO 1790 01:15:34,514 --> 01:15:35,615 DRAFT PRODUCTS WHICH THEY 1791 01:15:35,615 --> 01:15:38,484 CONTINUE TO SHARE PUBLICALLY AND 1792 01:15:38,484 --> 01:15:41,988 AS SUE AND CHRIS MENTIONED IN 1793 01:15:41,988 --> 01:15:44,791 OTHER WAYS OF ENGAGING YOU 1794 01:15:44,791 --> 01:15:45,425 MOVING FORWARD. 1795 01:15:45,425 --> 01:15:49,028 WE'LL STAY TUNED AND MONITOR OUR 1796 01:15:49,028 --> 01:15:50,563 WEBSITE AND OUR LIST SERVE IF 1797 01:15:50,563 --> 01:15:52,465 YOU'RE NOT A SUBSCRIBER FOR HOW 1798 01:15:52,465 --> 01:15:53,599 TO GET INVOLVED THERE. 1799 01:15:53,599 --> 01:15:55,835 I WANT TO EMPHASIZE THERE WILL 1800 01:15:55,835 --> 01:15:56,536 BE MULTIPLE OPPORTUNITIES FOR 1801 01:15:56,536 --> 01:15:58,004 MEMBERS OF THE PUBLIC TO SHARE 1802 01:15:58,004 --> 01:15:58,571 THEIR FEEDBACK. 1803 01:15:58,571 --> 01:16:01,007 WE'LL MAKE SURE TO BROADLY 1804 01:16:01,007 --> 01:16:02,241 ANNOUNCE THE OPPORTUNITIES. 1805 01:16:02,241 --> 01:16:05,778 BEFORE I FULLY CLOSE, KEN, AS 1806 01:16:05,778 --> 01:16:08,214 OUR GRACIOUS CO-SPONSOR WHO I 1807 01:16:08,214 --> 01:16:10,616 ALREADY LEARNED SO MUCH FROM IS 1808 01:16:10,616 --> 01:16:13,119 THERE ANY REMARKS YOU'D LIKE TO 1809 01:16:13,119 --> 01:16:14,253 SHARE BEFORE WE CLOSE TODAY IN 1810 01:16:14,253 --> 01:16:15,755 >> NO, YOU HIT IT OUT OF THE 1811 01:16:15,755 --> 01:16:17,457 PARK. 1812 01:16:17,457 --> 01:16:18,591 WHAT A PLEASURE TO BE HERE AND 1813 01:16:18,591 --> 01:16:19,492 LEARN FROM ALL OF YOU. 1814 01:16:19,492 --> 01:16:21,260 WE LOOK FORWARD TO MORE 1815 01:16:21,260 --> 01:16:22,261 OPPORTUNITIES LIKE THIS. 1816 01:16:22,261 --> 01:16:22,829 THANK YOU SO MUCH. 1817 01:16:22,829 --> 01:16:27,433 >> SUE AND CHRIS, ANY FINAL 1818 01:16:27,433 --> 01:16:31,037 WORDS YOU'D LIKE TO -- ANY WORDS 1819 01:16:31,037 --> 01:16:33,840 YOU'D LIKE TO SHARE. 1820 01:16:33,840 --> 01:16:34,841 >> WE'VE LISTENED. 1821 01:16:34,841 --> 01:16:36,709 WE'LL CONTINUE TO LISTEN. 1822 01:16:36,709 --> 01:16:38,611 >> I'LL ECHO SAY AND THIS IS THE 1823 01:16:38,611 --> 01:16:39,312 FIRST OF MANY ADDITIONAL 1824 01:16:39,312 --> 01:16:40,713 OPPORTUNITIES TO HEAR FROM THE 1825 01:16:40,713 --> 01:16:43,750 COMMUNITY SO WE ENCOURAGE YOU TO 1826 01:16:43,750 --> 01:16:45,118 CONTINUE TALKING WITH US AND 1827 01:16:45,118 --> 01:16:47,553 PLEASE SHARE THE WORD WITH YOUR 1828 01:16:47,553 --> 01:16:50,823 COMMUNITIES SO WE DO HAVE THAT 1829 01:16:50,823 --> 01:16:53,259 MORE BROAD AND DIVERSE 1830 01:16:53,259 --> 01:16:53,860 PARTICIPATION AND VOICES IN 1831 01:16:53,860 --> 01:16:54,093 ENGAGE. 1832 01:16:54,093 --> 01:16:57,296 THANK YOU. 1833 01:16:57,296 --> 01:16:59,899 >> AND OF COURSE, MY 1834 01:16:59,899 --> 01:17:00,833 CO-PRESENTERS HAVE ENDED THIS 1835 01:17:00,833 --> 01:17:02,802 PERFECTLY SO WITH THAT I WILL 1836 01:17:02,802 --> 01:17:04,971 LEAVE YOU ALL AND STAY TUNED FOR 1837 01:17:04,971 --> 01:17:06,139 MORE INFORMATION AND WE'LL 1838 01:17:06,139 --> 01:17:07,974 CONTINUE TO REACH OUT TO SOLICIT 1839 01:17:07,974 --> 01:17:08,908 INFORMATION AS WE MOVE FORWARD. 1840 01:17:08,908 --> 01:17:19,452 THANK YOU FOR SPENDING YOUR TIM