1 00:00:05,200 --> 00:00:07,960 WELCOME TO SESSION 4. 2 00:00:07,960 --> 00:00:09,560 TODAY IS EQUITY AND INCLUSION 3 00:00:09,560 --> 00:00:11,520 DAY AND OUR SPEAKERS ARE GOING 4 00:00:11,520 --> 00:00:14,480 TO PICK UP ON SOME OF THE 5 00:00:14,480 --> 00:00:19,440 THEMES THAT DOCTOR WENT 6 00:00:19,440 --> 00:00:22,280 WENDLER AND I MENTIONED AND 7 00:00:22,280 --> 00:00:24,600 PROFESSOR SHAH FROM LAST WEEK. 8 00:00:24,600 --> 00:00:27,280 WE HAVE THREE QUICK 9 00:00:27,280 --> 00:00:27,800 ADMINISTRATORS OR 10 00:00:27,800 --> 00:00:28,440 QUIZ-RELATED. 11 00:00:28,440 --> 00:00:32,400 THE FIRST IS THE WORD OF THE 12 00:00:32,400 --> 00:00:35,120 DAY IS EQUITY. 13 00:00:35,120 --> 00:00:37,960 SO I WILL MENTION THAT AGAIN A 14 00:00:37,960 --> 00:00:39,000 COUPLE OF TIMES TODAY. 15 00:00:39,000 --> 00:00:41,720 THANK YOU TO THE 192 OF YOU 16 00:00:41,720 --> 00:00:43,240 WHO ALREADY COMPLETED THE 17 00:00:43,240 --> 00:00:44,800 MONKEY SURVEY THAT I SENT 18 00:00:44,800 --> 00:00:46,360 AROUND ABOUT HOW YOU HEARD 19 00:00:46,360 --> 00:00:46,840 ABOUT THE COURSE. 20 00:00:46,840 --> 00:00:49,800 I AM GOING TO SEND THAT LINK 21 00:00:49,800 --> 00:00:50,680 AROUND AGAIN TODAY AFTER 22 00:00:50,680 --> 00:00:51,000 CLASS. 23 00:00:51,000 --> 00:00:53,040 IF YOU HAVE ALREADY FILLED IT 24 00:00:53,040 --> 00:00:56,840 OUT, AGAIN, YOU CAN DISREGARD. 25 00:00:56,840 --> 00:00:57,600 THANK YOU. 26 00:00:57,600 --> 00:01:02,840 BUT WE WOULD LIKE A COUPLE 27 00:01:02,840 --> 00:01:04,480 MORE PEOPLE TO FILL THAT OUT. 28 00:01:04,480 --> 00:01:05,760 THE OTHER THING I WANT TO 29 00:01:05,760 --> 00:01:08,320 MENTION TODAY IS WE ARE GOING 30 00:01:08,320 --> 00:01:10,760 TO BE USING SLIDO AND IT IS A 31 00:01:10,760 --> 00:01:12,160 PROGRAM YOU CAN LOG IN 32 00:01:12,160 --> 00:01:15,840 DIRECTLY TO YOUR LAPTOP OR 33 00:01:15,840 --> 00:01:17,840 DESKTOP AT SLIDO.COM OR YOU 34 00:01:17,840 --> 00:01:19,520 CAN LOAD IT ON YOUR SMART 35 00:01:19,520 --> 00:01:21,680 PHONE OR LOOK IT UP ON THE WEB 36 00:01:21,680 --> 00:01:23,880 FOR YOUR SMART PHONE. 37 00:01:23,880 --> 00:01:28,040 AND FOR Dr. LA NGFORD'S 38 00:01:28,040 --> 00:01:28,960 PRESENTATION AND FOR MINE AT 39 00:01:28,960 --> 00:01:30,360 THE END OF THE DAY, WHAT WILL 40 00:01:30,360 --> 00:01:32,280 HAPPEN IS I WILL ASK QUESTIONS 41 00:01:32,280 --> 00:01:35,080 AND YOU WILL BE ABLE TO EITHER 42 00:01:35,080 --> 00:01:36,680 PICK ANSWERS OR PUT IN SOME 43 00:01:36,680 --> 00:01:38,840 ANSWERS SO WE CAN GET SOME 44 00:01:38,840 --> 00:01:39,520 AUDIENCE PARTICIPATION. 45 00:01:39,520 --> 00:01:42,520 THE CODE FOR THAT, I PUT BOTH 46 00:01:42,520 --> 00:01:44,560 IN THE ANNOUNCEMENTS AND 47 00:01:44,560 --> 00:01:44,880 E-MAIL. 48 00:01:44,880 --> 00:01:47,120 I AM GOING TO MENTION IT NOW 49 00:01:47,120 --> 00:01:49,680 IN CASE FOLKS HAVE A PENCIL OR 50 00:01:49,680 --> 00:01:54,040 A PEN. 51 00:01:54,040 --> 00:01:54,960 IT IS 9,847,744. 52 00:01:54,960 --> 00:01:57,120 AND YOU DON'T NEED TO DO 53 00:01:57,120 --> 00:01:57,480 ANYTHING. 54 00:01:57,480 --> 00:02:00,160 YOU DON'T NEED TO CREATE AN 55 00:02:00,160 --> 00:02:01,680 ACCOUNT, DON'T NEED TO LOG IN. 56 00:02:01,680 --> 00:02:04,240 WHEN YOU GO THERE, IT WILL SAY 57 00:02:04,240 --> 00:02:06,480 WHAT IS YOUR PARTICIPANT CODE 58 00:02:06,480 --> 00:02:08,680 TO PUT IN AND I WILL MENTION 59 00:02:08,680 --> 00:02:11,800 THAT AGAIN BEFORE Dr. 60 00:02:11,800 --> 00:02:12,640 LANGFORD TALKS. 61 00:02:12,640 --> 00:02:14,400 SO WITH WHAT, IT IS MY 62 00:02:14,400 --> 00:02:16,120 PLEASURE TO INTRODUCE YOU ALL 63 00:02:16,120 --> 00:02:20,720 TO OUR FIRST SPEAKER. 64 00:02:20,720 --> 00:02:24,720 U.K. IKO AS A DA IS A NEW 65 00:02:24,720 --> 00:02:28,840 FACULTY MEMBER HERE IN OUR 66 00:02:28,840 --> 00:02:29,440 DEPARTMENT OF BIOETHICS. 67 00:02:29,440 --> 00:02:31,360 SHE WAS MOST RECENTLY A 68 00:02:31,360 --> 00:02:34,320 PROFESSOR AT THE COMMUNITY 69 00:02:34,320 --> 00:02:37,280 HEALTH AND EPIDEMIOLOGY AT 70 00:02:37,280 --> 00:02:39,360 HALIFAX UNIVERSITY IN HALIFAX, 71 00:02:39,360 --> 00:02:42,080 CANADA AND IS AN EXPERT ON 72 00:02:42,080 --> 00:02:43,840 ISSUES RELATED TO EQUITY 73 00:02:43,840 --> 00:02:45,760 RESEARCH AND SHE IS GOING TO 74 00:02:45,760 --> 00:02:48,760 TALK WITH US ABOUT WHEN OUR 75 00:02:48,760 --> 00:02:49,720 HEALTH INEQUALITY IS UNFAIR. 76 00:02:49,720 --> 00:02:51,680 AND I ALSO WANT TO MENTION 77 00:02:51,680 --> 00:02:56,560 THAT WE'RE GOING TO TAKE TWO 78 00:02:56,560 --> 00:02:58,600 BRIEF RESTS IN HER LECTURE 79 00:02:58,600 --> 00:03:00,440 WHERE WE CAN ASK SOME 80 00:03:00,440 --> 00:03:01,200 CLARIFYING QUESTIONS SO THOSE 81 00:03:01,200 --> 00:03:03,000 OF YOU OUT THERE, REMEMBER YOU 82 00:03:03,000 --> 00:03:04,840 CAN GO TO THE DISCUSSION BOARD 83 00:03:04,840 --> 00:03:07,840 FOR SESSION 4 AND PUT IN 84 00:03:07,840 --> 00:03:11,520 QUESTIONS OR SEND BY E-MAIL TO 85 00:03:11,520 --> 00:03:12,760 THE BIOETHICS INQUIRY E-MAIL 86 00:03:12,760 --> 00:03:15,240 AND WE ALSO HAVE FOLKS HERE IN 87 00:03:15,240 --> 00:03:16,720 THE AUDITORIUM WHO WILL ASK 88 00:03:16,720 --> 00:03:18,640 QUESTIONS. 89 00:03:18,640 --> 00:03:21,560 SO WITH THAT, I WILL HAND IT 90 00:03:21,560 --> 00:03:25,440 OVER TO DOCTOR ASADA WHO IS 91 00:03:25,440 --> 00:03:26,840 JOINING US BY ZOOM TODAY. 92 00:03:26,840 --> 00:03:28,000 >> THANK YOU VERY MUCH, CAN 93 00:03:28,000 --> 00:03:29,760 YOU HEAR ME OKAY? 94 00:03:29,760 --> 00:03:33,560 >>YES, WE CAN HEAR YOU JUST 95 00:03:33,560 --> 00:03:34,720 FINE. 96 00:03:34,720 --> 00:03:36,640 >>SO THANK YOU FOR THAT 97 00:03:36,640 --> 00:03:37,560 INTRODUCTION. 98 00:03:37,560 --> 00:03:48,080 HERE IS MY DISCLAIMER, THE 99 00:03:53,880 --> 00:03:54,920 VIEWS EXPRESSED IN THIS TALK 100 00:03:54,920 --> 00:03:56,560 ARE MY OWN AND DO NOT 101 00:03:56,560 --> 00:03:59,360 REPRESENT THE POSITION OF THE 102 00:03:59,360 --> 00:04:00,160 NIH, DHHS OR U.S. GOVERNMENT 103 00:04:00,160 --> 00:04:03,040 AND I HAVE NO CONFLICTS OF 104 00:04:03,040 --> 00:04:04,800 INTEREST TO DECLARE. 105 00:04:04,800 --> 00:04:13,720 SO MY TALK TODAY WILL BE ABOUT 106 00:04:13,720 --> 00:04:19,480 HEALTH INEQUITY AND BEFORE I 107 00:04:19,480 --> 00:04:22,960 GIVE THIS TALK, IT WILL APPLY 108 00:04:22,960 --> 00:04:26,840 TO OTHER FOCUSES ON HEALTH, 109 00:04:26,840 --> 00:04:28,320 FOR EXAMPLE -- 110 00:04:28,320 --> 00:04:28,760 [INDISCERNIBLE] 111 00:04:28,760 --> 00:04:34,320 THERE ARE A COUPLE OF THINGS I 112 00:04:34,320 --> 00:04:41,680 WISH TO MENTION IN THIS TALK. 113 00:04:41,680 --> 00:04:45,120 HERE IS THE LIST OF EIGHT 114 00:04:45,120 --> 00:04:47,640 TOPICS FOR ETHICAL CLINICAL 115 00:04:47,640 --> 00:04:49,600 RESEARCH WITH WHICH YOU ARE 116 00:04:49,600 --> 00:04:50,840 PROBABLY ALREADY FAMILIAR AND 117 00:04:50,840 --> 00:05:00,560 WE TALKED ABOUT IN THE FIRST S. 118 00:05:00,560 --> 00:05:06,760 ETHICAL PRINCIPLES ARE NOT TO 119 00:05:06,760 --> 00:05:12,400 ADD AND ARE NOT IN THE 120 00:05:12,400 --> 00:05:19,280 TEXTBOOK BUT THEY ARE EQUITY 121 00:05:19,280 --> 00:05:19,840 CONSIDERATIONS MADE. 122 00:05:19,840 --> 00:05:25,280 I BELIEVE AT THE END OF THIS 123 00:05:25,280 --> 00:05:26,520 TALK THAT EQUITY 124 00:05:26,520 --> 00:05:28,240 CONSIDERATIONS ENTER INTO EACH 125 00:05:28,240 --> 00:05:29,880 OF THE EIGHT PRINCIPLES BUT 126 00:05:29,880 --> 00:05:31,240 WITH LIMITED TIME TODAY, I 127 00:05:31,240 --> 00:05:36,920 WILL FOCUS ON THE THREE I HAVE 128 00:05:36,920 --> 00:05:39,960 HIGHLIGHTED ON THE SLIDE. 129 00:05:39,960 --> 00:05:47,400 SO THE FIRST ONE IS TO MAKE 130 00:05:47,400 --> 00:05:55,080 THE EQUITY CONSIDERATION 131 00:05:55,080 --> 00:05:55,480 MEANINGFUL. 132 00:05:55,480 --> 00:05:57,440 I WILL START BY ASKING THREE 133 00:05:57,440 --> 00:05:59,640 QUESTIONS, WHO SHOULD BE IN 134 00:05:59,640 --> 00:06:01,720 THE STUDY AND WHY, HOW IS THE 135 00:06:01,720 --> 00:06:06,880 STUDY FAIR AND WHY AND HOW DO 136 00:06:06,880 --> 00:06:09,320 EQUITY DECISIONS INFLUENCE THE 137 00:06:09,320 --> 00:06:10,320 STUDY DESIGN, ANALYSIS PLAN 138 00:06:10,320 --> 00:06:11,680 AND REPORTING. 139 00:06:11,680 --> 00:06:13,120 THE OTHER THING IS WE ARE NOT 140 00:06:13,120 --> 00:06:15,960 GOING TO GIVE YOU ANSWERS TO 141 00:06:15,960 --> 00:06:18,040 ANY OF THESE QUESTIONS BUT I 142 00:06:18,040 --> 00:06:21,240 HOPE YOU AGREE WITH ME BY THE 143 00:06:21,240 --> 00:06:24,960 END OF THIS TALK BY EXAMINING 144 00:06:24,960 --> 00:06:26,920 THESE QUESTIONS AND THINK 145 00:06:26,920 --> 00:06:28,040 DEEPLY ABOUT ETHICAL 146 00:06:28,040 --> 00:06:28,480 CONSIDERATION. 147 00:06:28,480 --> 00:06:30,240 SO LET ME DIG INTO THE FIRST 148 00:06:30,240 --> 00:06:31,200 QUESTION WHICH IS WHO SHOULD 149 00:06:31,200 --> 00:06:37,680 BE IN THE STUDY AND WHY. 150 00:06:37,680 --> 00:06:41,840 THERE IS A CHANGE IN NORMS 151 00:06:41,840 --> 00:06:43,800 FROM EXCLUSION TO INCLUSION. 152 00:06:43,800 --> 00:06:50,440 THE STUDY USED TO BE FROM 153 00:06:50,440 --> 00:06:52,160 HOMOGENEOUS GROUPS OF PEOPLE 154 00:06:52,160 --> 00:06:56,000 THAT WERE MOSTLY WHITE MIDDLE 155 00:06:56,000 --> 00:06:59,280 AGED MEN. 156 00:06:59,280 --> 00:07:02,160 AND NOW CAN INCLUDE ANYONE AND 157 00:07:02,160 --> 00:07:02,640 EXCLUSION REQUIRES 158 00:07:02,640 --> 00:07:03,280 JUSTIFICATION. 159 00:07:03,280 --> 00:07:05,120 AND FOR EXAMPLE, NIH 160 00:07:05,120 --> 00:07:06,720 GUIDELINES ON INCLUSION OF 161 00:07:06,720 --> 00:07:09,480 WOMEN AND MOTORS AS SUBJECTS 162 00:07:09,480 --> 00:07:11,520 IN CLINICAL RESEARCH AND WE 163 00:07:11,520 --> 00:07:16,280 WILL TALK MORE ABOUT THIS. 164 00:07:16,280 --> 00:07:17,680 THERE IS A FEW DIFFERENT WAYS 165 00:07:17,680 --> 00:07:19,120 TO THINK ABOUT THE QUESTION OF 166 00:07:19,120 --> 00:07:29,560 WHO WILL BE IN THE STUDY, 167 00:07:29,560 --> 00:07:32,680 PARTICIPATION, BIOLOGY AND 168 00:07:32,680 --> 00:07:34,920 SOCIETAL AND I WILL TALK ABOUT 169 00:07:34,920 --> 00:07:35,560 EACH. 170 00:07:35,560 --> 00:07:38,080 THE FIRST IS PARTICIPATION. 171 00:07:38,080 --> 00:07:44,080 THE AUTHORS SEARCHED FOR ALL 172 00:07:44,080 --> 00:07:50,200 CLINICAL TRIALS IN GENERAL ON 173 00:07:50,200 --> 00:07:53,680 RACE AND SEX REPRESENTATION IN 174 00:07:53,680 --> 00:07:56,080 RANDOMIZED CLINICAL TRIALS 175 00:07:56,080 --> 00:07:57,760 BETWEEN 2015 AND 2019. 176 00:07:57,760 --> 00:08:01,280 ABOUT 50 PERCENT OF THESE 177 00:08:01,280 --> 00:08:02,800 STUDIES HAD LESS THAN 178 00:08:02,800 --> 00:08:04,760 15 PERCENT RECORDED AND MORE 179 00:08:04,760 --> 00:08:05,960 THAN 98 PERCENT RECORDED. 180 00:08:05,960 --> 00:08:10,040 THE GRAPH HERE IS A BOX 181 00:08:10,040 --> 00:08:12,880 SHOWING THE LONGEST STUDY 182 00:08:12,880 --> 00:08:15,080 REPORT, RIGHT, AND THE EFFECTS 183 00:08:15,080 --> 00:08:22,360 ON THE RIGHTHAND SIDE. 184 00:08:22,360 --> 00:08:26,920 WHAT IS THE PERSON WHO 185 00:08:26,920 --> 00:08:29,760 PARTICIPATED IN EACH TRIAL. 186 00:08:29,760 --> 00:08:37,040 SO WHEN RACE WAS REPORTED IN 187 00:08:37,040 --> 00:08:44,480 TRIALS, THE RELATION IS -- 188 00:08:44,480 --> 00:08:51,920 [INDISCERNIBLE] 189 00:08:51,920 --> 00:08:57,240 IN THIS COUNTRY AND POINTS OF 190 00:08:57,240 --> 00:09:01,640 CONCERN. 191 00:09:01,640 --> 00:09:03,680 THE OTHER THING TO NOTICE IS 192 00:09:03,680 --> 00:09:05,840 THERE WERE STILL SURPRISINGLY 193 00:09:05,840 --> 00:09:14,080 MORE MALE THAN FEMALE 194 00:09:14,080 --> 00:09:14,640 PARTICIPANTS. 195 00:09:14,640 --> 00:09:16,160 SO THE CONSIDERATION HERE IS 196 00:09:16,160 --> 00:09:18,680 THE FAIR DISTRIBUTION OF 197 00:09:18,680 --> 00:09:20,160 BENEFITS AND BURDEN AND WE 198 00:09:20,160 --> 00:09:21,760 USED TO BE MORE FOCUSING ON 199 00:09:21,760 --> 00:09:24,120 THE BURDEN SIDE AND IT IS 200 00:09:24,120 --> 00:09:24,920 CHANGING TO BENEFITS. 201 00:09:24,920 --> 00:09:26,280 SO WHAT IT MEANS TO 202 00:09:26,280 --> 00:09:28,320 PARTICIPATE IN A STUDY HAS 203 00:09:28,320 --> 00:09:30,760 CHANGED FROM BEARING THE 204 00:09:30,760 --> 00:09:34,520 BURDEN TO ACCEPTING INNOVATION 205 00:09:34,520 --> 00:09:38,800 SO THAT MEANS THAT WE DON'T 206 00:09:38,800 --> 00:09:41,680 WANT TO RESTRICT THE BURDEN 207 00:09:41,680 --> 00:09:44,400 DISTRIBUTION BECAUSE THAT WILL 208 00:09:44,400 --> 00:09:46,800 DENY ACCESS TO INNOVATION. 209 00:09:46,800 --> 00:09:47,960 THE OTHER THING IS THINKING 210 00:09:47,960 --> 00:09:55,880 ABOUT WHO SHOULD BE IN THE 211 00:09:55,880 --> 00:09:57,360 STUDY. 212 00:09:57,360 --> 00:10:05,240 NOW BIOLOGY HAS BEEN TALKED 213 00:10:05,240 --> 00:10:05,920 ABOUT AND PARTICIPATION. 214 00:10:05,920 --> 00:10:12,880 NOW I WILL TALK ABOUT SOCIETAL 215 00:10:12,880 --> 00:10:16,840 CONCERN. 216 00:10:16,840 --> 00:10:20,040 IN THIS EXAMPLE, THE BASICS OF 217 00:10:20,040 --> 00:10:21,760 INTERVENTION STUDIES, X AND Y. 218 00:10:21,760 --> 00:10:25,520 SO FOR EXAMPLE, WE MIGHT 219 00:10:25,520 --> 00:10:27,680 HYPOTHESIZE THAT INCREASED 220 00:10:27,680 --> 00:10:38,240 ACTIVITY LEADS TO INCREASED 221 00:10:44,520 --> 00:10:45,840 BENEFIT. 222 00:10:45,840 --> 00:10:51,280 BUT MAYBE THAT IS NOT TRUE 223 00:10:51,280 --> 00:10:54,320 BECAUSE SAY PHYSICALLY ACTIVE 224 00:10:54,320 --> 00:10:58,600 PEOPLE MAY SMOKE LESS. 225 00:10:58,600 --> 00:11:02,080 SO WE WANT TO INCLUDE TWO 226 00:11:02,080 --> 00:11:03,800 THINGS, WE WANT TO CONTROL 227 00:11:03,800 --> 00:11:07,920 THROUGH THE DESIGN AND 228 00:11:07,920 --> 00:11:11,240 STATISTICALLY RANDOMIZE TO 229 00:11:11,240 --> 00:11:12,360 REDUCE BIAS. 230 00:11:12,360 --> 00:11:22,800 SO THE MORE CHALLENGING 231 00:11:31,920 --> 00:11:33,080 GREATER THE DISTURBANCE IS, 232 00:11:33,080 --> 00:11:37,520 THE MORE CHALLENGING IT IS TO 233 00:11:37,520 --> 00:11:40,800 ESTABLISH CAUSALITY. 234 00:11:40,800 --> 00:11:42,640 AND SIMILAR STUDY SUBJECTS 235 00:11:42,640 --> 00:11:48,040 BRING LESS DISTURBANCE SO THE 236 00:11:48,040 --> 00:11:52,440 ASSUMPTION IS CASS SALT IN 237 00:11:52,440 --> 00:12:03,040 QUESTION X TO Y APPLIES TO ALL 238 00:12:04,960 --> 00:12:07,240 HUMAN BEINGS AND AS AN 239 00:12:07,240 --> 00:12:09,880 EXAMPLE, I WANT TO LOOK AT 240 00:12:09,880 --> 00:12:15,320 CASS ASSAULT IN THE QUESTION X 241 00:12:15,320 --> 00:12:15,720 LEADS TO Y. 242 00:12:15,720 --> 00:12:20,640 THIS IS REPORTED QUITE A BIT 243 00:12:20,640 --> 00:12:21,680 NOW BUT SURPRISINGLY IT IS 244 00:12:21,680 --> 00:12:22,840 DIFFICULT BETWEEN MEN AND 245 00:12:22,840 --> 00:12:23,160 WOMEN. 246 00:12:23,160 --> 00:12:33,680 SO IF WE STUDY ONLY MEN FOR 247 00:12:41,000 --> 00:12:51,480 HEART ATTACK SYMPTOMS, WE GET 248 00:12:52,240 --> 00:13:00,760 X AND THIS ILLUSTRATION SHOWS 249 00:13:00,760 --> 00:13:08,840 THAT THE FEATURES IN CARDIAC 250 00:13:08,840 --> 00:13:10,440 ON DISORDERS MAKES IT CLEAR 251 00:13:10,440 --> 00:13:13,800 THAT MEN AND WOMEN HAVE A 252 00:13:13,800 --> 00:13:16,160 DIFFERENT MECHANISM FOR 253 00:13:16,160 --> 00:13:17,000 CARDIOVASCULAR DISEASE SO THEN 254 00:13:17,000 --> 00:13:22,880 IT IS IMPORTANT TO STUDY OTHER 255 00:13:22,880 --> 00:13:24,040 SUBJECT WOMEN OTHERWISE WE 256 00:13:24,040 --> 00:13:26,400 DON'T KNOW ABOUT IT. 257 00:13:26,400 --> 00:13:29,480 WE COULD ALSO THINK THE 258 00:13:29,480 --> 00:13:32,080 CAUSALITY QUESTION X TO Y MAY 259 00:13:32,080 --> 00:13:34,800 WORK DIFFERENTLY IN DIFFERENT 260 00:13:34,800 --> 00:13:37,000 HUMAN GROUPS BECAUSE -- I AM 261 00:13:37,000 --> 00:13:40,680 SORRY, I SHOULD HAVE SAID, IN 262 00:13:40,680 --> 00:13:42,840 THIS ONE, THERE ARE STILL 263 00:13:42,840 --> 00:13:45,760 BIOLOGICAL DIFFERENCES SO THE 264 00:13:45,760 --> 00:13:55,120 PRIMARY FOCUS HERE IS THE 265 00:13:55,120 --> 00:13:56,000 POTENTIAL DIFFERENTIAL IMPACTS 266 00:13:56,000 --> 00:14:00,960 BETWEEN MEN AND WOMEN AND THEY 267 00:14:00,960 --> 00:14:02,520 ARE STUDIED SEPARATELY. 268 00:14:02,520 --> 00:14:06,840 SO NOW WE LOOK AT X TO Y AND 269 00:14:06,840 --> 00:14:09,040 HOW IT MAY WORK DIFFERENT IN 270 00:14:09,040 --> 00:14:13,280 GROUPS BECAUSE OF HOW WE 271 00:14:13,280 --> 00:14:14,840 ORGANIZE SOCIETY. 272 00:14:14,840 --> 00:14:15,960 AND DIFFERENCE INTERVENTION 273 00:14:15,960 --> 00:14:19,600 EFFECTS BY SOCIAL GROUP 274 00:14:19,600 --> 00:14:20,400 CHARACTERISTICS. 275 00:14:20,400 --> 00:14:29,240 AN EXAMPLE IS THIS STUDY, THE 276 00:14:29,240 --> 00:14:39,760 METAANALYSIS OF TRIALS IN 277 00:14:48,080 --> 00:14:51,640 INDIA, BANGLADESH AND NEPAL 278 00:14:51,640 --> 00:14:53,480 WITH THE COMPARISONS AND 279 00:14:53,480 --> 00:14:55,280 OUTCOMES THAT THEY MAY BE 280 00:14:55,280 --> 00:14:56,880 DIFFERENT THAN THE ORIGINAL 281 00:14:56,880 --> 00:14:57,400 STUDY GROUP. 282 00:14:57,400 --> 00:15:01,120 SO I AM SHOWING YOU THE 283 00:15:01,120 --> 00:15:06,480 POPULATION FROM NEPAL AND THE 284 00:15:06,480 --> 00:15:13,560 INTERVENTION IN WOMEN'S GROUPS 285 00:15:13,560 --> 00:15:15,760 AND COMPARISON WITH OR WITHOUT 286 00:15:15,760 --> 00:15:18,400 THE INTERVENTION AND THE 287 00:15:18,400 --> 00:15:25,720 OUTCOME OF NEONATAL MORTALITY. 288 00:15:25,720 --> 00:15:33,600 MOST WOMEN WERE ILLITERATE AND 289 00:15:33,600 --> 00:15:38,720 POOR FOR MOST MARGINALIZED. 290 00:15:38,720 --> 00:15:47,080 AT THE BEGINNING, THE MOST 291 00:15:47,080 --> 00:15:48,440 MARGINALIZED WOMEN WERE IN 292 00:15:48,440 --> 00:15:51,600 NUMBER 1 AND IN THIS SECTION, 293 00:15:51,600 --> 00:15:53,240 THERE IS A DIFFERENTIAL EFFECT 294 00:15:53,240 --> 00:15:57,720 AND LOOKS LIKE IT WAS ACTUALLY 295 00:15:57,720 --> 00:16:00,040 A GOOD STORY THAT IT WORKED 296 00:16:00,040 --> 00:16:09,640 MORE FOR THE MOST MARGINALIZED 297 00:16:09,640 --> 00:16:10,080 GROUP. 298 00:16:10,080 --> 00:16:12,720 THE NEXT THING TO STUDY IS TO 299 00:16:12,720 --> 00:16:16,160 FOCUS ON THE EXCLUDED GROUP 300 00:16:16,160 --> 00:16:18,720 AND HOW INNOVATION WORKS IN 301 00:16:18,720 --> 00:16:19,520 THE EXCLUDED GROUP. 302 00:16:19,520 --> 00:16:23,520 HERE IS THE EXAMPLE FOCUSING 303 00:16:23,520 --> 00:16:34,080 ON PRIMARY CARE IN PATIENTS 304 00:16:37,880 --> 00:16:40,080 WHERE INTERVENTION IS NOT 305 00:16:40,080 --> 00:16:44,320 PREVALENT IN THEIR LIFESTYLES. 306 00:16:44,320 --> 00:16:47,320 SO THE POPULATION IS THOSE 307 00:16:47,320 --> 00:16:48,800 LOW-INCOME NEIGHBORHOODS, 308 00:16:48,800 --> 00:16:51,920 INTERVENTION IS THE LIFE-STYLE 309 00:16:51,920 --> 00:16:56,600 BASED PROGRAM FOR OBESITY 310 00:16:56,600 --> 00:16:59,200 TREATMENT AND COMPARISON IS 311 00:16:59,200 --> 00:16:59,840 INTENSIVE LIFESTYLE PROGRAM 312 00:16:59,840 --> 00:17:02,160 VERSUS USUAL CARE AND OUTCOME 313 00:17:02,160 --> 00:17:04,760 IS PERCENT IN CHANGE IN BODY 314 00:17:04,760 --> 00:17:08,880 WEIGHT SO YOU HAVE THE 315 00:17:08,880 --> 00:17:10,680 INTENSIVE LIFESTYLE GROUP, THE 316 00:17:10,680 --> 00:17:13,320 USUAL CARE GROUP AND THE 317 00:17:13,320 --> 00:17:17,520 DIFFERENCE IS CLINICALLY 318 00:17:17,520 --> 00:17:18,560 SIGNIFICANT WITH THIS 319 00:17:18,560 --> 00:17:20,080 DIFFERENCE SO THIS STUDY IS 320 00:17:20,080 --> 00:17:23,520 VERY GOOD BECAUSE IT LOOKS AT 321 00:17:23,520 --> 00:17:24,880 THE TRADITIONALLY EXCLUDED 322 00:17:24,880 --> 00:17:33,800 GROUP AND THEY WENT FURTHER 323 00:17:33,800 --> 00:17:35,280 SHOWING THE INTERVENTION WHICH 324 00:17:35,280 --> 00:17:39,240 LED TO GREATER CHANGE IN 325 00:17:39,240 --> 00:17:40,800 WEIGHT SO THEN YOU HAVE THE 326 00:17:40,800 --> 00:17:48,320 SOLID LINE AND THE DOTTED LINE 327 00:17:48,320 --> 00:17:50,560 BUT THE INTERVENTION IS 328 00:17:50,560 --> 00:17:54,160 BROADER IN BLACKS THAN OTHER 329 00:17:54,160 --> 00:17:54,560 RACE. 330 00:17:54,560 --> 00:18:00,040 SO THE PRIMARY INTEREST HERE 331 00:18:00,040 --> 00:18:10,640 IS THE EFFECTS OF THE PROGRAM 332 00:18:13,560 --> 00:18:14,000 FOR INTERVENTION. 333 00:18:14,000 --> 00:18:16,200 NOW, I HAVE BEEN WORKING IN 334 00:18:16,200 --> 00:18:18,200 THE FIELD QUITE A BIT, QUITE 335 00:18:18,200 --> 00:18:21,720 LONG TIME BUT THE TERMINOLOGY 336 00:18:21,720 --> 00:18:22,480 IS OFTEN CONFUSING. 337 00:18:22,480 --> 00:18:25,720 PEOPLE USED TO THINK OF THEM 338 00:18:25,720 --> 00:18:27,240 DIFFERENTLY AND IT IS GOOD 339 00:18:27,240 --> 00:18:30,640 IDEA TO BE CLEAR ABOUT WHAT 340 00:18:30,640 --> 00:18:32,000 WE'RE TALKING ABOUT. 341 00:18:32,000 --> 00:18:37,320 AND HERE IS THE DEFINITION OF 342 00:18:37,320 --> 00:18:38,200 GENERALLY WHAT IS SUPPORTED IN 343 00:18:38,200 --> 00:18:39,080 THE FIELD. 344 00:18:39,080 --> 00:18:45,520 SO WHEN WE SAY HEALTH 345 00:18:45,520 --> 00:18:47,240 INEQUALITY, WE MEAN THE 346 00:18:47,240 --> 00:18:49,040 DIFFERENCES OR VARIATIONS IN 347 00:18:49,040 --> 00:18:49,720 HEALTH ACROSS INDIVIDUALS OR 348 00:18:49,720 --> 00:18:51,880 GROUPS AND THERE IS NO ETHICAL 349 00:18:51,880 --> 00:18:52,480 JUDGMENT. 350 00:18:52,480 --> 00:18:56,080 BUT WHEN WE SAY HEALTH 351 00:18:56,080 --> 00:18:58,840 INEQUITY, THAT MEANS 352 00:18:58,840 --> 00:19:00,800 INEQUALITIES IN HEALTH ACROSS 353 00:19:00,800 --> 00:19:03,480 INDIVIDUALS AND/OR GROUPS THAT 354 00:19:03,480 --> 00:19:07,000 WE JUDGE ETHICALLY PROBLEMATIC 355 00:19:07,000 --> 00:19:12,800 AND UNFAIR. 356 00:19:12,800 --> 00:19:17,880 THERE ARE DIFFERENT STUDIES ON 357 00:19:17,880 --> 00:19:21,200 HEALTH INEQUALITY THAT WE WILL 358 00:19:21,200 --> 00:19:22,000 TALK ABOUT. 359 00:19:22,000 --> 00:19:25,000 AND HERE IS ANOTHER TERM, 360 00:19:25,000 --> 00:19:26,480 HEALTH DISPARITY WHICH IS USED 361 00:19:26,480 --> 00:19:27,960 QUITE A LOT IN THE UNITED 362 00:19:27,960 --> 00:19:28,440 STATES. 363 00:19:28,440 --> 00:19:32,880 NOT SO MUCH OUTSIDE THE UNITED 364 00:19:32,880 --> 00:19:33,200 STATES. 365 00:19:33,200 --> 00:19:37,680 AND FOR A LONG TIME, THE 366 00:19:37,680 --> 00:19:44,080 HEALTH DISPARITY IS UNDERSTOOD 367 00:19:44,080 --> 00:19:46,280 AS HEALTH INEQUALITY BUT AS WE 368 00:19:46,280 --> 00:19:56,840 THINK ABOUT IT MORE, PEOPLE 369 00:19:58,320 --> 00:20:03,080 START TO THINK OF IT 370 00:20:03,080 --> 00:20:03,480 DIFFERENTLY. 371 00:20:03,480 --> 00:20:05,200 SO WE HAVE THE SAME WAYS TO 372 00:20:05,200 --> 00:20:13,560 THINK ABOUT WHO SHOULD BE IN A 373 00:20:13,560 --> 00:20:23,600 STUDY AND THE PRIME BIOLOGY 374 00:20:23,600 --> 00:20:24,280 AND SOCIETAL CONCERN. 375 00:20:24,280 --> 00:20:27,760 SO WE POSE THE QUESTION WHO 376 00:20:27,760 --> 00:20:32,800 SHOULD BE IN THE STUDY AND 377 00:20:32,800 --> 00:20:33,080 WHY. 378 00:20:33,080 --> 00:20:36,920 I WILL PAUSE HERE AND HOLLY IF 379 00:20:36,920 --> 00:20:43,200 YOU COULD HELP ME FIELD THE 380 00:20:43,200 --> 00:20:43,560 QUESTIONS. 381 00:20:43,560 --> 00:20:44,480 >>ANY QUESTIONS FROM THE 382 00:20:44,480 --> 00:20:44,760 ROOM? 383 00:20:44,760 --> 00:20:46,120 NO QUESTIONS FROM THE ROOM. 384 00:20:46,120 --> 00:20:47,760 NOW I WILL CHECK AND SEE IF WE 385 00:20:47,760 --> 00:20:50,160 HAVE ANY FROM THE STUDENTS. 386 00:20:50,160 --> 00:20:54,160 AS A REMINDER, YOU CAN PUT 387 00:20:54,160 --> 00:20:58,360 YOUR QUESTIONS ON THE SECTION 388 00:20:58,360 --> 00:20:59,160 FOR SUBSTANTIVE QUESTIONS 389 00:20:59,160 --> 00:21:06,280 DISCUSSION BOARD OR SEND AN 390 00:21:06,280 --> 00:21:07,120 E-MAIL TO BIOETHICSINQUIRY. 391 00:21:07,120 --> 00:21:09,240 THERE IS SOMETIMES A BIT OF A 392 00:21:09,240 --> 00:21:10,920 DELAY IN GETTING QUESTIONS SO 393 00:21:10,920 --> 00:21:13,480 I DON'T SEE ANY NOW BUT 394 00:21:13,480 --> 00:21:15,360 EVERYONE IS NOW REMINDED THAT 395 00:21:15,360 --> 00:21:17,160 THEY CAN BE PUTTING QUESTIONS 396 00:21:17,160 --> 00:21:23,440 IN AS YOU GO AND WE CAN 397 00:21:23,440 --> 00:21:25,680 PERHAPS DO SOMETHING FOR 398 00:21:25,680 --> 00:21:26,880 CLARITY LATER. 399 00:21:26,880 --> 00:21:27,800 >>OKAY, CORRECT, NOW I WILL 400 00:21:27,800 --> 00:21:37,880 MOVE ON TO THE SECOND 401 00:21:37,880 --> 00:21:39,600 QUESTION, WHO SHOULD BE IN THE 402 00:21:39,600 --> 00:21:48,880 STUDY AND WHY. WHICH HEALTH 403 00:21:48,880 --> 00:21:51,560 INEQUITIES AND WHY. 404 00:21:51,560 --> 00:21:53,680 SO LET'S THINK FURTHER TO 405 00:21:53,680 --> 00:21:57,520 INCLUDE DIVERSE STUDY SUBJECTS 406 00:21:57,520 --> 00:21:58,640 FOR SOCIETAL CONCERN. 407 00:21:58,640 --> 00:21:59,800 THERE ARE MANY GROUPS 408 00:21:59,800 --> 00:22:02,000 SUGGESTED AND HERE ARE SOME 409 00:22:02,000 --> 00:22:02,360 EXAMPLES. 410 00:22:02,360 --> 00:22:05,600 SO AS I ALREADY MENTIONED, NIH 411 00:22:05,600 --> 00:22:07,880 GUIDELINES ON INCLUSION OF 412 00:22:07,880 --> 00:22:11,040 WOMEN AND MINORITIES AS 413 00:22:11,040 --> 00:22:13,800 SUBJECTS IN CLINICAL RESEARCH. 414 00:22:13,800 --> 00:22:16,200 THERE A MINORITY GROUP IS 415 00:22:16,200 --> 00:22:18,280 DEFINED AS A READY 416 00:22:18,280 --> 00:22:19,560 IDENTIFIABLE SUBSET OF THE 417 00:22:19,560 --> 00:22:21,520 U.S. POPULATION WHICH IS 418 00:22:21,520 --> 00:22:23,720 DISTINGUISHED BY EITHER 419 00:22:23,720 --> 00:22:27,800 RACIAL, ETHNIC AND/OR CULTURAL 420 00:22:27,800 --> 00:22:28,600 HERITAGE. 421 00:22:28,600 --> 00:22:32,800 THE OTHER WAY MANY PEOPLE 422 00:22:32,800 --> 00:22:34,560 THINK IS PROGRESS-PLUS WHICH 423 00:22:34,560 --> 00:22:40,880 IS THE ACRONYM OF PLACE OF 424 00:22:40,880 --> 00:22:48,400 RESIDENTS, RACE AND ETHNICITY, 425 00:22:48,400 --> 00:22:50,440 CULTURE, LANGUAGE, OCCUPATION, 426 00:22:50,440 --> 00:22:54,840 GENDER OR SEX, RELIGION, 427 00:22:54,840 --> 00:22:55,640 EDUCATION, SOCIOECONOMIC 428 00:22:55,640 --> 00:22:59,280 STATUS, SOCIAL CAPITAL AND 429 00:22:59,280 --> 00:23:00,440 ADDITIONAL CONTEXT-SPECIFIC 430 00:23:00,440 --> 00:23:06,760 PERSONAL OR SETTING 431 00:23:06,760 --> 00:23:07,240 CHARACTERISTICS. 432 00:23:07,240 --> 00:23:11,400 THIS PROGRAM WAS LOOKED AT IN 433 00:23:11,400 --> 00:23:14,240 2017 AND THEY MADE SOME 434 00:23:14,240 --> 00:23:18,240 CHANGES TO THE FRAMEWORK FOR 435 00:23:18,240 --> 00:23:21,200 PARITY IN HEALTH EQUITY. 436 00:23:21,200 --> 00:23:25,520 AND YOU MIGHT WONDER WHAT IS 437 00:23:25,520 --> 00:23:27,800 THE LAST THING, AND THAT IS 438 00:23:27,800 --> 00:23:34,040 LIKE DISABILITY OR SEXUAL 439 00:23:34,040 --> 00:23:40,120 ORIENTATION OR MIGRATION FOR 440 00:23:40,120 --> 00:23:43,240 REFUGEE STATUS, THE BIVARIATE 441 00:23:43,240 --> 00:23:45,040 APPROACH TO THE STUDY. 442 00:23:45,040 --> 00:23:50,400 SO THERE ARE DIFFERENT WAYS OF 443 00:23:50,400 --> 00:23:53,800 SUGGESTING PEOPLE BE SUBJECTS 444 00:23:53,800 --> 00:23:56,120 AND WHEN I THINK OF 445 00:23:56,120 --> 00:23:59,600 DIFFERENCES, I THINK OF WHAT 446 00:23:59,600 --> 00:24:00,680 WE ARE TYPICALLY THINKING SO 447 00:24:00,680 --> 00:24:06,440 THERE IS HEALTH AND THEN THERE 448 00:24:06,440 --> 00:24:09,680 IS OTHER ATTRIBUTES OR THINGS 449 00:24:09,680 --> 00:24:12,640 WE'RE WORRIED ABOUT, LIKE 450 00:24:12,640 --> 00:24:15,040 INCOME AND EDUCATION AND THEN 451 00:24:15,040 --> 00:24:16,280 WE HAVE SEPARATE AND 452 00:24:16,280 --> 00:24:19,360 INTERESTED IN WHAT ARE 453 00:24:19,360 --> 00:24:21,320 DIFFERENT DIFFERENT LEVELS OF 454 00:24:21,320 --> 00:24:21,720 HEALTH. 455 00:24:21,720 --> 00:24:24,160 SO THIS IS THE WAY WE OFTEN 456 00:24:24,160 --> 00:24:28,440 THINK BUT THERE ARE SOME 457 00:24:28,440 --> 00:24:30,720 CHALLENGES FOR THIS APPROACH. 458 00:24:30,720 --> 00:24:32,800 FIRST AN INCREASING NUMBER OF 459 00:24:32,800 --> 00:24:35,560 GROUPS IDENTIFY AS IMPORTANT. 460 00:24:35,560 --> 00:24:37,040 NOTHING WRONG ABOUT IT BUT THE 461 00:24:37,040 --> 00:24:39,920 NUMBER HAS BEEN MORE AND MORE. 462 00:24:39,920 --> 00:24:41,960 AND THEN OFTENTIMES WITHIN 463 00:24:41,960 --> 00:24:46,760 GROUP VARIATION AND 464 00:24:46,760 --> 00:24:48,240 INTERSECTIONALITY ARE OFTEN 465 00:24:48,240 --> 00:24:48,680 OVERLOOKED. 466 00:24:48,680 --> 00:24:54,840 SO IN THE GRAPH I SHOWED YOU, 467 00:24:54,840 --> 00:24:58,320 EVERYBODY HAS THE SAME HEALTH 468 00:24:58,320 --> 00:25:00,280 BUT THE DATA SHOWS WITHIN THE 469 00:25:00,280 --> 00:25:05,360 GROUP THERE IS SOME UNDERLYING 470 00:25:05,360 --> 00:25:06,120 OBSERVATION. 471 00:25:06,120 --> 00:25:11,880 AND CONCERNS FOR INTERSECTIONA 472 00:25:11,880 --> 00:25:13,840 LITY, WE WANT TO LOOK AT 473 00:25:13,840 --> 00:25:16,120 VARIATION AND WE SAY WELL, IT 474 00:25:16,120 --> 00:25:24,680 IS NOT ENOUGH SO WE WANT TO 475 00:25:24,680 --> 00:25:28,240 INCREASE THE NUMBER OF GROUPS. 476 00:25:28,240 --> 00:25:30,080 AND ANOTHER INTERESTING ISSUE 477 00:25:30,080 --> 00:25:32,600 IS THE GROUP DEFINITION ITSELF 478 00:25:32,600 --> 00:25:33,440 CAN CHANGE. 479 00:25:33,440 --> 00:25:36,440 A GOOD EXAMPLE IS SEX. 480 00:25:36,440 --> 00:25:40,560 IT USED TO BE THAT WE LOOKED 481 00:25:40,560 --> 00:25:43,280 AT BINARY SEX BUT NOW WE ARE 482 00:25:43,280 --> 00:25:48,560 LOOKING AT OTHER VARIABLES. 483 00:25:48,560 --> 00:25:50,440 AND THEN I THINK A REALLY 484 00:25:50,440 --> 00:25:52,080 IMPORTANT POINT IS THE REASONS 485 00:25:52,080 --> 00:25:56,600 WHY THE SELECTED GROUP 486 00:25:56,600 --> 00:25:58,440 CHARACTERISTIC SIGNIFY 487 00:25:58,440 --> 00:26:01,080 CONCERNS FOR UNFAIRNESS AND 488 00:26:01,080 --> 00:26:03,280 INEQUALITY ARE OFTEN INTUITIVE 489 00:26:03,280 --> 00:26:03,720 AND IMPLICIT. 490 00:26:03,720 --> 00:26:12,960 SO THERE IS NO ARTICULATION OF 491 00:26:12,960 --> 00:26:15,120 UNFAIRNESS, IT IS JUST A THING 492 00:26:15,120 --> 00:26:16,400 WHERE WE THINK IT IS WRONG SO 493 00:26:16,400 --> 00:26:18,800 IT IS WRONG AND WE DON'T NEED 494 00:26:18,800 --> 00:26:23,840 TO EXPLAIN BECAUSE IT IS 495 00:26:23,840 --> 00:26:24,160 WRONG. 496 00:26:24,160 --> 00:26:31,360 AND DOING THAT, WE EXCLUDE 497 00:26:31,360 --> 00:26:33,280 MANY BITS OF INFORMATION TO 498 00:26:33,280 --> 00:26:36,160 LACK A COHERENT PICTURE. 499 00:26:36,160 --> 00:26:40,120 SO FOR EXAMPLE, IF SOMEBODY 500 00:26:40,120 --> 00:26:44,120 ASKS, WHICH WE ASK A LOT, HOW 501 00:26:44,120 --> 00:26:46,600 WE CAN DO BETTER WITH HEALTH 502 00:26:46,600 --> 00:26:53,160 EQUITY AND IT IS DIFFICULT TO 503 00:26:53,160 --> 00:26:56,640 EXPLAIN BECAUSE WE MISS MANY 504 00:26:56,640 --> 00:26:58,600 BITS OF INFORMATION AND THEN 505 00:26:58,600 --> 00:27:03,560 MISS OUT ON A WAY TO HAVE A 506 00:27:03,560 --> 00:27:05,200 MORE COHERENT PICTURE. 507 00:27:05,200 --> 00:27:12,920 SO WHAT IS THE CHALLENGES OF 508 00:27:12,920 --> 00:27:13,800 THE BIVARIATE APPROACH? 509 00:27:13,800 --> 00:27:22,240 YOU CAN SEE WE HAVE ON THE 510 00:27:22,240 --> 00:27:31,840 LEFT, THE ATTRIBUTE BIVARIATE 511 00:27:31,840 --> 00:27:32,960 GROUP. 512 00:27:32,960 --> 00:27:35,440 YOU CAN SEE THE HORIZONTAL IS 513 00:27:35,440 --> 00:27:38,280 HEALTHY AND NOT HEALTHY AND 514 00:27:38,280 --> 00:27:44,560 THEN THE VERTICAL IS THE 515 00:27:44,560 --> 00:27:46,200 DISTRIBUTION AND INTERESTINGLY 516 00:27:46,200 --> 00:27:56,760 INDIVIDUAL EFFORTS IS OFTEN 517 00:27:57,160 --> 00:28:04,040 HERE IN THE PUBLIC HEALTH WAY 518 00:28:04,040 --> 00:28:06,440 OF THINKING, AND BETWEEN THE 519 00:28:06,440 --> 00:28:12,840 HEALTH AND AT ATTRIBUTE, THEY 520 00:28:12,840 --> 00:28:16,680 DON'T OFTEN TALK TO EACH 521 00:28:16,680 --> 00:28:17,120 OTHER. 522 00:28:17,120 --> 00:28:20,520 SO THE INTERESTING QUESTION IS 523 00:28:20,520 --> 00:28:28,400 ARE WE GIVING ACCESS TO THE 524 00:28:28,400 --> 00:28:30,480 BIVARIATE GROUP AND IS IT 525 00:28:30,480 --> 00:28:31,040 UNFAIR? 526 00:28:31,040 --> 00:28:32,640 SOME PEOPLE SAY YES. 527 00:28:32,640 --> 00:28:35,280 BUT MANY SAY NO, THAT ONLY 528 00:28:35,280 --> 00:28:37,360 PART OF INEQUALITY IS UNFAIR. 529 00:28:37,360 --> 00:28:41,040 SO THERE IS A PHILOSOPHY AND 530 00:28:41,040 --> 00:28:45,720 DIFFERENT VIEWS, OF COURSE AND 531 00:28:45,720 --> 00:28:49,120 I JUST SELECTED ONE. 532 00:28:49,120 --> 00:28:59,600 SO EQUAL OPPORTUNITY FOR 533 00:29:05,400 --> 00:29:06,600 HEALTH AND INEQUALITIES ARE 534 00:29:06,600 --> 00:29:09,800 DUE TO FACTORS BEYOND THE 535 00:29:09,800 --> 00:29:13,160 INDIVIDUAL CONTROL THAT ARE 536 00:29:13,160 --> 00:29:15,720 UNFAIR. 537 00:29:15,720 --> 00:29:19,360 SO POLICY AMENABILITY, THAT 538 00:29:19,360 --> 00:29:22,680 HEALTH INEQUALITIES DUE TO 539 00:29:22,680 --> 00:29:28,840 FACTORS AMENABLE TO POLICY 540 00:29:28,840 --> 00:29:31,520 INTERVENTIONS ARE UNFAIR. 541 00:29:31,520 --> 00:29:41,960 REIMMEDIATEABILITY AND 542 00:29:44,560 --> 00:29:51,440 COMPENSABILITY HEALTH 543 00:29:51,440 --> 00:29:52,680 INEQUITIES ARE UNFAIR. 544 00:29:52,680 --> 00:29:55,520 AND THEN FAIR DISTRIBUTION OF 545 00:29:55,520 --> 00:29:59,280 SOCIAL DETERMINANTS OF HEALTH, 546 00:29:59,280 --> 00:30:09,040 FOR EXAMPLE, EDUCATION. 547 00:30:09,040 --> 00:30:11,880 AND IF HEALTH EFFICIENCY IS 548 00:30:11,880 --> 00:30:18,800 ADDRESSED, THIS COULD MAKE A 549 00:30:18,800 --> 00:30:21,520 DIFFERENCE AND THEN THERE IS 550 00:30:21,520 --> 00:30:30,440 GETTING EXTRA INCOME BY 551 00:30:30,440 --> 00:30:34,040 COMPENSATION WHEN HEALTH 552 00:30:34,040 --> 00:30:34,640 INEQUALITIES ARE UNFAIR. 553 00:30:34,640 --> 00:30:36,960 SO THERE IS A MEDICINE WE 554 00:30:36,960 --> 00:30:40,480 COULD HAVE DONE BUT THEN WE 555 00:30:40,480 --> 00:30:41,960 DIDN'T AND THIS HEALTH 556 00:30:41,960 --> 00:30:44,400 EFFICIENCY, THERE IS NO WAY WE 557 00:30:44,400 --> 00:30:46,160 CAN COMPENSATE BY OTHER 558 00:30:46,160 --> 00:30:49,840 GROUPS, LIKE GIVING A LOT OF 559 00:30:49,840 --> 00:30:53,600 INCOME DOESN'T HELP FOR 560 00:30:53,600 --> 00:31:03,840 EXAMPLE. 561 00:31:04,720 --> 00:31:12,360 REALLY EXCRUCIATING PAIN, SAY. 562 00:31:12,360 --> 00:31:15,240 SO THE SOCIAL DETERMINANTS OF 563 00:31:15,240 --> 00:31:16,840 HEALTH ARE DISTRIBUTING 564 00:31:16,840 --> 00:31:20,800 UNFAIRLY BECAUSE THE HEALTH 565 00:31:20,800 --> 00:31:21,600 INEQUALITIES ARE UNFAIR. 566 00:31:21,600 --> 00:31:23,800 SO THESE ARE THE VIEWS AND 567 00:31:23,800 --> 00:31:29,840 THERE ARE MANY MORE AND THERE 568 00:31:29,840 --> 00:31:33,880 IS ALWAYS DISAGREEMENT BETWEEN 569 00:31:33,880 --> 00:31:39,960 THESE HERE. 570 00:31:39,960 --> 00:31:42,080 SO THEN WHAT'S THE POINT? 571 00:31:42,080 --> 00:31:46,280 THEY DON'T AGREE, THEY DON'T 572 00:31:46,280 --> 00:31:49,760 HELP US, AND IN THE STUDY THE 573 00:31:49,760 --> 00:32:00,360 VITAL CONCERN HAS GONE BY FROM 574 00:32:08,680 --> 00:32:09,160 THE UNETHICAL NATURE. 575 00:32:09,160 --> 00:32:11,880 SO IT IS IMPORTANT TO INCLUDE 576 00:32:11,880 --> 00:32:15,600 TWERS STUDY SUBJECTS FOR 577 00:32:15,600 --> 00:32:18,880 SOCIETAL CONCERN INFORMED BY 578 00:32:18,880 --> 00:32:19,920 PHILOSOPHICAL LITERATURE AND 579 00:32:19,920 --> 00:32:28,480 HERE IS A GRAPHIC DEFINITION. 580 00:32:28,480 --> 00:32:33,560 SO WE HAVE SOCIAL GROUPS WE 581 00:32:33,560 --> 00:32:35,960 CONSIDER AND JUST FOCUS ON 582 00:32:35,960 --> 00:32:38,120 THAT BUT ACTUALLY THERE IS AN 583 00:32:38,120 --> 00:32:39,440 UNDERLYING THEORY WHY IT IS 584 00:32:39,440 --> 00:32:39,800 IMPORTANT. 585 00:32:39,800 --> 00:32:41,360 THERE IS A REASON WHY WE WANT 586 00:32:41,360 --> 00:32:44,000 TO FOCUS ON SOCIAL GROUPS AND 587 00:32:44,000 --> 00:32:46,760 IF WE ARE CLEAR AND KNOW A BIT 588 00:32:46,760 --> 00:32:48,280 ABOUT THE UNDERLYING THEORY, 589 00:32:48,280 --> 00:32:50,520 THEN WE CAN SAY MORE ABOUT 590 00:32:50,520 --> 00:32:52,400 WHICH ONE MIGHT BE MORE 591 00:32:52,400 --> 00:32:55,120 IMPORTANT, HOW THEY RELATE TO 592 00:32:55,120 --> 00:32:57,040 EACH OTHER AND FOR THOSE 593 00:32:57,040 --> 00:33:01,720 QUESTIONS WE HAVE BETTER 594 00:33:01,720 --> 00:33:04,200 KNOWLEDGE AND UNDERSTANDING. 595 00:33:04,200 --> 00:33:12,080 SO THIS IS THE END OF THE 596 00:33:12,080 --> 00:33:14,360 SECOND QUESTION AND I DID NOT 597 00:33:14,360 --> 00:33:16,680 PROVIDE THE ANSWER TO THE 598 00:33:16,680 --> 00:33:19,840 QUESTION OF WHAT IS UNFAIR, 599 00:33:19,840 --> 00:33:21,720 ACTUALLY, I GAVE MANY ANSWERS 600 00:33:21,720 --> 00:33:29,480 BUT HOPE I CONVEYED THE 601 00:33:29,480 --> 00:33:30,640 TECHNICAL GOOD. 602 00:33:30,640 --> 00:33:32,360 SO HERE IS ANOTHER PLACE TO 603 00:33:32,360 --> 00:33:33,880 PAUSE FOR A QUESTION. 604 00:33:33,880 --> 00:33:35,800 >>AND I ACTUALLY HAVE A 605 00:33:35,800 --> 00:33:36,560 QUESTION FROM BRENDA. 606 00:33:36,560 --> 00:33:38,840 SO ON A PREVIOUS SLIDE YOU 607 00:33:38,840 --> 00:33:40,680 TALKED ABOUT EQUITY AND 608 00:33:40,680 --> 00:33:43,760 EQUALITY AND NOT SURPRISING, 609 00:33:43,760 --> 00:33:47,160 PERHAPS, SHE WOULD LIKE YOU TO 610 00:33:47,160 --> 00:33:48,760 EXPLAIN THE DIFFERENCE AT 611 00:33:48,760 --> 00:33:52,880 LEAST ONE MORE TIME, WHAT IS 612 00:33:52,880 --> 00:33:54,480 THE DIFFERENCE BETWEEN THE 613 00:33:54,480 --> 00:33:56,760 QUALITY AND EQUITY OR, I THINK 614 00:33:56,760 --> 00:34:01,360 THE TERMS YOU USED WERE 615 00:34:01,360 --> 00:34:03,640 INEQUALITY AND INEQUITY. 616 00:34:03,640 --> 00:34:11,960 >>OKAY, SO I WILL SPEND A BIT 617 00:34:11,960 --> 00:34:16,040 MORE TIME BECAUSE I DIDN'T 618 00:34:16,040 --> 00:34:20,920 TALK ABOUT INEQUALITY AND 619 00:34:20,920 --> 00:34:21,320 INEQUITY -- 620 00:34:21,320 --> 00:34:22,400 >>RIGHT, INTENTIONALLY. 621 00:34:22,400 --> 00:34:22,960 >>INTENTIONALLY. 622 00:34:22,960 --> 00:34:28,440 SO NOT ALL EQUALITY IS 623 00:34:28,440 --> 00:34:28,920 EQUITABLE. 624 00:34:28,920 --> 00:34:31,520 THE REASON IS IF YOU THINK WE 625 00:34:31,520 --> 00:34:33,800 ARE JUST FOCUSING ON HEALTH, 626 00:34:33,800 --> 00:34:35,920 IF A GENOCIDE HAPPENS, 627 00:34:35,920 --> 00:34:39,520 EVERYBODY IS DEAD AND IF YOU 628 00:34:39,520 --> 00:34:42,240 ARE CONSIDERED DEAD AS A 629 00:34:42,240 --> 00:34:43,840 HEALTH INCOME, THERE IS 630 00:34:43,840 --> 00:34:45,520 EQUALITY. 631 00:34:45,520 --> 00:34:48,120 BUT YOU WOULDN'T SAY THAT'S A 632 00:34:48,120 --> 00:34:48,560 GOOD OUTCOME. 633 00:34:48,560 --> 00:34:52,240 THAT IS NOT EQUITY, RIGHT? 634 00:34:52,240 --> 00:34:52,560 >>YEP. 635 00:34:52,560 --> 00:35:02,960 >>SO THAT IS WHY I 636 00:35:04,400 --> 00:35:10,520 DISTINGUISH BETWEEN EQUITY AND 637 00:35:10,520 --> 00:35:11,920 INEQUALITY. 638 00:35:11,920 --> 00:35:15,120 BUT YOU MIGHT SAY HEALTH 639 00:35:15,120 --> 00:35:15,920 INEQUALITY INCLUDES 640 00:35:15,920 --> 00:35:18,600 DIFFERENCES IN VARIATIONS IN 641 00:35:18,600 --> 00:35:21,000 HEALTH ACROSS INDIVIDUALS OR 642 00:35:21,000 --> 00:35:21,600 GROUPS. 643 00:35:21,600 --> 00:35:25,000 LIKE HOWE TALL THE TREES ARE, 644 00:35:25,000 --> 00:35:29,440 IF THEY HAVE MOUNTAINS AND 645 00:35:29,440 --> 00:35:32,680 YOU ARE STILL NOT MAKING ANY 646 00:35:32,680 --> 00:35:35,120 ETHICAL JUDGMENT, THEN YOU SAY 647 00:35:35,120 --> 00:35:37,240 WHICH ONE IS NO GOOD AND THE 648 00:35:37,240 --> 00:35:39,840 REASON WE SAY IT IS NO GOOD IS 649 00:35:39,840 --> 00:35:42,040 BECAUSE OF ETHICAL CONCERNS. 650 00:35:42,040 --> 00:35:45,760 AND WHEN WE IDENTIFY THIS 651 00:35:45,760 --> 00:35:46,800 PARTICULAR INEQUALITY IS WRONG 652 00:35:46,800 --> 00:35:49,320 BECAUSE OF THE ETHICAL 653 00:35:49,320 --> 00:35:52,920 CONSIDERATION, THEN YOU ARE 654 00:35:52,920 --> 00:35:53,720 TALKING ABOUT INEQUALITY. 655 00:35:53,720 --> 00:35:55,680 >>GREAT, AND I ALSO WANT TO 656 00:35:55,680 --> 00:35:58,640 REITERATE A POINT THAT YOU 657 00:35:58,640 --> 00:36:01,080 MADE EARLIER THAT HEALTH 658 00:36:01,080 --> 00:36:03,560 INEQUITIES ARE A SUBJECT OF 659 00:36:03,560 --> 00:36:04,600 HEALTH INEQUALITIES. 660 00:36:04,600 --> 00:36:07,200 SO IF YOU THINK OF, YOU KNOW, 661 00:36:07,200 --> 00:36:08,840 A LARGE CIRCLE, YOU MIGHT BE 662 00:36:08,840 --> 00:36:10,320 ABLE TO IDENTIFY, RIGHT, ALL 663 00:36:10,320 --> 00:36:11,320 THE MOUNTAINS THAT ARE 664 00:36:11,320 --> 00:36:12,960 DIFFERENT OR ALL THE TREES 665 00:36:12,960 --> 00:36:13,760 THAT ARE DIFFERENT. 666 00:36:13,760 --> 00:36:17,600 BUT THEN YOU MIGHT HAVE A 667 00:36:17,600 --> 00:36:19,200 SMALLER CIRCLE OF THE 668 00:36:19,200 --> 00:36:20,360 DIFFERENCES THAT ARE 669 00:36:20,360 --> 00:36:21,120 INEQUITABLE. 670 00:36:21,120 --> 00:36:23,080 SO FOR EXAMPLE, HERE IN THE 671 00:36:23,080 --> 00:36:25,040 UNITED STATES IN WEST 672 00:36:25,040 --> 00:36:27,000 VIRGINIA, THEY BLOW OFF THE 673 00:36:27,000 --> 00:36:30,200 TOPS OF MOUNTAINS TO MINE FOR 674 00:36:30,200 --> 00:36:30,880 COAL. 675 00:36:30,880 --> 00:36:31,240 [LAUGHTER] 676 00:36:31,240 --> 00:36:33,080 SO WE MIGHT SAY IT WAS UNFAIR 677 00:36:33,080 --> 00:36:35,480 TO BLOW THE STOPS OFF THAT 678 00:36:35,480 --> 00:36:38,880 SUBSET OF MOUNTAINS IN WEST 679 00:36:38,880 --> 00:36:40,440 VIRGINIA BECAUSE THEY ARE NO 680 00:36:40,440 --> 00:36:42,040 LONGER, YOU KNOW, THE SAME AS 681 00:36:42,040 --> 00:36:44,800 THEY WERE BEFORE, FOR EXAMPLE. 682 00:36:44,800 --> 00:36:46,960 AND YOU COULD HAVE LEFT THEM 683 00:36:46,960 --> 00:36:50,160 THAT WAY SO IT IS PROBLEMATIC 684 00:36:50,160 --> 00:36:53,840 IN THAT WE, MAN, HUMANKIND, 685 00:36:53,840 --> 00:36:57,480 TOOK AN ACTION THAT LED TO AN 686 00:36:57,480 --> 00:36:59,680 INEQUITY AMONG THE MOUNTAINS. 687 00:36:59,680 --> 00:37:02,040 >> YES, THAT IS AN EXCELLENT 688 00:37:02,040 --> 00:37:02,440 EXAMPLE. 689 00:37:02,440 --> 00:37:07,760 AND THEN MAYBE I WILL ADD THAT 690 00:37:07,760 --> 00:37:10,480 NOT ALL INEQUALITY IS MORALLY 691 00:37:10,480 --> 00:37:12,040 BAD, RIGHT? 692 00:37:12,040 --> 00:37:15,960 >>RIGHT. 693 00:37:15,960 --> 00:37:21,200 >>SO SOME PEOPLE SAY IT'S 694 00:37:21,200 --> 00:37:24,080 GOING BEYOND HEALTH BUT 695 00:37:24,080 --> 00:37:26,120 INEQUALITY THEY SAY IS BAD BUT 696 00:37:26,120 --> 00:37:27,840 THEN SOME PEOPLE SAY WE MIGHT 697 00:37:27,840 --> 00:37:31,520 WANT TO HAVE A REWARD FOR HARD 698 00:37:31,520 --> 00:37:34,240 WORK SO IF SOMEBODY WORKS 699 00:37:34,240 --> 00:37:38,320 REALLY HARD AND THEN MAYBE IT 700 00:37:38,320 --> 00:37:46,480 IS OKAY TO GIVE MORE MONEY. 701 00:37:46,480 --> 00:37:52,720 AND THEN ALSO IF WE UNDERSTAND 702 00:37:52,720 --> 00:37:54,480 INEQUALITY AS DIFFERENCES, 703 00:37:54,480 --> 00:37:59,800 BIODIVERSITY, THE DIFFERENCES 704 00:37:59,800 --> 00:38:04,800 BETWEEN THE SPECIES ARE NOT. 705 00:38:04,800 --> 00:38:09,040 AND WE OFTEN SAY THAT THE 706 00:38:09,040 --> 00:38:10,440 HEALTH INOOH QUALITY IS NOT 707 00:38:10,440 --> 00:38:12,600 GOOD OR BAD SO THAT IS THE WAY 708 00:38:12,600 --> 00:38:14,240 WE START TO CAPTURE THAT. 709 00:38:14,240 --> 00:38:17,080 >>AND AGAIN IF YOU SAY THERE 710 00:38:17,080 --> 00:38:20,160 IS NO ETHICAL JUDGMENT ABOUT 711 00:38:20,160 --> 00:38:22,920 INEQUALITY, IT IS ONLY WHEN WE 712 00:38:22,920 --> 00:38:24,360 LABEL IT AS AN INEQUITY THAT 713 00:38:24,360 --> 00:38:29,120 WE WANT TO HAVE A ADJUSTMENT 714 00:38:29,120 --> 00:38:34,360 AND NOW WE WILL HAVE A 715 00:38:34,360 --> 00:38:35,320 QUESTION FROM HERE. 716 00:38:35,320 --> 00:38:36,680 >>SORRY, I HAVE A QUESTION 717 00:38:36,680 --> 00:38:38,000 ABOUT THE POINT ON THE LAST 718 00:38:38,000 --> 00:38:48,600 SLIDE YOU WERE LOOKING AT WITH 719 00:38:50,160 --> 00:38:51,520 HAUSAM'S IDEA ABOUT 720 00:38:51,520 --> 00:38:51,920 INEQUALITY. 721 00:38:51,920 --> 00:38:53,880 WE KNOW PEOPLE ARE LOW INCOME 722 00:38:53,880 --> 00:38:55,280 HAVE HIGHER STRESS LEVELS THAN 723 00:38:55,280 --> 00:38:57,360 PEOPLE WITH HIGHER OR MIDDLE 724 00:38:57,360 --> 00:38:59,640 INCOME AND THAT CAUSES CERTAIN 725 00:38:59,640 --> 00:39:01,040 HEALTH INEQUALITIES AS PEOPLE 726 00:39:01,040 --> 00:39:02,680 WITH HIGHER STRESS MIGHT HAVE 727 00:39:02,680 --> 00:39:04,760 HIGHER BLOOD PRESSURE, HIGHER 728 00:39:04,760 --> 00:39:05,760 CHOLESTEROL, LOTS OF OTHER 729 00:39:05,760 --> 00:39:06,120 THINGS. 730 00:39:06,120 --> 00:39:09,320 THAT IS SOMETHING THAT YOU CAN 731 00:39:09,320 --> 00:39:12,280 ADDRESS MEDICALLY WITH PILLS 732 00:39:12,280 --> 00:39:14,640 AND THERAPY AND SO IT IS 733 00:39:14,640 --> 00:39:16,960 REIMMEDIATABLE BUT IT IS ALSO 734 00:39:16,960 --> 00:39:18,800 COME PENSABLE IN THAT IF 735 00:39:18,800 --> 00:39:19,960 PEOPLE MADE MORE MONEY, THEY 736 00:39:19,960 --> 00:39:22,360 WOULD BE LESS STRESSED OUT. 737 00:39:22,360 --> 00:39:30,920 AND YET EVEN THOUGH IT IS 738 00:39:30,920 --> 00:39:31,720 COMPENSALBE, IT IS 739 00:39:31,720 --> 00:39:32,720 STRAIGHTFORWARD FOR ME TO SAY 740 00:39:32,720 --> 00:39:36,080 IT IS STILL AN UNFAIR 741 00:39:36,080 --> 00:39:36,480 INEQUALITY. 742 00:39:36,480 --> 00:39:43,080 SO AM I WRONG IN SAYING THAT 743 00:39:43,080 --> 00:39:46,240 IS A COMPENSABLE INEQUALITY OR 744 00:39:46,240 --> 00:39:56,680 AM I BEING UNFAIR? 745 00:40:00,520 --> 00:40:05,120 >>THERE IS NO FAMILY HEALTH 746 00:40:05,120 --> 00:40:05,920 INEQUALITY THAT WE COMPARE 747 00:40:05,920 --> 00:40:08,760 BECAUSE AS YOU SAY, WE CAN 748 00:40:08,760 --> 00:40:09,280 COMPENSATE. 749 00:40:09,280 --> 00:40:10,800 AND IT IS NOT JUST ABOUT 750 00:40:10,800 --> 00:40:12,400 HEALTH, WE NEED TO THINK ABOUT 751 00:40:12,400 --> 00:40:18,840 OVERALL AND HEALTH IS JUST ONE 752 00:40:18,840 --> 00:40:27,400 OF THE IMPORTANT WAYS TO LOOK 753 00:40:27,400 --> 00:40:33,640 AT THE OVERALL HEALTH ROLE. 754 00:40:33,640 --> 00:40:36,120 SO WE CANNOT JUST TALK TOO 755 00:40:36,120 --> 00:40:37,320 MUCH ABOUT HEALTH. 756 00:40:37,320 --> 00:40:39,400 WE CANNOT FORGET ABOUT THE 757 00:40:39,400 --> 00:40:40,360 BIGGER PICTURE. 758 00:40:40,360 --> 00:40:42,120 >>OKAY, SO WOULD IT BE FAIR 759 00:40:42,120 --> 00:40:46,200 TO SAY FROM HAUSMAN THAT THE 760 00:40:46,200 --> 00:40:48,640 EXAMPLE I GAVE IS AN INEQUITY 761 00:40:48,640 --> 00:40:51,720 BUT NOT A HEALTH INEQUITY? 762 00:40:51,720 --> 00:40:55,320 >>YES, SO WE NEED TO 763 00:40:55,320 --> 00:40:55,720 COMPENSATE. 764 00:40:55,720 --> 00:40:56,880 >>THANK YOU. 765 00:40:56,880 --> 00:40:59,360 >>GREAT, SO WHY DON'T YOU 766 00:40:59,360 --> 00:40:59,960 CONTINUE ON. 767 00:40:59,960 --> 00:41:01,040 I HAVE ANOTHER QUESTION BUT I 768 00:41:01,040 --> 00:41:04,080 THINK WE CAN ASK IT IN THE 769 00:41:04,080 --> 00:41:05,240 DISCUSSION SESSION. 770 00:41:05,240 --> 00:41:07,560 >>THAT'S GREAT. 771 00:41:07,560 --> 00:41:13,360 SO IN THE LAST SECTION, I 772 00:41:13,360 --> 00:41:20,160 WOULD LIKE TO ASK HOW EQUITY 773 00:41:20,160 --> 00:41:23,840 ADMINISTRATION ADDRESSES THE 774 00:41:23,840 --> 00:41:24,360 STUDY DESIGN. 775 00:41:24,360 --> 00:41:26,880 WE TALKED ABOUT REASONS WHY 776 00:41:26,880 --> 00:41:31,840 THE STUDY DESIGN SHOULD BE 777 00:41:31,840 --> 00:41:33,000 DIVERSE AND THE ANALYSIS PLAN 778 00:41:33,000 --> 00:41:33,680 AND REPORTING. 779 00:41:33,680 --> 00:41:36,200 SO THE FIRST ONE WE TALKED 780 00:41:36,200 --> 00:41:37,440 ABOUT WAS PARTICIPATION. 781 00:41:37,440 --> 00:41:39,040 THE PRIMARY CONCERN HERE IS 782 00:41:39,040 --> 00:41:40,680 THE FAIR SUBJECT SELECTION. 783 00:41:40,680 --> 00:41:43,840 AND IF THAT IS THE CONCERN AND 784 00:41:43,840 --> 00:41:54,400 THAT'S IT AND IF YOU DO NOT 785 00:42:03,200 --> 00:42:04,000 CONSIDER POTENTIALLY 786 00:42:04,000 --> 00:42:04,880 DIFFERENTIAL INTERVENTION 787 00:42:04,880 --> 00:42:11,600 EFFORTS DUE TO BIOLOGY OR 788 00:42:11,600 --> 00:42:13,520 SOCIETAL CONCERN, YOU ARE 789 00:42:13,520 --> 00:42:19,600 MISSING OUT ON A STUDY OR 790 00:42:19,600 --> 00:42:21,560 ANALYSIS PLAN THAT WE SHOULD 791 00:42:21,560 --> 00:42:22,000 BE DOING. 792 00:42:22,000 --> 00:42:27,360 AND IF THE EMPHASIS IS 793 00:42:27,360 --> 00:42:28,400 BIOLOGY, EXAMINATION 794 00:42:28,400 --> 00:42:30,120 POTENTIALLY DIFFERENTIAL 795 00:42:30,120 --> 00:42:37,280 CAUSAL PATHWAYS IN DIFFERENT 796 00:42:37,280 --> 00:42:39,560 GROUPS, THEN THERE WILL BE 797 00:42:39,560 --> 00:42:41,240 REPORTING. 798 00:42:41,240 --> 00:42:43,600 WE TALKED ABOUT THE PROGRAM 799 00:42:43,600 --> 00:42:45,920 WHERE YOU DO NOT INCLUDE WOMEN 800 00:42:45,920 --> 00:42:54,680 AND THAT WILL DECREASE THE 801 00:42:54,680 --> 00:42:55,720 SAMPLE SIZE AND YOU WOULD 802 00:42:55,720 --> 00:42:58,920 DESIGN FOR THAT WHEN YOU PUT 803 00:42:58,920 --> 00:43:00,880 THE STUDY TOGETHER ON WHICH IS 804 00:43:00,880 --> 00:43:01,360 TRUE. 805 00:43:01,360 --> 00:43:05,200 AND FINALLY FOR THE SOCIAL 806 00:43:05,200 --> 00:43:10,360 CONCERN, WE CAN SAY EQUITY 807 00:43:10,360 --> 00:43:11,680 CONSIDERATION, THE STUDY 808 00:43:11,680 --> 00:43:12,880 DESIGN, ANALYSIS PLAN AND 809 00:43:12,880 --> 00:43:15,480 REPORTING SHOULD MEET THE 810 00:43:15,480 --> 00:43:16,480 OBJECTIVE OF IDENTIFYING 811 00:43:16,480 --> 00:43:19,480 DIFFERENCES ACROSS GROUPS THAT 812 00:43:19,480 --> 00:43:23,520 INDICATE UNFAIRNESS OR 813 00:43:23,520 --> 00:43:26,440 INEQUITY. 814 00:43:26,440 --> 00:43:34,160 SO THE TWO STUDIES WE LOOK AT 815 00:43:34,160 --> 00:43:37,480 TODAY BY JULL AND COOKSON, 816 00:43:37,480 --> 00:43:42,160 THEY LOOK AT HEALTH EQUITY 817 00:43:42,160 --> 00:43:44,360 REEL VANITY RANDOMIZED TRIALS 818 00:43:44,360 --> 00:43:51,800 AND EQUITY INFORMATIVE 819 00:43:51,800 --> 00:43:52,120 METHODS. 820 00:43:52,120 --> 00:43:57,120 SO FOR EXAMPLE IN COOKSON'S 821 00:43:57,120 --> 00:44:01,360 ARTICLE, THE POPULATION IS LOW 822 00:44:01,360 --> 00:44:05,560 INCOME COUNTRY, THE 823 00:44:05,560 --> 00:44:08,200 INTERVENTION IS ANTENATAL 824 00:44:08,200 --> 00:44:11,320 DIETARY EDUCATION AND 825 00:44:11,320 --> 00:44:12,960 SUPPLEMENTATION PROGRAM AND 826 00:44:12,960 --> 00:44:15,120 THE COMPARISON OF BABIES WHOSE 827 00:44:15,120 --> 00:44:16,400 MOTHERS RECEIVED INTERVENTION 828 00:44:16,400 --> 00:44:17,840 VERSUS BABE LEASE WHOSE 829 00:44:17,840 --> 00:44:20,200 MOTHERS DID NOT RECEIVE THE 830 00:44:20,200 --> 00:44:21,480 INTERVENTION AND THE OUTCOME 831 00:44:21,480 --> 00:44:25,880 IS THE BIRTH WEIGHT. 832 00:44:25,880 --> 00:44:28,320 SO LEFTHAND SIDE, THE PANEL 833 00:44:28,320 --> 00:44:33,280 SHOWS THE DISTRIBUTION OF 834 00:44:33,280 --> 00:44:39,480 BIRTH WEIGHT FOR CULTURAL, THE 835 00:44:39,480 --> 00:44:41,360 BASELINE SHOWS NEEDS FOR EACH 836 00:44:41,360 --> 00:44:45,080 GROUP, THE CONTROL AND TREATED 837 00:44:45,080 --> 00:44:47,360 AND THEN FARTHER LEFT WITH 838 00:44:47,360 --> 00:44:50,960 VERY LOW BIRTH WEIGHT. 839 00:44:50,960 --> 00:44:52,920 AND THEN THE RIGHT GRAPH SHOWS 840 00:44:52,920 --> 00:44:53,960 THE AVERAGE TREATMENT EFFECT. 841 00:44:53,960 --> 00:44:57,800 SO THIS IS THE CONTROL VERSUS 842 00:44:57,800 --> 00:45:07,880 THE TREATMENT AS AN ABSTRACTED 843 00:45:07,880 --> 00:45:11,760 NUMBER AND THEN THE TREATMENT 844 00:45:11,760 --> 00:45:13,640 AVAILABLE. 845 00:45:13,640 --> 00:45:19,760 WHAT I LIKE IS THE 846 00:45:19,760 --> 00:45:21,920 DISTRIBUTION FOR THE CONTROL 847 00:45:21,920 --> 00:45:23,760 AND TREATED GROUP EVEN THOUGH 848 00:45:23,760 --> 00:45:30,480 NOT EVERYBODY HAD THE SAME 849 00:45:30,480 --> 00:45:30,840 FACTORS. 850 00:45:30,840 --> 00:45:37,240 SO IF WE FOCUS ON A PARTICULAR 851 00:45:37,240 --> 00:45:38,880 GROUP, TRADITIONALLY EXCLUDED 852 00:45:38,880 --> 00:45:44,760 GROUP, THEN WE COULD SAY THAT 853 00:45:44,760 --> 00:45:50,200 IT IS NONEQUITY INFORMATIVE, 854 00:45:50,200 --> 00:45:50,720 NONEQUITY RELEVANT. 855 00:45:50,720 --> 00:45:56,000 SO HERE IS ONE WAY TO DO THE 856 00:45:56,000 --> 00:45:57,240 EQUITY STUDY. 857 00:45:57,240 --> 00:46:07,720 IT IS OFTEN CALLED THE 858 00:46:09,480 --> 00:46:11,040 CONDITIONAL OUTCOMES AND THE 859 00:46:11,040 --> 00:46:12,920 AVERAGE TREATMENT EFFECT. 860 00:46:12,920 --> 00:46:15,120 SO THE LIGHT BLUE WHICH IS 861 00:46:15,120 --> 00:46:16,960 CONTROLS AND TREATED IS THE 862 00:46:16,960 --> 00:46:20,160 DARKER BLUE SO THE LINES SHOW 863 00:46:20,160 --> 00:46:24,200 THE AVERAGE BIRTH WEIGHT 864 00:46:24,200 --> 00:46:26,280 CONDITIONAL FOR EACH TREATMENT 865 00:46:26,280 --> 00:46:28,680 IN TREATED AND CONTROL GROUP. 866 00:46:28,680 --> 00:46:29,600 THE VERTICAL DIFFERENCE 867 00:46:29,600 --> 00:46:34,840 BETWEEN THESE LINES ARE THE 868 00:46:34,840 --> 00:46:38,000 CONDITIONAL AVERAGE TREATMENT 869 00:46:38,000 --> 00:46:39,560 EFFECTS. 870 00:46:39,560 --> 00:46:44,320 SO IN THE LEFT LINE, SHOULD 871 00:46:44,320 --> 00:46:50,560 THIS CONTINUE, YOU CAN DRAW 872 00:46:50,560 --> 00:46:52,960 THIS, AND SUMMARIZE THE 873 00:46:52,960 --> 00:46:56,600 CONDITIONAL EARNING TREATMENT 874 00:46:56,600 --> 00:47:02,000 FOR THE POOREST, MIDDLE AND 875 00:47:02,000 --> 00:47:03,480 RICHEST POPULATION AND THEN 876 00:47:03,480 --> 00:47:05,120 AGAIN, I LIKE THAT THE EXAMPLE 877 00:47:05,120 --> 00:47:06,760 SHOWS THE ENTIRE DISTRIBUTION 878 00:47:06,760 --> 00:47:08,200 OF INCOME RATHER THAN JUST THE 879 00:47:08,200 --> 00:47:10,680 GROUPS AND THAT IS MORE 880 00:47:10,680 --> 00:47:12,880 INFORMATIVE, I THINK, AND THIS 881 00:47:12,880 --> 00:47:17,840 IS A HYPOTHETICAL EXAMPLE THAT 882 00:47:17,840 --> 00:47:22,360 MAY SHOW THAT INTERVENTION HAS 883 00:47:22,360 --> 00:47:26,680 MORE IMPACT FOR THE LOWER 884 00:47:26,680 --> 00:47:28,160 SOCIOECONOMIC GROUP AND NOT 885 00:47:28,160 --> 00:47:31,680 ONLY BY DESIGN BUT AN 886 00:47:31,680 --> 00:47:32,960 INFORMATIVE STUDY WITH A GOOD 887 00:47:32,960 --> 00:47:36,040 RESULT IN TERMS OF HEALTH 888 00:47:36,040 --> 00:47:36,360 EQUITY. 889 00:47:36,360 --> 00:47:38,560 AND THIS IS NOT THE ONLY WAY 890 00:47:38,560 --> 00:47:41,680 TO DO THE EQUITY INFORMED 891 00:47:41,680 --> 00:47:43,360 STUDY BUT THE MOST OBVIOUS ONE 892 00:47:43,360 --> 00:47:45,840 AND WE SEE THAT, YOU KNOW, 893 00:47:45,840 --> 00:47:49,440 ALMOST LIKE THE SAME AS THE 894 00:47:49,440 --> 00:47:57,360 ONE I SHOWED YOU HERE, A STUDY 895 00:47:57,360 --> 00:48:04,000 OF PREGNANT WOMEN AND THIS IS 896 00:48:04,000 --> 00:48:07,640 THE CONTROL AND TREATED WAY TO 897 00:48:07,640 --> 00:48:12,320 SHOW THE HEALTH INEQUITY. 898 00:48:12,320 --> 00:48:20,240 BUT THIS IS NOT THE ONLY WAY 899 00:48:20,240 --> 00:48:24,320 TO DO THE INFORMATIVE STUDY. 900 00:48:24,320 --> 00:48:28,520 A LARGER SAMPLE SIZE IS NEEDED 901 00:48:28,520 --> 00:48:30,440 FROM TYPICALLY SMALLER GROUPS 902 00:48:30,440 --> 00:48:35,600 AND IT IS OFTEN HARD TO REACH 903 00:48:35,600 --> 00:48:36,960 SO IT IS DIFFICULT. 904 00:48:36,960 --> 00:48:40,440 SO YOU MIGHT NOT BE ABLE TO 905 00:48:40,440 --> 00:48:46,880 ENLARGE THE STUDY BUT AS LONG 906 00:48:46,880 --> 00:48:57,440 AS DIVERSE SOCIODEMOGRAPHIC 907 00:48:57,960 --> 00:48:58,960 CHARACTERISTICS ARE REPORTED, 908 00:48:58,960 --> 00:49:05,360 STUDIES CAN BE EQUITY-RELEVANT 909 00:49:05,360 --> 00:49:06,840 AND INFORMATIVE POST-HOC. 910 00:49:06,840 --> 00:49:09,360 COMBINING DATA FROM MANY 911 00:49:09,360 --> 00:49:13,360 STUDIES WITH THE METAANALYSIS 912 00:49:13,360 --> 00:49:17,200 CAN BE HELPFUL. 913 00:49:17,200 --> 00:49:20,920 METHODOLOGICALLY, THERE IS A 914 00:49:20,920 --> 00:49:23,280 RECORDED DIFFERENCE OUTSIDE OF 915 00:49:23,280 --> 00:49:28,080 THAT STUDY TO OVERCOME SMALL 916 00:49:28,080 --> 00:49:28,520 SAMPLES. 917 00:49:28,520 --> 00:49:30,360 ALSO ANOTHER CHALLENGE IS 918 00:49:30,360 --> 00:49:30,920 COST. 919 00:49:30,920 --> 00:49:33,760 THE HARDER TO REACH 920 00:49:33,760 --> 00:49:37,760 POPULATION, MIGHT BE ETHICS 921 00:49:37,760 --> 00:49:40,440 BUT ALTERNATIVELY, THE NIH 922 00:49:40,440 --> 00:49:48,520 GUIDELINES SAY COST IS NO 923 00:49:48,520 --> 00:49:53,120 REASON FOR EXCLUSION SO IF YOU 924 00:49:53,120 --> 00:49:55,760 REQUIRE FUNDING FOR THE STUDY, 925 00:49:55,760 --> 00:49:57,800 JUST ASK FOR IT. 926 00:49:57,800 --> 00:49:59,840 THE FINAL CHALLENGE IS 927 00:49:59,840 --> 00:50:02,120 COMPLEXITY AND IN HERE I WANT 928 00:50:02,120 --> 00:50:09,720 TO GO BACK TO THE PRINCIPLES 929 00:50:09,720 --> 00:50:10,760 FOR ETHICAL CLINICAL RESEARCH. 930 00:50:10,760 --> 00:50:12,480 BECAUSE OF THE TIME 931 00:50:12,480 --> 00:50:14,560 CONSTRAINT, I ONLY FOCUSED ON 932 00:50:14,560 --> 00:50:17,400 THREE IN THIS PRESENTATION BUT 933 00:50:17,400 --> 00:50:20,120 THERE ARE OTHERS IN RED HERE. 934 00:50:20,120 --> 00:50:23,440 I THINK THIS EQUITY 935 00:50:23,440 --> 00:50:25,400 CONSIDERATION COMES IN. 936 00:50:25,400 --> 00:50:26,200 SO COLLABORATIVE PARTNERSHIP. 937 00:50:26,200 --> 00:50:36,480 NOW WE ARE TALKING ABOUT FOR 938 00:50:36,480 --> 00:50:39,960 EXAMPLE WORKING WITH A 939 00:50:39,960 --> 00:50:44,760 COMMUNITY GROUP. 940 00:50:44,760 --> 00:50:46,160 FAVORABLE RISK-BENEFIT MIGHT 941 00:50:46,160 --> 00:50:47,880 BE CONSIDERED AND INDEPENDENT 942 00:50:47,880 --> 00:50:48,200 REVIEW. 943 00:50:48,200 --> 00:50:51,480 SO HERE WE ARE THINKING ABOUT 944 00:50:51,480 --> 00:50:54,360 DIVERSIFYING AND THINKING 945 00:50:54,360 --> 00:50:55,640 ABOUT THE DISTRIBUTION THAT 946 00:50:55,640 --> 00:51:06,120 SOME OF THESE SUBJECTS ARE 947 00:51:09,520 --> 00:51:10,520 GIVING INFORMED CONSENT AND 948 00:51:10,520 --> 00:51:15,160 THEN RESPECT FOR ENROLLED 949 00:51:15,160 --> 00:51:17,200 SUBJECTS. 950 00:51:17,200 --> 00:51:18,640 SO THERE ARE OTHER 951 00:51:18,640 --> 00:51:19,960 CONSIDERATIONS TO MAKE. 952 00:51:19,960 --> 00:51:21,840 INFORMED CONSENT AND RESPECT 953 00:51:21,840 --> 00:51:25,680 FOR ENROLLED SUBJECTS MIGHT 954 00:51:25,680 --> 00:51:26,960 REQUIRE EXTRA CARE, JUST BY 955 00:51:26,960 --> 00:51:28,920 THE NATURE OF WHO ARE NOW 956 00:51:28,920 --> 00:51:35,880 INVITED IN THIS STUDY. 957 00:51:35,880 --> 00:51:37,960 SO THIS IS THE SUMMARY OF THE 958 00:51:37,960 --> 00:51:38,280 TALK. 959 00:51:38,280 --> 00:51:41,600 I COVERED THREE QUESTIONS, WHO 960 00:51:41,600 --> 00:51:45,160 SHOULD BE INCLUDED AND WHY, 961 00:51:45,160 --> 00:51:47,480 HOW IS IT FAIR & OR UNFAIR AND 962 00:51:47,480 --> 00:51:50,400 WHY AND HOW DO EQUITY 963 00:51:50,400 --> 00:51:51,680 CONSIDERATIONS INFLUENCE STUDY 964 00:51:51,680 --> 00:51:56,080 DESIGN ANALYSIS PLAN AND 965 00:51:56,080 --> 00:51:58,480 REPORTING. 966 00:51:58,480 --> 00:52:00,600 SO I HOPE BY NOW I WANTED TO 967 00:52:00,600 --> 00:52:03,320 MAKE IT CLEAR TO YOU THAT 968 00:52:03,320 --> 00:52:05,040 EQUITY CONSIDERATIONS ARE NOT 969 00:52:05,040 --> 00:52:06,640 A CHECK BOX, THAT THEY ARE 970 00:52:06,640 --> 00:52:08,840 WOVEN IN PRINCIPLES FOR 971 00:52:08,840 --> 00:52:09,880 ETHICAL CLINIC RESEARCH AND WE 972 00:52:09,880 --> 00:52:11,880 NEED TO MAKE EQUITY 973 00:52:11,880 --> 00:52:13,160 CONSIDERATIONS EXPLICIT AND 974 00:52:13,160 --> 00:52:13,560 MEANINGFUL. 975 00:52:13,560 --> 00:52:15,440 IT IS IMPORTANT TO THINK 976 00:52:15,440 --> 00:52:17,320 CAREFULLY ABOUT WHEN HEALTH 977 00:52:17,320 --> 00:52:17,920 INEQUALITIES ARE UNFAIR. 978 00:52:17,920 --> 00:52:19,760 SO THAT IS THE END OF IT. 979 00:52:19,760 --> 00:52:21,680 SHOULD I STOP SHARING MY 980 00:52:21,680 --> 00:52:22,000 SCREEN? 981 00:52:22,000 --> 00:52:23,600 >>SURE, THAT WOULD BE GREAT. 982 00:52:23,600 --> 00:52:27,040 WE'RE GOING TO GIVE YOU A BIG 983 00:52:27,040 --> 00:52:28,680 GIANT ROUND OF APPLAUSE FROM 984 00:52:28,680 --> 00:52:30,240 ALL OF US HERE IN THE 985 00:52:30,240 --> 00:52:30,640 AUDITORIUM. 986 00:52:30,640 --> 00:52:33,080 I WANT TO SEE IF ANYONE IN THE 987 00:52:33,080 --> 00:52:35,360 ROOM HAS A QUESTION. 988 00:52:35,360 --> 00:52:36,680 DOESN'T LOOK LIKE ANYBODY IS 989 00:52:36,680 --> 00:52:37,840 JUMPING UP TO THE MIC. 990 00:52:37,840 --> 00:52:39,240 I HAVE ONE QUESTION FROM A 991 00:52:39,240 --> 00:52:41,400 LEARNER OUT IN THE WORLD. 992 00:52:41,400 --> 00:52:43,480 LET ME JUST SCROLL -- AND I 993 00:52:43,480 --> 00:52:45,320 WILL ALSO MENTION THAT YOUR 994 00:52:45,320 --> 00:52:48,080 LECTURE HAS SPARKED A VERY 995 00:52:48,080 --> 00:52:49,440 LOVELY CONVERSATION ONLINE 996 00:52:49,440 --> 00:52:56,120 ABOUT EQUITY AND INEQUITY AND' 997 00:52:56,120 --> 00:52:57,840 QUALITY SO THERE IS FURTHER 998 00:52:57,840 --> 00:52:58,920 TEACHING GOING ON IN THE 999 00:52:58,920 --> 00:53:00,040 DISCUSSION BOARD WHICH IS 1000 00:53:00,040 --> 00:53:00,360 LOVELY. 1001 00:53:00,360 --> 00:53:02,000 SO THIS QUESTION IS NOT 1002 00:53:02,000 --> 00:53:03,840 DIRECTLY ON POINT BUT YOU MAY 1003 00:53:03,840 --> 00:53:06,240 HAVE SOMETHING TO SAY. 1004 00:53:06,240 --> 00:53:07,920 THIS IS FROM FERNANDO. 1005 00:53:07,920 --> 00:53:10,200 HE SAYS WE HAVE SEEN A 1006 00:53:10,200 --> 00:53:11,440 MOVEMENT TO INCLUDE PREGNANT 1007 00:53:11,440 --> 00:53:14,360 WOMEN IN CLINICAL TRIALS WHO 1008 00:53:14,360 --> 00:53:15,480 ARE GENERALLY EXCLUDED TO 1009 00:53:15,480 --> 00:53:16,280 PROTECT THEM. 1010 00:53:16,280 --> 00:53:18,720 WHEN THE OBJECT OF THE STUDY 1011 00:53:18,720 --> 00:53:21,200 IS NOT PREGNANCY, WOULD IT BE 1012 00:53:21,200 --> 00:53:23,120 JUSTIFIED TO INCLUDE THIS 1013 00:53:23,120 --> 00:53:25,160 CATEGORY OF CLINICAL TRIALS OF 1014 00:53:25,160 --> 00:53:25,760 UNTESTED DRUGS. 1015 00:53:25,760 --> 00:53:28,560 I GUESS ANOTHER WAY TO SAY 1016 00:53:28,560 --> 00:53:29,920 THIS IS LIKE PREGNANT WOMEN 1017 00:53:29,920 --> 00:53:32,440 ARE OFTEN THE GROUP THAT ARE 1018 00:53:32,440 --> 00:53:36,320 EXCLUDED AND SHOULD WE WORRY 1019 00:53:36,320 --> 00:53:39,600 ABOUT THAT, AND/OR HOW SHOULD 1020 00:53:39,600 --> 00:53:41,480 WE BE MAKING PROGRESS IN 1021 00:53:41,480 --> 00:53:52,000 INCLUDING THEM MORE OFTEN? 1022 00:53:53,160 --> 00:53:55,120 >>YEAH, SO I THINK THERE ARE 1023 00:53:55,120 --> 00:53:56,840 OTHER PEOPLE PERHAPS WHO CAN 1024 00:53:56,840 --> 00:53:59,000 HAPPENS BETTER THAN ME BUT 1025 00:53:59,000 --> 00:54:01,880 WHAT I CAN OFFER, AND RECENTLY 1026 00:54:01,880 --> 00:54:12,440 I READ SOME RECOMMENDATIONS I 1027 00:54:15,600 --> 00:54:17,760 THINK IN -- 1028 00:54:17,760 --> 00:54:18,240 [INDISCERNIBLE] 1029 00:54:18,240 --> 00:54:22,200 >>OH YEAH, WE DISCUSSED THAT 1030 00:54:22,200 --> 00:54:23,760 THE OTHER DAY. 1031 00:54:23,760 --> 00:54:27,400 >>SO THE QUESTION IS ARE THEY 1032 00:54:27,400 --> 00:54:27,840 VULNERABLE. 1033 00:54:27,840 --> 00:54:28,920 THERE ARE TWO PRINCIPLES. 1034 00:54:28,920 --> 00:54:31,520 ONE IS THEY ARE INHERENTLY 1035 00:54:31,520 --> 00:54:32,680 VULNERABLE BECAUSE OF THE 1036 00:54:32,680 --> 00:54:38,160 NATURE OF THE PEOPLE, LIKE 1037 00:54:38,160 --> 00:54:39,200 CHILDREN, THE DECISION-MAKING 1038 00:54:39,200 --> 00:54:43,160 CAPACITY IS STILL DEVELOPING. 1039 00:54:43,160 --> 00:54:46,440 AND PREGNANT WOMEN PREFERABLY 1040 00:54:46,440 --> 00:54:47,600 GO INTO THAT CATEGORY BECAUSE 1041 00:54:47,600 --> 00:54:49,360 OF THE FACT THEY ARE PREGNANT. 1042 00:54:49,360 --> 00:54:51,520 BUT THEN THERE ARE OTHER KIND 1043 00:54:51,520 --> 00:54:54,520 OF VULNERABILITIES WHICH IS 1044 00:54:54,520 --> 00:54:55,080 SOCIALLY CONSTRUCTED 1045 00:54:55,080 --> 00:54:55,480 VULNERABILITY. 1046 00:54:55,480 --> 00:55:04,680 SO THERE IS NO REASON THAT THE 1047 00:55:04,680 --> 00:55:11,880 LOW INCOME PEOPLE SHOULD BE 1048 00:55:11,880 --> 00:55:15,040 NOT CONSIDERED IF IT IS NOT 1049 00:55:15,040 --> 00:55:21,440 INCOME YOU ARE STUDYING. 1050 00:55:21,440 --> 00:55:23,320 SO I THOUGHT THAT WAS VERY 1051 00:55:23,320 --> 00:55:25,400 HELPFUL AND MAYBE APPLIES 1052 00:55:25,400 --> 00:55:25,680 HERE. 1053 00:55:25,680 --> 00:55:27,400 >> YEAH, GREAT AND WE TALKED 1054 00:55:27,400 --> 00:55:29,280 A LITTLE ABOUT THE INCLUSION 1055 00:55:29,280 --> 00:55:30,720 OF PREGNANT WOMEN, I GUESS 1056 00:55:30,720 --> 00:55:32,680 LAST WEEK, AND I CAN TOUCH ON 1057 00:55:32,680 --> 00:55:35,480 THAT AGAIN IN MY -- I HAVE A 1058 00:55:35,480 --> 00:55:37,840 LITTLE BRIEF LECTURE HERE TO 1059 00:55:37,840 --> 00:55:39,000 ORIENT FOLKS TO DIFFERENT 1060 00:55:39,000 --> 00:55:39,640 POLICIES. 1061 00:55:39,640 --> 00:55:41,360 SO WITH THAT, WE WILL THANK 1062 00:55:41,360 --> 00:55:43,640 YOU FOR JOINING US HERE ONLINE 1063 00:55:43,640 --> 00:55:45,720 AND LOOK FORWARD TO SEEING YOU 1064 00:55:45,720 --> 00:55:47,960 IN PERSON AGAIN NEXT WEEK. 1065 00:55:47,960 --> 00:55:48,600 >>THANK YOU. 1066 00:55:48,600 --> 00:55:50,720 THANK YOU VERY MUCH. 1067 00:55:50,720 --> 00:55:51,640 [LAUGHTER] 1068 00:55:51,640 --> 00:55:52,600 >>SEE YOU LATER. 1069 00:55:52,600 --> 00:55:53,040 >>THANK YOU. 1070 00:55:53,040 --> 00:55:55,480 >>SO AS I SAID, YOU GUYS GET 1071 00:55:55,480 --> 00:56:00,480 A BRIEF LECTURE FROM ME NOW, 1072 00:56:00,480 --> 00:56:02,120 REMINDER THAT TODAY'S WORD IS 1073 00:56:02,120 --> 00:56:02,480 EQUITY. 1074 00:56:02,480 --> 00:56:04,200 AND FOR THOSE WHO ARE JUST 1075 00:56:04,200 --> 00:56:08,960 JOINING, WE ARE GOING TO BE 1076 00:56:08,960 --> 00:56:11,720 USING SLIDO LATER AND I WILL 1077 00:56:11,720 --> 00:56:16,360 REMIND YOU AGAIN OF THE NUMBER 1078 00:56:16,360 --> 00:56:17,640 BEFORE Dr. LANGFORD'S TALK 1079 00:56:17,640 --> 00:56:19,360 SO WE CAN GET YOUR FEEDBACK. 1080 00:56:19,360 --> 00:56:21,480 SO IF I COULD GET MY SLIDES 1081 00:56:21,480 --> 00:56:22,800 UP, THAT WOULD BE GREAT. 1082 00:56:22,800 --> 00:56:24,800 I THINK IT IS TAILOR POLICY OR 1083 00:56:24,800 --> 00:56:26,240 SOMETHING, AWESOME. 1084 00:56:26,240 --> 00:56:26,760 OOH, INTERESTING. 1085 00:56:26,760 --> 00:56:29,320 OKAY, SO WE HAD A CRAZY COLOR 1086 00:56:29,320 --> 00:56:30,480 THERE FOR A MINUTE. 1087 00:56:30,480 --> 00:56:41,000 SO AS I SAID, WE HAVE BEEN 1088 00:56:41,520 --> 00:56:42,680 ALLUDING TO INCLUSION POLICIES 1089 00:56:42,680 --> 00:56:44,320 LAST WEEK AND AGAIN TODAY AND 1090 00:56:44,320 --> 00:56:46,600 I THOUGHT IT WOULD BE HELPFUL 1091 00:56:46,600 --> 00:56:50,960 TO GIVE FOLKS A BIT OF 1092 00:56:50,960 --> 00:56:53,600 BACKGROUND ON THE POLICY IN 1093 00:56:53,600 --> 00:56:57,000 THE BACKGROUND THAT IS 1094 00:56:57,000 --> 00:56:58,600 MOTIVATING INVESTIGATORS TO 1095 00:56:58,600 --> 00:57:00,200 INCLUDE MORE DIVERSE 1096 00:57:00,200 --> 00:57:01,840 POPULATIONS IN THEIR RESEARCH. 1097 00:57:01,840 --> 00:57:03,800 HERE IS MY DISCLAIMER THAT YOU 1098 00:57:03,800 --> 00:57:05,520 ARE ALL FAMILIAR WITH NOW. 1099 00:57:05,520 --> 00:57:09,000 SO A REALLY QUICK PRIMER FOR 1100 00:57:09,000 --> 00:57:10,800 EVERYONE, ESPECIALLY THOSE NOT 1101 00:57:10,800 --> 00:57:13,360 FAMILIAR WITH HOW THE U.S. 1102 00:57:13,360 --> 00:57:15,960 DEPARTMENT OF HEALTH AND HUMAN 1103 00:57:15,960 --> 00:57:18,600 SERVICES WORKS, BUT THERE ARE 1104 00:57:18,600 --> 00:57:20,800 SIX KEY AGENCIES RELATED TO 1105 00:57:20,800 --> 00:57:21,600 DHHS. 1106 00:57:21,600 --> 00:57:22,760 YOU WILL PROBABLY RECOGNIZE 1107 00:57:22,760 --> 00:57:24,600 SOME OF THEM, SOME OF THEM 1108 00:57:24,600 --> 00:57:26,120 MAYBE NOT SO MUCH BUT I AM 1109 00:57:26,120 --> 00:57:28,800 GOING TO FOCUS ON THE FDA AND 1110 00:57:28,800 --> 00:57:30,160 THE NATIONAL INSTITUTES OF 1111 00:57:30,160 --> 00:57:30,480 HEALTH. 1112 00:57:30,480 --> 00:57:32,880 WE ARE HERE AT THE NATIONAL 1113 00:57:32,880 --> 00:57:34,520 INSTITUTES OF HEALTH AND WE DO 1114 00:57:34,520 --> 00:57:36,840 A LOT OF RESEARCH IN HOUSE AS 1115 00:57:36,840 --> 00:57:38,400 WELL AS FUND A LOT OF RESEARCH 1116 00:57:38,400 --> 00:57:41,800 AND AS YOU KNOW, THE FDA IS IN 1117 00:57:41,800 --> 00:57:44,560 CHARGE OF THE REGULATION OF 1118 00:57:44,560 --> 00:57:47,600 DRUGS AND ALL SORTS OF OTHER 1119 00:57:47,600 --> 00:57:49,520 BIOLOGICS THAT ARE HEADED TO 1120 00:57:49,520 --> 00:57:49,880 MARKET. 1121 00:57:49,880 --> 00:57:54,200 SO JUST TO GIVE YOU A CONTEXT 1122 00:57:54,200 --> 00:57:58,200 AS HOW DEEP THE NIH GOES IN 1123 00:57:58,200 --> 00:58:00,720 TERMS OF HOW POLICY THAT THE 1124 00:58:00,720 --> 00:58:03,440 NIH DEVELOPED CAN AFFECT THE 1125 00:58:03,440 --> 00:58:05,400 CONDUCT OF HUMAN SUBJECT 1126 00:58:05,400 --> 00:58:06,720 RESEARCH, THE NIH BUDGET FOR 1127 00:58:06,720 --> 00:58:09,280 THE LAST FISCAL YEAR WAS 1128 00:58:09,280 --> 00:58:09,680 $45 BILLION. 1129 00:58:09,680 --> 00:58:14,200 THAT IS A LOT. 1130 00:58:14,200 --> 00:58:15,800 84PERCENT OF THAT $45 BILLION 1131 00:58:15,800 --> 00:58:17,320 WENT TO EXTRAMURAL 1132 00:58:17,320 --> 00:58:18,400 RESEARCHERS, SO RESEARCHERS 1133 00:58:18,400 --> 00:58:20,920 THAT ARE ALL OVER THE UNITED 1134 00:58:20,920 --> 00:58:22,040 STATES, SOME INTERNATIONALLY, 1135 00:58:22,040 --> 00:58:26,920 THAT HAVE APPLIED FOR AND 1136 00:58:26,920 --> 00:58:27,600 RECEIVED COMPETITIVE GRANTS. 1137 00:58:27,600 --> 00:58:29,800 THIS IS JUST ONE YEAR, MIND 1138 00:58:29,800 --> 00:58:30,200 YOU. 1139 00:58:30,200 --> 00:58:32,400 I JUST FIND THESE NUMBERS SO 1140 00:58:32,400 --> 00:58:33,440 BIG. 1141 00:58:33,440 --> 00:58:36,280 50,000 COMPETITIVE GRANTS TO 1142 00:58:36,280 --> 00:58:37,680 MORE THAN 300,000 RESEARCHERS 1143 00:58:37,680 --> 00:58:39,280 AT MORE THAN 2500 1144 00:58:39,280 --> 00:58:40,200 UNIVERSITIES, RIGHT? 1145 00:58:40,200 --> 00:58:43,440 SO AGAIN, THE NIH HAS A LONG 1146 00:58:43,440 --> 00:58:46,720 REACH AS IT RELATES TO 1147 00:58:46,720 --> 00:58:49,240 RESEARCH BECAUSE WE, THE ROYAL 1148 00:58:49,240 --> 00:58:52,000 WE, HOLD THE PURSE STRINGS. 1149 00:58:52,000 --> 00:58:53,880 SO WE CAN PLACE DEMANDS ON 1150 00:58:53,880 --> 00:58:54,800 INVESTIGATORS AND THEY REALLY 1151 00:58:54,800 --> 00:58:57,400 HAVE TO DO WHAT WE SAY BECAUSE 1152 00:58:57,400 --> 00:59:00,440 IF THEY DON'T, THEY MAY NOT BE 1153 00:59:00,440 --> 00:59:01,160 COMPETITIVE FOR GRANTS. 1154 00:59:01,160 --> 00:59:03,160 AND JUST AS AN ASIDE, 1155 00:59:03,160 --> 00:59:05,800 10 PERCENT OF THE FUNDING 1156 00:59:05,800 --> 00:59:09,480 STAYS HERE AND FUNDS 6000 1157 00:59:09,480 --> 00:59:10,600 INVESTIGATORS, MOST OF THOSE 1158 00:59:10,600 --> 00:59:19,520 LABS ARE HERE IN BETHESDA. 1159 00:59:19,520 --> 00:59:21,720 THERE IS A PRESENTATION IN 1160 00:59:21,720 --> 00:59:25,920 MONTANA AS WELL AS A COUPLE OF 1161 00:59:25,920 --> 00:59:26,360 OTHER STATES. 1162 00:59:26,360 --> 00:59:28,280 SO I WILL NOT TALK A LOT ABOUT 1163 00:59:28,280 --> 00:59:31,680 THESE BUT I WANT YOU TO BE 1164 00:59:31,680 --> 00:59:33,600 AWARE OF THEM AND AWARE OF THE 1165 00:59:33,600 --> 00:59:34,160 TIMELINE. 1166 00:59:34,160 --> 00:59:36,400 SO IT IS NOW MANY YEARS AGO 1167 00:59:36,400 --> 00:59:40,480 THAT THE NIH FIRST DEVELOPED 1168 00:59:40,480 --> 00:59:43,040 POLICY THAT SUGGESTED TO 1169 00:59:43,040 --> 00:59:44,720 INVESTIGATORS WHEN YOU ARE 1170 00:59:44,720 --> 00:59:48,240 DOING YOUR RESEARCH, IT IS A 1171 00:59:48,240 --> 00:59:49,640 REALLY GREAT IDEA IF YOU 1172 00:59:49,640 --> 00:59:51,440 EXPAND THE POPULATION OF WOMEN 1173 00:59:51,440 --> 00:59:53,200 AND MINORITIES IN YOUR 1174 00:59:53,200 --> 00:59:54,280 RESEARCH. 1175 00:59:54,280 --> 00:59:57,800 IT WAS OPTIONAL BUT THE NIH 1176 00:59:57,800 --> 01:00:00,440 WAS, RIGHT, SETTING OUT THE 1177 01:00:00,440 --> 01:00:03,880 EXPECTATION AND THE STANDARD. 1178 01:00:03,880 --> 01:00:05,880 IN 1994 AND UPDATED IN 2001, 1179 01:00:05,880 --> 01:00:08,360 THE SO I WANT, THE CONGRESS OF 1180 01:00:08,360 --> 01:00:10,680 THE UNITED STATES SAID NIH, 1181 01:00:10,680 --> 01:00:13,760 YOU HAVE TO COME UP WITH A 1182 01:00:13,760 --> 01:00:17,520 POLICY THAT YOU ARE GOING TO 1183 01:00:17,520 --> 01:00:20,320 ENFORCE AS IT RELATES TO THE 1184 01:00:20,320 --> 01:00:21,720 INCLUSION OF WOMEN AND 1185 01:00:21,720 --> 01:00:23,640 MINORITIES AS SUBJECTS IN 1186 01:00:23,640 --> 01:00:24,600 CLINICAL RESEARCH. 1187 01:00:24,600 --> 01:00:27,720 SO THAT MEANS THAT NIH HAS TO 1188 01:00:27,720 --> 01:00:30,440 SAY TO INVESTIGATORS TELL US 1189 01:00:30,440 --> 01:00:35,080 HOW YOU ARE GOING TO RECRUIT 1190 01:00:35,080 --> 01:00:36,600 DIVERSE POPULATIONS AND WE 1191 01:00:36,600 --> 01:00:39,240 TALKED A LITTLE ABOUT HOW ONE 1192 01:00:39,240 --> 01:00:40,160 MIGHT DO THAT. 1193 01:00:40,160 --> 01:00:42,000 NIH IS GOING TO TALK A LOT 1194 01:00:42,000 --> 01:00:44,160 ABOUT WHAT THE PRACTICAL 1195 01:00:44,160 --> 01:00:48,560 IMPLICATIONS OF -- SORRY, 1196 01:00:48,560 --> 01:00:50,400 Dr. LANGFORD WILL TALK ABOUT 1197 01:00:50,400 --> 01:00:55,040 HOW ONE MIGHT VIEW THAT. 1198 01:00:55,040 --> 01:00:59,840 AND IT BECAME A RULES RATHER 1199 01:00:59,840 --> 01:01:00,560 THAN A SUGGESTION. 1200 01:01:00,560 --> 01:01:02,480 IN THAT SAME -- UNDER THAT 1201 01:01:02,480 --> 01:01:05,280 SAME UMBRELLA A COUPLE OF 1202 01:01:05,280 --> 01:01:06,840 YEARS LATER, ADVOCATES SAID, 1203 01:01:06,840 --> 01:01:07,640 YOU KNOW, THOSE POLICIES THAT 1204 01:01:07,640 --> 01:01:10,920 YOU HAVE IN PLACE FOR WOMEN 1205 01:01:10,920 --> 01:01:12,520 AND MINORITIES WOULD ALSO BE 1206 01:01:12,520 --> 01:01:14,280 REALLY IMPORTANT AS IT RELATES 1207 01:01:14,280 --> 01:01:16,240 TO KIDS BECAUSE AS WE 1208 01:01:16,240 --> 01:01:19,120 DISCUSSED WITH Dr. SHAH LAST 1209 01:01:19,120 --> 01:01:21,640 WEEK, CHILDREN WERE 1210 01:01:21,640 --> 01:01:22,320 TRADITIONALLY EXCLUDED FROM 1211 01:01:22,320 --> 01:01:24,840 RESEARCH BECAUSE OF THEIR 1212 01:01:24,840 --> 01:01:28,360 VULNERABILITY AND BECAUSE OF 1213 01:01:28,360 --> 01:01:29,600 THE PRIORITIES OF 1214 01:01:29,600 --> 01:01:30,800 PHARMACEUTICAL COMPANIES. 1215 01:01:30,800 --> 01:01:36,320 SO THE NIH PUT OUT A SIMILAR 1216 01:01:36,320 --> 01:01:37,640 REQUIREMENT THAT INVESTIGATORS 1217 01:01:37,640 --> 01:01:38,760 OUGHT TO CONSIDER THE 1218 01:01:38,760 --> 01:01:40,080 INCLUSION OF CHILDREN AND IF 1219 01:01:40,080 --> 01:01:43,040 THEY AREN'T GOING TO INCLUDE 1220 01:01:43,040 --> 01:01:46,400 THEM, THEY HAVE TO JUSTIFY IT 1221 01:01:46,400 --> 01:01:48,440 IN THEIR APPLICATION. 1222 01:01:48,440 --> 01:01:50,360 SO AGAIN PUSHING, LIKE YOU 1223 01:01:50,360 --> 01:01:52,680 HAVE GOT TO DO IT, IF YOU 1224 01:01:52,680 --> 01:01:54,880 CAN'T, TELL US WHY. 1225 01:01:54,880 --> 01:01:57,200 AND AS DOCTOR ASADA MENTIONED 1226 01:01:57,200 --> 01:01:58,600 ON WOMEN AND MINORITIES, COST 1227 01:01:58,600 --> 01:02:00,320 CAN'T BE A REASON WHY. 1228 01:02:00,320 --> 01:02:02,880 YOU CAN'T SAY I CAN'T AFFORD 1229 01:02:02,880 --> 01:02:03,760 THAT. 1230 01:02:03,760 --> 01:02:12,240 YOU BUILD THAT INTO YOUR GRANT 1231 01:02:12,240 --> 01:02:12,600 PROPOSAL. 1232 01:02:12,600 --> 01:02:14,480 AND THEN FINALLY AS IT RELATES 1233 01:02:14,480 --> 01:02:15,640 TO THE NIH, THERE WAS AN 1234 01:02:15,640 --> 01:02:17,920 UPDATE TO THE CHILDREN'S 1235 01:02:17,920 --> 01:02:19,560 GUIDELINE IN 2017 THAT SAID, 1236 01:02:19,560 --> 01:02:21,640 YOU KNOW WHAT, THERE ARE ALSO 1237 01:02:21,640 --> 01:02:27,320 OLDER PEOPLE WHO ARE GENERALLY 1238 01:02:27,320 --> 01:02:28,240 EXCLUDED FROM RESEARCH. 1239 01:02:28,240 --> 01:02:31,160 NOW THOSE WHO ARE OLDER ARE 1240 01:02:31,160 --> 01:02:37,960 GENERALLY EXCLUDED BECAUSE 1241 01:02:37,960 --> 01:02:39,840 THEY OFTEN HAVE COMORBIDITIES. 1242 01:02:39,840 --> 01:02:42,480 THE OLDER YOU GET, YOU MIGHT 1243 01:02:42,480 --> 01:02:43,280 HAVE ONE OR MORE CONDITIONS 1244 01:02:43,280 --> 01:02:46,280 THAT YOU ARE TAKING MEDICATION 1245 01:02:46,280 --> 01:02:47,880 OR HAVE SOME INTERVENTION FOR. 1246 01:02:47,880 --> 01:02:51,400 AND AS WE MENTIONED BEFORE, 1247 01:02:51,400 --> 01:02:55,280 THE BEST CLINICAL TRIAL MIGHT 1248 01:02:55,280 --> 01:02:59,920 HAVE VERY HEALTHY HOMOGENOUS 1249 01:02:59,920 --> 01:03:00,240 PEOPLE. 1250 01:03:00,240 --> 01:03:03,000 ONCE YOU INTRODUCE SOMETHING 1251 01:03:03,000 --> 01:03:04,280 LIKE UNDERLYING HEALTH 1252 01:03:04,280 --> 01:03:05,800 CONDITIONS, IT MAKES IT A 1253 01:03:05,800 --> 01:03:07,560 LITTLE MORE COMPLICATED. 1254 01:03:07,560 --> 01:03:09,560 THE NIH SAID IT MIGHT BE A 1255 01:03:09,560 --> 01:03:10,520 LITTLE MORE COMPLICATED BUT 1256 01:03:10,520 --> 01:03:11,880 REMEMBER IF YOU ARE DEVELOPING 1257 01:03:11,880 --> 01:03:14,080 DRUGS FOR PEOPLE WHO ARE OLDER 1258 01:03:14,080 --> 01:03:17,480 AND DON'T INCLUDE OLDER PEOPLE 1259 01:03:17,480 --> 01:03:18,400 WHO HAVE COMORBIDITIES, YOU 1260 01:03:18,400 --> 01:03:20,200 WILL NOT KNOW WHETHER YOUR NEW 1261 01:03:20,200 --> 01:03:21,720 TREATMENT WILL WORK IN THAT 1262 01:03:21,720 --> 01:03:22,040 GROUP. 1263 01:03:22,040 --> 01:03:24,000 SO AN EFFORT TO THEN SAY YOU 1264 01:03:24,000 --> 01:03:26,440 HAVE GOT TO INCLUDE PEOPLE 1265 01:03:26,440 --> 01:03:28,000 ACROSS THE LIFESPAN. 1266 01:03:28,000 --> 01:03:32,720 SO THAT'S THE NIH IN TERMS OF 1267 01:03:32,720 --> 01:03:33,480 THE INCLUSION GUIDELINES. 1268 01:03:33,480 --> 01:03:36,000 THERE IS AN ADDITIONAL POLICY 1269 01:03:36,000 --> 01:03:39,760 THAT WAS INTRODUCED IN 2016 1270 01:03:39,760 --> 01:03:42,760 THAT SAID IF YOU ARE DOING 1271 01:03:42,760 --> 01:03:44,000 EARLY-STAGE RESEARCH, YOU 1272 01:03:44,000 --> 01:03:48,680 OUGHT TO ALSO BE TALKING 1273 01:03:48,680 --> 01:03:52,360 ABOUT, THINKING ABOUT SEX AS A 1274 01:03:52,360 --> 01:03:53,080 BIOLOGICAL BARRIER ALTHOUGH I 1275 01:03:53,080 --> 01:03:56,600 DON'T THINK THAT IS THE RIGHT 1276 01:03:56,600 --> 01:04:02,960 WORD BUT A BIOLOGICAL MARKER. 1277 01:04:02,960 --> 01:04:06,200 BUT THE IDEA THERE IS AND WE 1278 01:04:06,200 --> 01:04:07,280 HAVE TALKED BRIEFLY ABOUT 1279 01:04:07,280 --> 01:04:10,160 THIS, ONE OUGHT TO BE THINKING 1280 01:04:10,160 --> 01:04:11,200 ABOUT GENDER AS AN EXAMPLE 1281 01:04:11,200 --> 01:04:13,000 WHEN YOU ARE DOING YOUR 1282 01:04:13,000 --> 01:04:16,280 RESEARCH IN THE PETRI DISH OR 1283 01:04:16,280 --> 01:04:17,440 WITH ANIMALS, RIGHT? 1284 01:04:17,440 --> 01:04:20,840 IF YOU ANTICIPATE THE DRUG YOU 1285 01:04:20,840 --> 01:04:24,080 ARE DEVELOPING, SO BACK TO 1286 01:04:24,080 --> 01:04:25,600 Dr. ASADA'S EXAMPLE FOR 1287 01:04:25,600 --> 01:04:26,960 HEART DISEASE, IF YOU ARE 1288 01:04:26,960 --> 01:04:28,480 DEVELOPING A NEW TREATMENT FOR 1289 01:04:28,480 --> 01:04:30,320 HEART DISEASE, MAYBE YOU OUGHT 1290 01:04:30,320 --> 01:04:33,160 TO BE INCLUDING MALE AND 1291 01:04:33,160 --> 01:04:35,720 FEMALE MICE IN YOUR RESEARCH. 1292 01:04:35,720 --> 01:04:36,760 SO AGAIN, PUSHING FURTHER DOWN 1293 01:04:36,760 --> 01:04:39,240 IN THE STAGES OF DEVELOPMENT. 1294 01:04:39,240 --> 01:04:41,160 AND RECENTLY WE DON'T YET HAVE 1295 01:04:41,160 --> 01:04:43,680 ANY POLICY FOR THE NIH BUT 1296 01:04:43,680 --> 01:04:48,800 THERE HAS BEEN ATTENTION TO 1297 01:04:48,800 --> 01:04:51,800 INCLUSION OF ADDITIONAL GROUPS 1298 01:04:51,800 --> 01:04:56,800 SO LESBIAN, GAY, BISEXUAL AND 1299 01:04:56,800 --> 01:04:59,320 TRANSGENDER PEOPLE AND PEOPLE 1300 01:04:59,320 --> 01:05:00,920 WITH DISABILITIES WHICH WE 1301 01:05:00,920 --> 01:05:03,000 TALKED ABOUT THE OTHER DAY IN 1302 01:05:03,000 --> 01:05:05,840 TERMS OF ARE WE PUTTING 1303 01:05:05,840 --> 01:05:09,720 RESTRICTIONS ON CLINICAL 1304 01:05:09,720 --> 01:05:11,560 TRIALS THAT NOT INTENTIONALLY 1305 01:05:11,560 --> 01:05:13,720 EXCLUDE PEOPLE WITH 1306 01:05:13,720 --> 01:05:14,160 DISABILITIES. 1307 01:05:14,160 --> 01:05:15,800 REALLY BASIC EXAMPLE, RIGHT? 1308 01:05:15,800 --> 01:05:18,840 YOUR CLINIC IS NOT ACCESSIBLE 1309 01:05:18,840 --> 01:05:20,120 OR NOT ACCESSIBLE TO 1310 01:05:20,120 --> 01:05:21,880 PARTICULAR GROUPS OF DISABLED 1311 01:05:21,880 --> 01:05:23,360 PEOPLE, MAYBE YOU SHOULD THINK 1312 01:05:23,360 --> 01:05:25,520 ABOUT WAYS YOU COULD MAKE IT 1313 01:05:25,520 --> 01:05:26,240 MORE ACCESSIBLE. 1314 01:05:26,240 --> 01:05:28,560 SO I AM GOING TO QUICKLY 1315 01:05:28,560 --> 01:05:31,640 TRANSITION OVER TO THE FDA. 1316 01:05:31,640 --> 01:05:37,320 THE FDA, YOU WILL REMEMBER, IS 1317 01:05:37,320 --> 01:05:39,600 REGULATING THE MARKETING OF 1318 01:05:39,600 --> 01:05:41,720 NEW PRODUCTS, SO A LOT OF THAT 1319 01:05:41,720 --> 01:05:43,120 PRELIMINARY RESEARCH IS GOING 1320 01:05:43,120 --> 01:05:47,120 ON IN THE EXTRAMURAL SETTING 1321 01:05:47,120 --> 01:05:49,760 WITH THOSE NIH DOLLARS. 1322 01:05:49,760 --> 01:05:53,040 PHARMACEUTICAL COMPANIES THEN 1323 01:05:53,040 --> 01:05:54,600 BUY, PROCURE, GET THOSE 1324 01:05:54,600 --> 01:05:57,640 PRODUCTS AND PUSH THEM FORWARD 1325 01:05:57,640 --> 01:05:58,560 THROUGH THEIR SYSTEMATIC SET 1326 01:05:58,560 --> 01:06:00,040 OF TRIALS. 1327 01:06:00,040 --> 01:06:01,840 WE KNOW FOR EXAMPLE THAT A LOT 1328 01:06:01,840 --> 01:06:04,440 OF PHASE 1 AND PHASE 2 1329 01:06:04,440 --> 01:06:05,760 RESEARCH HAPPENS HERE AT THE 1330 01:06:05,760 --> 01:06:06,640 CLINICAL CENTER. 1331 01:06:06,640 --> 01:06:08,920 BEFORE IT GOES TO PHASE 3, 1332 01:06:08,920 --> 01:06:11,520 THERE MIGHT BE SOMETHING THAT 1333 01:06:11,520 --> 01:06:12,680 THERE IS A TRANSFER BETWEEN 1334 01:06:12,680 --> 01:06:14,800 THE DEPARTMENT OF HEALTH AND 1335 01:06:14,800 --> 01:06:16,960 PHARMACEUTICAL COMPANY TO TAKE 1336 01:06:16,960 --> 01:06:18,560 IT INTO PHASE 3 TRIALS. 1337 01:06:18,560 --> 01:06:20,760 SO AGAIN, ANOTHER BIG PLAYER 1338 01:06:20,760 --> 01:06:25,520 IN ENFORCING OR SUGGESTING 1339 01:06:25,520 --> 01:06:26,000 INCLUSION. 1340 01:06:26,000 --> 01:06:27,320 IF SO AGAIN, NOT GOING TO GO 1341 01:06:27,320 --> 01:06:28,840 THROUGH ALL OF THESE. 1342 01:06:28,840 --> 01:06:31,040 I MENTIONED THE FIRST ONE IN 1343 01:06:31,040 --> 01:06:34,120 MY LECTURE LAST WEEK ABOUT THE 1344 01:06:34,120 --> 01:06:36,160 GENERAL CONSIDERATIONS IN 1977 1345 01:06:36,160 --> 01:06:37,240 THAT SAID CHILD-BEARING WOMEN 1346 01:06:37,240 --> 01:06:40,080 SHOULD NOT BE INCLUDED IN 1347 01:06:40,080 --> 01:06:40,760 EARLY PHASE TRIALS. 1348 01:06:40,760 --> 01:06:47,360 THAT WAS WITHDRAWN IN 1993 1349 01:06:47,360 --> 01:06:51,280 AND SINCE, YOU WILL SEE I HAVE 1350 01:06:51,280 --> 01:06:53,560 ON THE SLIDE HERE, THERE HAVE 1351 01:06:53,560 --> 01:06:56,360 BEEN LOTS OF EFFORTS FROM THE 1352 01:06:56,360 --> 01:06:58,200 FDA TO ENCOURAGE 1353 01:06:58,200 --> 01:06:59,320 PHARMACEUTICAL COMPANIES TO 1354 01:06:59,320 --> 01:07:00,480 THINK ABOUT DIVERSE 1355 01:07:00,480 --> 01:07:01,400 POPULATIONS SO YOU KNOW 1356 01:07:01,400 --> 01:07:03,480 CHANGES TO THE NEW DRUG 1357 01:07:03,480 --> 01:07:04,280 APPLICATIONS, DRUGS LIKELY TO 1358 01:07:04,280 --> 01:07:07,640 BE USED IN ELDERLY, LOOKING 1359 01:07:07,640 --> 01:07:09,480 FOR GENDER DIFFERENCES, 1360 01:07:09,480 --> 01:07:11,080 DEMOGRAPHICS, PREGNANT WOMEN, 1361 01:07:11,080 --> 01:07:14,200 ENHANCING COLLECTION OF 1362 01:07:14,200 --> 01:07:15,480 DEMOGRAPHIC SUBGROUP DATA, 1363 01:07:15,480 --> 01:07:19,600 LOOKING AT RACE AND ETHNICITY 1364 01:07:19,600 --> 01:07:21,760 WITH RELATION TO MEDICAL 1365 01:07:21,760 --> 01:07:22,120 DEVICES. 1366 01:07:22,120 --> 01:07:24,960 AGAIN, LOTS OF ACTION AS 1367 01:07:24,960 --> 01:07:27,960 RECENTLY AS 2020 IN 1368 01:07:27,960 --> 01:07:29,560 ENCOURAGING PHARMACEUTICAL 1369 01:07:29,560 --> 01:07:31,800 COMPANIES TO DIVERSIFY THEIR 1370 01:07:31,800 --> 01:07:32,440 POPULATION. 1371 01:07:32,440 --> 01:07:34,480 AND I AM JUST GOING TO SHOW 1372 01:07:34,480 --> 01:07:36,960 YOU THIS REALLY COOL SNAPSHOT 1373 01:07:36,960 --> 01:07:38,760 THAT I DISORDER WHEN I WAS 1374 01:07:38,760 --> 01:07:41,240 DOING SOME RESEARCH FOR THIS 1375 01:07:41,240 --> 01:07:43,040 LECTURE. 1376 01:07:43,040 --> 01:07:45,720 IT TURNS OUT THAT SINCE AN ACT 1377 01:07:45,720 --> 01:07:49,400 OF CONGRESS IN 2015 OR I GUESS 1378 01:07:49,400 --> 01:07:53,320 2014 IMPLEMENTED IN 2015, THE 1379 01:07:53,320 --> 01:08:00,320 FDA PRODUCES THIS DRUG TRIAL 1380 01:08:00,320 --> 01:08:01,880 SNAPSHOT EVERY YEAR. 1381 01:08:01,880 --> 01:08:04,400 THIS GRAPHIC I AM SHARING HERE 1382 01:08:04,400 --> 01:08:06,480 IS FROM THE 2019 REPORT 1383 01:08:06,480 --> 01:08:08,080 BECAUSE UNFORTUNATELY THIS 1384 01:08:08,080 --> 01:08:10,480 LOVELY GRAPHIC IS NOT IN THE 1385 01:08:10,480 --> 01:08:12,320 2021 REPORT BUT YOU WILL SEE 1386 01:08:12,320 --> 01:08:15,240 THAT EVERY YEAR THEY ARE 1387 01:08:15,240 --> 01:08:19,080 REPORTING ON Y AXIS KEY 1388 01:08:19,080 --> 01:08:21,440 THERAPEUTIC AREAS AND THE ON 1389 01:08:21,440 --> 01:08:24,440 THE X AXIS, THE NUMBER OF MEN 1390 01:08:24,440 --> 01:08:25,920 AND WOMEN ENROLLING IN THOSE 1391 01:08:25,920 --> 01:08:27,400 TRIALS. 1392 01:08:27,400 --> 01:08:28,960 AND THE FDA CAN DO THAT 1393 01:08:28,960 --> 01:08:30,640 BECAUSE ALL THE RESEARCH THAT 1394 01:08:30,640 --> 01:08:32,760 WAS CONDUCTED IN ORDER TO ASK 1395 01:08:32,760 --> 01:08:34,800 THE FDA TO APPROVE SOMETHING 1396 01:08:34,800 --> 01:08:37,560 FOR MARKETING IS PULLED INTO 1397 01:08:37,560 --> 01:08:39,920 THE APPLICATION SYSTEM AND 1398 01:08:39,920 --> 01:08:41,760 THEY CAN THEN LITERALLY COUNT 1399 01:08:41,760 --> 01:08:43,720 UP THE NUMBER OF MEN AND 1400 01:08:43,720 --> 01:08:45,920 NUMBER OF WOMEN INCLUDED IN 1401 01:08:45,920 --> 01:08:48,200 ANY SET OF CLINICAL TRIALS. 1402 01:08:48,200 --> 01:08:50,160 AND SO YOU WILL SEE HERE, 1403 01:08:50,160 --> 01:08:53,400 RIGHT, THERE ARE SOME, SO 1404 01:08:53,400 --> 01:08:54,240 CARDIOVASCULAR DISEASE, RIGHT, 1405 01:08:54,240 --> 01:08:56,600 YOU KNOW, IT IS NOT EQUAL, 1406 01:08:56,600 --> 01:08:57,080 RIGHT? 1407 01:08:57,080 --> 01:09:00,640 WE HAVE MAYBE A THIRD, SO 1408 01:09:00,640 --> 01:09:02,800 20,000 UP TO 60,000, YOU HAVE 1409 01:09:02,800 --> 01:09:05,200 MAYBE A THIRD WOMEN IN THE 1410 01:09:05,200 --> 01:09:06,000 CARDIOVASCULAR DISEASE AREA 1411 01:09:06,000 --> 01:09:10,920 BUT FRANKLY THAT IS A LOT OF 1412 01:09:10,920 --> 01:09:11,280 PROGRESS. 1413 01:09:11,280 --> 01:09:13,120 IT TOOK THE SCIENTIST 1414 01:09:13,120 --> 01:09:15,480 COMMUNITY A WHILE TO GET TO 1415 01:09:15,480 --> 01:09:17,240 THE POINT Dr. ASADA 1416 01:09:17,240 --> 01:09:18,440 MENTIONED WHERE WE HAVE 1417 01:09:18,440 --> 01:09:21,240 ACKNOWLEDGED AND NOW ARE 1418 01:09:21,240 --> 01:09:22,280 FOCUSING ON BIOLOGICAL 1419 01:09:22,280 --> 01:09:25,080 DIFFERENCES IN GROUPS OF WOMEN 1420 01:09:25,080 --> 01:09:26,480 AND MEN WITH CARDIOVASCULAR 1421 01:09:26,480 --> 01:09:28,000 DISEASE AND HOW THEY RESPOND 1422 01:09:28,000 --> 01:09:28,680 DIFFERENTLY. 1423 01:09:28,680 --> 01:09:30,680 SO I SEE THIS AS GOOD NEWS 1424 01:09:30,680 --> 01:09:32,800 THAT THERE IS ACTUALLY A THIRD 1425 01:09:32,800 --> 01:09:37,000 OF THE WOMEN, A THIRD OF THOSE 1426 01:09:37,000 --> 01:09:39,400 WHO ARE BEING STUDIED ARE 1427 01:09:39,400 --> 01:09:41,000 WOMEN. NO SURPRISE, FINE 1428 01:09:41,000 --> 01:09:45,080 COLLING IS ALL BLUE AND IT 1429 01:09:45,080 --> 01:09:47,720 LOOKS PRETTY GOOD -- 1430 01:09:47,720 --> 01:09:48,280 GYNECOLOGY. 1431 01:09:48,280 --> 01:09:51,240 SOME OF THESE INFECTIOUS 1432 01:09:51,240 --> 01:09:52,880 DISEASES ARE EQUAL TO BE 1433 01:09:52,880 --> 01:09:56,080 CONSIDERED AND ONE COULD SAY, 1434 01:09:56,080 --> 01:09:59,680 SPEAKING OF CAUSALITY, BACK TO 1435 01:09:59,680 --> 01:10:02,040 Dr. ASADA' S LECTURE, I AM 1436 01:10:02,040 --> 01:10:03,800 NOT CERTAIN I CAN SAY THE 1437 01:10:03,800 --> 01:10:05,080 REASON THIS SLIDE LOOKS THIS 1438 01:10:05,080 --> 01:10:07,280 WAY IS BECAUSE ALL THE WORK 1439 01:10:07,280 --> 01:10:10,960 THE NIH AND FDA HAVE DONE TO 1440 01:10:10,960 --> 01:10:11,920 ENCOURAGE DIVERSITY, BUT I AM 1441 01:10:11,920 --> 01:10:14,760 PRETTY SURE IT HAS PLAYED A 1442 01:10:14,760 --> 01:10:18,880 ROLE IN THE FACT THAT WE CAN 1443 01:10:18,880 --> 01:10:22,040 PORTRAY THE DATA IN THIS WAY 1444 01:10:22,040 --> 01:10:29,720 AND SEE THAT IT'S RELATIVELY 1445 01:10:29,720 --> 01:10:30,040 EQUAL. 1446 01:10:30,040 --> 01:10:31,480 SO I AM GOING TO MENTION A 1447 01:10:31,480 --> 01:10:36,320 COUPLE OF OTHER PLAYERS AS IT 1448 01:10:36,320 --> 01:10:40,920 WERE IN THIS SPACE AND THEN WE 1449 01:10:40,920 --> 01:10:42,200 CAN -- YOU KNOW WE'LL HAVE A 1450 01:10:42,200 --> 01:10:43,400 COUPLE MORE MINUTES FOR 1451 01:10:43,400 --> 01:10:45,000 QUESTIONS IF ANYBODY HAS THEM. 1452 01:10:45,000 --> 01:10:49,280 SO THE OTHER TWO KEY PLAYERS 1453 01:10:49,280 --> 01:10:51,560 IN THIS SPACE ARE THE 1454 01:10:51,560 --> 01:10:52,680 GOVERNMENT ACCOUNTING OFFICE 1455 01:10:52,680 --> 01:10:54,080 AND NATIONAL ACADEMY OF 1456 01:10:54,080 --> 01:10:54,640 DESIGNS. 1457 01:10:54,640 --> 01:10:57,520 THE GOVERNMENT ACCOUNTING 1458 01:10:57,520 --> 01:11:00,920 OFFICE IS A NONPARTISAN ARM OF 1459 01:11:00,920 --> 01:11:02,720 OUR GOVERNMENT THAT THE 1460 01:11:02,720 --> 01:11:05,240 CONGRESS CAN DIRECT TO DO 1461 01:11:05,240 --> 01:11:08,360 PROJECTS LIKE HEY GAO, WE'RE 1462 01:11:08,360 --> 01:11:09,440 GOING TO APPROPRIATE FUNDS FOR 1463 01:11:09,440 --> 01:11:13,080 YOU TO LOOK AND SEE HOW WELL 1464 01:11:13,080 --> 01:11:14,760 INVESTIGATORS ARE ACTUALLY 1465 01:11:14,760 --> 01:11:16,360 FOLLOWING THE INCLUSION 1466 01:11:16,360 --> 01:11:17,760 GUIDELINES, EITHER RELATED TO 1467 01:11:17,760 --> 01:11:21,120 THE NIH GUIDELINES OR THE FDA 1468 01:11:21,120 --> 01:11:21,520 GUIDELINES. 1469 01:11:21,520 --> 01:11:23,400 AND BACK TO THAT EARLIER SLIDE 1470 01:11:23,400 --> 01:11:31,880 WHERE I HAD LIKE 1977 TO 1471 01:11:31,880 --> 01:11:33,080 1994, WHATEVER, IF YOU LOOK 1472 01:11:33,080 --> 01:11:35,080 BACK AT THAT HISTORY, THE GAO 1473 01:11:35,080 --> 01:11:36,320 IS A BIG PLAYER. 1474 01:11:36,320 --> 01:11:38,240 SO THE ONE EXAMPLE I WILL GIVE 1475 01:11:38,240 --> 01:11:41,560 YOU, I MENTIONED IN 1996, THE 1476 01:11:41,560 --> 01:11:44,000 NIH HAD BASICALLY AN 1477 01:11:44,000 --> 01:11:45,040 ENCOURAGEMENT FOR 1478 01:11:45,040 --> 01:11:46,880 INVESTIGATORS TO INCLUDE WOMEN 1479 01:11:46,880 --> 01:11:49,280 AND MINORITIES IN TRIALS. 1480 01:11:49,280 --> 01:11:51,600 THE GAO SAID THAT DID NOT 1481 01:11:51,600 --> 01:11:51,960 WORK. 1482 01:11:51,960 --> 01:11:53,920 JUST ENCOURAGING WAS NOT 1483 01:11:53,920 --> 01:11:54,280 ENOUGH. 1484 01:11:54,280 --> 01:11:56,200 THEY NEEDED MAYBE NOT JUST A 1485 01:11:56,200 --> 01:11:58,840 CARROT BUT A STICK. 1486 01:11:58,840 --> 01:12:01,840 AND WITH THAT STICK, FURTHER 1487 01:12:01,840 --> 01:12:03,920 INVESTIGATIONS BY GAO HAVE 1488 01:12:03,920 --> 01:12:05,640 BEEN CONDUCTED, STILL NOT 1489 01:12:05,640 --> 01:12:08,240 DOING A STELLAR JOB BUT YOU 1490 01:12:08,240 --> 01:12:09,680 CAN SORT OF PLOT IMPROVEMENT. 1491 01:12:09,680 --> 01:12:13,880 SO IF YOU ARE INTERESTED IN 1492 01:12:13,880 --> 01:12:14,920 POLICY IMPLEMENTATION AT THE 1493 01:12:14,920 --> 01:12:17,120 NATIONAL LEVEL, THE GAO IS 1494 01:12:17,120 --> 01:12:19,080 OFTEN A REALLY GREAT PLACE TO 1495 01:12:19,080 --> 01:12:20,720 LOOK FOR NATIONAL EVALUATIONS. 1496 01:12:20,720 --> 01:12:22,400 THE OTHER GROUP THAT PLAYS AN 1497 01:12:22,400 --> 01:12:25,640 IMPORTANT ROLE IS THE NATIONAL 1498 01:12:25,640 --> 01:12:26,440 ACADEMY OF SCIENCES AND THIS 1499 01:12:26,440 --> 01:12:30,000 IS WHAT I WILL CALL A QUASI 1500 01:12:30,000 --> 01:12:31,600 GOVERNMENT BODY IN THAT THE 1501 01:12:31,600 --> 01:12:34,000 SAME WAY CONGRESS CAN ASK THE 1502 01:12:34,000 --> 01:12:35,480 GOVERNMENT ACCOUNTING OFFICE, 1503 01:12:35,480 --> 01:12:38,040 CONGRESS CAN ALSO ASK THE 1504 01:12:38,040 --> 01:12:40,040 NATIONAL ACADEMY OF SCIENCES. 1505 01:12:40,040 --> 01:12:42,160 THE NATIONAL ACADEMY IS MADE 1506 01:12:42,160 --> 01:12:44,920 UP OF EXTRAMURAL INVESTIGATORS 1507 01:12:44,920 --> 01:12:47,280 WHO ARE AT THE TOP OF THEIR 1508 01:12:47,280 --> 01:12:47,640 FIELD. 1509 01:12:47,640 --> 01:12:49,680 THEY HAVE ALL SORTS OF 1510 01:12:49,680 --> 01:12:52,040 COMMITTEES AND SUBCOMMITTEES 1511 01:12:52,040 --> 01:12:55,360 AND THEY -- THE CONGRESS MIGHT 1512 01:12:55,360 --> 01:12:57,760 SAY, OKAY, NATIONAL ACADEMY OF 1513 01:12:57,760 --> 01:12:59,160 SCIENCES, HOW ARE WE DOING 1514 01:12:59,160 --> 01:13:03,040 WITH THE INCLUSION OF WOMEN IN 1515 01:13:03,040 --> 01:13:05,360 CLINICAL TRIALS AS AN UNDER 1516 01:13:05,360 --> 01:13:07,160 REPRESENTED GROUP. 1517 01:13:07,160 --> 01:13:10,400 THEY DO AN INDEPTH 1518 01:13:10,400 --> 01:13:11,400 INVESTIGATION WITH THE HELP OF 1519 01:13:11,400 --> 01:13:12,920 THE STAFF AT THE NATIONAL 1520 01:13:12,920 --> 01:13:13,240 ACADEMY. 1521 01:13:13,240 --> 01:13:14,640 THEY HAVE A GROUP, A 1522 01:13:14,640 --> 01:13:20,600 EMPLOYMENT OF COMMITTEE OF 1523 01:13:20,600 --> 01:13:22,320 EXPERTS IN THE FIELD AND WILL 1524 01:13:22,320 --> 01:13:24,480 OFTEN THEIR RESULTS CAN DRIVE 1525 01:13:24,480 --> 01:13:26,760 POLICY CHANGE THE SAME WAY THE 1526 01:13:26,760 --> 01:13:27,960 GAO MIGHT DRIVE POLICY CHANGE. 1527 01:13:27,960 --> 01:13:30,360 SO I WANTED TO GIVE FOLKS WHO 1528 01:13:30,360 --> 01:13:33,120 MIGHT BE INTERESTED A QUICK 1529 01:13:33,120 --> 01:13:34,240 TOUR OF THAT. 1530 01:13:34,240 --> 01:13:35,520 WE HAVE ABOUT TWO MINUTES FOR 1531 01:13:35,520 --> 01:13:36,440 A QUESTION. 1532 01:13:36,440 --> 01:13:38,840 I ACTUALLY DIDN'T BUILD ANY 1533 01:13:38,840 --> 01:13:40,320 QUESTION TIME IN FOR MYSELF 1534 01:13:40,320 --> 01:13:42,000 BUT I DON'T SEE ANYONE LEAPING 1535 01:13:42,000 --> 01:13:45,240 UP FOR A QUESTION. 1536 01:13:45,240 --> 01:13:53,640 LET ME JUST CHECK THE -- I AM 1537 01:13:53,640 --> 01:13:54,880 GOING TO MULTITASK AND CHECK 1538 01:13:54,880 --> 01:13:55,840 THE DISCUSSION BOARD AND I 1539 01:13:55,840 --> 01:13:57,040 DON'T SEE ANYTHING THERE. 1540 01:13:57,040 --> 01:13:59,120 SO WHAT WE'RE GOING TO DO NOW 1541 01:13:59,120 --> 01:14:01,520 IS TAKE OUR 15-MINUTE BREAK A 1542 01:14:01,520 --> 01:14:02,600 LITTLE EARLIER THAN USUAL. 1543 01:14:02,600 --> 01:14:08,560 WHEN WE COME BACK, WE'RE GOING 1544 01:14:08,560 --> 01:14:15,560 TO WELL COME IETHA LANGFORD 1545 01:14:15,560 --> 01:14:20,000 FROM NIU AND WILL TALK ABOUT 1546 01:14:20,000 --> 01:14:25,440 WHAT DOES IT PRACTICALLY MEAN 1547 01:14:25,440 --> 01:14:35,880 TO U SECOLLUSION USE 1548 01:14:40,160 --> 01:14:46,600 INCLUSION IN YOUR STUDY. 1549 01:14:46,600 --> 01:14:52,600 SO I HAVE PUT UP THE NUMBER 1550 01:14:52,600 --> 01:14:55,240 HERE AND MAYBE YOU CAN FIGURE 1551 01:14:55,240 --> 01:14:56,480 OUT HOW TO PARTICIPATE. 1552 01:14:56,480 --> 01:14:59,200 SO WE WILL HAVE A BREAK AND BE 1553 01:14:59,200 --> 01:15:01,280 BACK AT 10:00 A.M. WHICH IS 15 1554 01:15:01,280 --> 01:15:03,200 MINUTES FROM NOW. 1555 01:15:03,200 --> 01:15:03,760 THANK YOU. 1556 01:15:03,760 --> 01:15:05,440 WELCOME BACK 1557 01:15:05,440 --> 01:15:05,800 EVERYBODY. 1558 01:15:05,800 --> 01:15:08,400 REALLY QUICKLY, I AM GOING TO 1559 01:15:08,400 --> 01:15:14,800 REMIND YOU THAT DURING Dr. 1560 01:15:14,800 --> 01:15:18,600 LANGFORD'S TALK, WE WILL BE 1561 01:15:18,600 --> 01:15:19,240 USING SLIDO. 1562 01:15:19,240 --> 01:15:21,600 THE NUMBER IS IN ANNOUNCEMENTS 1563 01:15:21,600 --> 01:15:24,440 AND E-MAIL AND WITH THAT I 1564 01:15:24,440 --> 01:15:30,440 WILL INTRODUCE Dr. 1565 01:15:30,440 --> 01:15:30,880 AISHA LANGFORD. 1566 01:15:30,880 --> 01:15:37,520 SHE IS ZOOMING IN TODAY FROM 1567 01:15:37,520 --> 01:15:44,360 NIU WHERE SHE IS PROFESSOR OF 1568 01:15:44,360 --> 01:15:50,400 DECISION HEALTH AND SIGNS AND 1569 01:15:50,400 --> 01:15:53,240 IMPORTANTLY IT IS IMPORTANT 1570 01:15:53,240 --> 01:15:58,560 FOR THE TALK TODAY, ALSO 1571 01:15:58,560 --> 01:16:00,080 DIRECTS THE RECRUITMENT CORE 1572 01:16:00,080 --> 01:16:04,680 WHICH IS AN INSTITUTION-WIDE 1573 01:16:04,680 --> 01:16:07,360 EFFORT TO IMPROVE EQUITY AND 1574 01:16:07,360 --> 01:16:10,320 INCLUSION AMONG OTHER THINGS 1575 01:16:10,320 --> 01:16:12,560 AND ADVOCATES IN HER WORK THAT 1576 01:16:12,560 --> 01:16:14,600 ALL PATIENTS ARE INVITED TO 1577 01:16:14,600 --> 01:16:18,560 PARTICIPATE IN CLINICAL TRIALS 1578 01:16:18,560 --> 01:16:21,200 AND THAT UNDER REPRESENTED 1579 01:16:21,200 --> 01:16:22,840 POPULATIONS HAVE EQUAL ACCESS 1580 01:16:22,840 --> 01:16:25,240 WHICH OFTEN MEANS ADDRESSING 1581 01:16:25,240 --> 01:16:25,840 COMMUNICATION BARRIERS. 1582 01:16:25,840 --> 01:16:32,280 SO I THINK Dr. LANGFORD IS A 1583 01:16:32,280 --> 01:16:37,680 PERFECT PERSON TO PICK UP FROM 1584 01:16:37,680 --> 01:16:45,720 WHERE Dr.ASADA AND I AND 1585 01:16:45,720 --> 01:16:47,920 Dr. WENDLER KICKED OFF LAST 1586 01:16:47,920 --> 01:16:48,200 WEEK. 1587 01:16:48,200 --> 01:16:51,000 SO I WILL TURN IT OVER TO YOU. 1588 01:16:51,000 --> 01:16:54,000 >>THANK YOU ALL FOR THAT 1589 01:16:54,000 --> 01:16:55,000 WONDERFUL INTRODUCTION. 1590 01:16:55,000 --> 01:16:56,880 I AM EXCITED TO BE BEFORE YOU 1591 01:16:56,880 --> 01:16:59,480 TODAY AND BEFORE WE GET 1592 01:16:59,480 --> 01:17:01,240 STARTED, IT IS IMPORTANT TO 1593 01:17:01,240 --> 01:17:02,720 SAY THAT CLINICAL TRIALS ARE 1594 01:17:02,720 --> 01:17:07,120 NOT ONE PARTICULAR THING. 1595 01:17:07,120 --> 01:17:08,960 SOMETIMES IN THE COMMUNITY, 1596 01:17:08,960 --> 01:17:11,600 THEY JUMP TO DRUG TRIALS AND 1597 01:17:11,600 --> 01:17:13,440 THINK CLINICAL TRIALS ARE ONLY 1598 01:17:13,440 --> 01:17:17,360 ON DRUGS BUT THERE ARE MANY 1599 01:17:17,360 --> 01:17:22,760 TRIALS THAT FOCUS ON SURGERY 1600 01:17:22,760 --> 01:17:26,200 OR SOME ASPECT OF METICS OR 1601 01:17:26,200 --> 01:17:27,400 SOME ARE FAMILY-FOCUSED SO IT 1602 01:17:27,400 --> 01:17:32,040 MAY BE A MOM OR A DAD AND A 1603 01:17:32,040 --> 01:17:34,240 CHILD OR SIGNIFICANT OTHERS 1604 01:17:34,240 --> 01:17:36,880 AND ALL OF THOSE THINGS MAY 1605 01:17:36,880 --> 01:17:38,840 CHANGE OUR APPROACH TO 1606 01:17:38,840 --> 01:17:40,360 RECRUITMENT AND CONSIDERATION 1607 01:17:40,360 --> 01:17:41,080 FOR RETENTION. 1608 01:17:41,080 --> 01:17:44,160 IN ADDITION TO DIFFERENT TYPES 1609 01:17:44,160 --> 01:17:46,560 OF CHILD AND DIFFERENT 1610 01:17:46,560 --> 01:17:47,680 POPULATIONS, THERE'S ALSO 1611 01:17:47,680 --> 01:17:49,120 DIFFERENT PHASES OF TRIALS. 1612 01:17:49,120 --> 01:17:52,480 YOU ALL KNOW PHASE 1, 2 AND 3 1613 01:17:52,480 --> 01:17:55,440 AND AGAIN AGAIN, ALL OF THAT 1614 01:17:55,440 --> 01:18:00,160 MAY IMPACT YOUR PESK SPECIFIC 1615 01:18:00,160 --> 01:18:02,640 APPROACH TO RECRUITMENT AND 1616 01:18:02,640 --> 01:18:05,400 RETENTION AND BEING PICKED FOR 1617 01:18:05,400 --> 01:18:06,200 TRIALS. 1618 01:18:06,200 --> 01:18:09,480 IN JUNE 2020, I HAD THE 1619 01:18:09,480 --> 01:18:15,240 PRIVILEGE OF WRITING A BLOG 1620 01:18:15,240 --> 01:18:20,320 WITH MY PEER HERE AT NIU AND A 1621 01:18:20,320 --> 01:18:23,520 TRUE FRIEND AND WE WROTE THIS 1622 01:18:23,520 --> 01:18:26,400 BLOG ON FAIRNESS AND INCLUSION 1623 01:18:26,400 --> 01:18:27,880 IN COVID-19 TRIALS BECAUSE 1624 01:18:27,880 --> 01:18:31,320 THERE WAS A LOT OF TALK ABOUT 1625 01:18:31,320 --> 01:18:33,600 MAKING SURE THERE WAS ENOUGH 1626 01:18:33,600 --> 01:18:35,400 DIVERSITY IN THE TRIALS AND 1627 01:18:35,400 --> 01:18:37,400 ALSO HOW THE VULNERABLE 1628 01:18:37,400 --> 01:18:38,600 POPULATION SHOULD BE PROTECTED 1629 01:18:38,600 --> 01:18:39,400 IN THE TRIALS. 1630 01:18:39,400 --> 01:18:43,040 A FEW OF THE TAKEAWAYS OR 1631 01:18:43,040 --> 01:18:44,840 SUGGESTIONS WE PRESENTED IN 1632 01:18:44,840 --> 01:18:47,480 THAT BLOG POST OR PERSPECTIVE 1633 01:18:47,480 --> 01:18:50,040 PIECE WAS REALLY ABOUT PAYING 1634 01:18:50,040 --> 01:18:52,480 CAREFUL ATTENTION TO INCLUSION 1635 01:18:52,480 --> 01:18:53,120 AND EXCLUSION CRITERIA. 1636 01:18:53,120 --> 01:18:55,960 SO BY NATURE OF HOW 1637 01:18:55,960 --> 01:18:57,480 RESEARCHERS ARE ACTUALLY 1638 01:18:57,480 --> 01:18:59,800 DESIGNING THEIR PROTOCOL, THEY 1639 01:18:59,800 --> 01:19:04,240 MAY BE INADVERTENTLY AND 1640 01:19:04,240 --> 01:19:05,160 SYSTEMATICALLY EXCLUDING WHOLE 1641 01:19:05,160 --> 01:19:07,880 GROUPS OF PEOPLE SO WHILE IT 1642 01:19:07,880 --> 01:19:11,200 IS VERY IMPORTANT TO PROTECT 1643 01:19:11,200 --> 01:19:13,240 EXPLOITATION OF ALL THE 1644 01:19:13,240 --> 01:19:16,840 POPULATIONS, WE DON'T WANT TO 1645 01:19:16,840 --> 01:19:20,120 BE OVERLY RESTRICTIVE SO THAT 1646 01:19:20,120 --> 01:19:21,400 PEOPLE ARE EXCLUDED 1647 01:19:21,400 --> 01:19:21,880 UNNECESSARILY. 1648 01:19:21,880 --> 01:19:23,040 IT IS ALSO IMPORTANT TO MAKE 1649 01:19:23,040 --> 01:19:24,320 SURE PEOPLE KNOW ABOUT 1650 01:19:24,320 --> 01:19:26,720 CLINICAL TRIALS AND ARE 1651 01:19:26,720 --> 01:19:28,480 CLEARLY AND EXPLICITLY INVITED 1652 01:19:28,480 --> 01:19:30,080 TO PARTICIPATE WHEN ELIGIBLE. 1653 01:19:30,080 --> 01:19:31,840 SOME OF THE CONVERSATION 1654 01:19:31,840 --> 01:19:33,760 HISTORICALLY, ESPECIALLY WHEN 1655 01:19:33,760 --> 01:19:36,160 IT COMES TO RACIAL AND ETHIC 1656 01:19:36,160 --> 01:19:39,480 POPULATIONS BUT NOT 1657 01:19:39,480 --> 01:19:45,000 EXCLUSIVELY, HAS BEEN THAT 1658 01:19:45,000 --> 01:19:46,080 ETHNIC GROUPS WON'T 1659 01:19:46,080 --> 01:19:49,600 PARTICIPATE BECAUSE OF 1660 01:19:49,600 --> 01:19:51,440 EXPERIMENTS LIKE TUSKOGEE 1661 01:19:51,440 --> 01:19:51,840 EXPERIMENTS. 1662 01:19:51,840 --> 01:19:53,280 HOWEVER, POTENTIALLY A BIGGER 1663 01:19:53,280 --> 01:19:55,160 ISSUE IS THAT A LOT OF 1664 01:19:55,160 --> 01:19:57,280 AMERICANS ARE NOT AWARE OF 1665 01:19:57,280 --> 01:20:07,800 CLINICAL TRIALS AT ALL AND 1666 01:20:22,320 --> 01:20:25,680 MANY TIMES AS WE BECOME MORE 1667 01:20:25,680 --> 01:20:26,640 INCLUSIVE AND THOUGHTFUL, WE 1668 01:20:26,640 --> 01:20:29,720 MAY NEED TO BE MORE THOUGHTFUL 1669 01:20:29,720 --> 01:20:31,000 ABOUT PARTNERING WITH 1670 01:20:31,000 --> 01:20:32,240 COMMUNITY HOSPITALS AND 1671 01:20:32,240 --> 01:20:34,880 QUALIFIED HEALTH CENTERS OR 1672 01:20:34,880 --> 01:20:36,920 EVEN PRISON FOR MEDICAL 1673 01:20:36,920 --> 01:20:38,200 PRACTICES TO EXPAND 1674 01:20:38,200 --> 01:20:38,880 OPPORTUNITIES FOR PEOPLE IN 1675 01:20:38,880 --> 01:20:40,320 THE COMMUNITY TO PARTICIPATE. 1676 01:20:40,320 --> 01:20:41,960 AND THEN FINALLY IT IS 1677 01:20:41,960 --> 01:20:45,040 OBVIOUSLY REALLY IMPORTANT TO 1678 01:20:45,040 --> 01:20:46,040 MINIMIZE PARTICIPATION BURDENS 1679 01:20:46,040 --> 01:20:48,160 AND THAT MIGHT BE THINKING 1680 01:20:48,160 --> 01:20:49,760 ABOUT CONSIDERATIONS WITH 1681 01:20:49,760 --> 01:20:52,200 REGARD TO TRAVEL REIMBURSEMENT 1682 01:20:52,200 --> 01:20:54,040 OR HOW PEOPLE WILL -- WHAT 1683 01:20:54,040 --> 01:20:56,240 THEY WILL NEED TO FULLLY 1684 01:20:56,240 --> 01:20:56,640 PARTICIPATE. 1685 01:20:56,640 --> 01:20:58,440 SO FOR EXAMPLE IF YOU ARE 1686 01:20:58,440 --> 01:21:00,760 DOING A STUDY ON MILD TO 1687 01:21:00,760 --> 01:21:03,080 MODERATE COGNITIVE DECLINE OR 1688 01:21:03,080 --> 01:21:04,240 ALZHEIMER'S, NOT ONLY DO YOU 1689 01:21:04,240 --> 01:21:05,960 HAVE TO ACCOUNT FOR THE 1690 01:21:05,960 --> 01:21:07,480 PARTICIPANT THEMSELVES TO BE 1691 01:21:07,480 --> 01:21:09,440 IN THE STUDY BUT YOU NEED TO 1692 01:21:09,440 --> 01:21:11,280 MAKE PROVISIONS OR SHOULD MAKE 1693 01:21:11,280 --> 01:21:12,560 PROVISIONS FOR THEIR CARETAKER 1694 01:21:12,560 --> 01:21:15,760 OR THE PERSON WHO WOULD HAVE 1695 01:21:15,760 --> 01:21:21,400 TO ACCOMPANY THEM BOTH 1696 01:21:21,400 --> 01:21:23,560 REGARDING ATTENDANTS AND ALSO 1697 01:21:23,560 --> 01:21:24,160 TRANSPORTATION SUPPORT. 1698 01:21:24,160 --> 01:21:27,160 THIS PAPER ON THE SCREEN IS 1699 01:21:27,160 --> 01:21:28,680 ANOTHER COMMENTARY I HAD 1700 01:21:28,680 --> 01:21:29,720 PUBLISHED DURING THE PANDEMIC, 1701 01:21:29,720 --> 01:21:35,120 SO THIS WAS PUBLISHED IN MARCH 1702 01:21:35,120 --> 01:21:39,440 2021 AND IS FOCUSED ON VACCINE 1703 01:21:39,440 --> 01:21:41,160 CLINICAL TRIALS ALTHOUGH THERE 1704 01:21:41,160 --> 01:21:43,120 ARE IDEAS PRESENTED THAT 1705 01:21:43,120 --> 01:21:44,840 REALLY ARE APPLICABLE ACROSS 1706 01:21:44,840 --> 01:21:46,320 CLINICAL TRIALS BUT IN THIS 1707 01:21:46,320 --> 01:21:48,360 PARTICULAR PAPER, I WAS 1708 01:21:48,360 --> 01:21:50,760 FOCUSSED ON HEALTH 1709 01:21:50,760 --> 01:21:51,800 COMMUNICATION AND 1710 01:21:51,800 --> 01:21:53,400 DECISION-MAKING ABOUT VACCINE 1711 01:21:53,400 --> 01:21:55,600 CLINICAL TRIALS FOR PEOPLE. 1712 01:21:55,600 --> 01:21:57,240 I ACTUALLY DID PARTICIPATE IN 1713 01:21:57,240 --> 01:21:59,960 A PHASE 1 CLINICAL TRIAL 1714 01:21:59,960 --> 01:22:00,600 DURING THE PANDEMIC. 1715 01:22:00,600 --> 01:22:03,120 I WAS ACTUALLY ONE OF 48 1716 01:22:03,120 --> 01:22:05,760 PEOPLE AT NIU TO PARTICIPATE 1717 01:22:05,760 --> 01:22:07,520 IN PFIZER'S PHASE 1 CLINICAL 1718 01:22:07,520 --> 01:22:09,240 TRIAL AND IT WAS QUITE 1719 01:22:09,240 --> 01:22:10,280 INTERESTING, BEING A 1720 01:22:10,280 --> 01:22:12,680 PARTICIPANT FOR THE FIRST TIME 1721 01:22:12,680 --> 01:22:15,000 IN A PHASE 1 TRIAL AND I CAN 1722 01:22:15,000 --> 01:22:17,920 TALK MORE ABOUT THAT LATER. 1723 01:22:17,920 --> 01:22:21,520 SO IN THAT COMMENTARY, I 1724 01:22:21,520 --> 01:22:23,160 PRESENTED A GENERAL MODEL OF 1725 01:22:23,160 --> 01:22:23,800 CLINICAL TRIAL PARTICIPATION 1726 01:22:23,800 --> 01:22:25,920 AND AS YOU CAN SEE, THERE ARE 1727 01:22:25,920 --> 01:22:27,320 LOTS OF BULLETS ON THE SCREEN. 1728 01:22:27,320 --> 01:22:29,600 I AM NOT GOING TO GO THROUGH 1729 01:22:29,600 --> 01:22:31,560 EVERY SINGLE BOX AND EVERY 1730 01:22:31,560 --> 01:22:33,840 SINGLE BULLET BUT I THINK THE 1731 01:22:33,840 --> 01:22:35,320 TAKEHOME HERE IS THAT THERE 1732 01:22:35,320 --> 01:22:36,640 ARE SO MANY CONSIDERATIONS WE 1733 01:22:36,640 --> 01:22:38,240 SHOULD BE THINKING ABOUT AS 1734 01:22:38,240 --> 01:22:42,120 STUDY TEAMS AND PIS WHEN WE 1735 01:22:42,120 --> 01:22:44,640 ARE DESIGNING CLINICAL TRIALS 1736 01:22:44,640 --> 01:22:45,920 AND SPEAKING ABOUT WHO CAN 1737 01:22:45,920 --> 01:22:48,120 PARTICIPATE AND HOW TO MAKE 1738 01:22:48,120 --> 01:22:48,680 PARTICIPATION EASIER. 1739 01:22:48,680 --> 01:22:51,320 ONE OF THE BOXES I LIKE TO 1740 01:22:51,320 --> 01:22:53,840 HIGHLIGHT IS THE CLINICAL 1741 01:22:53,840 --> 01:22:55,000 TRIALS CHARACTERISTICS BOX AT 1742 01:22:55,000 --> 01:22:56,000 THE VERY TOP. 1743 01:22:56,000 --> 01:22:57,960 SO EVEN BEFORE WE EVER 1744 01:22:57,960 --> 01:22:59,720 INTRODUCE A CLINICAL TRIAL TO 1745 01:22:59,720 --> 01:23:02,000 A COMMUNITY MEMBER OR PATIENT, 1746 01:23:02,000 --> 01:23:03,240 THE DECISIONS WE MAKE 1747 01:23:03,240 --> 01:23:05,000 SOMETIMES MONTHS OR YEARS IN 1748 01:23:05,000 --> 01:23:07,520 ADVANCE IN THINKING ABOUT THE 1749 01:23:07,520 --> 01:23:14,360 PROTOCOL HAS REAL IMPLICATIONS 1750 01:23:14,360 --> 01:23:15,560 FOR PEOPLE WHO PARTICIPATE SO 1751 01:23:15,560 --> 01:23:17,960 THINGS LIKE THE NUMBER OF 1752 01:23:17,960 --> 01:23:19,000 PROCEDURES AND ASSESSMENTS, 1753 01:23:19,000 --> 01:23:21,760 THE LOCATION OF THE RESEARCH 1754 01:23:21,760 --> 01:23:23,720 SITE, TRAVEL TIME, HOW LONG 1755 01:23:23,720 --> 01:23:26,760 THE TRIAL WILL LAST AND ALSO 1756 01:23:26,760 --> 01:23:28,080 WHAT TYPES OF INCENTIVES YOU 1757 01:23:28,080 --> 01:23:30,960 OFFER AND THE FREQUENCY OF 1758 01:23:30,960 --> 01:23:31,840 THOSE INCENTIVES THEMSELVES 1759 01:23:31,840 --> 01:23:35,600 THAT CAN HAVE A BIG IMPACT ON 1760 01:23:35,600 --> 01:23:36,880 PARTICIPATION OR PERSPECTIVES 1761 01:23:36,880 --> 01:23:38,280 ABOUT WHETHER PEOPLE THINK IT 1762 01:23:38,280 --> 01:23:42,120 IS WORTH THEIR TIME. 1763 01:23:42,120 --> 01:23:44,080 AND THEN THE THOUGHT HERE, A 1764 01:23:44,080 --> 01:23:48,080 LOT OF TIMES IN OUR 1765 01:23:48,080 --> 01:23:49,000 CONSULTATION GUIDE IN 1766 01:23:49,000 --> 01:23:51,520 CONSULTATION WITH OTHER TEAMS, 1767 01:23:51,520 --> 01:23:55,640 WE'RE TALKING EARLY ON ABOUT 1768 01:23:55,640 --> 01:23:56,720 WHAT DEMOGRAPHIC GROUPS YOU 1769 01:23:56,720 --> 01:24:02,640 ARE WANTING TO TARGET FOR YOUR 1770 01:24:02,640 --> 01:24:03,920 INTERVENTION BUT ALSO 1771 01:24:03,920 --> 01:24:05,160 LANGUAGE, THE LANGUAGE SPOKEN 1772 01:24:05,160 --> 01:24:07,880 BY THE TARGET POPULATION, 1773 01:24:07,880 --> 01:24:09,200 HEALTH LITERACY LEVELS, 1774 01:24:09,200 --> 01:24:10,680 CUSTOMS, ALL OF THOSE THINGS 1775 01:24:10,680 --> 01:24:11,760 ARE IMPORTANT TO THINK ABOUT 1776 01:24:11,760 --> 01:24:14,160 EARLY ON AND WHAT I SEE IN MY 1777 01:24:14,160 --> 01:24:16,320 WORK DOING CLINICAL TRIALS IN 1778 01:24:16,320 --> 01:24:17,840 GENERAL AND DOING 1779 01:24:17,840 --> 01:24:19,880 CONSULTATIONS IS THAT 1780 01:24:19,880 --> 01:24:22,520 SOMETIMES THOSE THINGS ARE 1781 01:24:22,520 --> 01:24:23,600 BROUGHT TO PEOPLE'S ATTENTION 1782 01:24:23,600 --> 01:24:25,160 LATE AND YOU ARE ALREADY DOWN 1783 01:24:25,160 --> 01:24:27,160 THE ROAD AND ALREADY HAVE A 1784 01:24:27,160 --> 01:24:29,440 PROBLEM WITH RECRUITMENT. 1785 01:24:29,440 --> 01:24:32,520 IN THAT SAME COMMENTARY, I 1786 01:24:32,520 --> 01:24:36,040 ACTUALLY PRESENT THE ASK 1787 01:24:36,040 --> 01:24:37,160 APPROACH TO CLINICAL TRIAL 1788 01:24:37,160 --> 01:24:39,960 PARTICIPATION AND THAT IS JUST 1789 01:24:39,960 --> 01:24:43,880 TO REMIND US WE NEED TO ASK 1790 01:24:43,880 --> 01:24:47,280 PEOPLE TO PARTICIPATE. 1791 01:24:47,280 --> 01:24:48,920 AND ASK MEANS ASSUME THAT ALL 1792 01:24:48,920 --> 01:24:50,880 PATIENTS WILL WANT TO KNOW 1793 01:24:50,880 --> 01:24:51,680 THEIR OPTIONS. 1794 01:24:51,680 --> 01:24:53,240 SOMETIMES PEOPLE ARE 1795 01:24:53,240 --> 01:24:54,880 UNCOMFORTABLE OR DON'T WANT TO 1796 01:24:54,880 --> 01:24:58,120 HEAR ABOUT IT AND ASSUME A 1797 01:24:58,120 --> 01:24:59,840 MORE NEGATIVE PERSPECTIVE BUT 1798 01:24:59,840 --> 01:25:02,720 JUST ASSUME EVERYONE WANTS TO 1799 01:25:02,720 --> 01:25:09,880 KNOW WHAT THEIR HEALTHCARE 1800 01:25:09,880 --> 01:25:10,600 OPTIONS ARE. 1801 01:25:10,600 --> 01:25:14,360 S TALKS TO SEEK THE COUNCIL 1802 01:25:14,360 --> 01:25:16,200 SELL OF STAKE HOLDERS AND THEN 1803 01:25:16,200 --> 01:25:18,600 K IS KNOW YOUR NUMBERS. 1804 01:25:18,600 --> 01:25:19,680 SO STAKEHOLDERS MAY INCLUDE 1805 01:25:19,680 --> 01:25:22,440 BUT ARE NOT LIMITED TO A LOT 1806 01:25:22,440 --> 01:25:23,840 OF THESE GROUPS IN BULLETS 1807 01:25:23,840 --> 01:25:24,160 HERE. 1808 01:25:24,160 --> 01:25:26,960 MANY OF US WHO DO RESEARCH ARE 1809 01:25:26,960 --> 01:25:37,360 ALWAYS THINKING THE 1810 01:25:40,080 --> 01:25:40,960 RESTAKEHOLDERS ARE 1811 01:25:40,960 --> 01:25:43,800 RESEARCHERS, PATIENTS AND 1812 01:25:43,800 --> 01:25:45,080 CAREGIVERS BUT THERE ARE MANY 1813 01:25:45,080 --> 01:25:47,280 MORE AND EVERY TIME I GIVE 1814 01:25:47,280 --> 01:25:49,440 THIS TALK, SOMEONE WILL ADD A 1815 01:25:49,440 --> 01:25:51,400 BULLET OR BRING UP A GROUP WE 1816 01:25:51,400 --> 01:25:52,920 SHOULD BE THINKING ABOUT. 1817 01:25:52,920 --> 01:25:55,000 SO FOR EXAMPLE, IN THE 1818 01:25:55,000 --> 01:25:57,760 ORIGINAL PAPER, WE HAD SOME 1819 01:25:57,760 --> 01:25:58,440 COMMUNITY-BASED ORGANIZATIONS 1820 01:25:58,440 --> 01:25:59,560 BUT DIDN'T HAVE COMMUNITY 1821 01:25:59,560 --> 01:26:03,240 HEALTH WORKERS SO ONE OF MY 1822 01:26:03,240 --> 01:26:04,480 HEALTH EDUCATORS SAID PEOPLE 1823 01:26:04,480 --> 01:26:06,120 SHOULD THINK ABOUT THAT EARLY 1824 01:26:06,120 --> 01:26:07,520 ON AS WELL. 1825 01:26:07,520 --> 01:26:10,360 SO REALLY THE IDEA IS THROUGH 1826 01:26:10,360 --> 01:26:17,920 EITHER PATIENT ADVOCATES OR 1827 01:26:17,920 --> 01:26:19,520 ADVISORY COUNCILS, MECHANISMS 1828 01:26:19,520 --> 01:26:20,920 TO GET FEEDBACK EARLY ON IN 1829 01:26:20,920 --> 01:26:22,000 THE PROTOCOL OF THE 1830 01:26:22,000 --> 01:26:23,000 DEVELOPMENT PHASE TO MAKE SURE 1831 01:26:23,000 --> 01:26:26,840 WHAT YOU ARE HOPING TO DO IS 1832 01:26:26,840 --> 01:26:28,360 PALATABLE TO YOUR TARGET 1833 01:26:28,360 --> 01:26:29,960 AUDIENCE AND AS MUCH AS 1834 01:26:29,960 --> 01:26:32,240 POSSIBLE, YOU CAN ANTICIPATE 1835 01:26:32,240 --> 01:26:36,280 RECRUITMENT AND RETENTION 1836 01:26:36,280 --> 01:26:38,880 CHALLENGES. 1837 01:26:38,880 --> 01:26:41,120 KNOW YOUR NUMBERS DOES NOT 1838 01:26:41,120 --> 01:26:42,280 REFER TO BLOOD PRESSURE 1839 01:26:42,280 --> 01:26:44,080 ALTHOUGH IT IS GOOD TO KNOW 1840 01:26:44,080 --> 01:26:45,680 YOUR BLOOD PRESSURE NUMBERS 1841 01:26:45,680 --> 01:26:48,200 BUT REALLY ABOUT THINKING 1842 01:26:48,200 --> 01:26:49,960 HOLISTICALLY ON HOW WE TRACK 1843 01:26:49,960 --> 01:26:52,120 NUMBERS ON CLINICAL TRIALS. 1844 01:26:52,120 --> 01:26:58,520 OFTENTIMES IT IS THE ABSOLUTE 1845 01:26:58,520 --> 01:27:00,400 NUMBER OF PATIENTS ENROLLED IN 1846 01:27:00,400 --> 01:27:02,440 A STUDY BUT IT IS IMPORTANT TO 1847 01:27:02,440 --> 01:27:04,720 THINK ABOUT BEFORE YOU GET 1848 01:27:04,720 --> 01:27:06,840 STARTED WHAT IS THE POTENTIAL 1849 01:27:06,840 --> 01:27:07,400 OF ELIGIBLE PATIENTS. 1850 01:27:07,400 --> 01:27:10,480 SO FOR EXAMPLE IF YOU DO A 1851 01:27:10,480 --> 01:27:15,400 POWER ANALYSIS WITH A 1852 01:27:15,400 --> 01:27:24,800 STATUTEISTICIAN AND THEY SAY 1853 01:27:24,800 --> 01:27:35,240 USE THE NUMBER 500 FOR 1854 01:27:36,480 --> 01:27:36,960 STATISTICAL VARIANCE. 1855 01:27:36,960 --> 01:27:39,880 SO IT IS GOOD TO KNOW AT LEAST 1856 01:27:39,880 --> 01:27:42,600 IN THEORY WHO COULD 1857 01:27:42,600 --> 01:27:43,000 PARTICIPATE. 1858 01:27:43,000 --> 01:27:45,680 AND THE FIRST STEP, NOW THE 1859 01:27:45,680 --> 01:27:46,920 PROTOCOL DESIGN IMPACTS 1860 01:27:46,920 --> 01:27:48,200 WHETHER THOSE POTENTIALLY 1861 01:27:48,200 --> 01:27:49,520 ELIGIBLE PEOPLE TO WANT DO 1862 01:27:49,520 --> 01:27:51,600 YOUR STUDY BUT YOU HAVE TO AT 1863 01:27:51,600 --> 01:27:52,960 LEAST KNOW YOU HAVE ENOUGH 1864 01:27:52,960 --> 01:27:54,880 PEOPLE TO BEGIN WITH. 1865 01:27:54,880 --> 01:27:56,880 WE HAVE ALSO BEEN THINKING 1866 01:27:56,880 --> 01:28:00,160 MORE INDEPTH ABOUT THE NUMBER 1867 01:28:00,160 --> 01:28:05,040 OF PEOPLE INVITED BY DIFFERENT 1868 01:28:05,040 --> 01:28:08,120 METHODS SO SOME PEOPLE USE 1869 01:28:08,120 --> 01:28:10,840 PATIENT PORTALS, SOCIAL MEDIA, 1870 01:28:10,840 --> 01:28:13,480 REACHING OUT VIA TEXT MESSAGE 1871 01:28:13,480 --> 01:28:16,120 AND TELEPHONE BUT REALLY 1872 01:28:16,120 --> 01:28:18,160 REACHING OUT TO THE DIFFERENT 1873 01:28:18,160 --> 01:28:19,520 CHANNELS FOR A DIFFERENT 1874 01:28:19,520 --> 01:28:20,520 RESPONSE RATE AND THEN 1875 01:28:20,520 --> 01:28:22,160 THINKING ABOUT THE NUMBER OF 1876 01:28:22,160 --> 01:28:23,480 INTERESTED PEOPLE BUT NOT 1877 01:28:23,480 --> 01:28:23,840 ELIGIBLE. 1878 01:28:23,840 --> 01:28:25,520 SO IF YOU HAVE A THOUSAND 1879 01:28:25,520 --> 01:28:27,720 PEOPLE INTERESTED IN YOUR 1880 01:28:27,720 --> 01:28:38,280 STUDY BUT ONLY 50 OF THOSE ARE 1881 01:29:13,320 --> 01:29:15,440 ACTUALLY ELIGIBLE, THEN YOU 1882 01:29:15,440 --> 01:29:20,320 MAY WANT TO FORM YOUR STUDY 1883 01:29:20,320 --> 01:29:21,480 FROM THAT INFORMATION. 1884 01:29:21,480 --> 01:29:26,120 AND AT WHAT COULD YOU TELL TO 1885 01:29:26,120 --> 01:29:27,080 CLINICAL TRIAL ENROLLMENT, 1886 01:29:27,080 --> 01:29:29,280 THIS IS FROM UNIVERSITY OF 1887 01:29:29,280 --> 01:29:30,120 CALIFORNIA AT SAN FRANCISCO 1888 01:29:30,120 --> 01:29:31,560 AND THEY WERE LOOKING AT THE 1889 01:29:31,560 --> 01:29:34,720 TRAVEL BURDEN IN A VARIETY OF 1890 01:29:34,720 --> 01:29:37,000 THEIR CLINICAL TRIALS THAT 1891 01:29:37,000 --> 01:29:37,440 WERE OFFERED. 1892 01:29:37,440 --> 01:29:40,200 AND THE PATIENT POPULATION 1893 01:29:40,200 --> 01:29:43,600 WERE PATIENTS WHO WERE WITHIN 1894 01:29:43,600 --> 01:29:45,800 THE UC-SAN FRANCISCO CLINICAL 1895 01:29:45,800 --> 01:29:47,440 TRIAL MANAGEMENT DATABASE AND 1896 01:29:47,440 --> 01:29:49,600 THEY SPECIFICALLY LOOKED AT 1897 01:29:49,600 --> 01:29:58,680 PEOPLE WHO WERE ENROLLED IN A 1898 01:29:58,680 --> 01:30:00,960 BREAST, GENITOURINARY OR 1899 01:30:00,960 --> 01:30:01,560 GASTROINTESTINAL CANCER 1900 01:30:01,560 --> 01:30:04,720 CLINICAL TRIAL OVER A DECADE, 1901 01:30:04,720 --> 01:30:07,320 1993 TO 2014. 1902 01:30:07,320 --> 01:30:10,160 THEY ALSO EVALUATED A 1903 01:30:10,160 --> 01:30:14,240 HOUSEHOLD ZIP CODE, ETHNICITY, 1904 01:30:14,240 --> 01:30:16,000 STUDY SPONSOR AND THE YEAR THE 1905 01:30:16,000 --> 01:30:21,120 CONSENT FORM WAS SIGNED. 1906 01:30:21,120 --> 01:30:23,160 SO THEIR MAIN OUTCOME OF 1907 01:30:23,160 --> 01:30:24,240 INTEREST WAS THE DISTANCE 1908 01:30:24,240 --> 01:30:25,480 TRAVELED FROM THEIR HOME TO 1909 01:30:25,480 --> 01:30:31,240 THE MEDICAL CENTER AND THEY 1910 01:30:31,240 --> 01:30:32,640 USED THAT USING GOOGLE MAPS 1911 01:30:32,640 --> 01:30:34,520 AND REALLY THE MAIN FOCUS WAS 1912 01:30:34,520 --> 01:30:35,560 THE RELATIONSHIP OF DISTANCE 1913 01:30:35,560 --> 01:30:38,080 WITH THESE THINGS I MENTIONED 1914 01:30:38,080 --> 01:30:40,040 BEFORE, PHASE OF TRIAL, 1915 01:30:40,040 --> 01:30:42,720 HOUSEHOLD INCOME AND RACE AND 1916 01:30:42,720 --> 01:30:43,640 ETHNICITY SPECIFICALLY. 1917 01:30:43,640 --> 01:30:46,800 SO THE GENERAL RESULTS WERE 1918 01:30:46,800 --> 01:30:50,280 THAT ABOUT 1600 PATIENTS WERE 1919 01:30:50,280 --> 01:30:52,640 ENROLLED IN THESE TYPES OF 1920 01:30:52,640 --> 01:30:54,160 CLINICAL TRIALS OVER THAT TIME 1921 01:30:54,160 --> 01:30:56,920 PERIOD, THE MOST BEING IN A 1922 01:30:56,920 --> 01:30:59,440 BREAST CANCER CLINICAL TRIAL. 1923 01:30:59,440 --> 01:31:03,200 AND THE OVERALL MEDIAN ONE-WAY 1924 01:31:03,200 --> 01:31:05,640 DISTANCE TRAVELED FROM HOME TO 1925 01:31:05,640 --> 01:31:09,880 STUDY SITE WAS ABOUT 26 MILES 1926 01:31:09,880 --> 01:31:11,520 AND FOR THOSE OF WHO YOU ARE 1927 01:31:11,520 --> 01:31:13,120 FAMILIAR OR NOT WITH THE SAN 1928 01:31:13,120 --> 01:31:15,280 FRANCISCO BAY AREA, THERE IS 1929 01:31:15,280 --> 01:31:16,560 PUBLIC TRANSPORTATION BUT ONLY 1930 01:31:16,560 --> 01:31:19,200 MOST HELPFUL IF YOU LIVE IN A 1931 01:31:19,200 --> 01:31:20,200 PARTICULAR AREA OF THE SAN 1932 01:31:20,200 --> 01:31:21,560 FRANCISCO BAY AREA AND ARE 1933 01:31:21,560 --> 01:31:22,800 ACTUALLY FROM THAT AREA. 1934 01:31:22,800 --> 01:31:25,640 A LOT OF PEOPLE DO HAVE CARS 1935 01:31:25,640 --> 01:31:27,280 AND HAVE TO DRIVE BECAUSE OF 1936 01:31:27,280 --> 01:31:29,920 HOW SPREAD OUT IT IS. 1937 01:31:29,920 --> 01:31:32,280 ADDITIONAL RESULTS WERE THAT 1938 01:31:32,280 --> 01:31:33,920 THE LONGEST DISTANCE TRAVELED 1939 01:31:33,920 --> 01:31:36,440 WERE FOR NIH SPONSORED TRIALS 1940 01:31:36,440 --> 01:31:39,160 SO THOSE HAD THE MEDIAN TRAVEL 1941 01:31:39,160 --> 01:31:40,720 BURDEN OF ABOUT 39 MILES AND 1942 01:31:40,720 --> 01:31:43,200 THEN FOR PEOPLE ENROLLED IN 1943 01:31:43,200 --> 01:31:45,040 PHASE 1 HEALTH, THOSE STUDIES 1944 01:31:45,040 --> 01:31:48,440 ACTUALLY HAD THE LONGEST 1945 01:31:48,440 --> 01:31:52,880 DISTANCE TRAVELED OF ABOUT 1946 01:31:52,880 --> 01:31:53,240 41 MILES. 1947 01:31:53,240 --> 01:31:54,720 AND ADDITIONALLY, PATIENTS WHO 1948 01:31:54,720 --> 01:31:57,760 CAME FROM LOWER INCOME AREAS 1949 01:31:57,760 --> 01:31:59,680 ACTUALLY REPORTED OR IT WAS 1950 01:31:59,680 --> 01:32:01,280 ESTABLISHED THEY TRAVELED 1951 01:32:01,280 --> 01:32:02,840 LONGER DISTANCES COMPARED TO 1952 01:32:02,840 --> 01:32:03,520 PATIENTS FROM HIGHER INCOME 1953 01:32:03,520 --> 01:32:07,040 AREAS AND THAT WAS A 1954 01:32:07,040 --> 01:32:09,880 DIFFERENT, PRETTY SIGNIFICANT 1955 01:32:09,880 --> 01:32:11,600 DIFFERENCE OF ABOUT 58 MILES 1956 01:32:11,600 --> 01:32:13,040 VERSUS 18 MILES. 1957 01:32:13,040 --> 01:32:18,200 SO IF YOU THINK ABOUT 1958 01:32:18,200 --> 01:32:19,360 PARTICULARLY ALL PATIENTS 1959 01:32:19,360 --> 01:32:20,760 COMING TO PHASE 1 WHERE YOU 1960 01:32:20,760 --> 01:32:23,040 MAY HAVE MORE VISITS, MAY BE 1961 01:32:23,040 --> 01:32:25,560 SICK OR NOT, THAT IS 1962 01:32:25,560 --> 01:32:28,480 DEFINITELY NOTE WORTHY TO IF 1963 01:32:28,480 --> 01:32:29,800 GIVE OUT. 1964 01:32:29,800 --> 01:32:32,000 SO IN SUMMARY THEY FOUND IN 1965 01:32:32,000 --> 01:32:33,800 THIS PARTICULAR STUDY THE 1966 01:32:33,800 --> 01:32:34,760 HIGHER TRAVEL BURDEN WAS 1967 01:32:34,760 --> 01:32:37,440 RELATED TO PEOPLE WHO WERE IN 1968 01:32:37,440 --> 01:32:40,000 PHASE 1 STUDIES, NIH-SPONSORED 1969 01:32:40,000 --> 01:32:41,600 STUDIES AND THAT PEOPLE FROM 1970 01:32:41,600 --> 01:32:43,920 LOWER INCOME AREAS HAVE THE 1971 01:32:43,920 --> 01:32:45,160 GREATEST TRAVEL BURDEN. 1972 01:32:45,160 --> 01:32:48,720 NOW I WANT TO FLASH FORWARD TO 1973 01:32:48,720 --> 01:32:50,840 ANOTHER STUDY I HAVE FOUND 1974 01:32:50,840 --> 01:32:51,960 QUITE INTERESTING. 1975 01:32:51,960 --> 01:32:54,360 ONE OF MY COLLEAGUES IS A 1976 01:32:54,360 --> 01:32:56,240 COAUTHOR ON THIS PAPER BUT 1977 01:32:56,240 --> 01:32:57,640 THIS WAS PUBLISHED EARLIER 1978 01:32:57,640 --> 01:33:01,160 THIS YEAR IN FEBRUARY AND THEY 1979 01:33:01,160 --> 01:33:11,200 COMPARED THE RACIAL, ETHNIC 1980 01:33:11,200 --> 01:33:12,680 AND GEOGRAPHIC DIVERSITY TO 1981 01:33:12,680 --> 01:33:17,920 THOSE INVOLVED IN A TRAVEL 1982 01:33:17,920 --> 01:33:23,320 BASED COVID-19 CLINICAL TRIAL 1983 01:33:23,320 --> 01:33:33,920 AND A IN-HOUSE COVID-19 TRIAL. 1984 01:33:40,200 --> 01:33:45,960 SO THIS WAS FOR 1410 1985 01:33:45,960 --> 01:33:46,440 PARTICIPANTS -- 1986 01:33:46,440 --> 01:33:47,800 >> HEY, AISHA, I THOUGHT THAT 1987 01:33:47,800 --> 01:33:50,000 QUESTION WAS FOR THE GROUP. 1988 01:33:50,000 --> 01:33:51,880 >>OH, I AM SORRY. 1989 01:33:51,880 --> 01:33:54,160 >>I PUT IT IN AS A QUESTION, 1990 01:33:54,160 --> 01:33:56,760 YOU KNOW, JUST TO GET THE 1991 01:33:56,760 --> 01:33:59,600 FOLKS' RESPONSE OF WHETHER OR 1992 01:33:59,600 --> 01:34:02,800 NOT THEY THOUGHT THAT HAVING A 1993 01:34:02,800 --> 01:34:06,040 REMOTE SITE WOULD INCREASE 1994 01:34:06,040 --> 01:34:07,160 DIVERSITY. 1995 01:34:07,160 --> 01:34:09,160 SO I OPENED THE POLL. 1996 01:34:09,160 --> 01:34:12,440 >> OKAY, I AM SORRY, I MISSED 1997 01:34:12,440 --> 01:34:15,560 THAT E-MAIL BUT IT IS A GOOD 1998 01:34:15,560 --> 01:34:16,920 QUESTION AND WHEN YOU GET THE 1999 01:34:16,920 --> 01:34:18,360 RESULTS, I WOULD BE CURIOUS TO 2000 01:34:18,360 --> 01:34:21,440 SEE WHAT PEOPLE -- 2001 01:34:21,440 --> 01:34:23,520 >>THAT'S OKAY, WHAT THEIR 2002 01:34:23,520 --> 01:34:31,920 INSTITUTIONS ARE. -- 2003 01:34:31,920 --> 01:34:32,360 INTUITIONS WERE. 2004 01:34:32,360 --> 01:34:35,360 SO WE ARE GETTING VOTES IN AND 2005 01:34:35,360 --> 01:34:37,840 MY GUESS IS IF THEY ARE PAYING 2006 01:34:37,840 --> 01:34:39,160 ATTENTION, THEY WILL GET THE 2007 01:34:39,160 --> 01:34:40,400 ANSWER YOU ARE LIKELY TO 2008 01:34:40,400 --> 01:34:40,800 PRESENT. 2009 01:34:40,800 --> 01:34:42,640 I HAVE YOUR LATEST QUESTIONS 2010 01:34:42,640 --> 01:34:44,520 BUILT IN AS WELL. 2011 01:34:44,520 --> 01:34:45,920 >>OKAY, YEAH, NO PROBLEM. 2012 01:34:45,920 --> 01:34:48,400 I ACTUALLY SOMETIMES HAVE A 2013 01:34:48,400 --> 01:34:49,320 DIFFERENT LIKE DIFFERENT 2014 01:34:49,320 --> 01:34:52,360 QUESTIONS I TAKE IN AND OUT SO 2015 01:34:52,360 --> 01:34:54,360 I THOUGHT I HAD LEFT IN A 2016 01:34:54,360 --> 01:34:55,440 DIDN'T QUESTION BUT WILL BE 2017 01:34:55,440 --> 01:34:57,720 INTERESTING TO SEE WHAT PEOPLE 2018 01:34:57,720 --> 01:34:58,000 SAY. 2019 01:34:58,000 --> 01:34:58,720 >>NO PROBLEM. 2020 01:34:58,720 --> 01:35:03,040 SO HERE IS THE ANSWER, QUOTE 2021 01:35:03,040 --> 01:35:05,600 UNQUOTE, 97 PERCENT SAID YES 2022 01:35:05,600 --> 01:35:07,680 INCLUDING REMOTE TRIALS IS 2023 01:35:07,680 --> 01:35:09,360 LIKELY TO INCREASE DIVERSITY 2024 01:35:09,360 --> 01:35:11,640 AND 3 PERCENT SAID NO. 2025 01:35:11,640 --> 01:35:14,600 SO LET'S SEE WHAT THE REAL 2026 01:35:14,600 --> 01:35:16,000 ANSWER IS. 2027 01:35:16,000 --> 01:35:16,360 [LAUGHTER] 2028 01:35:16,360 --> 01:35:17,800 >>YES, SO IT WAS A COHORT 2029 01:35:17,800 --> 01:35:21,760 STUDY AND THEY DID SECONDARY 2030 01:35:21,760 --> 01:35:23,480 ANALYSIS OF ABOUT 1400 PEOPLE 2031 01:35:23,480 --> 01:35:26,360 ENROLLED IN ONE OF THREE 2032 01:35:26,360 --> 01:35:27,080 COVID-19 STUDIES CONDUCTED 2033 01:35:27,080 --> 01:35:28,240 EARLY ON IN THE PANDEMIC. 2034 01:35:28,240 --> 01:35:33,120 AND ALL OF YOU CAN NOW BE PAID 2035 01:35:33,120 --> 01:35:34,520 CONSULTANTS FOR THESE TRIALS 2036 01:35:34,520 --> 01:35:36,120 BECAUSE THEY FOUND REMOTE 2037 01:35:36,120 --> 01:35:38,680 CLINICAL TRIALS THAT IT HAD AN 2038 01:35:38,680 --> 01:35:40,560 ELEMENT OF ONLINE RECRUITMENT 2039 01:35:40,560 --> 01:35:43,960 HAD SIGNIFICANTLY BETTER AND 2040 01:35:43,960 --> 01:35:47,000 INCREASED RACIAL, ETHNIC AND 2041 01:35:47,000 --> 01:35:48,440 GEOGRAPHICAL DIVERSITY AND ONE 2042 01:35:48,440 --> 01:35:50,400 OF THEIR CONCLUSIONS WERE THAT 2043 01:35:50,400 --> 01:35:52,600 THE FINDINGS SUGGEST THAT 2044 01:35:52,600 --> 01:35:54,440 CLINICAL TRIALS WITH ONLINE 2045 01:35:54,440 --> 01:35:55,960 ADVERTISING MAY BE CONSIDERED 2046 01:35:55,960 --> 01:35:59,280 AS A STRATEGY TO INCLUDE 2047 01:35:59,280 --> 01:36:01,200 DIVERSITY AMONG PARTICIPANTS. 2048 01:36:01,200 --> 01:36:06,920 SO THEY DID SOME 2049 01:36:06,920 --> 01:36:09,280 ADVERTISEMENT SPECIFICALLY ON 2050 01:36:09,280 --> 01:36:10,760 SOCIAL MEDIA PLATFORMS SO YOU 2051 01:36:10,760 --> 01:36:13,840 ALL GET THE GRADE. 2052 01:36:13,840 --> 01:36:16,720 >>AND THEY PROVED THE PROOF 2053 01:36:16,720 --> 01:36:19,400 OF CONCEPT SO FOLKS HAVE 2054 01:36:19,400 --> 01:36:21,520 DOWNLOADED SLIDO AND ARE 2055 01:36:21,520 --> 01:36:22,760 ENGAGING SO THAT IS GOOD FOR 2056 01:36:22,760 --> 01:36:25,840 OUR NEXT QUESTION AS WELL. 2057 01:36:25,840 --> 01:36:26,280 >>OH, GREAT. 2058 01:36:26,280 --> 01:36:29,120 SO I WILL KIND OF PUT A CAVEAT 2059 01:36:29,120 --> 01:36:31,600 IN HERE BUT WE HAVE HAD VERY 2060 01:36:31,600 --> 01:36:32,320 INTERESTING CONVERSATIONS OVER 2061 01:36:32,320 --> 01:36:34,280 THE LAST COUPLE OF YEARS 2062 01:36:34,280 --> 01:36:36,080 SPECIFICALLY WITH COVID BUT 2063 01:36:36,080 --> 01:36:38,480 JUST IN GENERAL ABOUT HOW, 2064 01:36:38,480 --> 01:36:41,920 WHEN IF AT ALL YOU SHOULD USE 2065 01:36:41,920 --> 01:36:44,760 SOCIAL MEDIA ADVERTISEMENT AND 2066 01:36:44,760 --> 01:36:46,600 PAID ADVERTISEMENT BECAUSE 2067 01:36:46,600 --> 01:36:47,840 DIFFERENT STUDY TEAMS 2068 01:36:47,840 --> 01:36:51,200 SOMETIMES WANT TO GO TO THE 2069 01:36:51,200 --> 01:36:55,080 SUBWAY OR DOING A FACEBOOK AD 2070 01:36:55,080 --> 01:36:58,400 AND DEPENDING ON THE STUDY OF 2071 01:36:58,400 --> 01:36:59,800 THE CONTEXT, SOMETIMES WE FIND 2072 01:36:59,800 --> 01:37:02,480 IT HAS NOT YIELDED NECESSARILY 2073 01:37:02,480 --> 01:37:03,960 ABOVE AND BEYOND AND CAN COST 2074 01:37:03,960 --> 01:37:05,080 A LOT OF MONEY. 2075 01:37:05,080 --> 01:37:08,440 SO I THINK IT IS A NUANCED 2076 01:37:08,440 --> 01:37:09,240 CONVERSATION AND REALLY 2077 01:37:09,240 --> 01:37:10,280 DEPENDS ON THE SCOPE AND WHAT 2078 01:37:10,280 --> 01:37:12,720 YOU ARE TRYING TO DO AND WHAT 2079 01:37:12,720 --> 01:37:14,840 OTHER THINGS YOU TRIED. 2080 01:37:14,840 --> 01:37:21,520 SO NOW I WANT TO TALK A LITTLE 2081 01:37:21,520 --> 01:37:32,040 BIT ABOUT FINDINGS THAT ARE 2082 01:37:36,240 --> 01:37:46,720 KEY IN RESEARCH AND I GOT THIS 2083 01:37:49,000 --> 01:37:51,200 SCREEN SHOT FROM A STUDY AND 2084 01:37:51,200 --> 01:37:53,720 MANY FOLKS SAY WE NEED 2085 01:37:53,720 --> 01:37:56,160 DIVERSITY BUT DEPENDING ON 2086 01:37:56,160 --> 01:37:58,120 CONTEXT, YOU MAY WANT 2087 01:37:58,120 --> 01:38:01,400 DIVERSITY ON ABILITY LEVELS. 2088 01:38:01,400 --> 01:38:03,920 OR AGE, OR SOCIOECONOMIC 2089 01:38:03,920 --> 01:38:05,520 STATUS OR GEOGRAPHY OR 2090 01:38:05,520 --> 01:38:07,360 DIVERSITY IN EXPERIENCE OR 2091 01:38:07,360 --> 01:38:09,200 JUST LIVED EXPERIENCE, PERIOD, 2092 01:38:09,200 --> 01:38:12,640 OR DIVERSITY IN THE ACTUALLY 2093 01:38:12,640 --> 01:38:13,440 DISEASE MANIFESTATION ITSELF. 2094 01:38:13,440 --> 01:38:16,000 SO I AM ALWAYS ASKING STUDY 2095 01:38:16,000 --> 01:38:17,920 TEAMS WHEN THEY SAY WE NEED 2096 01:38:17,920 --> 01:38:19,320 DIVERSITY, I SAY WHAT TYPE AND 2097 01:38:19,320 --> 01:38:22,320 WHY AND WHY DO YOU THINK THAT 2098 01:38:22,320 --> 01:38:24,080 PARTICULAR DIVERSITY WILL DO 2099 01:38:24,080 --> 01:38:24,880 FOR YOUR STUDY? 2100 01:38:24,880 --> 01:38:27,720 AND AGAIN THIS WHOLE ISSUE OF 2101 01:38:27,720 --> 01:38:29,280 RACIAL AND ETHIC DIVERSITY IS 2102 01:38:29,280 --> 01:38:30,960 REALLY IMPORTANT BUT YOU KNOW 2103 01:38:30,960 --> 01:38:33,160 DEPENDING ON WHO YOU TALK TO, 2104 01:38:33,160 --> 01:38:41,200 PEOPLE WILL SAY WELL, RACE AND 2105 01:38:41,200 --> 01:38:43,000 ETHNICITY, THOSE ARE SOCIAL 2106 01:38:43,000 --> 01:38:44,240 CONSTRUCTS AND YOU DON'T WANT 2107 01:38:44,240 --> 01:38:49,440 TO PROMOTE THIS IDEA OF 2108 01:38:49,440 --> 01:38:50,120 INFERIORITY. 2109 01:38:50,120 --> 01:38:52,080 SO THERE IS I WILL SAY OVER 2110 01:38:52,080 --> 01:38:55,440 THE YEARS IN TALKING TO MY 2111 01:38:55,440 --> 01:38:57,040 COLLEAGUES A RANGE IN HOW WE 2112 01:38:57,040 --> 01:38:59,360 SHOULD BE THINKING ABOUT 2113 01:38:59,360 --> 01:39:09,800 ETHNICI ITY IN TRIALS. 2114 01:39:10,400 --> 01:39:17,280 SO I SAW THIS FROM A STUDY 2115 01:39:17,280 --> 01:39:20,440 THAT HAD THE DEFINITION OF 2116 01:39:20,440 --> 01:39:22,360 EQUITY, THE REMOVAL OF 2117 01:39:22,360 --> 01:39:25,680 SYSTEMIC BARRIERS AND BIASES 2118 01:39:25,680 --> 01:39:26,960 ENABLING ALL STEROIDS HAVE 2119 01:39:26,960 --> 01:39:28,800 EQUAL OPPORTUNITY TO ACCESS 2120 01:39:28,800 --> 01:39:33,000 AND BENEFIT FROM THE PROGRAM. 2121 01:39:33,000 --> 01:39:34,600 AND THEN I ALSO LIKED THAT 2122 01:39:34,600 --> 01:39:39,080 THIS GROUP FROM CANADA, THEIR 2123 01:39:39,080 --> 01:39:41,160 DEFINITION OF INCLUSION IS THE 2124 01:39:41,160 --> 01:39:43,800 PRACTICE OF ENSURING THAT ALL 2125 01:39:43,800 --> 01:39:45,040 INDIVIDUALS ARE VALUED AND 2126 01:39:45,040 --> 01:39:46,560 RESPECTED FOR THEIR 2127 01:39:46,560 --> 01:39:49,960 CONTRIBUTIONS AND ARE EQUALLY 2128 01:39:49,960 --> 01:39:50,440 SUPPORTED. 2129 01:39:50,440 --> 01:39:51,920 AND AGAIN THESE DEFINITIONS 2130 01:39:51,920 --> 01:39:55,120 WERE FROM A BROADER CONTEXT OF 2131 01:39:55,120 --> 01:39:56,400 WORKFORCE DEVELOPMENT BUT IF 2132 01:39:56,400 --> 01:39:58,280 YOU THINK OF THAT IN THE 2133 01:39:58,280 --> 01:39:59,960 CONTEXT OF CLINICAL TRIALS, 2134 01:39:59,960 --> 01:40:01,720 WHAT BUILD AN INDIVIDUAL NEED 2135 01:40:01,720 --> 01:40:04,440 TO FEEL RESPECTED AND VALID 2136 01:40:04,440 --> 01:40:05,520 FOR THEIR CONTRIBUTIONS AND 2137 01:40:05,520 --> 01:40:08,040 SUPPORTED TO THEY CAN BE 2138 01:40:08,040 --> 01:40:14,080 SUCCESSFUL AT COMPLETING A 2139 01:40:14,080 --> 01:40:15,760 CLINICAL TRIAL? 2140 01:40:15,760 --> 01:40:17,480 SO HE HOLLY, DO WE HAVE A 2141 01:40:17,480 --> 01:40:19,120 SLIDE OVER THERE ONE? 2142 01:40:19,120 --> 01:40:19,720 >>WE DO. 2143 01:40:19,720 --> 01:40:21,640 >>OKAY, THAT WAS WHAT I HAD 2144 01:40:21,640 --> 01:40:22,520 IN MY HEAD. 2145 01:40:22,520 --> 01:40:22,840 GREAT. 2146 01:40:22,840 --> 01:40:24,400 SO THIS QUESTION IS HOW WOULD 2147 01:40:24,400 --> 01:40:25,800 YOU ENSURE THAT POTENTIALLY 2148 01:40:25,800 --> 01:40:27,080 ALL ELIGIBLE PEOPLE ARE 2149 01:40:27,080 --> 01:40:29,120 INVITED TO CONSIDER CLINICAL 2150 01:40:29,120 --> 01:40:29,480 TRIALS. 2151 01:40:29,480 --> 01:40:36,720 >>AND THIS ONE IS A CHECK BOX 2152 01:40:36,720 --> 01:40:41,280 SO FEEL FREE TO BE CONCISE AS 2153 01:40:41,280 --> 01:40:44,720 THAT WOULD BE HELPFUL SO I CAN 2154 01:40:44,720 --> 01:40:47,920 READ OUT ALL THEIR LOVELY 2155 01:40:47,920 --> 01:40:48,720 RESPONSES. 2156 01:40:48,720 --> 01:40:50,360 OH, SO SOMEONE SAID HOW ABOUT 2157 01:40:50,360 --> 01:41:00,880 USING THE ASK PROTOCOL AND 2158 01:41:02,360 --> 01:41:03,480 UNFORTUNATELY CHIMED IN AS 2159 01:41:03,480 --> 01:41:05,760 ANONYMOUS SO WE CAN'T GIVE 2160 01:41:05,760 --> 01:41:08,320 THEM IT THE $20 THAT... 2161 01:41:08,320 --> 01:41:08,800 [LAUGHTER] 2162 01:41:08,800 --> 01:41:12,720 ANYMORE IDEAS OUT THERE FOLKS? 2163 01:41:12,720 --> 01:41:13,280 TRANSPARENCY? 2164 01:41:13,280 --> 01:41:15,360 OUTREACH IN MULTIPLE AVENUES. 2165 01:41:15,360 --> 01:41:22,000 HOW ABOUT INVITE LITERALLY 2166 01:41:22,000 --> 01:41:22,600 EVERYONE? 2167 01:41:22,600 --> 01:41:24,200 USE E-MAIL AND TEXT. 2168 01:41:24,200 --> 01:41:28,600 OH, GOSH, WE HAVE A LOT NOW, 2169 01:41:28,600 --> 01:41:30,560 CVS, GOOD MARKETING, AWARENESS 2170 01:41:30,560 --> 01:41:35,240 THROUGH VARIOUS SOCIAL MEDIA 2171 01:41:35,240 --> 01:41:38,240 PLATFORMS, LET'S SEE, 2172 01:41:38,240 --> 01:41:42,080 ADVERTISING USING A NUMBER OF 2173 01:41:42,080 --> 01:41:44,320 DIFFERENT METHODS, MAKE IT 2174 01:41:44,320 --> 01:41:45,720 VISIBLE, LOTS OF GOOD IDEAS 2175 01:41:45,720 --> 01:41:48,040 WHICH I WILL SHARE WITH YOU 2176 01:41:48,040 --> 01:41:48,520 LATER. 2177 01:41:48,520 --> 01:41:50,680 >>YES, THOSE ARE ALL 2178 01:41:50,680 --> 01:41:52,400 EXCELLENT IDEAS AND WHOEVER -- 2179 01:41:52,400 --> 01:41:54,000 THESE ARE ALL WONDERFUL IDEAS. 2180 01:41:54,000 --> 01:41:57,240 I THINK THE IDEA, WHOEVER SAID 2181 01:41:57,240 --> 01:41:58,600 LITERALLY INVITING EVERYONE, I 2182 01:41:58,600 --> 01:42:01,840 WANT TO TALK NOW ABOUT OPT-OUT 2183 01:42:01,840 --> 01:42:03,000 VERSUS OPT-IN SYSTEMS AND SOME 2184 01:42:03,000 --> 01:42:05,080 OF YOU MAY BE FAMILIAR WITH 2185 01:42:05,080 --> 01:42:05,440 THOSE. 2186 01:42:05,440 --> 01:42:10,200 AN EXAMPLE OF AN OPT-OUT 2187 01:42:10,200 --> 01:42:17,120 SYSTEM WOULD BE A STRATEGY WE 2188 01:42:17,120 --> 01:42:18,640 USE AT NIU HEALTH. 2189 01:42:18,640 --> 01:42:23,840 SO IN JANUARY WE CHANGED OUR 2190 01:42:23,840 --> 01:42:24,880 PRACTICES TO INCLUDE THAT 2191 01:42:24,880 --> 01:42:26,880 INDIVIDUALS COULD BE DIRECTLY 2192 01:42:26,880 --> 01:42:28,680 CONTACTED FOR RESEARCH RELATED 2193 01:42:28,680 --> 01:42:30,400 OPPORTUNITIES AND THERE WAS A 2194 01:42:30,400 --> 01:42:33,120 LOT OF DISCUSSION, ANGST BACK 2195 01:42:33,120 --> 01:42:34,480 AND FORTH LEADING UP TO THAT 2196 01:42:34,480 --> 01:42:37,440 BUT WE DECIDED TO TAKE THE 2197 01:42:37,440 --> 01:42:38,840 STEP REALLY AND IT IS THE 2198 01:42:38,840 --> 01:42:40,320 PRINCIPLE THAT PATIENTS SHOULD 2199 01:42:40,320 --> 01:42:42,880 HAVE THE OPPORTUNITY TO HAVE 2200 01:42:42,880 --> 01:42:44,560 DIRECT TO PATIENT INVITATION. 2201 01:42:44,560 --> 01:42:51,760 AND ALSO BECAUSE WHEN YOU 2202 01:42:51,760 --> 01:42:54,280 THINK WITH -- ABOUT EQUITY IF 2203 01:42:54,280 --> 01:42:56,360 YOUR PATIENT NEVER KNOWS ABOUT 2204 01:42:56,360 --> 01:42:59,560 THE CLINICAL TRIAL, THAT CAN 2205 01:42:59,560 --> 01:43:00,600 CREATE BIAS. 2206 01:43:00,600 --> 01:43:02,880 AND HISTORICALLY ONE OF THE 2207 01:43:02,880 --> 01:43:05,720 MAIN WAYS PEOPLE LEARN ABOUT 2208 01:43:05,720 --> 01:43:09,480 CLINICAL TRIALS WOULD BE BASED 2209 01:43:09,480 --> 01:43:12,160 ON THE CLINICIAN OFFERING, IF 2210 01:43:12,160 --> 01:43:14,120 THE CLINICIAN KNOWS ALL THE 2211 01:43:14,120 --> 01:43:15,080 TRIALS AVAILABLE, WHETHER THEY 2212 01:43:15,080 --> 01:43:16,680 OFFER IT TO ALL PATIENTS AND 2213 01:43:16,680 --> 01:43:18,440 MAYBE THEY DON'T HAVE THE TIME 2214 01:43:18,440 --> 01:43:22,440 OR ARE NOT NECESSARILY AWARDED 2215 01:43:22,440 --> 01:43:23,720 FOR HAVING CONVERSATIONS FOR 2216 01:43:23,720 --> 01:43:26,280 CLINICAL TRIALS SO IF WE RELY 2217 01:43:26,280 --> 01:43:28,120 ON A GATEKEEPER SYSTEM, THERE 2218 01:43:28,120 --> 01:43:29,200 ARE OBVIOUSLY PROBLEMS WITH 2219 01:43:29,200 --> 01:43:29,960 THAT. 2220 01:43:29,960 --> 01:43:33,560 SO WE MOVED TO AN OPT-IN 2221 01:43:33,560 --> 01:43:35,920 SYSTEM AND THIS WAS A SCREEN 2222 01:43:35,920 --> 01:43:37,880 SHOT FROM MY OWN MEDICAL 2223 01:43:37,880 --> 01:43:41,440 RECORDS AND I AM FREELY 2224 01:43:41,440 --> 01:43:43,240 SHARING OBVIOUSLY WITH YOU 2225 01:43:43,240 --> 01:43:44,280 ALL. 2226 01:43:44,280 --> 01:43:46,600 IN THE PATIENT PORTAL, AT THE 2227 01:43:46,600 --> 01:43:50,240 TOP, WE HAVE A OPT-OUT SYSTEM. 2228 01:43:50,240 --> 01:43:54,920 PEOPLE ARE ABLE TO CHANGE 2229 01:43:54,920 --> 01:43:56,320 THEIR PARTICIPATION LEVEL IN 2230 01:43:56,320 --> 01:43:57,120 THE PATIENT PORTAL. 2231 01:43:57,120 --> 01:43:59,000 SO UP HERE, I SAID IT IS OKAY 2232 01:43:59,000 --> 01:44:00,560 TO CONTACT ME ABOUT RESEARCH 2233 01:44:00,560 --> 01:44:02,400 BUT IF I CHANGE MY MIND TODAY 2234 01:44:02,400 --> 01:44:06,040 OR TOMORROW, I CAN CHANGE THIS 2235 01:44:06,040 --> 01:44:07,760 TO DON'T CONTACT AND I WILL 2236 01:44:07,760 --> 01:44:10,960 NOT BE CONTACTED BY ANY 2237 01:44:10,960 --> 01:44:11,480 RESEARCHERS. 2238 01:44:11,480 --> 01:44:13,480 THIS ALSO HAS MY ACTIVE 2239 01:44:13,480 --> 01:44:17,040 STUDIES AND AS I MENTIONED TO 2240 01:44:17,040 --> 01:44:19,160 YOU BEFORE, IT IS TECHNICALLY 2241 01:44:19,160 --> 01:44:21,040 OVER AS OF LAST MONTH BUT I 2242 01:44:21,040 --> 01:44:23,760 WAS ON THE COVID-19 TRIAL FOR 2243 01:44:23,760 --> 01:44:26,520 PFIZER AND THEN THIS IS A 2244 01:44:26,520 --> 01:44:29,040 STUDY I WAS INVITED TO, I WANT 2245 01:44:29,040 --> 01:44:31,120 TO SAY, FOUR YEARS AGO AND I 2246 01:44:31,120 --> 01:44:33,280 THINK I WAS INVITED WITH OTHER 2247 01:44:33,280 --> 01:44:34,760 HUNDREDS OF WOMEN BECAUSE IT 2248 01:44:34,760 --> 01:44:44,000 WAS A STUDY ABOUT FACTORS 2249 01:44:44,000 --> 01:44:45,760 INFLUENCING REPRODUCTIVE 2250 01:44:45,760 --> 01:44:47,440 SUCCESS WITH TIMES PREGNANT 2251 01:44:47,440 --> 01:44:49,080 AND IF YOU PLANNED TO GET 2252 01:44:49,080 --> 01:44:51,640 PREGNANT WITHIN A YEAR, I DID 2253 01:44:51,640 --> 01:44:53,680 NOT QUALIFY AS THAT WAS NOT A 2254 01:44:53,680 --> 01:44:55,040 GOAL OF MINE AT THAT TIME AND 2255 01:44:55,040 --> 01:44:58,080 I SAID I WAS NOT INTERESTED SO 2256 01:44:58,080 --> 01:44:59,560 IT SAYS DON'T CONTACT PATIENT 2257 01:44:59,560 --> 01:45:03,360 FOR THAT STUDY AND THEN THERE 2258 01:45:03,360 --> 01:45:05,240 IS A WHOLE AREA WHERE PEOPLE 2259 01:45:05,240 --> 01:45:09,520 CAN LEARN ABOUT THE CLINICAL 2260 01:45:09,520 --> 01:45:10,280 TRIAL BROADLY. 2261 01:45:10,280 --> 01:45:14,840 ONE EXAMPLE OF AN OPT-OUT 2262 01:45:14,840 --> 01:45:16,040 SYSTEM -- SORRY, OPT-IN. 2263 01:45:16,040 --> 01:45:17,680 LET ME TAKE A STEP BACK. 2264 01:45:17,680 --> 01:45:22,360 SO OPT OUT IS USED BY DEFAULT, 2265 01:45:22,360 --> 01:45:24,080 ALL PATIENTS AND PARTICIPANTS 2266 01:45:24,080 --> 01:45:25,160 CAN BE CONTACTED AND THERE WAS 2267 01:45:25,160 --> 01:45:27,480 NOTHING I HAD TO DO ON MY END 2268 01:45:27,480 --> 01:45:28,880 TO POSSESSIONLY HAVE THE 2269 01:45:28,880 --> 01:45:30,360 OPPORTUNITY TO LEARN ABOUT 2270 01:45:30,360 --> 01:45:32,120 CLINICAL TRIALS WITHIN MY 2271 01:45:32,120 --> 01:45:32,960 HEALTH SYSTEM. 2272 01:45:32,960 --> 01:45:34,920 NOW THERE ARE MANY OPT IN 2273 01:45:34,920 --> 01:45:36,800 SYSTEMS AND THERE HAS BEEN A 2274 01:45:36,800 --> 01:45:39,800 LOT OF DEBATE WITHIN THE IRB 2275 01:45:39,800 --> 01:45:41,160 AND RESEARCH COMMUNITY IN 2276 01:45:41,160 --> 01:45:42,880 GENERAL ABOUT WHETHER YOU 2277 01:45:42,880 --> 01:45:45,800 SHOULD HAVE A STANDARD 2278 01:45:45,800 --> 01:45:46,160 OPT-OUT. 2279 01:45:46,160 --> 01:45:49,880 SOME PEOPLE FEEL STRONGLY 2280 01:45:49,880 --> 01:45:53,760 THERE SHOULD ONLY BE OPT IN 2281 01:45:53,760 --> 01:45:56,600 SYSTEMS BUT MY EDITORIAL 2282 01:45:56,600 --> 01:46:01,880 COMMENT, AN EXAMPLE OF OPT-IN, 2283 01:46:01,880 --> 01:46:03,280 A FEDERAL REGISTRY INSTITUTED 2284 01:46:03,280 --> 01:46:06,480 BY THE NATIONAL INSTITUTES OF 2285 01:46:06,480 --> 01:46:08,720 HEALTH AND OTHER MEDICAL 2286 01:46:08,720 --> 01:46:09,600 CENTERS PARTICIPATE. 2287 01:46:09,600 --> 01:46:12,440 BASICALLY AS OF YESTERDAY, 2288 01:46:12,440 --> 01:46:16,240 THERE WERE 143,000 PEOPLE WHO 2289 01:46:16,240 --> 01:46:18,560 HAVE REGISTERED IN RESEARCHNAT 2290 01:46:18,560 --> 01:46:20,640 AND YOU CAN SIGN UP -- WELL, 2291 01:46:20,640 --> 01:46:24,160 YOU DON'T HAVE TO SIGN UP FOR 2292 01:46:24,160 --> 01:46:24,680 RESEARCHNAT. 2293 01:46:24,680 --> 01:46:26,960 YOU CAN SEARCH FOR CLINICAL 2294 01:46:26,960 --> 01:46:29,840 TRIALS IN GENERAL BUT IF YOU 2295 01:46:29,840 --> 01:46:33,240 DECIDE TO JOIN THE REGISTRY, 2296 01:46:33,240 --> 01:46:36,320 FILL OUT THE PRO FILE ABOUT 2297 01:46:36,320 --> 01:46:37,600 YOUR HEALTH INTERESTS AND 2298 01:46:37,600 --> 01:46:39,800 HEALTH HISTORY AND BASED ON 2299 01:46:39,800 --> 01:46:41,520 THE PROFILE THAT SETS THAT UP, 2300 01:46:41,520 --> 01:46:43,400 YOU CAN BE SELECTED FOR OTHER 2301 01:46:43,400 --> 01:46:44,200 OPPORTUNITIES. 2302 01:46:44,200 --> 01:46:47,480 SO I JOINED RESEARCHNAT 2303 01:46:47,480 --> 01:46:50,560 SEVERAL WEEKS AGO I THINK WHEN 2304 01:46:50,560 --> 01:46:58,800 I WAS DOING MY RESEARCH ON 2305 01:46:58,800 --> 01:47:00,000 CLINICAL TRIAL SELECTION AND 2306 01:47:00,000 --> 01:47:01,280 JUST CURIOUS ABOUT HOW IT 2307 01:47:01,280 --> 01:47:01,600 WORKS. 2308 01:47:01,600 --> 01:47:09,240 SO NOW I HAVE A PROFILE AND I 2309 01:47:09,240 --> 01:47:10,720 SOMETIMES DID SURVEY STUDIES 2310 01:47:10,720 --> 01:47:14,000 OR OPPORTUNITY FROM PLAYS IN 2311 01:47:14,000 --> 01:47:15,680 CALIFORNIA, OHIO, ET CETERA, 2312 01:47:15,680 --> 01:47:18,240 SO THIS IS AN EXAMPLE OF WHAT 2313 01:47:18,240 --> 01:47:19,400 THE E-MAIL INVITATION WOULD 2314 01:47:19,400 --> 01:47:20,320 LOOK LIKE. 2315 01:47:20,320 --> 01:47:22,040 SO THIS ONE RIGHT HERE, SORRY 2316 01:47:22,040 --> 01:47:24,560 THE TEXT IS A LITTLE BIT SMALL 2317 01:47:24,560 --> 01:47:27,880 BUT IT WAS SENT TO MY E-MAIL 2318 01:47:27,880 --> 01:47:35,080 BECAUSE I AM A MEMBER OF OF 2319 01:47:35,080 --> 01:47:37,400 RESEARCHNAT, IT SAYS A 2320 01:47:37,400 --> 01:47:38,640 RESEARCHER AT UNIVERSITY OF 2321 01:47:38,640 --> 01:47:39,720 GEORGE WASHINGTON THINKS YOU 2322 01:47:39,720 --> 01:47:42,640 MAY BE A GOOD FIT SO BASICALLY 2323 01:47:42,640 --> 01:47:44,720 THIS STUDY IS TRYING TO 2324 01:47:44,720 --> 01:47:46,800 UNDERSTAND THE DIFFERENCES IN 2325 01:47:46,800 --> 01:47:48,120 HEALTH OF WOMEN ACROSS THE 2326 01:47:48,120 --> 01:47:48,560 UNITED STATES. 2327 01:47:48,560 --> 01:47:52,080 SO IT IS A SURVEY THAT TAKES 2328 01:47:52,080 --> 01:47:53,880 15 MINUTES, IT IS VOLUNTARY 2329 01:47:53,880 --> 01:47:59,000 AND YOU WON'T BE COMPENSATED 2330 01:47:59,000 --> 01:48:02,120 BUT I DID ADD HUMAN KIND IN 2331 01:48:02,120 --> 01:48:03,600 HOW ATTITUDES ABOUT WOMEN 2332 01:48:03,600 --> 01:48:05,680 IMPACT HEALTH AND SIMILAR TO 2333 01:48:05,680 --> 01:48:11,520 HOW OUR PATIENT PORTAL AT NYU 2334 01:48:11,520 --> 01:48:13,720 WORKS, PATIENTS CAN SAY YES I 2335 01:48:13,720 --> 01:48:15,680 AM INTERESTED OR NO I AM NOT 2336 01:48:15,680 --> 01:48:17,040 INTERESTED AND ONLY PATIENTS 2337 01:48:17,040 --> 01:48:18,800 WHO SAID YES I AM INTERESTED 2338 01:48:18,800 --> 01:48:19,560 WILL BE CONTACTED. 2339 01:48:19,560 --> 01:48:23,480 SO NOW I WANT TO TALK BROADLY 2340 01:48:23,480 --> 01:48:25,080 ABOUT THE SCIENTIFIC 2341 01:48:25,080 --> 01:48:31,320 WORKFORCE, BOTH BY CLINICAL, 2342 01:48:31,320 --> 01:48:33,040 MEDICAL BEHAVIORAL IN SOCIAL 2343 01:48:33,040 --> 01:48:36,680 SCIENCES AND RESEARCH, ONE 2344 01:48:36,680 --> 01:48:39,760 ASPECT SOMEBODY RACIAL 2345 01:48:39,760 --> 01:48:41,600 DIVERSITY WITH RACIAL AND 2346 01:48:41,600 --> 01:48:42,520 ETHNIC GROUPS BUT ALSO 2347 01:48:42,520 --> 01:48:45,880 CONVERSATION ON HOW YOU BUILD 2348 01:48:45,880 --> 01:48:47,680 INCLUSIVE ENVIRONMENTS AND 2349 01:48:47,680 --> 01:48:50,080 BUILD A WORKFORCE AMONG PEOPLE 2350 01:48:50,080 --> 01:48:52,840 WHO HAVE DISABILITIES SO 2351 01:48:52,840 --> 01:48:53,960 PHYSICAL, VISUAL, THINGS YOU 2352 01:48:53,960 --> 01:48:57,040 CAN SEE AND THINGS YOU CAN'T 2353 01:48:57,040 --> 01:48:58,000 SEE. 2354 01:48:58,000 --> 01:49:01,560 THERE IS ALSO CONVERSATIONS 2355 01:49:01,560 --> 01:49:04,680 ABOUT HOW TO EXPAND PEOPLE 2356 01:49:04,680 --> 01:49:12,160 FROM DISHAD A VANITY TAEUBLGD 2357 01:49:12,160 --> 01:49:13,880 BACKGROUNDS, SO THERE'S 2358 01:49:13,880 --> 01:49:15,040 DIFFERENT DIMENSIONS WITH 2359 01:49:15,040 --> 01:49:17,000 DISADVANTAGED AND ALSO MAKING 2360 01:49:17,000 --> 01:49:18,720 SURE THE ENVIRONMENTS ARE 2361 01:49:18,720 --> 01:49:23,920 DIVERSE AND INCLUSIVE OF 2362 01:49:23,920 --> 01:49:24,240 WOMEN. 2363 01:49:24,240 --> 01:49:26,480 SO ONE, WHEN I THINK ABOUT 2364 01:49:26,480 --> 01:49:28,000 PARTICULARLY WHEN IT RELATES 2365 01:49:28,000 --> 01:49:29,120 TO FACULTY MEMBERS, THE FIRST 2366 01:49:29,120 --> 01:49:30,120 CONVERSATION IS HOW YOU GET 2367 01:49:30,120 --> 01:49:32,640 PEOPLE IN THE DOOR, PERIOD. 2368 01:49:32,640 --> 01:49:35,400 SO HOW DO WE THINK ABOUT 2369 01:49:35,400 --> 01:49:36,560 RECRUITMENT PARTICULARLY OF 2370 01:49:36,560 --> 01:49:38,080 FACULTY MEMBERS OR RESEARCH 2371 01:49:38,080 --> 01:49:38,640 SCIENTISTS. 2372 01:49:38,640 --> 01:49:41,960 SO THE NIH HAS A REALLY NICE 2373 01:49:41,960 --> 01:49:43,000 TOOL KIT. 2374 01:49:43,000 --> 01:49:45,720 YOU ALL MAY HAVE SEEN IT OR 2375 01:49:45,720 --> 01:49:47,200 NOT BUT I WOULD ENCOURAGE YOU 2376 01:49:47,200 --> 01:49:48,680 TO CHECK IT OUT. 2377 01:49:48,680 --> 01:49:50,640 SO IT HAS REALLY LIKE FOUR 2378 01:49:50,640 --> 01:49:53,160 PILLARS OF HOW TO BUILD 2379 01:49:53,160 --> 01:49:57,880 DIVERSITY IN A SCIENTIFIC 2380 01:49:57,880 --> 01:50:02,440 WORKFORCE AND THAT FIRST RED 2381 01:50:02,440 --> 01:50:05,400 AREA IS DIVERSE CANDIDATE 2382 01:50:05,400 --> 01:50:08,560 POOL, GOLD IS UNBIASED TALENT 2383 01:50:08,560 --> 01:50:10,160 SEARCHES, PURPLE IS OUTREACH 2384 01:50:10,160 --> 01:50:12,160 AND NETWORKING AND FINE IS 2385 01:50:12,160 --> 01:50:13,080 MENTORING RELATIONSHIPS AND I 2386 01:50:13,080 --> 01:50:14,600 WILL TALK ABOUT A FEW OF 2387 01:50:14,600 --> 01:50:14,920 THESE. 2388 01:50:14,920 --> 01:50:16,800 SO SOME OF THE STRATEGIES WHEN 2389 01:50:16,800 --> 01:50:20,440 IT COMES TO RECRUITMENT AND 2390 01:50:20,440 --> 01:50:28,880 HIRING IS SYSTEMATICALLY 2391 01:50:28,880 --> 01:50:31,480 REVIEWING YOUR YOU PROCEDURES 2392 01:50:31,480 --> 01:50:35,000 AND POLICIES. 2393 01:50:35,000 --> 01:50:37,720 SOME DASHBOARDS HAVE HIRING 2394 01:50:37,720 --> 01:50:39,600 AND PROMOTION BY SEX AND 2395 01:50:39,600 --> 01:50:42,960 GENDER AND IT IS IMPORTANT TO 2396 01:50:42,960 --> 01:50:45,160 PROVIDE RESOURCES AND 2397 01:50:45,160 --> 01:50:46,880 DIVERSITY TOOLS TO DIVISIONS 2398 01:50:46,880 --> 01:50:48,720 AND DEPARTMENTS OR HOWEVER 2399 01:50:48,720 --> 01:50:53,520 YOUR ORGANIZATION KIND OF 2400 01:50:53,520 --> 01:50:54,680 CATEGORIZES THEIR GROUP'S 2401 01:50:54,680 --> 01:50:58,800 RESEARCH EFFORT AND THEN 2402 01:50:58,800 --> 01:51:00,000 EVALUATING THE STRATEGY 2403 01:51:00,000 --> 01:51:00,360 INCLUDED. 2404 01:51:00,360 --> 01:51:02,880 SO IT IS IMPORTANT TO HAVE 2405 01:51:02,880 --> 01:51:04,880 DIVERSITY PUT AS I MENTIONED 2406 01:51:04,880 --> 01:51:06,720 BEFORE, DIVERSITY IS A LOT OF 2407 01:51:06,720 --> 01:51:07,160 THINGS. 2408 01:51:07,160 --> 01:51:10,160 SO SAY OKAY WE HAVE 100 PEOPLE 2409 01:51:10,160 --> 01:51:13,560 AND ADDED 5 PEOPLE WHO ARE DOG 2410 01:51:13,560 --> 01:51:15,560 LOVERS AND WHAT HAS BEEN THE 2411 01:51:15,560 --> 01:51:17,760 IMPACT OF ADDING THE FIVE 2412 01:51:17,760 --> 01:51:20,240 PEOPLE WHO ARE DOG LOVERS TO 2413 01:51:20,240 --> 01:51:21,080 YOUR GROUP? 2414 01:51:21,080 --> 01:51:23,280 AND AGAIN AS MENTIONED BEFORE, 2415 01:51:23,280 --> 01:51:25,680 TO REALLY THINK ABOUT WHAT WE 2416 01:51:25,680 --> 01:51:27,200 WANT THE DIVERSITY TO ACTUALLY 2417 01:51:27,200 --> 01:51:29,520 DO AND HOW WILL WE KNOW IT IS 2418 01:51:29,520 --> 01:51:32,040 WORKING IF WE CREATE A DIVERSE 2419 01:51:32,040 --> 01:51:33,640 POPULATION WHICH YOU CAN DO IN 2420 01:51:33,640 --> 01:51:35,640 A LOT OF DIFFERENT WAYS, HOW 2421 01:51:35,640 --> 01:51:37,920 IS THAT REALLY GOING TO HAVE A 2422 01:51:37,920 --> 01:51:39,760 DIFFERENT IMPACT AND IF IT IS 2423 01:51:39,760 --> 01:51:41,600 NOT HAVING AN IMPACT OR THE 2424 01:51:41,600 --> 01:51:44,720 IMPACT YOU WANT FOR YOUR 2425 01:51:44,720 --> 01:51:46,200 CONTACT, ADJUSTING THE 2426 01:51:46,200 --> 01:51:48,200 STRATEGY. 2427 01:51:48,200 --> 01:51:56,480 IT IS ALSO IMPORTANT TO REVIEW 2428 01:51:56,480 --> 01:51:57,520 AND ENSURE EQUALITY WITH 2429 01:51:57,520 --> 01:51:59,160 RESOURCES AND ALSO THE SALARY 2430 01:51:59,160 --> 01:52:01,240 AND FINANCIAL ASPECT OF 2431 01:52:01,240 --> 01:52:02,760 RECRUITMENT AND PROMOTION ARE 2432 01:52:02,760 --> 01:52:05,240 VERY IMPORTANT AND HAVE 2433 01:52:05,240 --> 01:52:06,680 HISTORICALLY BEEN UNEQUAL, 2434 01:52:06,680 --> 01:52:09,720 PARTICULARLY AS IT RELATES TO 2435 01:52:09,720 --> 01:52:11,000 RACIAL AND ETHNIC MINORITIES 2436 01:52:11,000 --> 01:52:15,800 AND WOMEN. 2437 01:52:15,800 --> 01:52:18,680 ALSO ENSURING WIDTH, 2438 01:52:18,680 --> 01:52:21,400 BREADTHTH, FAIRNESS AND THEN 2439 01:52:21,400 --> 01:52:22,440 SPONSORING FACULTY PROMOTION 2440 01:52:22,440 --> 01:52:24,760 FOR AWARDS AND INCLUSION IN 2441 01:52:24,760 --> 01:52:25,680 PROFESSIONAL NETWORKS SO I 2442 01:52:25,680 --> 01:52:27,320 WILL TALK A LITTLE ABOUT 2443 01:52:27,320 --> 01:52:29,760 MENTORING AND SPONSORING IN A 2444 01:52:29,760 --> 01:52:31,800 COUPLE OF SLIDES. 2445 01:52:31,800 --> 01:52:35,120 AND REALLY JUST COMMITTING TO 2446 01:52:35,120 --> 01:52:37,040 WORKPLACE BALANCE FOR ALL 2447 01:52:37,040 --> 01:52:39,040 FACULTY AND CONDUCTING SURVEYS 2448 01:52:39,040 --> 01:52:41,640 TO GET A GUT CHECK ON THE 2449 01:52:41,640 --> 01:52:49,680 CLIMATE AND MAKE CHANGES AS 2450 01:52:49,680 --> 01:52:50,040 NECESSARY. 2451 01:52:50,040 --> 01:52:51,560 SO ONE OF THE THINGS WIFE BEEN 2452 01:52:51,560 --> 01:52:54,120 TALKING ABOUT IN MY 2453 01:52:54,120 --> 01:52:55,040 ORGANIZATION AND SOME OF THE 2454 01:52:55,040 --> 01:52:57,360 GROUPS I AM A PART OF AND EVEN 2455 01:52:57,360 --> 01:52:58,560 PROFESSIONAL SOCIETIES I AM A 2456 01:52:58,560 --> 01:53:01,040 PART OF AS IT RELATES TO 2457 01:53:01,040 --> 01:53:03,000 FINDING NEW PEOPLE TO BE ON 2458 01:53:03,000 --> 01:53:05,800 THE BOARD OR TO NOMINATE FOR 2459 01:53:05,800 --> 01:53:07,400 AWARDS, TO REALLY HAVE CLEAR 2460 01:53:07,400 --> 01:53:10,400 CRITERIA AND STANDARDS FOR THE 2461 01:53:10,400 --> 01:53:12,760 POSITION BEFORE ANYONE IS 2462 01:53:12,760 --> 01:53:14,400 RECRUITED AND CONTACTED WHICH 2463 01:53:14,400 --> 01:53:16,560 SEEMS OBVIOUS BUT DOESN'T 2464 01:53:16,560 --> 01:53:19,840 ALWAYS HAPPEN AND REALLY 2465 01:53:19,840 --> 01:53:22,360 HAVING A CLEAR EVALUATION AND 2466 01:53:22,360 --> 01:53:25,680 CREATING A GLOBAL SCORING. 2467 01:53:25,680 --> 01:53:29,160 AND THEN CONDUCTING ANONYMOUS 2468 01:53:29,160 --> 01:53:32,840 SCORING IF THE RESEARCH IS BIG 2469 01:53:32,840 --> 01:53:34,640 ENOUGH AND THEN HAVING DIVERSE 2470 01:53:34,640 --> 01:53:36,520 EFFORTS SO WITH NO SURPRISE 2471 01:53:36,520 --> 01:53:38,280 WITH REGARD TO IMPLICIT BIAS 2472 01:53:38,280 --> 01:53:40,600 AND JUST IN GENERAL, ALL 2473 01:53:40,600 --> 01:53:41,360 HUMANS DO IT? 2474 01:53:41,360 --> 01:53:43,240 A. WE TEND TO LIKE PEOPLE WHO 2475 01:53:43,240 --> 01:53:44,160 ARE LIKE US. 2476 01:53:44,160 --> 01:53:46,680 IT MAY BE THAT YOU LIKE DOG 2477 01:53:46,680 --> 01:53:48,960 PEOPLE OVER CAT PEOPLE OR CAT 2478 01:53:48,960 --> 01:53:50,240 PEOPLE OVER DOG PEOPLE, MAYBE 2479 01:53:50,240 --> 01:53:53,120 IF YOU ARE A PSYCHOLOGIST YOU 2480 01:53:53,120 --> 01:53:55,440 MIGHT HAVE A PREFERENCE TO 2481 01:53:55,440 --> 01:53:57,280 RECRUIT A PSYCHOLOGIST SO 2482 01:53:57,280 --> 01:54:07,840 TWAOE ALL HAVE OUR OWN BIASES 2483 01:54:08,200 --> 01:54:11,600 AND SO IF WE ENSURE THEY ARE 2484 01:54:11,600 --> 01:54:14,920 DIVERSE WE WILL HAVE HOPEFULLY 2485 01:54:14,920 --> 01:54:16,880 A GROUP OF WELL ROUNDED 2486 01:54:16,880 --> 01:54:17,280 CANDIDATES. 2487 01:54:17,280 --> 01:54:21,280 SO THIS IS A TWEET I SAW LAST 2488 01:54:21,280 --> 01:54:23,000 MARCH AND I DON'T KNOW THIS 2489 01:54:23,000 --> 01:54:25,480 PERSON, RYAN, BUT IT REALLY 2490 01:54:25,480 --> 01:54:30,720 STRUCK MY ATTENTION BECAUSE I 2491 01:54:30,720 --> 01:54:35,040 HAD THIS SOAPBOX ABOUT THE 2492 01:54:35,040 --> 01:54:38,760 UNPAID INTERNSHIPS AND HE SAID 2493 01:54:38,760 --> 01:54:42,240 IT IS A PERIOD OF TESTING YOUR 2494 01:54:42,240 --> 01:54:42,720 LIMITS. 2495 01:54:42,720 --> 01:54:44,560 THE INTERNSHIP CAN BE AN 2496 01:54:44,560 --> 01:54:46,760 ASSESSMENT OF HOW WILLING YOU 2497 01:54:46,760 --> 01:54:51,560 ARE TO ACCEPT FINANCIAL ABUSE. 2498 01:54:51,560 --> 01:54:52,680 PENNIES SOUNDS LIKE A LOT 2499 01:54:52,680 --> 01:54:54,280 AFTER WORKING FOR FREE. 2500 01:54:54,280 --> 01:54:56,840 THEN HE WENT ON TO SAY SEVERAL 2501 01:54:56,840 --> 01:55:00,200 OF MIGHT HAVE MENTORS SAW ME 2502 01:55:00,200 --> 01:55:01,000 UNGRATEFUL FOR OPPORTUNITIES 2503 01:55:01,000 --> 01:55:04,280 BUT IT WAS FINANCIALLY 2504 01:55:04,280 --> 01:55:06,520 IMPOSSIBLE FOR ME TO DEVOTE 2505 01:55:06,520 --> 01:55:09,640 HOURS TO FREE LABOR. 2506 01:55:09,640 --> 01:55:11,440 THESE SYSTEMS WERE DESIGNED 2507 01:55:11,440 --> 01:55:14,280 FOR PEOPLE WITH MONEY AND 2508 01:55:14,280 --> 01:55:16,920 PRESSURE TO PERFORM WEALTH CAN 2509 01:55:16,920 --> 01:55:19,120 PRODUCE COMPOUND FINANCIAL 2510 01:55:19,120 --> 01:55:21,680 OBSTACLES FOR WORKING CLASS 2511 01:55:21,680 --> 01:55:22,080 PEOPLE. 2512 01:55:22,080 --> 01:55:25,400 SO THAT REALLY STRUCK OUT TO 2513 01:55:25,400 --> 01:55:30,840 ME ESPECIALLY SINCE THERE ARE 2514 01:55:30,840 --> 01:55:32,800 THESE PLACES WITH PAY FOR 2515 01:55:32,800 --> 01:55:40,360 VOLUNTEERS AND THERE COULD BE 2516 01:55:40,360 --> 01:55:48,000 UNINTENDED EFFECTS OF 2517 01:55:48,000 --> 01:55:49,120 INTERNSHIPS THAT AREUNPAID. 2518 01:55:49,120 --> 01:55:52,320 SO THEN WE TALK ABOUT 2519 01:55:52,320 --> 01:55:54,840 SCIENTISTS AND KEEPING THEM IN 2520 01:55:54,840 --> 01:55:56,360 THE DOOR AND THIS ACTUALLY IS 2521 01:55:56,360 --> 01:55:59,440 FROM THE NATIONAL CENTER FOR 2522 01:55:59,440 --> 01:56:01,600 FACULTY DEVELOPMENT AND 2523 01:56:01,600 --> 01:56:03,120 DIVERSITY AND IF ANYONE IS 2524 01:56:03,120 --> 01:56:06,080 INTERESTED, I CAN E-MAIL IT TO 2525 01:56:06,080 --> 01:56:08,080 YOU, THE PDF FORM YOU CAN FILL 2526 01:56:08,080 --> 01:56:08,320 IN. 2527 01:56:08,320 --> 01:56:10,400 AND THE IDEA HERE IS THERE ARE 2528 01:56:10,400 --> 01:56:12,520 LOTS OF ASPECTS OF MENTORING 2529 01:56:12,520 --> 01:56:13,400 AND PROFESSIONAL DEVELOPMENT 2530 01:56:13,400 --> 01:56:15,680 THAT WE DON'T ALWAYS THINK 2531 01:56:15,680 --> 01:56:19,320 ABOUT AND WHILE IT IS 2532 01:56:19,320 --> 01:56:23,560 WONDERFUL TO HAVE TYPICALLY IN 2533 01:56:23,560 --> 01:56:24,600 UNIVERSITIES, THEY USUALLY 2534 01:56:24,600 --> 01:56:26,520 HAVE A PRIMARY MENTOR AND IN 2535 01:56:26,520 --> 01:56:28,800 SOME CASES, A MENTORING 2536 01:56:28,800 --> 01:56:31,840 COMMITTEE, I AM GUESSING IT IS 2537 01:56:31,840 --> 01:56:33,400 THE SAME FOR STAFF MEMBERS, ET 2538 01:56:33,400 --> 01:56:34,880 CETERA AND IT IS GREAT TO HAVE 2539 01:56:34,880 --> 01:56:37,440 A MENTOR BUT YOU NEED MORE 2540 01:56:37,440 --> 01:56:38,960 THAN ONE PERSON AND DIFFERENT 2541 01:56:38,960 --> 01:56:42,360 TYPES OF NORTH CAROLINA TO 2542 01:56:42,360 --> 01:56:45,720 HAVE WELL-ROUNDED AT ADVICE OR 2543 01:56:45,720 --> 01:56:48,120 INFORMATION AND SO THIS IS AN 2544 01:56:48,120 --> 01:56:49,680 ASPECT PEOPLE CAN BE THINKING 2545 01:56:49,680 --> 01:56:51,160 ABOUT FOR THEIR OWN MENTORING. 2546 01:56:51,160 --> 01:56:53,120 AND FROM THE SAME 2547 01:56:53,120 --> 01:56:58,280 ORGANIZATION, NATIONAL CENTER 2548 01:56:58,280 --> 01:56:59,840 FOR FACULTY DEVELOPMENT 2549 01:56:59,840 --> 01:57:01,960 ENDEAVORS, THIS WAS ACTUALLY 2550 01:57:01,960 --> 01:57:03,760 POSTED IN 2016 BUT USED IN 2551 01:57:03,760 --> 01:57:14,320 OTHER TALKS I LIKED AND KERRA 2552 01:57:16,640 --> 01:57:22,760 ANN IS AN INDIVIDUAL THAT 2553 01:57:22,760 --> 01:57:33,360 ADDRESSES MENTORSS AND THERE 2554 01:57:36,320 --> 01:57:37,440 IS THIS QUESTION. 2555 01:57:37,440 --> 01:57:40,040 CAN I MENTOR AFRICAN-AMERICAN 2556 01:57:40,040 --> 01:57:43,040 FACULTY EFFECTIVELY OR SHOULD 2557 01:57:43,040 --> 01:57:48,040 I TRY TO CONNECT WITH A 2558 01:57:48,040 --> 01:57:48,680 TENURED AFRICAN-AMERICAN 2559 01:57:48,680 --> 01:57:49,480 SCHOLAR IN ANOTHER DEPARTMENT 2560 01:57:49,480 --> 01:57:54,520 AND THEN HE PUTS IN 2561 01:57:54,520 --> 01:57:56,360 PARENTHESES, WE DON'T HAVE ANY 2562 01:57:56,360 --> 01:57:58,240 AND SIGNS IT UNSURE HOW TO 2563 01:57:58,240 --> 01:57:58,560 MENTOR. 2564 01:57:58,560 --> 01:58:00,760 I THINK THIS IS A REALLY GREAT 2565 01:58:00,760 --> 01:58:02,160 QUESTION AND IN RESPONSE TO 2566 01:58:02,160 --> 01:58:05,800 THAT SHE TALKS ABOUT LIMITING 2567 01:58:05,800 --> 01:58:06,960 BELIEFS DRIVING AWKWARD 2568 01:58:06,960 --> 01:58:09,600 FEELINGS AND SOME LIMITING 2569 01:58:09,600 --> 01:58:11,520 BELIEFS COULD BE ONLY PACK 2570 01:58:11,520 --> 01:58:19,680 CULT FACULTY OF COLOR COULD 2571 01:58:19,680 --> 01:58:21,960 ONLY MENTOR FACULTY OF COLOR 2572 01:58:21,960 --> 01:58:32,600 AND THAT IS NOT TRUE. 2573 01:58:32,600 --> 01:58:34,800 LIMITINGBELIEFS DRIVING YOUR 2574 01:58:34,800 --> 01:58:36,600 AWKWARD FEELINGS AND RACE IS 2575 01:58:36,600 --> 01:58:38,680 NOT THE ONLY THING THAT A 2576 01:58:38,680 --> 01:58:40,880 FACULTY OF COLOR COULD BE 2577 01:58:40,880 --> 01:58:44,200 MENTORING ON AND ANOTHER 2578 01:58:44,200 --> 01:58:45,920 LIMITING BELIEF IS THERE ARE 2579 01:58:45,920 --> 01:58:48,760 NO NEEDS THAT A FACULTY OF 2580 01:58:48,760 --> 01:58:51,320 COLOR COULD HAVE THAT DON'T 2581 01:58:51,320 --> 01:58:52,080 RELATE TO YOU. 2582 01:58:52,080 --> 01:58:54,920 I DON'T KNOW THE ETHIC 2583 01:58:54,920 --> 01:58:56,200 BREAKOUT OF THOSE LISTENING 2584 01:58:56,200 --> 01:58:57,920 BUT WE ALL HAVE INFORMATION 2585 01:58:57,920 --> 01:58:59,600 AND INSIGHTS THAT COULD BE 2586 01:58:59,600 --> 01:59:01,760 HELPFUL TO OTHER PEOPLE AND SO 2587 01:59:01,760 --> 01:59:03,400 THOSE OF YOU, I AM GUESSING, 2588 01:59:03,400 --> 01:59:05,560 YOU ARE SMART TO TAKE THIS 2589 01:59:05,560 --> 01:59:07,840 COURSE SO I AM SURE IF YOU 2590 01:59:07,840 --> 01:59:09,360 HAVE HELPFUL TOOLS AND STUFF 2591 01:59:09,360 --> 01:59:12,640 YOU CAN SHARE WITH OTHERS AND 2592 01:59:12,640 --> 01:59:19,120 ARE THEN THE LAST ONE OF 2593 01:59:19,120 --> 01:59:20,440 HUMIDITYING BELIEFS IS THERE 2594 01:59:20,440 --> 01:59:24,560 ARE NEEDS THAT FACULTY OF 2595 01:59:24,560 --> 01:59:28,400 COLOR CAN HAVE THAT CAN BE MET 2596 01:59:28,400 --> 01:59:32,520 BY YOU AND MENTORING MEANS 2597 01:59:32,520 --> 01:59:35,880 GIVING ADVICE TO MENTEES BASED 2598 01:59:35,880 --> 01:59:37,520 ON YOUR PERSONAL EXPERIENCE AS 2599 01:59:37,520 --> 01:59:40,240 OPPOSED TO SCIENCE AND TOOLS 2600 01:59:40,240 --> 01:59:42,440 AND PERSPECTIVES THAT COULD 2601 01:59:42,440 --> 01:59:44,080 HELP ANY MENTEE REGARDLESS 2602 01:59:44,080 --> 01:59:45,440 WHETHER THEY SHARE YOUR 2603 01:59:45,440 --> 01:59:47,040 PERSONAL EXPERIENCE OR NOT. 2604 01:59:47,040 --> 01:59:49,120 AND IN MY LAST COUPLE OF 2605 01:59:49,120 --> 01:59:51,760 SLIDES, I ACTUALLY WANT TO 2606 01:59:51,760 --> 01:59:53,920 FOCUS ON STUDY COORDINATORS 2607 01:59:53,920 --> 01:59:57,120 AND STAFF MEMBERS SINCE A LOT 2608 01:59:57,120 --> 01:59:58,680 OF TIMES THEY DON'T 2609 01:59:58,680 --> 02:00:00,240 NECESSARILY GET YOUR SIDE OR 2610 02:00:00,240 --> 02:00:02,360 ATTENTION, A LOT OF WHAT I 2611 02:00:02,360 --> 02:00:03,840 PRESENTED AS RESEARCH IS 2612 02:00:03,840 --> 02:00:05,360 ACTUALLY ON FACULTY MEMBERS 2613 02:00:05,360 --> 02:00:07,520 AND SCIENTISTS WHICH IS REALLY 2614 02:00:07,520 --> 02:00:08,200 IMPORTANT BUT ALSO VERY 2615 02:00:08,200 --> 02:00:09,760 IMPORTANT TO BE THINKING ABOUT 2616 02:00:09,760 --> 02:00:10,040 STAFF. 2617 02:00:10,040 --> 02:00:16,920 SO A FEW YEARS AGO, WE 2618 02:00:16,920 --> 02:00:18,520 CONDUCTED A STUDY LOOKING AT 2619 02:00:18,520 --> 02:00:20,800 KNOWLEDGE AND USE OF 2620 02:00:20,800 --> 02:00:23,800 RECRUITMENT SUPPORT TOOLS 2621 02:00:23,800 --> 02:00:29,640 AMONG STUDY COORDINATORS AT 2622 02:00:29,640 --> 02:00:33,000 NYU FOR NOVEL APPROACHES TO 2623 02:00:33,000 --> 02:00:33,680 RECRUITMENT PLANNING STUDY. 2624 02:00:33,680 --> 02:00:35,920 THERE IS NOT A LOT OF SPECIFIC 2625 02:00:35,920 --> 02:00:37,640 LITERATURE IN STUDIES THAT 2626 02:00:37,640 --> 02:00:40,680 HAVE SPECIFICALLY FOCUSED ON 2627 02:00:40,680 --> 02:00:43,560 THE SUPPORT THAT STUDY 2628 02:00:43,560 --> 02:00:45,960 COORDINATORS NEED TO 2629 02:00:45,960 --> 02:00:56,440 EFFECTIVELY RECRUIT AND 2630 02:00:56,440 --> 02:00:59,800 RETAIN STUDY PARTICIPANTS. 2631 02:00:59,800 --> 02:01:05,400 SO WE LOOKED AT A 2632 02:01:05,400 --> 02:01:06,880 CROSS-SECTIONAL SURVEY FROM 2633 02:01:06,880 --> 02:01:08,440 147 STUDY COORDINATORS, WE HAD 2634 02:01:08,440 --> 02:01:10,040 SOME FROM THE DEPARTMENT OF 2635 02:01:10,040 --> 02:01:12,240 HEALTH, SOME INVOLVED IN DRUG 2636 02:01:12,240 --> 02:01:14,080 STUDIES OR SURGERY STUDIES AND 2637 02:01:14,080 --> 02:01:15,800 WHAT HAVE YOU SO THERE WAS A 2638 02:01:15,800 --> 02:01:17,360 GOOD SAMPLING OF STUDY 2639 02:01:17,360 --> 02:01:19,240 COORDINATORS AND ARE IN THAT 2640 02:01:19,240 --> 02:01:20,320 PAPER, WE ACTUALLY ASKED ABOUT 2641 02:01:20,320 --> 02:01:22,000 A LOT OF THINGS AND IF YOU 2642 02:01:22,000 --> 02:01:24,800 WERE -- I DON'T KNOW IF ANYONE 2643 02:01:24,800 --> 02:01:27,400 TOOK THIS CLASS LAST YEAR BUT 2644 02:01:27,400 --> 02:01:29,000 I TALKED ABOUT OTHER RESULTS 2645 02:01:29,000 --> 02:01:32,520 FROM THIS PARTICULAR STUDY 2646 02:01:32,520 --> 02:01:33,440 LAST YEAR. 2647 02:01:33,440 --> 02:01:36,320 GIVING A TOPIC TO THE TALK, WE 2648 02:01:36,320 --> 02:01:38,080 HAD COORDINATORS GIVE THEIR 2649 02:01:38,080 --> 02:01:38,760 PERSPECTIVE ABOUT HOW 2650 02:01:38,760 --> 02:01:43,520 IMPORTANT IT WAS FOR A STUDY 2651 02:01:43,520 --> 02:01:48,960 COORDINATOR CONCORD A NCE, HOW 2652 02:01:48,960 --> 02:01:51,240 IMPORTANT THEY THOUGHT IT WAS 2653 02:01:51,240 --> 02:01:54,400 TO HAVE A CONCORDANCE TO THE 2654 02:01:54,400 --> 02:01:56,560 STUDY IN SOME WAY AND SOME OF 2655 02:01:56,560 --> 02:01:57,760 THE QUESTIONS ASKED ABOUT 2656 02:01:57,760 --> 02:02:01,200 RELATED TO AGE, GENDER, RACE 2657 02:02:01,200 --> 02:02:02,040 AND ETHNICITY AND LANGUAGE 2658 02:02:02,040 --> 02:02:02,400 SPOKEN. 2659 02:02:02,400 --> 02:02:06,240 AND I AM NOT SURE WHAT WE -- I 2660 02:02:06,240 --> 02:02:07,760 THINK I EXPECTED DIFFERENT 2661 02:02:07,760 --> 02:02:08,760 ANSWERS BUT THERE WAS ONLY -- 2662 02:02:08,760 --> 02:02:15,120 IT WAS ON A SCALE OF 1 TO 5 2663 02:02:15,120 --> 02:02:19,360 AND IT RELATED TO THE 2664 02:02:19,360 --> 02:02:22,760 CONCORDANCE WAS VERY IMPORTANT 2665 02:02:22,760 --> 02:02:24,040 VERSUS NOT IMPORTANT AND 2666 02:02:24,040 --> 02:02:25,840 60 PERCENT OF THE PARTICIPANTS 2667 02:02:25,840 --> 02:02:27,120 LISTED LANGUAGE AS VERY 2668 02:02:27,120 --> 02:02:28,400 IMPORTANT WHICH I THINK IS 2669 02:02:28,400 --> 02:02:30,440 INTERESTING FOR A VARIETY OF 2670 02:02:30,440 --> 02:02:33,000 REASONS BUT IN PARTICULAR, 2671 02:02:33,000 --> 02:02:37,520 BECAUSE AT LEAST AT NYU, WE 2672 02:02:37,520 --> 02:02:39,920 HAVE BEEN TALKING A LOT MORE 2673 02:02:39,920 --> 02:02:43,120 ABOUT HAVING INTERPRETATION 2674 02:02:43,120 --> 02:02:43,880 AND TRANSLATION OPPORTUNITIES. 2675 02:02:43,880 --> 02:02:46,760 A LOT OF WHAT -- IF THERE IS 2676 02:02:46,760 --> 02:02:47,880 ANOTHER LANGUAGE BESIDES 2677 02:02:47,880 --> 02:02:50,760 ENGLISH, A LOT OF TIMES IT IS 2678 02:02:50,760 --> 02:02:51,920 SPANISH WHICH IS APPROPRIATE 2679 02:02:51,920 --> 02:02:53,320 BECAUSE A LOT OF PEOPLE LIVING 2680 02:02:53,320 --> 02:02:55,160 IN THE UNITED STATES SPEAK 2681 02:02:55,160 --> 02:02:58,560 SPANISH BUT IF YOU ARE IN A 2682 02:02:58,560 --> 02:03:03,000 CITY LIKE I AM, NEW YORK CITY 2683 02:03:03,000 --> 02:03:07,000 OR WASHINGTON D.C., A CITY 2684 02:03:07,000 --> 02:03:09,480 THAT HAS A LOT OF DIFFERENT 2685 02:03:09,480 --> 02:03:10,680 LANGUAGES IN THE FIELD, 2686 02:03:10,680 --> 02:03:13,960 SOMETIMES THE LACK OF LANGUAGE 2687 02:03:13,960 --> 02:03:15,600 OFFERINGS IN DIVERSITY CAN BE 2688 02:03:15,600 --> 02:03:19,600 A BARRIER FOR FULLY INCLUDING 2689 02:03:19,600 --> 02:03:21,240 AND DIVERSIFYING THE RESEARCH 2690 02:03:21,240 --> 02:03:25,480 POOL OR PARTICIPANT POOL IN 2691 02:03:25,480 --> 02:03:26,000 CLINICAL TRIALS. 2692 02:03:26,000 --> 02:03:28,200 ALL RIGHT, SO PROUD OF MYSELF, 2693 02:03:28,200 --> 02:03:30,920 ALMOST RIGHT ON TIME WHERE WE 2694 02:03:30,920 --> 02:03:31,560 NEEDED TO END. 2695 02:03:31,560 --> 02:03:35,000 SO THESE WERE A FEW MORE 2696 02:03:35,000 --> 02:03:35,920 EMERGING QUESTIONS IN GROUP 2697 02:03:35,920 --> 02:03:38,120 DISCUSSION THAT I WANTED TO 2698 02:03:38,120 --> 02:03:40,200 RAISE TO DIFFERENT GROUPS IS. 2699 02:03:40,200 --> 02:03:41,800 IT IN SLIDO? 2700 02:03:41,800 --> 02:03:44,000 >>YES, IT IS IN SLIDO SO I 2701 02:03:44,000 --> 02:03:45,320 WILL HOPE THE FIRST QUESTION 2702 02:03:45,320 --> 02:03:47,480 BUT FIRST I AM GOING TO ADD ON 2703 02:03:47,480 --> 02:03:50,360 YOUR LAST POINT, AISHA, I WAS 2704 02:03:50,360 --> 02:03:53,480 HELPING OUT WITH SOME STUDIES 2705 02:03:53,480 --> 02:03:58,920 OF NOVEL MEDICAL DEVICES TO 2706 02:03:58,920 --> 02:03:59,400 TEST FOR COVID. 2707 02:03:59,400 --> 02:04:03,000 AND ONE OF THE STUDY SITES WAS 2708 02:04:03,000 --> 02:04:05,760 IN CHICAGO AND THEY THE GIVEN 2709 02:04:05,760 --> 02:04:06,600 THE NEIGHBORHOODS IN WHICH 2710 02:04:06,600 --> 02:04:08,960 THEY WANTED TO RECRUIT, THEY 2711 02:04:08,960 --> 02:04:11,320 TRANSLATED ALL THE STUDY 2712 02:04:11,320 --> 02:04:13,440 INFORMATION INTO POLISH -- 2713 02:04:13,440 --> 02:04:13,840 >>OH WOW. 2714 02:04:13,840 --> 02:04:16,840 >>-- BECAUSE THERE WAS A VERY 2715 02:04:16,840 --> 02:04:17,760 LARGE IMMIGRANT POLISH 2716 02:04:17,760 --> 02:04:19,400 COMMUNITY WHICH I GUESS IS TO 2717 02:04:19,400 --> 02:04:21,360 SAY IT GOES ALONG WITH KNOWING 2718 02:04:21,360 --> 02:04:23,840 YOUR NUMBERS AS YOU MENTIONED 2719 02:04:23,840 --> 02:04:24,800 EARLIER -- 2720 02:04:24,800 --> 02:04:25,280 >>RIGHT. 2721 02:04:25,280 --> 02:04:26,560 >>-- BECAUSE THEY KNEW ENOUGH 2722 02:04:26,560 --> 02:04:28,520 TO KNOW THEY WOULD HAVE LOST 2723 02:04:28,520 --> 02:04:29,880 THE OPPORTUNITY TO ENROLL THAT 2724 02:04:29,880 --> 02:04:33,640 GROUP IF THEY HAD NOT 2725 02:04:33,640 --> 02:04:37,760 TRANSLATED THINGS INTO TOLL 2726 02:04:37,760 --> 02:04:38,480 POLISH. 2727 02:04:38,480 --> 02:04:40,560 >>THAT WAS A GREAT QUESTION. 2728 02:04:40,560 --> 02:04:42,440 >>SO WHAT ASPECT OF VARIETY 2729 02:04:42,440 --> 02:04:44,000 SHOULD BE IN CLINICAL TRIALS 2730 02:04:44,000 --> 02:04:46,160 AND THIS CAN BE A FIRST STEP 2731 02:04:46,160 --> 02:04:47,000 IN THE CONVERSATION WE WILL 2732 02:04:47,000 --> 02:04:47,480 CONTINUE. 2733 02:04:47,480 --> 02:04:49,280 I HAVE A CASE FOR DISCUSSION 2734 02:04:49,280 --> 02:04:51,800 FOR OUR LAST HALF HOUR WHERE 2735 02:04:51,800 --> 02:04:54,080 WE SORT OF EXPLORE A NUMBER OF 2736 02:04:54,080 --> 02:04:55,880 ISSUES AS IT RELATES TO NOW 2737 02:04:55,880 --> 02:04:58,040 THAT WE HAVE HAD ALL THESE 2738 02:04:58,040 --> 02:05:00,080 LECTURES, WHAT SHOULD BE OUR 2739 02:05:00,080 --> 02:05:00,560 PRIORITY? 2740 02:05:00,560 --> 02:05:05,680 INTO WE'LL GIVE THE STUDENTS A 2741 02:05:05,680 --> 02:05:06,920 CHANCE TO PUT IN SOME 2742 02:05:06,920 --> 02:05:09,680 SUGGESTIONS AND OF COURSE, YOU 2743 02:05:09,680 --> 02:05:11,760 KNOW, THIS CAN JUST BE -- 2744 02:05:11,760 --> 02:05:14,040 THESE ARE ALL YOUR OPINIONS, 2745 02:05:14,040 --> 02:05:15,480 THERE IS NO RIGHT OR WRONG 2746 02:05:15,480 --> 02:05:17,360 ANSWER TO THIS QUESTION. 2747 02:05:17,360 --> 02:05:17,720 >>RIGHT. 2748 02:05:17,720 --> 02:05:24,240 >>OH, WE HAVE GOT A LOT OF 2749 02:05:24,240 --> 02:05:24,800 PARTICIPANTS TYPING. 2750 02:05:24,800 --> 02:05:26,560 REALLY DEPENDS ON WHAT YOU ARE 2751 02:05:26,560 --> 02:05:29,240 STUDYING, THAT IS A GOOD 2752 02:05:29,240 --> 02:05:30,080 ANSWER. 2753 02:05:30,080 --> 02:05:31,800 LANGUAGE, ENVIRONMENT, SEX, 2754 02:05:31,800 --> 02:05:35,120 DISEASE FACTORS, TRANSPARENCY 2755 02:05:35,120 --> 02:05:37,520 AND EQUALITY, SOCIOECONOMIC 2756 02:05:37,520 --> 02:05:37,880 FACTORS. 2757 02:05:37,880 --> 02:05:40,240 A LOT OF FOLKS HAVE MULTIPLE 2758 02:05:40,240 --> 02:05:42,560 THINGS IN THEIR ANSWERS SO NOT 2759 02:05:42,560 --> 02:05:46,160 JUST FOR RACE OR ETHNICITY PUT 2760 02:05:46,160 --> 02:05:51,280 SOCIAL DETERMINANTS OF HEALTH, 2761 02:05:51,280 --> 02:05:53,320 SOCIOECONOMIC STATUS, RACE AND 2762 02:05:53,320 --> 02:05:54,400 MINORITY GROUPS, SOCIAL 2763 02:05:54,400 --> 02:05:55,880 DIVERSITY I GUESS IS ANOTHER 2764 02:05:55,880 --> 02:06:01,240 WAY OF SAYING, YOU KNOW, 2765 02:06:01,240 --> 02:06:05,640 DIFFERENT SOCIAL DETERMINANTS. 2766 02:06:05,640 --> 02:06:06,480 COMORBIDITIES, HEALTH BELIEFS 2767 02:06:06,480 --> 02:06:07,960 AS YOU MENTIONED AND A COUPLE 2768 02:06:07,960 --> 02:06:11,080 MORE, WE HAVE A COUPLE MORE 2769 02:06:11,080 --> 02:06:12,320 FOR GENDER, RACE AND AGE. 2770 02:06:12,320 --> 02:06:14,920 THAT SEEMS TO BE A COMMON 2771 02:06:14,920 --> 02:06:16,280 RESPONSE FROM FOLKS AND I WILL 2772 02:06:16,280 --> 02:06:24,800 LET YOU TAKE IT AWAY. 2773 02:06:24,800 --> 02:06:25,280 >>OKAY, GREAT. 2774 02:06:25,280 --> 02:06:26,160 AND THE SECOND QUESTION, I 2775 02:06:26,160 --> 02:06:28,200 DON'T KNOW IF THAT IS IN SLIDO 2776 02:06:28,200 --> 02:06:29,360 AS WELL -- 2777 02:06:29,360 --> 02:06:31,480 >>IT IS. 2778 02:06:31,480 --> 02:06:32,520 >>-- OKAY GREAT. 2779 02:06:32,520 --> 02:06:33,440 WITH THE CONSTRUCTION, THERE 2780 02:06:33,440 --> 02:06:37,280 IS A PI OR STUDY COORDINATOR 2781 02:06:37,280 --> 02:06:39,280 BUT IF YOU SAID OKAY WE'RE 2782 02:06:39,280 --> 02:06:42,520 GOING TO HAVE THE DREAM STUDY 2783 02:06:42,520 --> 02:06:43,920 AND WHAT TYPES OF PEOPLE 2784 02:06:43,920 --> 02:06:48,480 SHOULD BE ON THAT TEAM, SO IS 2785 02:06:48,480 --> 02:06:51,000 IT LIKE ROLES, SKILLS OF THAT 2786 02:06:51,000 --> 02:06:53,680 STUDY TEAM, WHAT, IF YOU HAD 2787 02:06:53,680 --> 02:06:55,360 TO CREATE THE PERFECT STUDY 2788 02:06:55,360 --> 02:07:01,200 TEAM, WHAT WOULD THAT LOOK 2789 02:07:01,200 --> 02:07:04,320 LIKE AND WHY SHOULD IT BE 2790 02:07:04,320 --> 02:07:04,680 INVOLVED? 2791 02:07:04,680 --> 02:07:06,240 >>SOME PEOPLE HAVE MENTIONED 2792 02:07:06,240 --> 02:07:07,640 I SHOULD MENTION THE WORD OF 2793 02:07:07,640 --> 02:07:10,200 THE DAY AGAIN WHICH I WILL DO, 2794 02:07:10,200 --> 02:07:11,480 IT IS EQUITY, OUR THEME AND 2795 02:07:11,480 --> 02:07:13,080 WORD OF THE DAY. 2796 02:07:13,080 --> 02:07:20,400 SO HERE IS MORE ENPOINTE 2797 02:07:20,400 --> 02:07:20,880 QUESTIONS. 2798 02:07:20,880 --> 02:07:21,760 SO MULTISTAKEHOLDER, 2799 02:07:21,760 --> 02:07:23,040 NONSCIENTIFIC FOLKS, THOSE 2800 02:07:23,040 --> 02:07:24,080 MORE FAMILIAR WITH COMMUNITY 2801 02:07:24,080 --> 02:07:27,240 AND AS YOU MENTIONED, LIKE 2802 02:07:27,240 --> 02:07:29,080 TRANSPORT MAPS, SOMEONE WHO 2803 02:07:29,080 --> 02:07:31,280 ACTUALLY IS MAYBE FRIENDLY TO 2804 02:07:31,280 --> 02:07:35,480 THE COMMUNITY AND FAMILIAR 2805 02:07:35,480 --> 02:07:36,720 WITH THAT. 2806 02:07:36,720 --> 02:07:38,240 AGAIN, IT DEPENDS ON THE 2807 02:07:38,240 --> 02:07:38,680 STUDY. 2808 02:07:38,680 --> 02:07:41,040 THIS IS A SMART GROUP WHO 2809 02:07:41,040 --> 02:07:42,320 KNOWS WE TAILOR CERTAIN 2810 02:07:42,320 --> 02:07:42,680 STUDIES. 2811 02:07:42,680 --> 02:07:44,560 A LOT OF VOTES ARE PEOPLE FROM 2812 02:07:44,560 --> 02:07:45,680 THE COMMUNITY. 2813 02:07:45,680 --> 02:07:47,760 AND AGAIN, I WILL EDITORIALIZE 2814 02:07:47,760 --> 02:07:49,200 THAT AND SAY THE COMMUNITY 2815 02:07:49,200 --> 02:07:55,600 FROM WHICH YOU ARE HOPING TO 2816 02:07:55,600 --> 02:07:59,840 IDENTIFY SO IF YOU ARE AT NYU 2817 02:07:59,840 --> 02:08:01,440 AND INTERESTED IN ENROLLING 2818 02:08:01,440 --> 02:08:04,560 WOMEN WHO ARE PRIMARILY 2819 02:08:04,560 --> 02:08:06,520 SPANISH SPEAKERS WHO LIVE IN 2820 02:08:06,520 --> 02:08:08,000 THE BRONX, THEN YOU MIGHT WANT 2821 02:08:08,000 --> 02:08:11,400 TO ASK SOMEONE WHO HAS THOSE 2822 02:08:11,400 --> 02:08:12,040 CHARACTERISTICS. 2823 02:08:12,040 --> 02:08:13,120 >>RIGHT. 2824 02:08:13,120 --> 02:08:13,760 HAS A OUTLY. 2825 02:08:13,760 --> 02:08:18,200 WELL GREAT, THOSE ARE GREAT 2826 02:08:18,200 --> 02:08:21,520 ANSWERS AND THAT FITS INTO MY 2827 02:08:21,520 --> 02:08:24,800 TALK SO I WILL STOP SHARING 2828 02:08:24,800 --> 02:08:27,560 BUT I REALLY APPRECIATE 2829 02:08:27,560 --> 02:08:28,920 HEARING ALL YOUR GREAT 2830 02:08:28,920 --> 02:08:29,280 FEEDBACK. 2831 02:08:29,280 --> 02:08:31,640 >>AND DO YOU HAVE ANY -- LIKE 2832 02:08:31,640 --> 02:08:34,160 IS THERE -- LIKE IF I PUT THE 2833 02:08:34,160 --> 02:08:36,960 QUESTION TO YOU, LIKE OF ALL 2834 02:08:36,960 --> 02:08:38,680 THE THINGS, AND THIS IS, I 2835 02:08:38,680 --> 02:08:40,600 KNOW, A REALLY HARD QUESTION 2836 02:08:40,600 --> 02:08:42,920 BECAUSE IT WILL ALWAYS DEPEND 2837 02:08:42,920 --> 02:08:45,320 ON THE STUDY, I WILL TAKE MY 2838 02:08:45,320 --> 02:08:47,640 MASK OFF SO PEOPLE CAN HEAR ME 2839 02:08:47,640 --> 02:08:49,280 A LITTLE BETTER, OF ALL THE 2840 02:08:49,280 --> 02:08:50,880 THINGS WE MIGHT SORT OF WANT 2841 02:08:50,880 --> 02:08:53,520 TO FOCUSES ON OR IF WE COULD 2842 02:08:53,520 --> 02:08:55,600 ONLY FOCUS ON ONE THING, AGAIN 2843 02:08:55,600 --> 02:08:56,760 PERHAPS THINKING ABOUT OUR 2844 02:08:56,760 --> 02:09:04,440 PAST IN TERMS OF HOW INCLUSIVE 2845 02:09:04,440 --> 02:09:05,960 WE HAVE BEEN, IS THERE A GROUP 2846 02:09:05,960 --> 02:09:09,040 OR IF I CAME TO YOU AND SAID I 2847 02:09:09,040 --> 02:09:10,120 CAN'T PRIORITIZE EVERYONE BUT 2848 02:09:10,120 --> 02:09:13,600 I REALLY WANT MY STUDY TO BE 2849 02:09:13,600 --> 02:09:15,200 DIVERSE, HOW SHOULD I FOCUS MY 2850 02:09:15,200 --> 02:09:18,960 ATTENTION AS IT RELATES TO 2851 02:09:18,960 --> 02:09:19,320 DIVERSITY? 2852 02:09:19,320 --> 02:09:23,840 >>YEAH, SO I WOULD SAY 2853 02:09:23,840 --> 02:09:26,800 THAT -- USUALLY IT DEPENDS BUT 2854 02:09:26,800 --> 02:09:28,960 I WOULD SAY I WOULD REALLY 2855 02:09:28,960 --> 02:09:32,360 FOCUS -- I OF LATE HAVE BEEN 2856 02:09:32,360 --> 02:09:34,200 INTERESTED IN AGE DIVERSITY IN 2857 02:09:34,200 --> 02:09:36,040 PART BECAUSE A LOT OF OUR 2858 02:09:36,040 --> 02:09:37,680 DRUGS AND DEVICES AND SENATOR 2859 02:09:37,680 --> 02:09:40,400 THINGS HAVE BEEN IN SOMEWHAT 2860 02:09:40,400 --> 02:09:41,800 YOUNGER, HEALTHIER POPULATIONS 2861 02:09:41,800 --> 02:09:45,160 AND SO I DO THINK MAYBE IT HAS 2862 02:09:45,160 --> 02:09:46,520 ALWAYS BEEN A CONVERSATION BUT 2863 02:09:46,520 --> 02:09:49,880 I THINK MORE RECENTLY THERE 2864 02:09:49,880 --> 02:09:51,640 HAS BEEN MORE CONVERSATION ON 2865 02:09:51,640 --> 02:09:54,160 DIVERSITY OF AGE AND REALLY 2866 02:09:54,160 --> 02:09:56,000 THINK ABOUT INTERVENTION 2867 02:09:56,000 --> 02:09:56,600 THROUGHOUT THE LIFESPAN. 2868 02:09:56,600 --> 02:09:58,880 SO I MEAN IF YOU GET LIKE 2869 02:09:58,880 --> 02:10:01,080 PREAGE, YOU WOULD SAY PREGNANT 2870 02:10:01,080 --> 02:10:02,920 WOMEN BUT ALSO LIKE CHILDREN 2871 02:10:02,920 --> 02:10:05,680 AND YOU COULD THINK ABOUT WHAT 2872 02:10:05,680 --> 02:10:14,560 COVID WAS, LIKE A REALLY GREAT 2873 02:10:14,560 --> 02:10:16,680 EXAMPLE REALLY EVALUATING 2874 02:10:16,680 --> 02:10:18,880 VACCINES TO AGES DIVERSITY 2875 02:10:18,880 --> 02:10:22,640 SORE THOSE OVER 65 OR MIDDLE 2876 02:10:22,640 --> 02:10:25,160 AGED AND YOUNGER PEOPLE. 2877 02:10:25,160 --> 02:10:27,120 NOT THAT I THINK IT IS OVERLY 2878 02:10:27,120 --> 02:10:28,400 IMPORTANT BUT NOT ENOUGH 2879 02:10:28,400 --> 02:10:30,240 ATTENTION HAS BEEN FOCUSED ON 2880 02:10:30,240 --> 02:10:33,680 A I AND IT IS A LITTLE 2881 02:10:33,680 --> 02:10:35,160 INTERESTING AND LITTLE SCARY 2882 02:10:35,160 --> 02:10:40,040 TO THINK ABOUT ALL THE DRUGS 2883 02:10:40,040 --> 02:10:41,520 AVAILABLE NOW THAT HAVEN'T 2884 02:10:41,520 --> 02:10:44,360 TRIED THE FULL AGE DIVERSITY 2885 02:10:44,360 --> 02:10:46,400 WHICH WOULD BE IDEAL AND WHAT 2886 02:10:46,400 --> 02:10:48,600 IS IT THAT MEAN, RIGHT? 2887 02:10:48,600 --> 02:10:50,920 HIKE IF YOU HAVE TROOPS OF 2888 02:10:50,920 --> 02:10:53,120 PEOPLE OVER AGE 65 OR 75, 2889 02:10:53,120 --> 02:10:55,440 WOULD BE MORE LIKELY TO HAVE 2890 02:10:55,440 --> 02:10:57,920 THESE CONDITIONS AND THESE 2891 02:10:57,920 --> 02:10:59,400 MEDICATIONS FOR THESE THINGS 2892 02:10:59,400 --> 02:11:00,440 AND NOT FULLY REPRESENTED IN 2893 02:11:00,440 --> 02:11:05,320 THE TRIALS. 2894 02:11:05,320 --> 02:11:08,480 SO A 75-YEAR-OLD WOULD NOT BE 2895 02:11:08,480 --> 02:11:09,800 CONSIDERED LIKE A 40-YEAR-OLD 2896 02:11:09,800 --> 02:11:14,000 AND IF THE SUBJECT IS A KID, 2897 02:11:14,000 --> 02:11:19,840 THEN THERE ARE OTHER 2898 02:11:19,840 --> 02:11:23,000 PSYCHOLOGICAL AND OTHER 2899 02:11:23,000 --> 02:11:23,560 THINGS. 2900 02:11:23,560 --> 02:11:25,160 >> RIGHT, WE TALKED ABOUT YOU 2901 02:11:25,160 --> 02:11:29,640 JOINED US ABOUT NIH 2902 02:11:29,640 --> 02:11:31,080 ORIENTATION OF GUIDELINES TO 2903 02:11:31,080 --> 02:11:32,720 BE KIDS AND THOSE AT THE 2904 02:11:32,720 --> 02:11:34,680 HIGHER END AND AS SOMEONE 2905 02:11:34,680 --> 02:11:37,320 AGING, THAT WILL BE REALLY 2906 02:11:37,320 --> 02:11:38,600 IMPORTANT TO ME. 2907 02:11:38,600 --> 02:11:45,800 >> YEAH, I WOULD SAY FOR THE 2908 02:11:45,800 --> 02:11:46,840 RECRUITMENT AND RETENTION PLAN 2909 02:11:46,840 --> 02:11:49,840 I DIRECT, THERE IS A 2910 02:11:49,840 --> 02:12:00,200 PEDIATRICIAN AND A 2911 02:12:01,040 --> 02:12:02,120 GERIATRICIAN AND WE MAKE THE 2912 02:12:02,120 --> 02:12:03,280 CASE THAT SOMETIMES THE 2913 02:12:03,280 --> 02:12:05,040 STUDIES SHOULD BE DONE IN 2914 02:12:05,040 --> 02:12:06,400 PARALLEL BECAUSE IT TAKES SO 2915 02:12:06,400 --> 02:12:08,480 LONG TO DO THE ADULT TRIALS 2916 02:12:08,480 --> 02:12:11,000 AND YOU WAIT FOR MANY MANY 2917 02:12:11,000 --> 02:12:12,960 YEARS FOR THE RESULTS. 2918 02:12:12,960 --> 02:12:15,280 SO SOMETHING LIKE A VACCINE 2919 02:12:15,280 --> 02:12:20,360 WHERE YOU HAVE TO WAIT FOR THE 2920 02:12:20,360 --> 02:12:24,160 ADULT STUFF, CHILDREN HAVE TO 2921 02:12:24,160 --> 02:12:24,480 WAIT. 2922 02:12:24,480 --> 02:12:27,120 >>AND WE HAVE THE SORT OF 2923 02:12:27,120 --> 02:12:28,760 PERFECT EXAMPLE OF THAT, LIKE 2924 02:12:28,760 --> 02:12:31,600 WITH THE COVID VACCINES, WE 2925 02:12:31,600 --> 02:12:36,560 GOT IT FOR ADULTS PRETTY 2926 02:12:36,560 --> 02:12:40,560 QUICKLY BUT THEN HAD TO WAIT 2927 02:12:40,560 --> 02:12:41,640 APPROPRIATELY PERHAPS FOR 2928 02:12:41,640 --> 02:12:42,080 KIDS. 2929 02:12:42,080 --> 02:12:46,640 THERE WILL ALWAYS BE A RISK 2930 02:12:46,640 --> 02:12:47,640 BENEFIT ASSESSMENT CLINICIANS 2931 02:12:47,640 --> 02:12:49,800 ARE IN EVERY DAY WHETHER THEY 2932 02:12:49,800 --> 02:12:55,000 WILL GIVE A KID THE TREATMENT 2933 02:12:55,000 --> 02:12:57,680 THAT WAS GIVEN TO ADULTS AND 2934 02:12:57,680 --> 02:13:00,960 DIDN'T HAVE TO HAVE A 2935 02:13:00,960 --> 02:13:01,760 PEDIATRIC TRIAL. 2936 02:13:01,760 --> 02:13:06,560 ANY QUESTIONS FROM THE GROUP? 2937 02:13:06,560 --> 02:13:11,760 SO MICHELLE WILL ASK A 2938 02:13:11,760 --> 02:13:12,120 QUESTION. 2939 02:13:12,120 --> 02:13:14,520 >>HI, THANK YOU SO MUCH FOR 2940 02:13:14,520 --> 02:13:16,160 THE TALK AND I KNOW THERE IS 2941 02:13:16,160 --> 02:13:22,960 THIS ROLE THAT A LOT OF 2942 02:13:22,960 --> 02:13:23,920 COMMUNITIES, LIKE THE BLACK 2943 02:13:23,920 --> 02:13:26,640 COMMUNITY WOULD HAVE A 2944 02:13:26,640 --> 02:13:28,320 MISTRUST OF PARTICIPATING IN 2945 02:13:28,320 --> 02:13:31,360 CLINICAL TRIALS BECAUSE OF 2946 02:13:31,360 --> 02:13:33,760 TUSKOGEE BUT THERE IS A 2947 02:13:33,760 --> 02:13:39,400 REVERSE TO THAT IDEA THAT IT 2948 02:13:39,400 --> 02:13:42,840 IS OVER SIMPLISTIC AND SO I AM 2949 02:13:42,840 --> 02:13:44,560 WONDERING HOW NOW THINKING 2950 02:13:44,560 --> 02:13:46,600 ABOUT INCLUSION, HOW YOU 2951 02:13:46,600 --> 02:13:52,480 INTEGRATE MISTRUST IF AT ALL? 2952 02:13:52,480 --> 02:13:52,880 >>RIGHT. 2953 02:13:52,880 --> 02:13:55,160 SO I DON'T GO TO MISTRUST 2954 02:13:55,160 --> 02:13:55,480 FIRST. 2955 02:13:55,480 --> 02:13:57,560 I WOULD SAY USUALLY WHEN I AM 2956 02:13:57,560 --> 02:14:01,440 DOING MY OWN STUDIES OR DOING 2957 02:14:01,440 --> 02:14:03,320 A CONSULTATION, I AM REALLY 2958 02:14:03,320 --> 02:14:04,600 FOCUSING ON WHEN DO PEOPLE 2959 02:14:04,600 --> 02:14:06,560 KNOW ABOUT IT, HOW ARE THEY 2960 02:14:06,560 --> 02:14:09,000 INVITED AND HOW ARE YOU MAKING 2961 02:14:09,000 --> 02:14:11,600 THE BURDEN AS MINIMIZED AS 2962 02:14:11,600 --> 02:14:12,280 POSSIBLE. 2963 02:14:12,280 --> 02:14:14,520 NOW, I THINK IF MISTRUST COMES 2964 02:14:14,520 --> 02:14:16,240 UP, THEN I THINK YOU COULD 2965 02:14:16,240 --> 02:14:20,640 TALK ABOUT IT BUT THERE'S 2966 02:14:20,640 --> 02:14:24,160 DIFFERING APPROACH OWES ES 2967 02:14:24,160 --> 02:14:25,720 AROUND ADDRESSING THE ELEPHANT 2968 02:14:25,720 --> 02:14:28,120 IN THE ROOM BUT YOU ARE 2969 02:14:28,120 --> 02:14:29,240 SUGGESTING THE ELEPHANT IS 2970 02:14:29,240 --> 02:14:31,040 WHETHER PEOPLE ARE 2971 02:14:31,040 --> 02:14:32,920 PARTICIPATING OR NOT BUT IT 2972 02:14:32,920 --> 02:14:35,240 MAY BE THAT THEY ARE HAPPY TO 2973 02:14:35,240 --> 02:14:38,560 PARTICIPATE AND YOUR STUDY IS 2974 02:14:38,560 --> 02:14:40,160 ONLY DOING SOMETHING FROM 2975 02:14:40,160 --> 02:14:42,160 10:00 A.M. TO 2:00 P.M. ON 2976 02:14:42,160 --> 02:14:44,720 THURSDAY AND WERE IT SATURDAY, 2977 02:14:44,720 --> 02:14:47,720 MORE PEOPLE MIGHT PARTICIPATE. 2978 02:14:47,720 --> 02:14:51,720 SO I TEND TO NOT FOCUS ON 2979 02:14:51,720 --> 02:14:52,640 MISTRUST AND NOT THAT I DON'T 2980 02:14:52,640 --> 02:14:56,240 THINK IT IS A REAL THING BUT A 2981 02:14:56,240 --> 02:14:58,560 LOT OF DISPARITIES IN CLINICAL 2982 02:14:58,560 --> 02:15:02,000 TRIALS MAY BE MORE FOCUS D ON 2983 02:15:02,000 --> 02:15:03,640 STATISTICAL ISSUES AND 2984 02:15:03,640 --> 02:15:05,760 INCLUSION AND EXCLUSION 2985 02:15:05,760 --> 02:15:07,160 CRITERIA AND EVEN THOUGH 2986 02:15:07,160 --> 02:15:08,520 MISTRUST IS IMPORTANT FOR SOME 2987 02:15:08,520 --> 02:15:10,560 PEOPLE, IT IS NOT THE 2988 02:15:10,560 --> 02:15:11,840 DOMINATING THING FOR ALL 2989 02:15:11,840 --> 02:15:14,560 PEOPLE SO I WOULD FOCUS ON THE 2990 02:15:14,560 --> 02:15:16,200 CHARACTERISTICS OF MAKING SURE 2991 02:15:16,200 --> 02:15:20,200 PEOPLE NOW ABOUT IT AND WERE 2992 02:15:20,200 --> 02:15:22,000 INVITED AS MY FIRST STEP. 2993 02:15:22,000 --> 02:15:24,240 >>YES, AND THIS IS HOLLY. 2994 02:15:24,240 --> 02:15:27,320 I THINK BY COVID THERE WAS 2995 02:15:27,320 --> 02:15:30,080 THIS SORT OF REORIENTATION OF 2996 02:15:30,080 --> 02:15:32,240 YES, THERE IS SOME MISTRUST 2997 02:15:32,240 --> 02:15:35,440 BUT DON'T USE THAT -- YOU 2998 02:15:35,440 --> 02:15:39,280 CAN'T LOOK AT DATA AND GO GEE, 2999 02:15:39,280 --> 02:15:41,680 THIS LOOKS LIKE MANY MORE WAIT 3000 02:15:41,680 --> 02:15:44,160 TO PEOPLE JOINED AND NOT MANY 3001 02:15:44,160 --> 02:15:46,960 OTHERS DID, IT MUST BE BECAUSE 3002 02:15:46,960 --> 02:15:48,200 THEY PROVIDES TRUST AND IN 3003 02:15:48,200 --> 02:15:52,840 FACT IT IS BECAUSE THE BUS 3004 02:15:52,840 --> 02:15:54,600 SYSTEM IS TERRIBLE OR WHATEVER 3005 02:15:54,600 --> 02:15:56,720 THE OTHER STRUCTURAL BARRIERS 3006 02:15:56,720 --> 02:15:57,120 ARE. 3007 02:15:57,120 --> 02:15:59,560 >>AND THE COVID-19 VACCINE 3008 02:15:59,560 --> 02:16:00,240 STUDIES, THEY WEREN'T PERFECT 3009 02:16:00,240 --> 02:16:02,480 BUT THERE WAS A PRETTY GOOD 3010 02:16:02,480 --> 02:16:03,680 POOL OF DIVERSITY AND I THINK 3011 02:16:03,680 --> 02:16:05,560 IN PART THERE WAS A 3012 02:16:05,560 --> 02:16:07,280 CONCENTRATED EFFORT TO WORK 3013 02:16:07,280 --> 02:16:08,800 WITH COMMUNITY GROUPS AND 3014 02:16:08,800 --> 02:16:10,880 CHURCHES AND COMMUNITY BASED 3015 02:16:10,880 --> 02:16:12,480 ORGANIZATIONS SO ACTUALLY LIKE 3016 02:16:12,480 --> 02:16:14,440 A REAL LIFE CASE STUDY THAT IT 3017 02:16:14,440 --> 02:16:15,600 IS POSSIBLE. 3018 02:16:15,600 --> 02:16:16,760 AGAIN, IT WASN'T PERFECT BUT 3019 02:16:16,760 --> 02:16:20,960 IT WAS PRETTY GOOD. 3020 02:16:20,960 --> 02:16:22,840 >>GREAT, THANK YOU SO MUCH 3021 02:16:22,840 --> 02:16:23,880 FOR JOINING US. 3022 02:16:23,880 --> 02:16:25,160 >>THANK YOU, I APPRECIATE IT. 3023 02:16:25,160 --> 02:16:26,920 >>AND HOPE YOU HAVE A LOVELY 3024 02:16:26,920 --> 02:16:29,040 REST OF YOUR DAY. 3025 02:16:29,040 --> 02:16:31,240 >>OKAY, TAKE CARE. 3026 02:16:31,240 --> 02:16:33,440 >>THANKS A LOT. 3027 02:16:33,440 --> 02:16:34,760 SO EVERYBODY IS NOW STUCK WITH 3028 02:16:34,760 --> 02:16:39,640 ME FOR THE LAST PART OF THE 3029 02:16:39,640 --> 02:16:41,800 SESSION AND I REALLY WANT TO 3030 02:16:41,800 --> 02:16:48,720 SORT OF FOCUS IN ON AT LEAST A 3031 02:16:48,720 --> 02:16:50,760 QUESTION I HAVE ASKED MYSELF 3032 02:16:50,760 --> 02:16:52,320 RED TORQUELY AND ART CHAPLAIN 3033 02:16:52,320 --> 02:16:56,840 WHO HAPPENS TO BE A COLLEAGUE 3034 02:16:56,840 --> 02:16:59,000 OF Dr. LANGFORD'S AT NYU, 3035 02:16:59,000 --> 02:17:00,440 WHEN WE WOULD TALK -- WHEN 3036 02:17:00,440 --> 02:17:02,160 THERE WAS DISCUSSION ABOUT 3037 02:17:02,160 --> 02:17:03,640 INCLUSION IN CLINICAL TRIALS 3038 02:17:03,640 --> 02:17:09,160 RECENTLY, AND THIS HAS BEEN 3039 02:17:09,160 --> 02:17:12,360 EARLIER THIS YEAR, HE PUT THIS 3040 02:17:12,360 --> 02:17:14,000 BLOG OUT AND I AM JUST 3041 02:17:14,000 --> 02:17:15,160 CAUGHTING AND PASTING THE PART 3042 02:17:15,160 --> 02:17:16,360 THAT I THOUGHT WAS MOST 3043 02:17:16,360 --> 02:17:18,520 INTERESTING AS A WAY TO SPARK 3044 02:17:18,520 --> 02:17:19,920 SOME CONVERSATION IN THIS LAST 3045 02:17:19,920 --> 02:17:20,720 HALF HOUR. 3046 02:17:20,720 --> 02:17:23,360 I ALSO HAVE SOME SLIDO 3047 02:17:23,360 --> 02:17:25,640 QUESTIONS FOR FOLKS SO KEEP 3048 02:17:25,640 --> 02:17:27,000 THAT OPEN ON YOUR COMPUTERS. 3049 02:17:27,000 --> 02:17:28,640 SO I AM JUST GOING TO READ 3050 02:17:28,640 --> 02:17:30,520 THIS FOR THOSE OF YOU WHO MAY 3051 02:17:30,520 --> 02:17:33,040 NOT HAVE IT IN FRONT OF YOU. 3052 02:17:33,040 --> 02:17:35,640 SO HE SAYS THERE IS YET 3053 02:17:35,640 --> 02:17:36,400 ANOTHER UNEXPLORED CHALLENGE 3054 02:17:36,400 --> 02:17:39,240 AMID ALL THE CALLS FOR 3055 02:17:39,240 --> 02:17:41,640 DIVERSITY -- THE CONTINUED USE 3056 02:17:41,640 --> 02:17:44,120 OF OUTDATED RACIAL CATEGORIES 3057 02:17:44,120 --> 02:17:44,760 TO MEASURE INCLUSIVITY. 3058 02:17:44,760 --> 02:17:47,400 IN THE AGE OF PRECISION 3059 02:17:47,400 --> 02:17:49,120 MEDICINE AND EXPLODING 3060 02:17:49,120 --> 02:17:50,640 KNOWLEDGE OF GENETICS, IT 3061 02:17:50,640 --> 02:17:53,160 HARDLY MAKES SENSE TO TALK 3062 02:17:53,160 --> 02:17:55,000 ABOUT ASIAN, BLACK, HISPANIC 3063 02:17:55,000 --> 02:17:57,160 AND WHITE AS MON LIT THEY CAN 3064 02:17:57,160 --> 02:17:58,120 BIOLOGICAL CLASSES. 3065 02:17:58,120 --> 02:18:08,600 THE NOTION THAT CATEGORIES 3066 02:18:09,000 --> 02:18:11,920 BASED ON GRIM HISTORICS OF 3067 02:18:11,920 --> 02:18:15,240 RACISM AND PREJUDICE OUGHT TO 3068 02:18:15,240 --> 02:18:19,000 GUIDE SUBJECT RECRUITMENT IN 3069 02:18:19,000 --> 02:18:24,280 AN ERA OF MULTIRACIAL IDENTITY 3070 02:18:24,280 --> 02:18:25,520 KNOWN GENETIC VARIABILITY 3071 02:18:25,520 --> 02:18:28,400 WITHIN GROUPS AND WIDE GENETIC 3072 02:18:28,400 --> 02:18:30,840 VARIATION IN THE SOCIAL 3073 02:18:30,840 --> 02:18:35,680 CATEGORIES BEING INVOKED IS 3074 02:18:35,680 --> 02:18:36,920 OUTDATED AND INACCURATE. 3075 02:18:36,920 --> 02:18:41,000 CLINICAL TRIALS IN THE U.S. 3076 02:18:41,000 --> 02:18:45,960 HAVE LONG SKUD TOWARD 3077 02:18:45,960 --> 02:18:49,560 RECRUITING MOSTLY WHITE 3078 02:18:49,560 --> 02:18:49,920 PEOPLE. 3079 02:18:49,920 --> 02:18:58,520 AND POINTING TOWARDS ACROSS -- 3080 02:18:58,520 --> 02:19:02,280 ACCESS TO TRIALS AS A BENEFIT 3081 02:19:02,280 --> 02:19:03,800 TO JUSTIFY EFFORTS AT 3082 02:19:03,800 --> 02:19:06,600 DIVERSITY WHEN SO MANY 3083 02:19:06,600 --> 02:19:09,280 AMERICANS ARE UNINSURED OR 3084 02:19:09,280 --> 02:19:11,560 SADDLED WITH CRIPPLING MEDICAL 3085 02:19:11,560 --> 02:19:14,160 DEBT THAT MEAN THEY CANNOT 3086 02:19:14,160 --> 02:19:15,760 ACCESS THE BREAKTHROUGHS OF 3087 02:19:15,760 --> 02:19:16,640 RESEARCH MAKES EVEN LESS 3088 02:19:16,640 --> 02:19:16,960 SENSE. 3089 02:19:16,960 --> 02:19:19,640 SO I THINK WHAT HE IS SAYING 3090 02:19:19,640 --> 02:19:22,160 IS ARE WE ENCOURAGING THE 3091 02:19:22,160 --> 02:19:23,760 RIGHT OPTION WHEN EXPANDING 3092 02:19:23,760 --> 02:19:24,960 FOR INCLUSION AND I THINK THE 3093 02:19:24,960 --> 02:19:27,880 ONE THING HE IS SAYING IS 3094 02:19:27,880 --> 02:19:29,320 MAYBE GENETICS WOULD BE A 3095 02:19:29,320 --> 02:19:31,120 BETTER WAY TO ENSURE 3096 02:19:31,120 --> 02:19:31,520 DIVERSITY. 3097 02:19:31,520 --> 02:19:36,720 SO I WANT TO START THIS 3098 02:19:36,720 --> 02:19:39,560 CONVERSATION OFF WITH MY 3099 02:19:39,560 --> 02:19:43,600 QUESTION IN SLIDO WHICH I WILL 3100 02:19:43,600 --> 02:19:46,120 NOW OPEN WHICH IS IF RACE IS A 3101 02:19:46,120 --> 02:19:48,400 SOCIAL CONSTRUCT SHOULD WE 3102 02:19:48,400 --> 02:19:58,960 ABEEN A -- ABANDON IT IN THE 3103 02:20:05,000 --> 02:20:07,320 CONTEXT OF RACE IN STUDY AND 3104 02:20:07,320 --> 02:20:08,760 WHY OR WHY NOT. 3105 02:20:08,760 --> 02:20:10,600 I WILL GIVE FOLKS A LITTLE 3106 02:20:10,600 --> 02:20:12,960 TIME TO PUT THEIR ANSWERS IN. 3107 02:20:12,960 --> 02:20:19,600 A LITTLE LOPSIDED HERE AS I 3108 02:20:19,600 --> 02:20:20,400 MIGHT HAVE EXPECTED. 3109 02:20:20,400 --> 02:20:20,760 [LAUGHTER] 3110 02:20:20,760 --> 02:20:23,560 SO IT IS A PRETTY RESOUNDING 3111 02:20:23,560 --> 02:20:26,760 NO -- OH, WE HAVE A COUPLE OF 3112 02:20:26,760 --> 02:20:27,040 YESES. 3113 02:20:27,040 --> 02:20:30,920 NOW WE HAVE SOME LATE COMERS 3114 02:20:30,920 --> 02:20:32,560 WHO ARE SHIFTING A LITTLE 3115 02:20:32,560 --> 02:20:33,480 TOWARDS YES. 3116 02:20:33,480 --> 02:20:35,200 SO MY NEXT QUESTION WHICH I 3117 02:20:35,200 --> 02:20:37,320 WASN'T EXACTLY SURE HOW TO 3118 02:20:37,320 --> 02:20:39,840 OPEN IN SLIDO IS THIS SORT OF 3119 02:20:39,840 --> 02:20:40,640 WHY, WHY NOT. 3120 02:20:40,640 --> 02:20:43,040 IT SAYS WHY NOT BUT THINK OF 3121 02:20:43,040 --> 02:20:46,720 IT AS WHY, WHY NOT P-FPLT SO 3122 02:20:46,720 --> 02:20:50,800 WHY SHOULD WE NOT ABANDON THIS 3123 02:20:50,800 --> 02:20:55,840 SOCIAL CONSTRUCT AS A WAY TO 3124 02:20:55,840 --> 02:20:56,400 INFORM POLICY? 3125 02:20:56,400 --> 02:20:58,480 AND THOSE OF YOU IN THE ROOM 3126 02:20:58,480 --> 02:21:05,120 FEEL FREE TO EITHER SLIDO OR 3127 02:21:05,120 --> 02:21:06,720 GO TO THE MIC IN THE ROOM. 3128 02:21:06,720 --> 02:21:10,880 SO SOME OF THE RESPONSES HERE 3129 02:21:10,880 --> 02:21:13,960 ARE THAT IT HAS CLINICAL 3130 02:21:13,960 --> 02:21:15,600 RELEVANCE, THERE ARE ACTUAL 3131 02:21:15,600 --> 02:21:16,720 DIFFERENCES IN HEALTH 3132 02:21:16,720 --> 02:21:18,080 OUTCOMES, SOME DECISIONS THAT 3133 02:21:18,080 --> 02:21:24,920 AFFECT HEALTH MAY BE SOCIALLY 3134 02:21:24,920 --> 02:21:26,000 MOTIVATED, BECAUSE RACIAL 3135 02:21:26,000 --> 02:21:28,280 DIFFERENCES IN HEALTH ARE 3136 02:21:28,280 --> 02:21:28,600 REAL. 3137 02:21:28,600 --> 02:21:31,840 WE HAVE RACE IS A USEFUL PROXY 3138 02:21:31,840 --> 02:21:36,880 FOR OTHER DIMENSIONS IN WHICH 3139 02:21:36,880 --> 02:21:38,680 TO ENSURE DIVERSITY. 3140 02:21:38,680 --> 02:21:40,280 SADLY A MEANINGFUL GROUP, 3141 02:21:40,280 --> 02:21:42,600 ALTHOUGH WE MAY NEED TO DEFINE 3142 02:21:42,600 --> 02:21:48,920 IT AND THIS IS, I THINK, THE 3143 02:21:48,920 --> 02:21:57,120 POINT IN RESPONSE TO Dr. 3144 02:21:57,120 --> 02:21:58,400 KAPLAN'S COMMENTARY THAT WE 3145 02:21:58,400 --> 02:22:00,800 DON'T REALLY HAVE AN EASY 3146 02:22:00,800 --> 02:22:03,440 PRACTICAL WAY TO REPLACE IT. 3147 02:22:03,440 --> 02:22:07,800 IF ALL OF US HAD OUR GWOC 3148 02:22:07,800 --> 02:22:11,760 SCAN, IF SOMEONE HAD A RED 3149 02:22:11,760 --> 02:22:14,440 GENOME AND WE HAD A CHIP THAT 3150 02:22:14,440 --> 02:22:16,520 HAD OUR GENOME IN IT, IT WE 3151 02:22:16,520 --> 02:22:18,840 WERE ENROLLED IN A CLINICAL 3152 02:22:18,840 --> 02:22:21,720 TRIAL, IT MIGHT BE A WAY TO 3153 02:22:21,720 --> 02:22:23,560 DECIDE WHETHER WE ARE 3154 02:22:23,560 --> 02:22:24,000 ELIGIBLE. 3155 02:22:24,000 --> 02:22:27,720 SO WE NEED TO RESPOND TO THE 3156 02:22:27,720 --> 02:22:28,880 HISTORIC ARM. 3157 02:22:28,880 --> 02:22:30,960 NOTHING TO REPLACE IT WITH, A 3158 02:22:30,960 --> 02:22:35,840 LOT OF FOLKS THINKING ALONG 3159 02:22:35,840 --> 02:22:38,240 THE SAME LINE. 3160 02:22:38,240 --> 02:22:39,480 PRECISION MEDICINE IS EMERGING 3161 02:22:39,480 --> 02:22:42,440 AND NOT QUITE READY YET, 3162 02:22:42,440 --> 02:22:43,480 AGREED, BUT MAYBE SOMETHING WE 3163 02:22:43,480 --> 02:22:45,920 IN THIS ROOM AND THIS CLASS 3164 02:22:45,920 --> 02:22:47,080 SHOULD BE ANTICIPATING. 3165 02:22:47,080 --> 02:22:49,080 ARE THERE REASONS WHY WE MIGHT 3166 02:22:49,080 --> 02:22:56,600 WANT TO ADVOCATE FOR AN 3167 02:22:56,600 --> 02:22:57,000 ALTERNATIVE? 3168 02:22:57,000 --> 02:22:58,200 GREAT, SO THANK YOU ALL FOR 3169 02:22:58,200 --> 02:22:58,640 THAT RESPONSE. 3170 02:22:58,640 --> 02:23:01,200 I THINK THAT IS A GREAT WAY TO 3171 02:23:01,200 --> 02:23:02,120 START OUR CONVERSATION. 3172 02:23:02,120 --> 02:23:03,880 AND MY NEXT QUESTION WAS GOING 3173 02:23:03,880 --> 02:23:06,200 TO BE IS THERE A REASONABLE 3174 02:23:06,200 --> 02:23:10,160 ALTERNATIVE AND I THINK YOU 3175 02:23:10,160 --> 02:23:13,560 ALREADY ANTICIPATED THAT THERE 3176 02:23:13,560 --> 02:23:14,760 MAYBE ISN'T, RIGHT, AND THAT 3177 02:23:14,760 --> 02:23:16,680 MAY TO BE IN SURPRISE. 3178 02:23:16,680 --> 02:23:19,120 IT IS COMPLEX SO IT IS REALLY 3179 02:23:19,120 --> 02:23:22,240 HARD TO SAY AHA, LET'S USE 3180 02:23:22,240 --> 02:23:23,080 THIS INSTEAD. 3181 02:23:23,080 --> 02:23:26,880 BUT IN LISTENING TO Dr. 3182 02:23:26,880 --> 02:23:29,360 ASADA'S LECTURE, I THOUGHT 3183 02:23:29,360 --> 02:23:31,440 WHAT ABOUT THAT PROGRESS PLUS? 3184 02:23:31,440 --> 02:23:36,160 SO AS A REMINDER, PROGRESS IS 3185 02:23:36,160 --> 02:23:39,400 ABOUT PLACE MEANING WHERE YOU 3186 02:23:39,400 --> 02:23:41,000 LIVE, RACE, ETHNICITY, YOUR 3187 02:23:41,000 --> 02:23:44,480 JOB, YOUR GENDER, YOUR 3188 02:23:44,480 --> 02:23:45,400 RELIGION, EDUCATION, 3189 02:23:45,400 --> 02:23:47,040 SOCIOECONOMIC STATUS AND/OR 3190 02:23:47,040 --> 02:23:52,880 YOUR ACCESS TO SOCIAL CAPITAL. 3191 02:23:52,880 --> 02:23:54,840 SO IS THERE -- MAYBE ONE 3192 02:23:54,840 --> 02:23:57,920 CRITIQUE COULD BE USING THESE 3193 02:23:57,920 --> 02:24:00,920 PROXY MEASURES OF SKIN COLOR 3194 02:24:00,920 --> 02:24:03,880 MAY NOT ACTUALLY BE THE BEST 3195 02:24:03,880 --> 02:24:04,320 PROXY. 3196 02:24:04,320 --> 02:24:05,960 MAYBE WHAT WE NEED IS A 3197 02:24:05,960 --> 02:24:07,840 VARIABLE THAT HAS MULTIPLE 3198 02:24:07,840 --> 02:24:11,080 COMPONENTS THAT MIGHT BE A WAY 3199 02:24:11,080 --> 02:24:13,160 TO HAVE A DIVERSE POPULATION 3200 02:24:13,160 --> 02:24:16,920 ACROSS A WHOLE BUNCH OF 3201 02:24:16,920 --> 02:24:17,400 DIFFERENT AREAS. 3202 02:24:17,400 --> 02:24:19,560 SO LOOKS LIKE THERE'S SOME 3203 02:24:19,560 --> 02:24:28,000 ENTHUSIASM FOR USING PROGRESS. 3204 02:24:28,000 --> 02:24:33,760 GOT A COUPLE MORE FOLKS 3205 02:24:33,760 --> 02:24:38,200 WEIGHING IN THAT MAYBE MORE 3206 02:24:38,200 --> 02:24:39,800 TIME FOR TESTS, A GOOD IDEA. 3207 02:24:39,800 --> 02:24:42,560 SO TO ME IT SEEMS LIKE A 3208 02:24:42,560 --> 02:24:46,280 REALLY GOOD IDEA BECAUSE AT 3209 02:24:46,280 --> 02:24:47,880 LEAST ONE WORRY THAT THOSE OF 3210 02:24:47,880 --> 02:24:50,440 US IN THE ROOM ACTUALLY TALKED 3211 02:24:50,440 --> 02:24:55,400 ABOUT LAST WEEK AFTER LECTURES 3212 02:24:55,400 --> 02:24:58,040 IS IF WE, AND I WILL USE THE 3213 02:24:58,040 --> 02:25:01,240 ROYAL WE, IF WE, THE UNITED 3214 02:25:01,240 --> 02:25:02,840 STATES, CONTINUE TO ADVOCATE 3215 02:25:02,840 --> 02:25:06,360 FOR POLICIES LIKE THE ONE THAT 3216 02:25:06,360 --> 02:25:09,920 THE NIH HAD, WE OUGHT TO BE 3217 02:25:09,920 --> 02:25:11,600 ENCOURAGING INCLUSION OF 3218 02:25:11,600 --> 02:25:12,680 DIVERSE POPULATIONS AS IT 3219 02:25:12,680 --> 02:25:15,760 RELATES TO RACE AND ETHNICITY 3220 02:25:15,760 --> 02:25:16,120 STATUS. 3221 02:25:16,120 --> 02:25:20,840 THERE IS A RISK THAT WE ARE -- 3222 02:25:20,840 --> 02:25:28,320 AND I THINK BOTH Dr. ASADA 3223 02:25:28,320 --> 02:25:30,720 AND I MENTIONED THIS THAT 3224 02:25:30,720 --> 02:25:32,640 THERE IS THIS NAME CALLING AND 3225 02:25:32,640 --> 02:25:35,200 WE THINK THERE ARE BIOLOGICAL 3226 02:25:35,200 --> 02:25:36,120 DIFFERENCES BETWEEN RACES THAT 3227 02:25:36,120 --> 02:25:37,920 WE THIS ARE IMPORTANT TO 3228 02:25:37,920 --> 02:25:38,200 STUDY. 3229 02:25:38,200 --> 02:25:40,000 SO LET'S SET ASIDE FOR THE 3230 02:25:40,000 --> 02:25:43,400 MOMENT THAT THERE MIGHT BE 3231 02:25:43,400 --> 02:25:45,120 SOME -- HERE IS HOW I THINK 3232 02:25:45,120 --> 02:25:50,720 ABOUT IT IN TERMS OF IS IT 3233 02:25:50,720 --> 02:25:52,000 REALLY ZERO THAT THERE IS -- 3234 02:25:52,000 --> 02:25:53,760 IT REALLY IS A SOCIAL 3235 02:25:53,760 --> 02:25:56,920 CONSTRUCT AND THERE IS, YOU 3236 02:25:56,920 --> 02:25:57,440 KNOW, NO DIFFERENCE. 3237 02:25:57,440 --> 02:25:59,640 THERE ARE DIFFERENCES IN THE 3238 02:25:59,640 --> 02:26:01,840 FOLLOWING WAY SO YOU GUYS MAY 3239 02:26:01,840 --> 02:26:07,320 NOT BE FAMILIAR WITH THIS DRUG 3240 02:26:07,320 --> 02:26:08,840 CALLED BIVIL BUT IT WAS 3241 02:26:08,840 --> 02:26:10,120 BASICALLY A FAILED MEDICATION, 3242 02:26:10,120 --> 02:26:11,880 MEANING THAT THE CLINICAL 3243 02:26:11,880 --> 02:26:15,160 TRIAL FOR THIS STUDY SHOWED NO 3244 02:26:15,160 --> 02:26:18,960 DIFFERENCE WITH NO BETTER THAN 3245 02:26:18,960 --> 02:26:21,960 THE OLD MEDICATION, LET'S JUST 3246 02:26:21,960 --> 02:26:23,720 CALL IT FOR CARDIOVASCULAR 3247 02:26:23,720 --> 02:26:24,040 DISEASE. 3248 02:26:24,040 --> 02:26:25,800 BUT WHEN THEY DID SECONDARY 3249 02:26:25,800 --> 02:26:28,320 ANALYSIS OF THEIR DATA, IT 3250 02:26:28,320 --> 02:26:29,680 SHOWS THAT THE 3251 02:26:29,680 --> 02:26:31,640 AFRICAN-AMERICANS IN THE 3252 02:26:31,640 --> 02:26:36,360 POPULATION WERE MORE LIKELY TO 3253 02:26:36,360 --> 02:26:40,880 IMPROVE THAN OTHER GROUPS AND 3254 02:26:40,880 --> 02:26:43,320 THEN WENT FORWARD IN THE 3255 02:26:43,320 --> 02:26:46,080 MARKETING APPROVAL WITH THE 3256 02:26:46,080 --> 02:26:47,600 FDA FOR THIS DRUG TO BE A 3257 02:26:47,600 --> 02:26:50,120 SPECIFIC TREATMENT FOR AFRICAN 3258 02:26:50,120 --> 02:26:51,360 AMERICANS WHO HAD 3259 02:26:51,360 --> 02:26:52,560 CARDIOVASCULAR DISEASE. 3260 02:26:52,560 --> 02:26:54,480 NOW, IT TURNS OUT THAT THE 3261 02:26:54,480 --> 02:26:55,960 DIFFERENCE BEHIND THAT PROXY 3262 02:26:55,960 --> 02:26:59,960 WAS THAT ALL OF US, BECAUSE 3263 02:26:59,960 --> 02:27:02,120 WE'RE RELATED TO EVERYONE AND 3264 02:27:02,120 --> 02:27:05,280 HAVE GENETICS THAT ARE, YOU 3265 02:27:05,280 --> 02:27:09,000 KNOW, ALL OVER THE PLACE -- 3266 02:27:09,000 --> 02:27:09,360 [LAUGHTER] 3267 02:27:09,360 --> 02:27:13,760 -- WHAT IT REALLY HAD TO DO 3268 02:27:13,760 --> 02:27:18,280 WAS WITH THE ALILS RELATED TO 3269 02:27:18,280 --> 02:27:19,440 A PARTICULAR GENETIC 3270 02:27:19,440 --> 02:27:19,800 COMPONENT. 3271 02:27:19,800 --> 02:27:22,280 ANOTHER WAY TO SAY THAT IS IT 3272 02:27:22,280 --> 02:27:25,000 HAPPENED TO BE THAT THOSE TWO 3273 02:27:25,000 --> 02:27:26,960 WHO DID BETTER, BOTH BLACKS 3274 02:27:26,960 --> 02:27:29,680 AND WHITES HAVE THIS 3275 02:27:29,680 --> 02:27:31,680 PARTICULAR ALIL THAT MADE THEM 3276 02:27:31,680 --> 02:27:34,120 MORE LIKELY TO POSITIVELY 3277 02:27:34,120 --> 02:27:34,680 RESPOND. 3278 02:27:34,680 --> 02:27:37,040 SO IT WASN'T NECESSARILY ABOUT 3279 02:27:37,040 --> 02:27:38,840 RACE BUT IT TURNED OUT THAT 3280 02:27:38,840 --> 02:27:42,000 THE DIFFERENCES IN THE NUMBER 3281 02:27:42,000 --> 02:27:44,160 OF ALILS THAT WAS NOT NORMALLY 3282 02:27:44,160 --> 02:27:45,680 DISTRIBUTED ACROSS THE 3283 02:27:45,680 --> 02:27:48,280 POPULATION LED TO SEEING A 3284 02:27:48,280 --> 02:27:49,080 DIFFERENCE, RIGHT? 3285 02:27:49,080 --> 02:27:53,800 SO ANOTHER WAY TO SAY THAT IS 3286 02:27:53,800 --> 02:27:58,560 THAT UNTIL WE HAVE SOMETHING 3287 02:27:58,560 --> 02:28:01,160 BETTER, AT LEAST WE CAN THINK 3288 02:28:01,160 --> 02:28:07,360 ABOUT HOW IN OUR OWN WORK THAT 3289 02:28:07,360 --> 02:28:09,200 WE'RE NOT DEFAULTING, QUOTE 3290 02:28:09,200 --> 02:28:12,560 UNQUOTE TO, SORT OF SIMPLISTIC 3291 02:28:12,560 --> 02:28:13,240 EXPLANATIONS, THAT WE'RE 3292 02:28:13,240 --> 02:28:15,200 THINKING ABOUT THE POPULATION 3293 02:28:15,200 --> 02:28:16,600 WE'RE INTERESTED IN, THAT 3294 02:28:16,600 --> 02:28:18,240 WE'RE THOUGHTFUL ABOUT ALL THE 3295 02:28:18,240 --> 02:28:22,520 THINGS THAT Dr. LANGFORD 3296 02:28:22,520 --> 02:28:24,520 MENTIONED AND HAVING AS 3297 02:28:24,520 --> 02:28:26,360 DIVERSE A POPULATION AS 3298 02:28:26,360 --> 02:28:28,960 POSSIBLE, I THINK THERE'S 3299 02:28:28,960 --> 02:28:32,960 VALUE IN DIVERSITY APART FROM 3300 02:28:32,960 --> 02:28:34,360 WHETHER OR NOT YOU ARE GOING 3301 02:28:34,360 --> 02:28:37,760 TO HAVE THE ABILITY TO 3302 02:28:37,760 --> 02:28:38,800 IDENTIFY STATISTICALLY 3303 02:28:38,800 --> 02:28:39,880 SIGNIFICANT DIFFERENCES 3304 02:28:39,880 --> 02:28:41,400 BETWEEN GROUPS. 3305 02:28:41,400 --> 02:28:44,240 HAVING A DIVERSE POPULATION 3306 02:28:44,240 --> 02:28:45,640 PUTTING EFFORT INTO MAKE SURE 3307 02:28:45,640 --> 02:28:47,800 EVERYONE WHO IS ELIGIBLE HAS 3308 02:28:47,800 --> 02:28:50,280 AN OPPORTUNITY MEANS THAT 3309 02:28:50,280 --> 02:28:52,160 ETHICALLY YOU ARE BETTER 3310 02:28:52,160 --> 02:28:53,080 SHARING THE BENEFITS AND 3311 02:28:53,080 --> 02:28:59,240 BURDENS OF OF RESEARCH. 3312 02:28:59,240 --> 02:29:01,720 SO WHILE MATHEMATICALLY IF WE 3313 02:29:01,720 --> 02:29:03,240 ACTUALLY USE PROGRESS, FOR 3314 02:29:03,240 --> 02:29:06,840 EXAMPLE, IT MIGHT BE REALLY EX 3315 02:29:06,840 --> 02:29:07,920 SENSIVE TO DO SUBGROUP 3316 02:29:07,920 --> 02:29:10,000 ANALYSIS BY ALL OF THOSE 3317 02:29:10,000 --> 02:29:18,040 VARIABLES BUT WE WOULD HAVE A 3318 02:29:18,040 --> 02:29:19,040 MORE DIVERSE POPULATION. 3319 02:29:19,040 --> 02:29:21,400 AND I AM GOING TO CHECK AND 3320 02:29:21,400 --> 02:29:22,920 SEE IF ANYBODY HAS ANY 3321 02:29:22,920 --> 02:29:24,640 QUESTIONS FOR ME OR WANTS TO 3322 02:29:24,640 --> 02:29:26,120 CHALLENGE ANY OF MY 3323 02:29:26,120 --> 02:29:28,280 ASSUMPTIONS BECAUSE THESE ARE 3324 02:29:28,280 --> 02:29:30,120 JUST MY OPINIONS, AS A 3325 02:29:30,120 --> 02:29:30,520 REMINDER. 3326 02:29:30,520 --> 02:29:32,160 THESE ARE MY OPINIONS, NOT THE 3327 02:29:32,160 --> 02:29:38,000 OPINIONS OF ANYBODY ELSE OR 3328 02:29:38,000 --> 02:29:46,280 ANY COMMENTS ABOUT DIVERSITY 3329 02:29:46,280 --> 02:29:47,400 MORE GENERALLY. 3330 02:29:47,400 --> 02:29:56,880 FOLKS ARE QUIET OUT THERE. 3331 02:29:56,880 --> 02:29:58,600 SO I WONDER, SO I KNOW THAT 3332 02:29:58,600 --> 02:30:00,560 MANY OF YOU, BECAUSE MANY OF 3333 02:30:00,560 --> 02:30:03,080 YOU HAVE INTRODUCED YOURSELVES 3334 02:30:03,080 --> 02:30:08,640 ONLINE ARE FROM ALL OVER THE 3335 02:30:08,640 --> 02:30:11,680 WORLD AND, SORRY, THIS IS A 3336 02:30:11,680 --> 02:30:13,760 PARTICULAR -- I THINK OF THIS 3337 02:30:13,760 --> 02:30:15,960 AS A PARTICULARLY AMERICAN 3338 02:30:15,960 --> 02:30:17,400 PHENOMENON BUT I WOULD LOVE TO 3339 02:30:17,400 --> 02:30:22,000 HEAR FROM THOSE OF YOU FROM 3340 02:30:22,000 --> 02:30:26,280 OTHER PLACES ABOUT CHALLENGES 3341 02:30:26,280 --> 02:30:28,440 YOU ENCOUNTER IN DEVELOPING 3342 02:30:28,440 --> 02:30:29,000 DIVERSE POPULATIONS. 3343 02:30:29,000 --> 02:30:30,360 I AM GOING TO ASSUME THAT FOR 3344 02:30:30,360 --> 02:30:34,480 SOME OF YOU WHO ARE ACTIVE 3345 02:30:34,480 --> 02:30:35,960 INVESTIGATORS, THERE ARE 3346 02:30:35,960 --> 02:30:40,080 PEOPLE THAT ARE ROUTINELY 3347 02:30:40,080 --> 02:30:40,440 EXCLUDED. 3348 02:30:40,440 --> 02:30:42,200 AND WHETHER YOU HAVE SPACE 3349 02:30:42,200 --> 02:30:44,720 CHALLENGES WITH THAT AND WHAT 3350 02:30:44,720 --> 02:30:46,160 SORT OF SOLUTIONS YOU MIGHT 3351 02:30:46,160 --> 02:30:55,960 HAVE BEEN COMING UP WITH. 3352 02:30:55,960 --> 02:30:57,440 WELL MAKE WE WILL JUST END 3353 02:30:57,440 --> 02:31:01,600 CLASS A LITTLE EARLY TODAY. 3354 02:31:01,600 --> 02:31:01,960 [LAUGHTER] 3355 02:31:01,960 --> 02:31:04,520 OH, MAYBE YOU ARE POSTING 3356 02:31:04,520 --> 02:31:05,680 THINGS IN SLIDO THAT I CAN'T 3357 02:31:05,680 --> 02:31:06,280 SEE. 3358 02:31:06,280 --> 02:31:08,040 I AM GOING TO BE BACK OVER 3359 02:31:08,040 --> 02:31:11,480 THERE, JUST FOR THE HECK OF 3360 02:31:11,480 --> 02:31:16,160 IT. 3361 02:31:16,160 --> 02:31:16,760 LET'S SEE. 3362 02:31:16,760 --> 02:31:20,200 I DON'T SEE -- OH, HERE IS 3363 02:31:20,200 --> 02:31:20,800 SOME. 3364 02:31:20,800 --> 02:31:21,360 OH, LET'S SEE. 3365 02:31:21,360 --> 02:31:23,600 LOOKS LIKE THERE ARE A LOT OF 3366 02:31:23,600 --> 02:31:29,560 PEOPLE CHATTING HERE BUT MAYBE 3367 02:31:29,560 --> 02:31:40,120 NOT ON THE -- BELOW EVERYONE. 3368 02:31:42,160 --> 02:31:46,680 YEAH, SO LOTS OF LOWS IN THE 3369 02:31:46,680 --> 02:31:48,400 SLIDO BUT I DON'T SEE -- LET 3370 02:31:48,400 --> 02:31:58,920 ME SEE IF I CAN FIND SOME 3371 02:32:02,400 --> 02:32:02,600 OTHERS. 3372 02:32:02,600 --> 02:32:04,320 OKAY SO I GUESS WE WILL END 3373 02:32:04,320 --> 02:32:06,120 EARLY TODAY. 3374 02:32:06,120 --> 02:32:08,560 I THOUGHT THIS WOULD BE MORE 3375 02:32:08,560 --> 02:32:09,440 THOUGHT-PROVOKING. 3376 02:32:09,440 --> 02:32:11,320 SO I WILL GIVE EVERYONE A 3377 02:32:11,320 --> 02:32:12,760 COUPLE MINUTES BACK TO THEIR 3378 02:32:12,760 --> 02:32:13,120 DAY. 3379 02:32:13,120 --> 02:32:15,120 I WILL MENTION THAT NEXT WEEK, 3380 02:32:15,120 --> 02:32:17,160 OUR TOPIC IS GOING TO BE 3381 02:32:17,160 --> 02:32:17,680 INFORMED CONSENT. 3382 02:32:17,680 --> 02:32:20,200 WE WILL START OFF WITH A 3383 02:32:20,200 --> 02:32:21,480 LECTURE FROM CHRISTINE GRADY 3384 02:32:21,480 --> 02:32:23,320 WHO IS AN EXPERT IN THE FIELD 3385 02:32:23,320 --> 02:32:26,760 AND ALSO HERE ON OUR FACULTY. 3386 02:32:26,760 --> 02:32:28,600 WE'LL ALSO HEAR FROM SCOTT KIM 3387 02:32:28,600 --> 02:32:30,560 WHO IS ALSO A FACULTY MEMBER 3388 02:32:30,560 --> 02:32:34,440 IN THE DEPARTMENT WHO HAS 3389 02:32:34,440 --> 02:32:35,800 EXPERTISE IN THOSE WHO HAVE 3390 02:32:35,800 --> 02:32:38,920 WHAT I WILL CALL COMPROMISED 3391 02:32:38,920 --> 02:32:40,080 DECISION-MAKING CAPACITY. 3392 02:32:40,080 --> 02:32:42,840 THEN WE ORIGINALLY WERE GOING 3393 02:32:42,840 --> 02:32:44,480 TO HOST KATIE TODDMAN WHO IS 3394 02:32:44,480 --> 02:32:46,680 PART OF A GROUP HERE THAT WE, 3395 02:32:46,680 --> 02:32:48,760 THE DEPARTMENT OF BY OH ETHICS 3396 02:32:48,760 --> 02:32:51,160 ARE A PART OF, ON HOW TO 3397 02:32:51,160 --> 02:32:51,840 ASSESS CAPACITY. 3398 02:32:51,840 --> 02:32:53,080 SO SHE IS ACTUALLY NOT GOING 3399 02:32:53,080 --> 02:32:56,640 TO BE ABLE TO JOIN US BUT HER 3400 02:32:56,640 --> 02:32:57,440 COLLEAGUE CAROL SQUIRE IS 3401 02:32:57,440 --> 02:32:59,240 GOING TO COME AND WE'RE GOING 3402 02:32:59,240 --> 02:33:01,240 TO TALK ABOUT HOW YOU DO THIS 3403 02:33:01,240 --> 02:33:04,000 HERE AT THE NIH THINKING THAT 3404 02:33:04,000 --> 02:33:05,960 MY THE OF SOME VALUE TO THOSE 3405 02:33:05,960 --> 02:33:07,960 OF YOU HAVE AT OTHER CENTERS. 3406 02:33:07,960 --> 02:33:09,400 AND THEN I WILL SPEND A COUPLE 3407 02:33:09,400 --> 02:33:11,960 OF MINUTES AT THE VERY END 3408 02:33:11,960 --> 02:33:13,800 GIVING YOU WHAT I THINK OF AND 3409 02:33:13,800 --> 02:33:16,440 HOPE ARE THE NUTS AND BOLTS OF 3410 02:33:16,440 --> 02:33:17,720 CONSENT THAT YOU MIGHT WANT TO 3411 02:33:17,720 --> 02:33:19,280 THINK ABOUT AS YOU DEVELOP 3412 02:33:19,280 --> 02:33:20,280 CONSENT FORMS. 3413 02:33:20,280 --> 02:33:22,960 AND WITH THAT, I WILL GIVE YOU 3414 02:33:22,960 --> 02:33:24,160 ALL BACK 11 1/2 MINUTES OF 3415 02:33:24,160 --> 02:33:24,920 YOUR DAY. 3416 02:33:24,920 --> 00:00:00,000 SO THANK YOU ALL.