1 00:00:04,949 --> 00:00:10,021 WELCOME, EVERYONE, TO SESSION 2 00:00:10,021 --> 00:00:10,355 SIX. 3 00:00:10,355 --> 00:00:11,790 TODAY IS INTERNATIONAL DAY, 4 00:00:11,790 --> 00:00:12,991 WHICH I AM ALWAYS VERY EXCITED 5 00:00:12,991 --> 00:00:13,558 ABOUT. 6 00:00:13,558 --> 00:00:16,061 I HAVE A COUPLE OF QUICK 7 00:00:16,061 --> 00:00:17,362 ANNOUNCEMENTS. 8 00:00:17,362 --> 00:00:18,463 THE FIRST IS THAT THE WORD OF 9 00:00:18,463 --> 00:00:20,865 THE DAY TODAY IS KENYA, I'LL TRY 10 00:00:20,865 --> 00:00:23,601 TO REPEAT THAT, AND AS WE GO 11 00:00:23,601 --> 00:00:24,669 FORWARD. 12 00:00:24,669 --> 00:00:26,004 WE'RE GOING TO HAVE THREE 13 00:00:26,004 --> 00:00:26,438 SPEAKERS TODAY. 14 00:00:26,438 --> 00:00:29,307 WE'RE GOING TO START WITH 15 00:00:29,307 --> 00:00:30,942 ANNETTE RID WHO I'LL INTRODUCE 16 00:00:30,942 --> 00:00:33,011 IN A MOMENT FOLLOWED BY JOE 17 00:00:33,011 --> 00:00:34,646 MILLUM WHO WILL BE TALKING ABOUT 18 00:00:34,646 --> 00:00:36,481 POST-TRIAL OBLIGATIONS, AND THEN 19 00:00:36,481 --> 00:00:38,483 DORCAS KAMUYA, WHO WILL BE 20 00:00:38,483 --> 00:00:40,018 TALKING ABOUT COMMUNITY 21 00:00:40,018 --> 00:00:41,152 ENGAGEMENT IN HEALTH RESEARCH, 22 00:00:41,152 --> 00:00:42,954 WHY IT MATTERS, AND DIFFERENT 23 00:00:42,954 --> 00:00:44,923 APPROACHES. 24 00:00:44,923 --> 00:00:50,929 I ALSO WANT TO LET YOU KNOW THAT 25 00:00:50,929 --> 00:00:52,564 DURING DR. KAMUYA'S 26 00:00:52,564 --> 00:00:53,665 PRESENTATION, WE'RE GOING TO BE 27 00:00:53,665 --> 00:00:54,566 USING SLIDO. 28 00:00:54,566 --> 00:00:56,301 I SENT OUT AN EMAIL TO 29 00:00:56,301 --> 00:00:56,668 EVERYBODY. 30 00:00:56,668 --> 00:01:00,238 WHAT YOU NEED DO IS GO TO 31 00:01:00,238 --> 00:01:02,207 SLIDO.COM, AND I WILL REPEAT THE 32 00:01:02,207 --> 00:01:06,811 NUMBER WHEN WE GET TO DORCAS' 33 00:01:06,811 --> 00:01:07,779 LECTURE, BUT ALL THE INFORMATION 34 00:01:07,779 --> 00:01:09,614 IS IN THE EMAIL AND THERE'S ALSO 35 00:01:09,614 --> 00:01:12,150 A LINK IN THE EMAIL. 36 00:01:12,150 --> 00:01:14,919 PLEASE WAIT TO POST YOUR 37 00:01:14,919 --> 00:01:15,220 RESPONSES. 38 00:01:15,220 --> 00:01:17,722 I KNOW SOME OF YOU ARE ALREADY 39 00:01:17,722 --> 00:01:19,924 POSTING IN THE DISCUSSION 40 00:01:19,924 --> 00:01:20,358 SECTION. 41 00:01:20,358 --> 00:01:23,228 IT'S HARD FOR ME TO MANAGE 42 00:01:23,228 --> 00:01:25,063 MULTIPLE OPTIONS AT THE SAME 43 00:01:25,063 --> 00:01:26,931 TIME, SO PLEASE REPEAT YOUR 44 00:01:26,931 --> 00:01:29,434 RESPONSES IN SLIDO AND/OR WAIT 45 00:01:29,434 --> 00:01:30,769 AND PUT YOUR RESPONSES INTO 46 00:01:30,769 --> 00:01:32,270 SLIDO. 47 00:01:32,270 --> 00:01:34,038 SO WITH THAT, I'M GOING TO 48 00:01:34,038 --> 00:01:36,441 INTRODUCE OUR FIRST SPEAKER, 49 00:01:36,441 --> 00:01:40,145 ANNETTE RID, A MEMBER OF OUR 50 00:01:40,145 --> 00:01:41,012 DEPARTMENT IN THE CLINICAL 51 00:01:41,012 --> 00:01:42,013 CENTER, THE DEPARTMENT OF 52 00:01:42,013 --> 00:01:43,214 BIOETHICS, AND IS ALSO THE 53 00:01:43,214 --> 00:01:46,951 LIAISON WITH THE NIH FOGARTY 54 00:01:46,951 --> 00:01:48,486 INTERNATIONAL CENTER, WHERE SHE 55 00:01:48,486 --> 00:01:50,321 PROVIDES ETHICS, CONSULTATION 56 00:01:50,321 --> 00:01:51,856 AND EDUCATION SUPPORT. 57 00:01:51,856 --> 00:01:54,592 HER RESEARCH INTERESTS SPAN 58 00:01:54,592 --> 00:01:56,127 RESEARCH ETHICS, GLOBAL HEALTH, 59 00:01:56,127 --> 00:01:57,862 JUSTICE AND HEALTH, ALL SORTS OF 60 00:01:57,862 --> 00:01:59,831 THINGS THAT ARE IMPORTANT, AND 61 00:01:59,831 --> 00:02:02,801 SHE IS GOING TO SHARE TODAY AN 62 00:02:02,801 --> 00:02:04,969 INTRODUCTION TO INTERNATIONAL 63 00:02:04,969 --> 00:02:06,504 RESEARCH ETHICS AS WELL AS AN 64 00:02:06,504 --> 00:02:08,039 INTRODUCTION TO THE CONCEPT OF 65 00:02:08,039 --> 00:02:10,875 STANDARDS OF CARE. 66 00:02:10,875 --> 00:02:13,878 SO TAKE IT AWAY. 67 00:02:13,878 --> 00:02:15,246 >> THANK YOU SO MUCH, HOLLY. 68 00:02:15,246 --> 00:02:16,347 GOOD MORNING TO EVERYONE IN THE 69 00:02:16,347 --> 00:02:16,815 ROOM. 70 00:02:16,815 --> 00:02:18,750 GOOD MORNING, GOOD DAY, GOOD 71 00:02:18,750 --> 00:02:20,084 EVENING TO EVERYONE WHO'S 72 00:02:20,084 --> 00:02:21,052 WATCHING ONLINE. 73 00:02:21,052 --> 00:02:24,556 IT'S A PLEASURE TO SPEAK TO YOU 74 00:02:24,556 --> 00:02:25,990 TODAY ABOUT FIRST SOME GENERAL 75 00:02:25,990 --> 00:02:27,058 THOUGHTS ABOUT INTERNATIONAL 76 00:02:27,058 --> 00:02:28,726 RESEARCH ETHICS AND THEN 77 00:02:28,726 --> 00:02:30,261 STANDARDS OF CARE. 78 00:02:30,261 --> 00:02:31,896 YOU SHOULD NOTE THAT WHAT I SAY 79 00:02:31,896 --> 00:02:33,965 DOES NOT REFLECT THE VIEWS OF 80 00:02:33,965 --> 00:02:35,266 THE U.S. GOVERNMENT, IT REFLECTS 81 00:02:35,266 --> 00:02:36,267 MY OWN VIEWS. 82 00:02:36,267 --> 00:02:39,003 I ALSO WANT TO NOTE THAT I USE 83 00:02:39,003 --> 00:02:40,972 THE TERM -- WILL BE USING SINCE 84 00:02:40,972 --> 00:02:42,273 WE'RE TALKING ABOUT AN 85 00:02:42,273 --> 00:02:44,142 INTERNATIONAL CONTEXT, WILL BE 86 00:02:44,142 --> 00:02:50,582 USING THE TERMS LOW INCOME TU 87 00:02:50,582 --> 00:02:52,116 TRIES AND MIDDLE INCOME 88 00:02:52,116 --> 00:02:52,784 COUNTRIES. 89 00:02:52,784 --> 00:02:53,985 USING THESE TERMS I DO NOT WISH 90 00:02:53,985 --> 00:02:55,286 TO SUGGEST THERE'S A HIERARCHY 91 00:02:55,286 --> 00:02:57,922 OF COUNTRIES AND I ALSO 92 00:02:57,922 --> 00:02:59,691 RECOGNIZE THERE'S HUGE DIVERSITY 93 00:02:59,691 --> 00:03:01,426 BETWEEN BOTH GROUPS OF 94 00:03:01,426 --> 00:03:03,061 COUNTRIES, SOCIALLY, 95 00:03:03,061 --> 00:03:03,728 HISTORICALLY, CULTURALLY AND SO 96 00:03:03,728 --> 00:03:04,162 ON. 97 00:03:04,162 --> 00:03:06,664 SO I WANT TO START OUT WITH MY 98 00:03:06,664 --> 00:03:09,200 OVERVIEW OF WHAT I THINK IS 99 00:03:09,200 --> 00:03:10,268 UNIQUE ABOUT INTERNATIONAL 100 00:03:10,268 --> 00:03:15,306 RESEARCH ETHICS, AND WE'LL BE 101 00:03:15,306 --> 00:03:17,842 FOCUSING ON -- TODAY OUR 102 00:03:17,842 --> 00:03:19,811 SESSIONS WILL BE FOCUSING ON 103 00:03:19,811 --> 00:03:20,545 INTERNATIONAL COLLABORATIVE 104 00:03:20,545 --> 00:03:22,547 RESEARCH, WHICH I UNDERSTAND IS 105 00:03:22,547 --> 00:03:25,149 RESEARCH THAT IS SPONSORED BY 106 00:03:25,149 --> 00:03:26,584 INSTITUTIONS IN HIGH INCOME 107 00:03:26,584 --> 00:03:29,854 COUNTRIES AND THEN CONDUCTED IN 108 00:03:29,854 --> 00:03:30,855 LOW/MIDDLE INCOME COUNTRIES IN 109 00:03:30,855 --> 00:03:31,689 COLLABORATION WITH RESEARCHERS 110 00:03:31,689 --> 00:03:31,890 THERE. 111 00:03:31,890 --> 00:03:33,925 I THINK THIS KIND OF RESEARCH 112 00:03:33,925 --> 00:03:36,094 HAPPENS IN A VERY UNIQUE CONTEXT 113 00:03:36,094 --> 00:03:39,163 THAT HAS REALLY IMPORTANT 114 00:03:39,163 --> 00:03:40,365 IMPLICATIONS FOR WHAT 115 00:03:40,365 --> 00:03:42,000 INVESTIGATORS AND SPONSORS OWE 116 00:03:42,000 --> 00:03:43,868 TO PARTICIPANTS, BUT ALSO FOR 117 00:03:43,868 --> 00:03:47,672 THE COLLABORATION BETWEEN THE 118 00:03:47,672 --> 00:03:48,139 RESEARCHERS. 119 00:03:48,139 --> 00:03:49,540 SO TO GET US THINKING, I WOULD 120 00:03:49,540 --> 00:03:51,976 LIKE TO INTRODUCE A LITTLE 121 00:03:51,976 --> 00:03:56,014 VIGNETTE OF THE MOTHER TO 122 00:03:56,014 --> 00:03:56,881 OFFSPRING MALARIA STUDY. 123 00:03:56,881 --> 00:03:58,182 THIS IS A STUDY THAT HAPPENED IN 124 00:03:58,182 --> 00:04:00,585 THE EARLY 2000s IN TANZANIA, 125 00:04:00,585 --> 00:04:02,353 WAS SPONSORED BY NIH AND SOME 126 00:04:02,353 --> 00:04:04,088 OTHER SPONSORS IN HIGH INCOME 127 00:04:04,088 --> 00:04:04,355 COUNTRIES. 128 00:04:04,355 --> 00:04:06,925 THE GOAL WAS TO LEARN ABOUT 129 00:04:06,925 --> 00:04:08,259 MALARIA INFECTION IN EARLY LIFE, 130 00:04:08,259 --> 00:04:09,894 MAINLY FROM A GENOMIC 131 00:04:09,894 --> 00:04:11,195 PERSPECTIVE. 132 00:04:11,195 --> 00:04:15,366 AND IT INVOLVED ENROLLING 133 00:04:15,366 --> 00:04:18,102 PREGNANT PEOPLE INTO RESEARCH 134 00:04:18,102 --> 00:04:19,270 AND THEN FOLLOWING THEM AS WELL 135 00:04:19,270 --> 00:04:24,442 AS THEIR INFANTS FOR UP TO -- 136 00:04:24,442 --> 00:04:25,877 THEN WERE CHILDREN -- UP TO FIVE 137 00:04:25,877 --> 00:04:29,047 YEARS AND TAKING VERY 138 00:04:29,047 --> 00:04:30,448 FREQUENT -- IN ORDER TO MONITOR 139 00:04:30,448 --> 00:04:32,984 THEIR INFECTION IN ORDER TO GET 140 00:04:32,984 --> 00:04:34,619 INFORMATION ABOUT THE MALARIA 141 00:04:34,619 --> 00:04:36,254 PARASITES, YOU KNOW, WHAT THEIR 142 00:04:36,254 --> 00:04:40,959 GENOMICS WAS AND SO ON. 143 00:04:40,959 --> 00:04:43,361 THIS STUDY EXPECTED, BECAUSE IT 144 00:04:43,361 --> 00:04:46,230 WAS BASICALLY LOOKING AT WHETHER 145 00:04:46,230 --> 00:04:48,399 THE ENROLLED PEOPLE HAD MALARIA 146 00:04:48,399 --> 00:04:50,034 WAS EXPECTING TO DIAGNOSE 147 00:04:50,034 --> 00:04:51,135 MALARIA, AND THEREFORE MADE 148 00:04:51,135 --> 00:04:52,570 PLANS TO TREAT PARTICIPANTS FOR 149 00:04:52,570 --> 00:04:54,405 MALARIA. 150 00:04:54,405 --> 00:04:55,506 HOWEVER, MALARIA ALSO TRAVELS 151 00:04:55,506 --> 00:04:59,010 WITH OTHER INFECTIOUS DISEASES, 152 00:04:59,010 --> 00:04:59,978 AND THEREFORE THEY WERE 153 00:04:59,978 --> 00:05:01,212 EXPECTING TO DIAGNOSE A RANGE OF 154 00:05:01,212 --> 00:05:03,815 OTHER DISEASES. 155 00:05:03,815 --> 00:05:05,683 INCLUDING HIV, WHICH WAS AT THE 156 00:05:05,683 --> 00:05:08,519 TIME IN THE EARLY 2000s A 157 00:05:08,519 --> 00:05:10,688 REALLY IMPORTANT HEALTH ISSUE 158 00:05:10,688 --> 00:05:12,290 BECAUSE HIV ANTIRETROVIRAL 159 00:05:12,290 --> 00:05:13,558 TREATMENT HAD NOT BEEN YET 160 00:05:13,558 --> 00:05:16,194 SCALED UP IN LOW/MIDDLE INCOME 161 00:05:16,194 --> 00:05:17,595 COUNTRIES, SO BECAUSE THEY 162 00:05:17,595 --> 00:05:20,331 EXPECTED THAT THEY WOULD BE 163 00:05:20,331 --> 00:05:22,734 DIAGNOSING HIV UNFORTUNATELY IN 164 00:05:22,734 --> 00:05:24,702 SOME OF THE PARTICIPANTS, AND 165 00:05:24,702 --> 00:05:27,238 THEY WANTED TO BE PREPARED, THEY 166 00:05:27,238 --> 00:05:28,973 ALSO COULD NOT OFFER A FULL 167 00:05:28,973 --> 00:05:32,810 RANGE OF HIV SERVICES, AGAIN, 168 00:05:32,810 --> 00:05:33,945 HIV -- ANTIRETROVIRAL TREATMENT 169 00:05:33,945 --> 00:05:35,213 AT THE TIME WAS NOT YET 170 00:05:35,213 --> 00:05:37,081 AVAILABLE, SO THEY DECIDED TO 171 00:05:37,081 --> 00:05:38,816 TAKE WHAT THEY THOUGHT WAS A 172 00:05:38,816 --> 00:05:41,119 FEASIBLE APPROACH, WHICH WAS 173 00:05:41,119 --> 00:05:43,721 THAT THEY WOULD BE ABLE TO TREAT 174 00:05:43,721 --> 00:05:46,591 IN PARTICULAR THE SMALL CHILDREN 175 00:05:46,591 --> 00:05:49,427 WITH PROPHYLAXIS FOR HIV-RELATED 176 00:05:49,427 --> 00:05:55,666 INFECTIONS, AND THEN IF THOSE 177 00:05:55,666 --> 00:05:56,534 INFECTIONS BECAME DIFFICULT TO 178 00:05:56,534 --> 00:05:58,369 TREAT, REFER THEM TO HOSPICE 179 00:05:58,369 --> 00:06:00,805 CARE IN THE CASE OF SERIOUS 180 00:06:00,805 --> 00:06:03,307 HIV-RELATED ILLNESS. 181 00:06:03,307 --> 00:06:06,077 SO THIS STUDY, I THINK 182 00:06:06,077 --> 00:06:08,046 ILLUSTRATES A NUMBER OF THINGS 183 00:06:08,046 --> 00:06:09,347 ABOUT THE PARTICULAR CONTEXT. 184 00:06:09,347 --> 00:06:10,681 NOT THE WHOLE RANGE BUT A NUMBER 185 00:06:10,681 --> 00:06:12,650 OF THINGS ABOUT THE PARTICULAR 186 00:06:12,650 --> 00:06:16,821 CONTEXT THAT IS THE CONTEXT OF 187 00:06:16,821 --> 00:06:18,723 INTERNATIONAL RESEARCH. 188 00:06:18,723 --> 00:06:20,024 AND I LIKE TO THINK ABOUT THE 189 00:06:20,024 --> 00:06:21,025 CONTEXT IN THREE WAYS. 190 00:06:21,025 --> 00:06:23,861 I THINK FIRST OF ALL, THIS 191 00:06:23,861 --> 00:06:24,962 CONTEXT IS UNIQUE BECAUSE 192 00:06:24,962 --> 00:06:26,030 THERE'S A REALLY DIVERSE RANGE 193 00:06:26,030 --> 00:06:29,967 OF ACTORS, AND THERE ARE BIG 194 00:06:29,967 --> 00:06:30,868 CULTURAL DIFFERENCES BETWEEN 195 00:06:30,868 --> 00:06:33,037 THESE ACTORS. 196 00:06:33,037 --> 00:06:34,372 THAT'S BOTH BETWEEN THE 197 00:06:34,372 --> 00:06:37,408 RESEARCHERS BUT ALSO BETWEEN THE 198 00:06:37,408 --> 00:06:38,843 COMMUNITIES. 199 00:06:38,843 --> 00:06:40,144 SO DIFFERENT SYSTEMS OF MEANING 200 00:06:40,144 --> 00:06:42,013 THAT INFLUENCE AND VALUE AND 201 00:06:42,013 --> 00:06:45,083 SOCIAL NORMS THAT INFLUENCE 202 00:06:45,083 --> 00:06:47,051 EXPECTATIONS AND IDEAS ABOUT 203 00:06:47,051 --> 00:06:48,252 RESEARCH, WHAT RESEARCH SHOULD 204 00:06:48,252 --> 00:06:52,990 BE CONDUCTED AND HOW IN THIS 205 00:06:52,990 --> 00:06:53,958 SETTING. 206 00:06:53,958 --> 00:06:58,529 SECOND, I THINK THEY'RE REALLY 207 00:06:58,529 --> 00:06:59,297 IMPORTANT POWER DIFFERENTIALS 208 00:06:59,297 --> 00:07:00,531 BECAUSE THE RESEARCH IS 209 00:07:00,531 --> 00:07:04,769 SPONSORED IN MANY CASES AND THIS 210 00:07:04,769 --> 00:07:06,938 IS THE FOCUS TODAY, FROM 211 00:07:06,938 --> 00:07:08,739 INSTITUTIONS IN HIGH INCOME 212 00:07:08,739 --> 00:07:10,875 COUNTRIES, SO THERE'S 213 00:07:10,875 --> 00:07:11,976 DISCREPANCY IN FINANCIAL 214 00:07:11,976 --> 00:07:12,977 RESOURCES, BUT THERE'S ALSO 215 00:07:12,977 --> 00:07:13,845 DIFFERENT TRAINING OPPORTUNITIES 216 00:07:13,845 --> 00:07:19,317 FOR RESEARCHERS IN HIGH INCOME 217 00:07:19,317 --> 00:07:21,719 COUNTRIES THAN IN LOW/MIDDLE 218 00:07:21,719 --> 00:07:22,920 INCOME COUNTRIES SO POWER 219 00:07:22,920 --> 00:07:23,788 DIFFERENTIALS BETWEEN THE 220 00:07:23,788 --> 00:07:24,789 RESEARCHERS BUT ALSO BETWEEN THE 221 00:07:24,789 --> 00:07:25,756 COMMUNITIES. 222 00:07:25,756 --> 00:07:29,827 AND THEN THIRDLY, THERE IS A 223 00:07:29,827 --> 00:07:31,796 CONTEXT OF BACKGROUND INJUSTICE. 224 00:07:31,796 --> 00:07:33,431 BY THAT I MEAN THERE ARE 225 00:07:33,431 --> 00:07:35,166 EXISTING INJUSTICES DUE TO 226 00:07:35,166 --> 00:07:36,534 COLONIAL HISTORY, THE CURRENT 227 00:07:36,534 --> 00:07:41,205 WORLD ORDER, FAILURES, SORT OF 228 00:07:41,205 --> 00:07:42,273 GOVERNMENT FAILURES AT THE LOCAL 229 00:07:42,273 --> 00:07:44,242 LEVEL AND SO ON THAT MEAN THAT 230 00:07:44,242 --> 00:07:49,113 THE BASIC INSTITUTIONS IN 231 00:07:49,113 --> 00:07:50,414 SOCIETIES IN LOW/MIDDLE-INCOME 232 00:07:50,414 --> 00:07:51,382 COUNTRIES OFTEN DO NOT FUNCTION 233 00:07:51,382 --> 00:07:53,818 IN A WAY THAT ALLOWS EVERYONE TO 234 00:07:53,818 --> 00:07:54,886 MEET THEIR BASIC NEEDS. 235 00:07:54,886 --> 00:07:59,724 SO YOU HAVE LOTS OF PEOPLE WHO, 236 00:07:59,724 --> 00:08:01,259 LIKE, SHELTER, ADEQUATE 237 00:08:01,259 --> 00:08:02,360 NUTRITION, ACCESS TO CLEAN WATER 238 00:08:02,360 --> 00:08:03,127 AND SO ON. 239 00:08:03,127 --> 00:08:06,264 AND THIS CREATES NOT ONLY NEEDS 240 00:08:06,264 --> 00:08:11,302 BUT ALSO AS A CONTEXT IN WHICH 241 00:08:11,302 --> 00:08:12,303 PEOPLE'S RIGHTS ARE OFTEN 242 00:08:12,303 --> 00:08:12,870 VIOLATED. 243 00:08:12,870 --> 00:08:14,605 RESEARCHERS ARE NOT PERSONALLY 244 00:08:14,605 --> 00:08:18,309 RESPONSIBLE, OF COURSE, FOR THAT 245 00:08:18,309 --> 00:08:19,577 EXISTING BACKGROUND INJUSTICE 246 00:08:19,577 --> 00:08:20,711 THAT THEY MIGHT FIND, BUT I 247 00:08:20,711 --> 00:08:24,849 THINK IT HAS IMPORTANT 248 00:08:24,849 --> 00:08:25,983 IMPLICATIONS FOR WHAT THEY 249 00:08:25,983 --> 00:08:27,385 SHOULD DO AND HOW THEY SHOULD 250 00:08:27,385 --> 00:08:28,719 RESPOND TO IT, PARTLY BECAUSE 251 00:08:28,719 --> 00:08:31,322 THEY'RE PARTLY IMPLICATED IN 252 00:08:31,322 --> 00:08:32,857 SOME OF THESE INJUSTICES AND 253 00:08:32,857 --> 00:08:33,858 PARTLY BECAUSE, YOU KNOW, 254 00:08:33,858 --> 00:08:35,459 THEY'RE JUST REALLY MASSIVE -- 255 00:08:35,459 --> 00:08:36,727 THERE ARE REALLY JUST MASSIVE 256 00:08:36,727 --> 00:08:37,895 NEEDS THAT THEY'RE IN A POSITION 257 00:08:37,895 --> 00:08:39,530 TO RESPOND TO. 258 00:08:39,530 --> 00:08:41,432 SO HOW DOES THAT PLAY OUT? 259 00:08:41,432 --> 00:08:43,701 IF WE THINK OF EACH OF THESE? 260 00:08:43,701 --> 00:08:45,536 FOR THE CULTURAL DIFFERENCES, 261 00:08:45,536 --> 00:08:48,072 THINK AGAIN ABOUT THE MALARIA 262 00:08:48,072 --> 00:08:49,840 STUDY, COMMUNICATING WHAT THE 263 00:08:49,840 --> 00:08:51,776 STUDY WAS ABOUT DURING THE 264 00:08:51,776 --> 00:08:52,877 INFORMED CONSENT PROCESS BUT 265 00:08:52,877 --> 00:08:54,946 ALSO ENGAGING THE COMMUNITY, WAS 266 00:08:54,946 --> 00:08:57,248 THIS A WORTHWHILE STUDY TO DO. 267 00:08:57,248 --> 00:09:00,518 LOTS OF SORT OF DIFFERENCES IN 268 00:09:00,518 --> 00:09:01,752 TERMS OF HOW PEOPLE MIGHT THINK 269 00:09:01,752 --> 00:09:03,688 ABOUT THIS KIND OF RESEARCH THAT 270 00:09:03,688 --> 00:09:06,891 COULD EXIST HERE IN THIS SETT 271 00:09:06,891 --> 00:09:07,124 SETTING. 272 00:09:07,124 --> 00:09:08,960 SECOND, IMPORTANT POWER 273 00:09:08,960 --> 00:09:10,161 DIFFERENTIALS. 274 00:09:10,161 --> 00:09:12,463 SO THINK OF A PREGNANT PERSON 275 00:09:12,463 --> 00:09:14,865 WHO'S CONSIDERING ENROLLING AND 276 00:09:14,865 --> 00:09:16,834 MAYBE DOES NOT HAVE ACCESS TO 277 00:09:16,834 --> 00:09:20,671 OTHER WAYS OF DIAGNOSING 278 00:09:20,671 --> 00:09:21,105 MALARIA. 279 00:09:21,105 --> 00:09:23,941 ARE THEY GOING TO BE REALLY -- 280 00:09:23,941 --> 00:09:25,476 FEEL FREE TO REALLY, YOU KNOW, 281 00:09:25,476 --> 00:09:28,546 NOT ENROLL IN THIS STUDY? 282 00:09:28,546 --> 00:09:31,282 BUT SIMILARLY, YOU CAN ASK A 283 00:09:31,282 --> 00:09:31,916 SIMILAR QUESTION AT THE 284 00:09:31,916 --> 00:09:33,651 COMMUNITY LEVEL, COMMUNITIES WHO 285 00:09:33,651 --> 00:09:34,785 ARE BEING ASKED TO PARTICIPATE 286 00:09:34,785 --> 00:09:37,054 IN SUCH RESEARCH, THE RESEARCH 287 00:09:37,054 --> 00:09:41,325 WILL BRING RESOURCES TO THEM, IS 288 00:09:41,325 --> 00:09:43,628 THAT LIKE -- WHAT ARE SORT OF 289 00:09:43,628 --> 00:09:46,130 THE POWER DYNAMICS OF 290 00:09:46,130 --> 00:09:48,766 NEGOTIATING THAT ACCESS TO 291 00:09:48,766 --> 00:09:49,967 COMMUNITIES. 292 00:09:49,967 --> 00:09:51,502 SIMILAR WITH INDEPENDENT ETHICS 293 00:09:51,502 --> 00:09:53,704 REVIEW, AND THEN WORKING OUT AT 294 00:09:53,704 --> 00:09:57,074 THE LEVEL OF THE COLLABORATION 295 00:09:57,074 --> 00:10:00,378 BETWEEN THE INVESTIGATORS, WHAT 296 00:10:00,378 --> 00:10:01,879 EQUITABLE PARTNERSHIP MEANS IN 297 00:10:01,879 --> 00:10:06,584 THAT CONTEXT GIVEN THAT THERE IS 298 00:10:06,584 --> 00:10:08,119 THIS DIFFERENCE NOT JUST IN 299 00:10:08,119 --> 00:10:09,553 FINANCIAL RESOURCES BUT ALSO 300 00:10:09,553 --> 00:10:10,755 ACADEMIC RESOURCES. 301 00:10:10,755 --> 00:10:13,791 AND THEN THIRDLY, WITH REGARD TO 302 00:10:13,791 --> 00:10:17,094 THE BACKGROUND INJUSTICES, YOU 303 00:10:17,094 --> 00:10:20,164 KNOW, ONE QUESTION IS, DOES THE 304 00:10:20,164 --> 00:10:22,133 RESEARCH THAT HIGH INCOME 305 00:10:22,133 --> 00:10:23,668 COUNTRIES SPONSOR AND 306 00:10:23,668 --> 00:10:24,702 LOW/MIDDLE-INCOME COUNTRIES, IS 307 00:10:24,702 --> 00:10:25,736 THAT ONLY ACCEPTABLE WHEN IT 308 00:10:25,736 --> 00:10:29,240 TRIES TO ADDRESS SORT OF THOSE 309 00:10:29,240 --> 00:10:34,812 BACKGROUND INJUSTICES. 310 00:10:34,812 --> 00:10:40,518 ADDRESS CHALLENGES THAT OCCUR 311 00:10:40,518 --> 00:10:42,386 LOCALLY AND HELP TO IMPROVE 312 00:10:42,386 --> 00:10:44,121 HEALTH GLOBALLY AND REDUCE 313 00:10:44,121 --> 00:10:45,523 GLOBAL HEALTH INEQUITIES. 314 00:10:45,523 --> 00:10:46,957 SO LOTS OF REALLY INTERESTING 315 00:10:46,957 --> 00:10:48,626 QUESTIONS AROUND THAT, IMPORTANT 316 00:10:48,626 --> 00:10:51,095 QUESTIONS AROUND THAT, WHEN IS 317 00:10:51,095 --> 00:10:52,763 RESEARCH ACTUALLY RESPONSIVE, SO 318 00:10:52,763 --> 00:10:54,265 MALARIA OBVIOUSLY IS RESPONSIVE 319 00:10:54,265 --> 00:10:55,599 BECAUSE IT IS A BIG PROBLEM, BUT 320 00:10:55,599 --> 00:10:57,468 YOU COULD ASK A QUESTION 321 00:10:57,468 --> 00:11:01,072 WHETHER, YOU KNOW, A STUDY THAT 322 00:11:01,072 --> 00:11:04,008 WAS INTENDED TO LAY THE 323 00:11:04,008 --> 00:11:06,344 FOUNDATION FOR SORT OF GENOMIC 324 00:11:06,344 --> 00:11:07,945 APPROACHES THAT SEEM QUITE 325 00:11:07,945 --> 00:11:10,381 DISTANT PERHAPS IN APPLICATION, 326 00:11:10,381 --> 00:11:12,116 WHETHER THAT IS SORT OF THE 327 00:11:12,116 --> 00:11:12,650 BIGGEST PRIORITY. 328 00:11:12,650 --> 00:11:15,920 NOT TO SAY THAT IT WOULD BE 329 00:11:15,920 --> 00:11:20,758 ETHICALLY UNACCEPTABLE, BUT IS 330 00:11:20,758 --> 00:11:22,193 THAT THE BIGGEST PRIORITY. 331 00:11:22,193 --> 00:11:24,028 IMAGINE A VERSION OF A STUDY, 332 00:11:24,028 --> 00:11:25,229 THIS ONE I'M JUST MAKING UP, BUT 333 00:11:25,229 --> 00:11:27,298 IMAGINE A STUDY WHERE 334 00:11:27,298 --> 00:11:29,934 INVESTIGATORS COME TO TEST A 335 00:11:29,934 --> 00:11:32,570 MALARIA VACCINE THAT IS AIMED AT 336 00:11:32,570 --> 00:11:34,438 THE HIGH INCOME COUNTRY TRAVELER 337 00:11:34,438 --> 00:11:35,206 MARKET, NOT LOW/MIDDLE-INCOME 338 00:11:35,206 --> 00:11:36,273 COUNTRIES, BUT THEY'RE TESTING 339 00:11:36,273 --> 00:11:37,942 IT THERE BECAUSE MALARIA IS 340 00:11:37,942 --> 00:11:39,910 REALLY FREQUENT OBVIOUSLY IN 341 00:11:39,910 --> 00:11:41,746 COUNTRIES WHERE IT IS ENDEMIC. 342 00:11:41,746 --> 00:11:43,280 THAT RESEARCH IS NOT REALLY 343 00:11:43,280 --> 00:11:45,015 RESPONSIVE TO LOCAL HEALTH 344 00:11:45,015 --> 00:11:47,451 NEEDS, BUT YOU KNOW, AND SO IS 345 00:11:47,451 --> 00:11:49,320 THAT AN ACCEPTABLE STUDY TO DO, 346 00:11:49,320 --> 00:11:50,621 IF SO, UNDER WHAT CONDITIONS. 347 00:11:50,621 --> 00:11:51,822 SO LOTS OF QUESTIONS AROUND THE 348 00:11:51,822 --> 00:11:53,557 KIND OF RESEARCH BEING 349 00:11:53,557 --> 00:11:57,595 CONDUCTED, BUT THEN ALSO HOW 350 00:11:57,595 --> 00:11:59,130 THAT RESEARCH SHOULD BE 351 00:11:59,130 --> 00:11:59,463 CONDUCTED. 352 00:11:59,463 --> 00:12:03,200 I'LL BE FOCUSING MORE ON 353 00:12:03,200 --> 00:12:04,268 STANDARDS OF CARE FOR THE REST 354 00:12:04,268 --> 00:12:10,608 OF MY TALK, BUT ANS L AN ANCILL, 355 00:12:10,608 --> 00:12:12,376 YOU SAW IN THE MALARIA STUDY, 356 00:12:12,376 --> 00:12:14,678 THEY DECIDED TO GIVE RELATIVELY 357 00:12:14,678 --> 00:12:18,849 LIMITED CARE FOR HIV-RELATED 358 00:12:18,849 --> 00:12:20,584 OPPORTUNISTIC INFECTIONS, BUT 359 00:12:20,584 --> 00:12:22,019 SURELY THEY COULD HAVE DONE 360 00:12:22,019 --> 00:12:23,220 MORE. 361 00:12:23,220 --> 00:12:24,855 SURELY THERE WILL BE OTHER 362 00:12:24,855 --> 00:12:26,056 CONDITIONS THAT THEY WILL BE 363 00:12:26,056 --> 00:12:28,025 DIAGNOSING AS PART OF THE 364 00:12:28,025 --> 00:12:30,661 RESEARCH, AND REALLY IMPORTANT 365 00:12:30,661 --> 00:12:31,629 QUESTIONS HOW TO RESPOND TO 366 00:12:31,629 --> 00:12:32,263 THOSE. 367 00:12:32,263 --> 00:12:33,264 BECAUSE, OF COURSE, THE MAIN 368 00:12:33,264 --> 00:12:35,366 ROLE OF THE RESEARCH IS TO 369 00:12:35,366 --> 00:12:36,901 CONDUCT RESEARCH AND NOT TO 370 00:12:36,901 --> 00:12:37,435 PROVIDE CARE. 371 00:12:37,435 --> 00:12:39,170 THEY'RE NOT HEALTHCARE 372 00:12:39,170 --> 00:12:39,637 PROVIDERS. 373 00:12:39,637 --> 00:12:41,672 YET THEY SEEM TO HAVE -- YOU 374 00:12:41,672 --> 00:12:43,808 KNOW, THERE'S A REALLY STRONG 375 00:12:43,808 --> 00:12:46,210 INTUITION THEY SHOULD BE DOING 376 00:12:46,210 --> 00:12:48,579 SOMETHING ABOUT THE CONDITIONS 377 00:12:48,579 --> 00:12:50,748 THAT THEY SEE. 378 00:12:50,748 --> 00:12:51,882 SO REALLY IMPORTANT QUESTIONS 379 00:12:51,882 --> 00:12:53,384 ABOUT THESE OBLIGATIONS WITH 380 00:12:53,384 --> 00:12:55,152 RESPECT TO ANCILLARY CARE THAT 381 00:12:55,152 --> 00:12:56,454 IS CONDITIONS THAT ARE NOT 382 00:12:56,454 --> 00:12:59,089 RELATED TO THE STUDY BUT 383 00:12:59,089 --> 00:13:02,126 NONETHELESS HAVE REALLY 384 00:13:02,126 --> 00:13:03,227 IMPORTANT HEALTH IMPLICATIONS 385 00:13:03,227 --> 00:13:04,562 FOR THE PARTICIPANTS. 386 00:13:04,562 --> 00:13:06,297 AND THEN POST STUDY OBLIGATIONS. 387 00:13:06,297 --> 00:13:09,567 WE HAVE SYSTEMS IN HIGH INCOME 388 00:13:09,567 --> 00:13:11,902 COUNTRIES, HOWEVER IMPERFECT, 389 00:13:11,902 --> 00:13:13,304 THAT MEAN THAT WHEN RESEARCH IS 390 00:13:13,304 --> 00:13:15,606 CONDUCTED AND IT SHOWS THAT AN 391 00:13:15,606 --> 00:13:17,241 INTERVENTION IS SAFE AND 392 00:13:17,241 --> 00:13:19,009 EFFECTIVE, IT WILL MAKE ITSELF 393 00:13:19,009 --> 00:13:19,977 INTO THE MARKET. 394 00:13:19,977 --> 00:13:21,378 THAT'S WHY PEOPLE DO THE 395 00:13:21,378 --> 00:13:24,882 RESEARCH, LAKE T LIKE THEY WILLT 396 00:13:24,882 --> 00:13:25,783 LICENSURE AND IT WILL BE 397 00:13:25,783 --> 00:13:26,750 MARKETED. 398 00:13:26,750 --> 00:13:28,819 SO STUDIES, THE POPULATIONS AND 399 00:13:28,819 --> 00:13:31,088 THE PARTICIPANTS WILL EVENTUALLY 400 00:13:31,088 --> 00:13:34,959 GET ACCESS TO THESE 401 00:13:34,959 --> 00:13:35,292 INTERVENTIONS. 402 00:13:35,292 --> 00:13:36,827 THAT IS LESS THE CASE IN 403 00:13:36,827 --> 00:13:40,631 COUNTRIES THAT DON'T HAVE AS 404 00:13:40,631 --> 00:13:45,336 MUCH MONEY AT THEIR DISPOSAL FOR 405 00:13:45,336 --> 00:13:46,770 HEALTHCARE, SO NEW INNOVATIONS 406 00:13:46,770 --> 00:13:47,872 ARE OFTEN VERY LATE TO COME IF 407 00:13:47,872 --> 00:13:49,507 THEY COME AT ALL IN 408 00:13:49,507 --> 00:13:50,140 LOW/MIDDLE-INCOME COUNTRIES, AND 409 00:13:50,140 --> 00:13:51,909 THERE'S REALLY IMPORTANT 410 00:13:51,909 --> 00:13:54,111 QUESTIONS AROUND POST-STUDY 411 00:13:54,111 --> 00:13:56,614 OBLIGATIONS BOTH TO INDIVIDUAL 412 00:13:56,614 --> 00:13:57,281 PARTICIPANTS OF WHAT HAPPENS 413 00:13:57,281 --> 00:14:01,852 WHEN THE STUDY IS OVER, TO THOSE 414 00:14:01,852 --> 00:14:04,488 PARTICIPANTS, AND THEY, SAY, DO 415 00:14:04,488 --> 00:14:05,523 NOT HAVE CONTINUITY OF CARE 416 00:14:05,523 --> 00:14:07,124 BECAUSE THE HEALTHCARE 417 00:14:07,124 --> 00:14:09,193 INFRASTRUCTURE LOCALLY IS 418 00:14:09,193 --> 00:14:11,061 SUBOPTIMAL. 419 00:14:11,061 --> 00:14:14,765 OR ALSO AT THE POPULATION LEVEL. 420 00:14:14,765 --> 00:14:16,200 I'VE HIGHLIGHTED A COUPLE OF 421 00:14:16,200 --> 00:14:18,502 THESE TOPICS, I THINK BECAUSE 422 00:14:18,502 --> 00:14:20,471 THESE ARE THE ONES THAT WE'LL BE 423 00:14:20,471 --> 00:14:23,207 TALKING ABOUT IN MORE DETAIL 424 00:14:23,207 --> 00:14:24,842 TODAY. 425 00:14:24,842 --> 00:14:28,012 HOLLY ALREADY MENTIONED JOE 426 00:14:28,012 --> 00:14:29,246 MILLUM WILL BE TALKING ABOUT 427 00:14:29,246 --> 00:14:32,049 POST STUDY OBLIGATIONS, AND I 428 00:14:32,049 --> 00:14:33,484 WILL BE TALKING ABOUT STANDARD 429 00:14:33,484 --> 00:14:35,219 OF CARE NOW AND DORCAS KAMUYA IS 430 00:14:35,219 --> 00:14:38,422 GOING TO SPEAK ABOUT COMMUNITY 431 00:14:38,422 --> 00:14:38,923 ENGAGEMENT. 432 00:14:38,923 --> 00:14:41,692 SO WITH THAT OVERVIEW OF SORT OF 433 00:14:41,692 --> 00:14:44,094 THE CONTEXT OF INTERNATIONAL 434 00:14:44,094 --> 00:14:46,263 RESEARCH ETHICS AND THE KIND OF 435 00:14:46,263 --> 00:14:48,899 ISSUES THAT ARE SPECIFIC IN THIS 436 00:14:48,899 --> 00:14:50,334 FROM AN ETHICAL PERSPECTIVE, I 437 00:14:50,334 --> 00:14:53,170 WOULD LIKE NOW TO TURN TO THE 438 00:14:53,170 --> 00:14:54,371 DEBATE ABOUT THE STANDARD OF 439 00:14:54,371 --> 00:14:56,106 CARE IN INTERNATIONAL 440 00:14:56,106 --> 00:14:58,008 COLLABORATIVE RESEARCH, AND 441 00:14:58,008 --> 00:15:00,010 BASICALLY THE OVERALL ARGUMENT 442 00:15:00,010 --> 00:15:01,812 THAT I WOULD LIKE TO MAKE IS 443 00:15:01,812 --> 00:15:06,517 THAT IT LOOKS ON THE FACE OF IT 444 00:15:06,517 --> 00:15:07,651 LIKE AS AT THE DEBATE MAINLY 445 00:15:07,651 --> 00:15:09,687 ABOUT WHAT IS OWED TO INDIVIDUAL 446 00:15:09,687 --> 00:15:12,423 PARTICIPANTS, SO THIS ARISES 447 00:15:12,423 --> 00:15:15,326 MAINLY IN THE CONTEXT OF 448 00:15:15,326 --> 00:15:16,360 RANDOMIZED CONTROL TRIALS WHERE 449 00:15:16,360 --> 00:15:19,196 A NEW INTERVENTION IS BEING 450 00:15:19,196 --> 00:15:21,265 TESTED AGAINST AN EXISTING ONE, 451 00:15:21,265 --> 00:15:23,033 OR AGAINST A PLACEBO, AND THE 452 00:15:23,033 --> 00:15:26,537 QUESTION IS, WHAT SHOULD WE BE 453 00:15:26,537 --> 00:15:27,504 TESTING IT AGAINST, WHAT SHOULD 454 00:15:27,504 --> 00:15:28,772 BE THE STANDARD OF CARE THAT WE 455 00:15:28,772 --> 00:15:29,373 TEST IT AGAINST. 456 00:15:29,373 --> 00:15:30,908 NOW IF THERE ISN'T A STANDARD OF 457 00:15:30,908 --> 00:15:33,644 CARE, WE CAN EASILY USE PLACEBO, 458 00:15:33,644 --> 00:15:38,983 AND THAT IS SORT OF A VERY 459 00:15:38,983 --> 00:15:40,484 ATTRACTIVE DESIGN BECAUSE IT IS 460 00:15:40,484 --> 00:15:45,656 A VERY POWERFUL DESIGN, AND 461 00:15:45,656 --> 00:15:48,058 PROVIDES VERY CLEAN DATA AND IS 462 00:15:48,058 --> 00:15:49,493 ALSO A VERY EFFICIENT DESIGN. 463 00:15:49,493 --> 00:15:50,527 STUDIES ARE NOT THAT BIG. 464 00:15:50,527 --> 00:15:53,764 HOWEVER, IF THERE IS CARE 465 00:15:53,764 --> 00:15:55,933 AVAILABLE AND THAT CARE MIGHT 466 00:15:55,933 --> 00:15:58,802 DIFFER IN DIFFERENT COUNTRIES, 467 00:15:58,802 --> 00:16:00,270 LOW/MIDDLE-INCOME COUNTRIES AND 468 00:16:00,270 --> 00:16:01,038 HIGH INCOME COUNTRIES, WHAT 469 00:16:01,038 --> 00:16:02,239 SHOULD BE THE STANDARD OF CARE, 470 00:16:02,239 --> 00:16:03,807 AND IS IT ACCESSIBLE TO 471 00:16:03,807 --> 00:16:05,809 SOMETIMES GO BELOW WHAT'S THE 472 00:16:05,809 --> 00:16:09,613 BEST GLOBAL STANDARD. 473 00:16:09,613 --> 00:16:11,281 SO THAT DEBATE, THE OVERALL 474 00:16:11,281 --> 00:16:12,683 ARGUMENT I KIND OF WANT TO MAKE 475 00:16:12,683 --> 00:16:13,550 TODAY IS THAT IT LOOKS LIKE ON 476 00:16:13,550 --> 00:16:14,885 THE FACE OF IT IT'S MAINLY ABOUT 477 00:16:14,885 --> 00:16:16,820 WHAT IS OWED TO PARTICIPANTS, 478 00:16:16,820 --> 00:16:19,456 BUT IT HAS MUCH LARGER 479 00:16:19,456 --> 00:16:20,658 IMPLICATIONS FOR WHAT KIND OF 480 00:16:20,658 --> 00:16:21,992 RESEARCH QUESTIONS WE ARE 481 00:16:21,992 --> 00:16:23,827 ACTUALLY ASKING, AND WHETHER 482 00:16:23,827 --> 00:16:25,029 STUDIES ARE FEASIBLE. 483 00:16:25,029 --> 00:16:27,231 AND WE WILL SPEAK ABOUT THIS AS 484 00:16:27,231 --> 00:16:28,999 THE LECTURE KIND OF UNFOLDS. 485 00:16:28,999 --> 00:16:33,737 TO START US OFF, I WANT TO 486 00:16:33,737 --> 00:16:38,442 DESCRIBE THE SET OF TRIALS OF AN 487 00:16:38,442 --> 00:16:40,344 ANTIRETROVIRAL TREATMENT REGIMEN 488 00:16:40,344 --> 00:16:43,514 TO PREVENT TRANSMISSION OF HIV 489 00:16:43,514 --> 00:16:46,316 FROM PREGNANT PEOPLE TO THEIR 490 00:16:46,316 --> 00:16:46,950 OFFSPRING. 491 00:16:46,950 --> 00:16:48,686 THAT KICKED OFF THIS ENTIRE 492 00:16:48,686 --> 00:16:49,453 DEBATE. 493 00:16:49,453 --> 00:16:51,855 SO PREGNANT PEOPLE WHO LIVE WITH 494 00:16:51,855 --> 00:16:53,624 HIV TRANSMIT THE DISEASE TO 495 00:16:53,624 --> 00:16:56,694 ABOUT 15 TO 45% OF THEIR 496 00:16:56,694 --> 00:16:58,429 NEWBORNS IF UNTREATED. 497 00:16:58,429 --> 00:17:02,166 AND IN THE 1990s, A REALLY 498 00:17:02,166 --> 00:17:05,569 SUCCESSFUL REGIMEN WAS DEVELOPED 499 00:17:05,569 --> 00:17:09,606 IN HIGH INCOME COUNTRIES, IT WAS 500 00:17:09,606 --> 00:17:13,744 CALLED O76 AZT, ALSO THE NAME I 501 00:17:13,744 --> 00:17:16,146 WILL BE USING HERE, 076, THAT 502 00:17:16,146 --> 00:17:17,648 LOWERED TRANSMISSION TO LESS 503 00:17:17,648 --> 00:17:22,286 THAN 5% SO HIGHLY EFFECTIVE 504 00:17:22,286 --> 00:17:24,655 INTERVENTION, BUT 076 WAS 505 00:17:24,655 --> 00:17:26,123 COMPLICATED, INVOLVED A LOT OF 506 00:17:26,123 --> 00:17:27,357 STEPS, TREATING THE PREGNANT 507 00:17:27,357 --> 00:17:28,859 PERSON IN THE LAST TRIMESTER, 508 00:17:28,859 --> 00:17:34,531 THEN INFUSING ANTIRETROVIRALS 509 00:17:34,531 --> 00:17:36,066 DURING BIRTH INTRAVENOUSLY AND 510 00:17:36,066 --> 00:17:39,036 THEN TREATING THE CHILD AND ALSO 511 00:17:39,036 --> 00:17:41,038 REFRAINING FROM BREASTFEEDING 512 00:17:41,038 --> 00:17:42,506 BECAUSE HIV CAN BE TRANSMITTED 513 00:17:42,506 --> 00:17:45,142 THROUGH BREAST MILK, AND BOTTLE 514 00:17:45,142 --> 00:17:46,844 FEEDING. 515 00:17:46,844 --> 00:17:48,679 AND THIS IS BOTH VERY COMPLEX 516 00:17:48,679 --> 00:17:52,483 AND REQUIRES A LOT OF 517 00:17:52,483 --> 00:17:53,383 INFRASTRUCTURE TO GET DONE 518 00:17:53,383 --> 00:17:58,188 THAT'S MADE THIS A CHALLENGE TO 519 00:17:58,188 --> 00:17:59,056 IMPLEMENT IN LOW/MIDDLE-INCOME 520 00:17:59,056 --> 00:17:59,389 COUNTRIES. 521 00:17:59,389 --> 00:18:01,592 IT WAS ALSO VERY EXPENSIVE, AT 522 00:18:01,592 --> 00:18:04,862 THE TIME IT WAS ABOUT $800 PER 523 00:18:04,862 --> 00:18:09,333 PREGNANT PERSON AND CHILD, AND 524 00:18:09,333 --> 00:18:10,768 MANY COUNTRIES, 525 00:18:10,768 --> 00:18:11,401 LOW/MIDDLE-INCOME COUNTRIES AT 526 00:18:11,401 --> 00:18:13,170 THE TIME WERE SPENDING LESS THAN 527 00:18:13,170 --> 00:18:15,906 $100 PER YEAR AND PERSON ON 528 00:18:15,906 --> 00:18:17,741 HEALTHCARE, AND MANY COUNTRIES 529 00:18:17,741 --> 00:18:20,177 WITHIN THOSE ACTUALLY LESS. 530 00:18:20,177 --> 00:18:23,981 SO THIS WAS NOT REALLY FEASIBLE 531 00:18:23,981 --> 00:18:24,982 TO IMPLEMENT. 532 00:18:24,982 --> 00:18:26,517 RESEARCHERS THEN WANTED TO 533 00:18:26,517 --> 00:18:28,152 DEVELOP A SHORT COURSE AZT 534 00:18:28,152 --> 00:18:30,220 REGIMEN THAT COULD BE 535 00:18:30,220 --> 00:18:32,189 IMPLEMENTED IN LOW/MIDDLE-INCOME 536 00:18:32,189 --> 00:18:33,824 COUNTRIES. 537 00:18:33,824 --> 00:18:41,598 AND THEY EXPECTED THIS TO BE -- 538 00:18:41,598 --> 00:18:43,767 DECIDED THAT A COMPARISON WITH 539 00:18:43,767 --> 00:18:45,102 076 WAS THEREFORE NOT EXPECTED 540 00:18:45,102 --> 00:18:46,403 TO PRODUCE MEANINGFUL RESULTS 541 00:18:46,403 --> 00:18:47,938 AND, THEREFORE, TESTED IT 542 00:18:47,938 --> 00:18:55,479 AGAINST PLACEBO. 543 00:18:55,479 --> 00:18:58,248 NOW THESE TRIALS KICKED OFF A 544 00:18:58,248 --> 00:18:58,982 REALLY SIGNIFICANT CONTROVERSY 545 00:18:58,982 --> 00:19:00,317 AND LOTS OF ETHICAL COMMENTARY 546 00:19:00,317 --> 00:19:02,152 FOLLOWING IT. 547 00:19:02,152 --> 00:19:05,022 THIS IS THE PIECE IN THE NEW 548 00:19:05,022 --> 00:19:06,223 ENGLAND JOURNAL, WHICH IS A 549 00:19:06,223 --> 00:19:08,525 REALLY IMPORTANT JOURNAL IN 550 00:19:08,525 --> 00:19:10,928 MEDICINE, THE TOP JOURNAL IN 551 00:19:10,928 --> 00:19:12,763 MEDICINE, WHERE A PATIENT 552 00:19:12,763 --> 00:19:13,764 ADVOCACY ORGANIZATION BASICALLY 553 00:19:13,764 --> 00:19:15,299 MADE THE ARGUMENT THAT THESE 554 00:19:15,299 --> 00:19:19,002 TRIALS WERE UNETHICAL. 555 00:19:19,002 --> 00:19:20,637 THIS WAS FURTHER AMPLIFIED BY 556 00:19:20,637 --> 00:19:26,577 THE EDITOR OF THE JOURNAL IN AN 557 00:19:26,577 --> 00:19:27,744 EDITORIAL AND LED TO TWO OF THE 558 00:19:27,744 --> 00:19:29,279 KEY SPONSORS OF THESE TRIALS, 559 00:19:29,279 --> 00:19:33,884 THE CDC IN THE U.S. AND THE NIH, 560 00:19:33,884 --> 00:19:34,885 THEIR RESPECTIVE DIRECTORS AT 561 00:19:34,885 --> 00:19:36,086 THE TIME, TO RESPOND. 562 00:19:36,086 --> 00:19:38,021 SO REALLY HIGH PROFILE 563 00:19:38,021 --> 00:19:40,023 CONTROVERSY. 564 00:19:40,023 --> 00:19:43,193 SO LET'S LOOK AT WHAT THE 565 00:19:43,193 --> 00:19:44,628 CRITICS OF THESE TRIALS SAID. 566 00:19:44,628 --> 00:19:46,363 THEY SAID THE SHORT COURSE AZT 567 00:19:46,363 --> 00:19:47,564 TRIALS WERE UNETHICAL BECAUSE 568 00:19:47,564 --> 00:19:49,633 THEY DID NOT PROVIDE THE CONTROL 569 00:19:49,633 --> 00:19:50,734 GROUP WITH THE GLOBAL BEST 570 00:19:50,734 --> 00:19:52,903 STANDARD OF CARE, THAT IS, THE 571 00:19:52,903 --> 00:19:57,174 AZT REGIMEN. 572 00:19:57,174 --> 00:19:59,409 THEY MADE A SMALL QUALIFICATION, 573 00:19:59,409 --> 00:20:00,444 SORT OF A SIDE MARK THAT I JUST 574 00:20:00,444 --> 00:20:04,181 WANT TO NOTE, BUT THEN -- THAT 575 00:20:04,181 --> 00:20:05,849 IT CAN BE ACCEPTABLE TO DEVIATE 576 00:20:05,849 --> 00:20:07,017 FROM THE GLOBAL BEST STANDARD OF 577 00:20:07,017 --> 00:20:09,119 CARE WHEN THE COSTS ARE REALLY 578 00:20:09,119 --> 00:20:09,653 EXCESS SIEVE. 579 00:20:09,653 --> 00:20:12,923 EXCESSIVE. 580 00:20:12,923 --> 00:20:14,591 THE EXAMPLE THEY GIVE IS IF 581 00:20:14,591 --> 00:20:15,559 WE'RE TRYING TO TEST AN 582 00:20:15,559 --> 00:20:18,061 INTERVENTION TO INTERVENE IN 583 00:20:18,061 --> 00:20:20,163 ACUTE MYOCARDIAL INFARCTION, WE 584 00:20:20,163 --> 00:20:22,032 WOULD OFTEN NEED INTENSIVE CARE 585 00:20:22,032 --> 00:20:23,767 FOR THOSE INTERVENTIONS TO WORK, 586 00:20:23,767 --> 00:20:25,402 AND WE COULD NOT REASONABLY 587 00:20:25,402 --> 00:20:28,138 EXPECT TO BUILD INTENSIVE CARE 588 00:20:28,138 --> 00:20:29,239 INFRASTRUCTURE IF THAT DOESN'T 589 00:20:29,239 --> 00:20:30,874 EXIST IN A COUNTRY. 590 00:20:30,874 --> 00:20:33,944 BUT IN GENERAL, THE CLAIM IS, 591 00:20:33,944 --> 00:20:35,012 RESEARCHERS SHOULD PROVIDE THE 592 00:20:35,012 --> 00:20:37,214 CONTROL GROUP THE BEST -- GLOBAL 593 00:20:37,214 --> 00:20:39,182 BEST STANDARD OF CARE WITH SOME 594 00:20:39,182 --> 00:20:40,384 VERY SMALL EXCEPTIONS. 595 00:20:40,384 --> 00:20:42,352 AND THEY GAVE A NUMBER OF 596 00:20:42,352 --> 00:20:44,121 REASONS FOR THESE, AND THESE 597 00:20:44,121 --> 00:20:48,392 ARE, AGAIN, MOSTLY DIRECTED AT 598 00:20:48,392 --> 00:20:51,228 THE PARTICIPANT LEVEL OR THE 599 00:20:51,228 --> 00:20:54,498 INTEREST OF PARTICIPANTS. 600 00:20:54,498 --> 00:20:57,334 SO THEY SAID RESEARCHERS SHOULD 601 00:20:57,334 --> 00:20:58,769 AVOID PREVENTABLE HARM SO THEY 602 00:20:58,769 --> 00:21:00,604 SHOULD GIVE WHAT'S BEST TO 603 00:21:00,604 --> 00:21:03,140 PARTICIPANTS. 604 00:21:03,140 --> 00:21:04,875 THEY SHOULD NOT TREAT 605 00:21:04,875 --> 00:21:06,109 PARTICIPANTS MERELY AS A MEANS 606 00:21:06,109 --> 00:21:09,379 TO GATHERING DATA, SO IF WE DO 607 00:21:09,379 --> 00:21:11,114 NEED TO -- OR IF IT GIVES US 608 00:21:11,114 --> 00:21:13,650 SORT OF THE BEST AND CLEANEST 609 00:21:13,650 --> 00:21:16,920 DATA TO TEST AGAINST PLACEBO AND 610 00:21:16,920 --> 00:21:17,888 WITHHOLD THE GLOBAL BEST 611 00:21:17,888 --> 00:21:18,989 STANDARD OF CARE, WE ARE 612 00:21:18,989 --> 00:21:20,057 TREATING PARTICIPANTS MERELY AS 613 00:21:20,057 --> 00:21:22,159 A MEANS TO GATHERING THOSE DATA, 614 00:21:22,159 --> 00:21:25,796 WE SHOULD NOT BE DOING THIS. 615 00:21:25,796 --> 00:21:26,663 PARTICIPANTS SHOULD ALSO BE 616 00:21:26,663 --> 00:21:27,631 TREATED EQUALLY. 617 00:21:27,631 --> 00:21:31,468 SO THE CLAIM WAS, THESE KIND OF 618 00:21:31,468 --> 00:21:36,506 TRIALS, DOING A PLACEBO 619 00:21:36,506 --> 00:21:38,308 CONTROLLED TRIAL TO TEST THE 620 00:21:38,308 --> 00:21:39,977 SHORT TERM REGIMEN WOULD NOT BE 621 00:21:39,977 --> 00:21:44,781 ACCEPTABLE IN PLACEBO -- THAT 622 00:21:44,781 --> 00:21:46,249 WOULD NOT GO THROUGH ETHICS 623 00:21:46,249 --> 00:21:47,751 REVIEW BECAUSE THE STANDARD OF 624 00:21:47,751 --> 00:21:48,819 CARE IN HIGH INCOME COUNTRIES AT 625 00:21:48,819 --> 00:21:51,154 THE TIME WAS THE 076 REGIMEN AND 626 00:21:51,154 --> 00:21:52,356 WITHHOLDING THAT WITH THE HUGE 627 00:21:52,356 --> 00:21:54,925 BENEFITS YOU JUST SAW WOULD HAVE 628 00:21:54,925 --> 00:21:56,827 EXPOSED PARTICIPANTS TO 629 00:21:56,827 --> 00:21:59,029 EXCESSIVE RISKS SO THEY SAID 630 00:21:59,029 --> 00:22:00,664 LOOK, WE'RE CONDUCTING TRIALS IN 631 00:22:00,664 --> 00:22:01,865 LOW/MIDDLE-INCOME COUNTRIES THAT 632 00:22:01,865 --> 00:22:03,734 WOULD NOT BE ACCEPTABLE IN HIGH 633 00:22:03,734 --> 00:22:07,004 INCOME COUNTRIES, AND SO WE'RE 634 00:22:07,004 --> 00:22:09,973 TREATING PEOPLE UNEQUALLY. 635 00:22:09,973 --> 00:22:12,609 RELATEDLY, THEY SAID WE SHOULD 636 00:22:12,609 --> 00:22:15,679 ADHERE TO UNIVERSAL ETHICAL 637 00:22:15,679 --> 00:22:17,447 STANDARDS ONE OF THE UNIVERSAL 638 00:22:17,447 --> 00:22:18,382 ETHICAL STANDARDS AT THE TIME 639 00:22:18,382 --> 00:22:23,120 WAS THE DECLARATION OF HELSINKI, 640 00:22:23,120 --> 00:22:25,088 WHICH IS AN IMPORTANT DOCUMENT 641 00:22:25,088 --> 00:22:27,924 BY THE WORLD MEDICAL 642 00:22:27,924 --> 00:22:29,026 ORGANIZATION THAT LAYS OUT 643 00:22:29,026 --> 00:22:31,094 PRINCIPLES FOR THE ETHICS OF 644 00:22:31,094 --> 00:22:33,964 CONDUCTING RESEARCH, AND THIS 645 00:22:33,964 --> 00:22:35,899 DECLARATION AT THE TIME SAID IN 646 00:22:35,899 --> 00:22:37,901 ANY MEDICAL STUDY, EVERY PATIENT 647 00:22:37,901 --> 00:22:38,869 INCLUDING THOSE OF THE CONTROL 648 00:22:38,869 --> 00:22:41,304 GROUP IF ANY SHOULD BE ASSURED 649 00:22:41,304 --> 00:22:43,573 OF THE BEST PROVEN DIAGNOSTIC 650 00:22:43,573 --> 00:22:45,442 AND THERAPEUTIC METHODS. 651 00:22:45,442 --> 00:22:49,146 THIS DOES NOT INCLUDE THE USE OF 652 00:22:49,146 --> 00:22:53,083 INERT PL PLACEBO IN STUDIES WHEE 653 00:22:53,083 --> 00:22:54,718 NO PROVEN DIAGNOSTIC OR 654 00:22:54,718 --> 00:22:55,519 THERAPEUTIC METHOD EXISTS. 655 00:22:55,519 --> 00:22:56,720 THIS IS THE CURRENT VERSION, I'M 656 00:22:56,720 --> 00:22:58,021 NOT GOING TO GO INTO DETAIL, YOU 657 00:22:58,021 --> 00:22:59,790 CAN READ THE SLIDES LATER, THEY 658 00:22:59,790 --> 00:23:01,625 NOW HAVE SOME EXCEPTIONS, SOME 659 00:23:01,625 --> 00:23:03,026 SMALL EXCEPTIONS FROM THIS, BUT 660 00:23:03,026 --> 00:23:06,663 REALLY STILL, YOU KNOW, GIVE A 661 00:23:06,663 --> 00:23:08,932 REALLY STRONG DEFAULT TO PROVING 662 00:23:08,932 --> 00:23:09,833 AGAINST THE BEST INTERVENTION. 663 00:23:09,833 --> 00:23:13,870 SO THE THOUGHT HERE WAS, IF I GO 664 00:23:13,870 --> 00:23:16,373 BACK HERE, THE UNIVERSAL ETHICAL 665 00:23:16,373 --> 00:23:20,544 STANDARD IS TO TEST AGAINST THE 666 00:23:20,544 --> 00:23:23,246 BEST GLOBAL INTERVENTION 667 00:23:23,246 --> 00:23:24,648 AVAILABLE, AND THOSE STUDYS WERE 668 00:23:24,648 --> 00:23:30,420 VIOLATING THAT STANDARD. 669 00:23:30,420 --> 00:23:32,155 SO THESE ARE, I THINK, 670 00:23:32,155 --> 00:23:34,691 INTUITIVELY VERY COMPELLING 671 00:23:34,691 --> 00:23:35,659 CLAIMS, AND THEY REQUIRE A 672 00:23:35,659 --> 00:23:36,426 RESPONSE. 673 00:23:36,426 --> 00:23:39,396 SO HOW MIGHT ONE DEFEND THOSE 674 00:23:39,396 --> 00:23:41,865 TRIALS? 675 00:23:41,865 --> 00:23:43,934 WHAT COULD YOU SAY IN THEIR 676 00:23:43,934 --> 00:23:44,267 SUPPORT? 677 00:23:44,267 --> 00:23:45,735 I WANT TO TRY TO GIVE DIFFERENT 678 00:23:45,735 --> 00:23:47,104 POSSIBLE ANSWERS AND TALK 679 00:23:47,104 --> 00:23:50,407 THROUGH THEM AND KIND OF SEE -- 680 00:23:50,407 --> 00:23:52,142 TRY TO CONVINCE YOU THAT ONE 681 00:23:52,142 --> 00:23:53,376 PARTICULAR ANSWER, I THINK, IS 682 00:23:53,376 --> 00:23:55,112 THE CORRECT ONE. 683 00:23:55,112 --> 00:23:56,646 SO IS IT PERMISSIBLE TO PROVIDE 684 00:23:56,646 --> 00:23:57,714 LESS THAN THE GLOBAL BEST 685 00:23:57,714 --> 00:23:58,315 STANDARD OF CARE? 686 00:23:58,315 --> 00:24:01,218 AND IF SO, UNDER WHAT CONDITION? 687 00:24:01,218 --> 00:24:03,753 SO ONE WAY OF DEFENDING THE AZT 688 00:24:03,753 --> 00:24:05,388 TRIALS IN RESPONSE TO THOSE 689 00:24:05,388 --> 00:24:07,691 CRITICISMS WOULD BE TO INVOKE 690 00:24:07,691 --> 00:24:09,893 WHAT I LIKE TO CALL THE NO-LOSS 691 00:24:09,893 --> 00:24:12,929 VIEW, AND THAT BASICALLY SAYS 692 00:24:12,929 --> 00:24:14,131 IT'S PERMISSIBLE TO PROVIDE LESS 693 00:24:14,131 --> 00:24:16,133 THAN THE GLOBAL BEST STANDARD OF 694 00:24:16,133 --> 00:24:18,401 CARE IF PARTICIPANTS ARE NOT 695 00:24:18,401 --> 00:24:19,402 DEPRIVED OF TREATMENT THAT THEY 696 00:24:19,402 --> 00:24:20,904 WOULD OTHERWISE RECEIVE. 697 00:24:20,904 --> 00:24:22,439 THE IDEA IS PRETTY SIMPLE. 698 00:24:22,439 --> 00:24:24,407 PEOPLE ARE NOT GETTING ANY 699 00:24:24,407 --> 00:24:26,409 TREATMENT TO PREVENT HIV 700 00:24:26,409 --> 00:24:28,245 TRANSMISSION AT THE MOMENT, AND, 701 00:24:28,245 --> 00:24:29,779 THEREFORE, IT'S ACCEPTABLE NOT 702 00:24:29,779 --> 00:24:31,648 TO GIVE TO THEM IN THE RESEARCH 703 00:24:31,648 --> 00:24:35,886 AS WELL. 704 00:24:35,886 --> 00:24:37,220 SO THIS WOULD IMPLY SORT OF THAT 705 00:24:37,220 --> 00:24:38,555 THE RESEARCHERS COULD PROVIDE 706 00:24:38,555 --> 00:24:41,791 WHAT IS THE LOCAL STANDARD OF 707 00:24:41,791 --> 00:24:42,459 CARE DE FACTO. 708 00:24:42,459 --> 00:24:46,830 I THINK THIS VIEW IS PROBLEMATIC 709 00:24:46,830 --> 00:24:48,598 BECAUSE WHAT IS THE STANDARD -- 710 00:24:48,598 --> 00:24:50,133 LOCAL STANDARD OF CARE DE FACTO 711 00:24:50,133 --> 00:24:52,869 MAY NOT BE ACCEPTABLE, SO YOU 712 00:24:52,869 --> 00:24:57,674 CAN THINK OF A -- YOU KNOW, 713 00:24:57,674 --> 00:24:58,875 INEFFICIENT OR DYSFUNCTIONAL 714 00:24:58,875 --> 00:25:00,844 HEALTHCARE SYSTEM THAT DOES NOT 715 00:25:00,844 --> 00:25:01,711 EFFECTIVELY DELIVER 716 00:25:01,711 --> 00:25:02,379 INTERVENTIONS TO PEOPLE THAT 717 00:25:02,379 --> 00:25:05,215 THEY REALLY SHOULD RECEIVE. 718 00:25:05,215 --> 00:25:09,819 SAY, YOU KNOW, VERY BASIC 719 00:25:09,819 --> 00:25:12,656 IMMUNIZATIONS THAT ARE VERY EASY 720 00:25:12,656 --> 00:25:17,561 AND SUPER EFFECTIVE AND EASY TO 721 00:25:17,561 --> 00:25:18,428 IMPLEMENT, EVERYBODY SHOULD HAVE 722 00:25:18,428 --> 00:25:20,764 ACCESS TO THOSE. 723 00:25:20,764 --> 00:25:21,731 SO JUST BECAUSE IN SOME 724 00:25:21,731 --> 00:25:22,499 SITUATIONS PEOPLE DON'T HAVE 725 00:25:22,499 --> 00:25:24,901 ACCESS TO THEM IS NOT A GOOD 726 00:25:24,901 --> 00:25:28,305 REASON NOT TO PROVIDE THEM. 727 00:25:28,305 --> 00:25:29,940 THIS IS WHAT I THINK COMES OUT 728 00:25:29,940 --> 00:25:32,108 REALLY NICELY IN HERE, THE 729 00:25:32,108 --> 00:25:33,443 PATIENT ADVOCATE SAID THAT, YOU 730 00:25:33,443 --> 00:25:34,744 KNOW, THAT'S NOT A GOOD WAY OR 731 00:25:34,744 --> 00:25:38,148 THE ADVOCATES CRITICIZED THE AZT 732 00:25:38,148 --> 00:25:39,983 TRIALS SAID THAT IN A VERY NICE 733 00:25:39,983 --> 00:25:41,318 WAY. 734 00:25:41,318 --> 00:25:42,385 THEY SAID NOTHING IS A 735 00:25:42,385 --> 00:25:45,021 DESCRIPTION OF WHAT HAPPENED, 736 00:25:45,021 --> 00:25:46,656 STANDARD OF CARE IS A NORMATIVE 737 00:25:46,656 --> 00:25:48,959 STANDARD OF EFFECTIVE MEDICAL 738 00:25:48,959 --> 00:25:49,626 TREATMENT, WHETHER OR NOT IT IS 739 00:25:49,626 --> 00:25:50,460 PROVIDED TO A PARTICULAR 740 00:25:50,460 --> 00:25:50,927 COMMUNITY. 741 00:25:50,927 --> 00:25:53,930 AND I THINK THAT'S EXACTLY RIG 742 00:25:53,930 --> 00:25:55,832 RIGHT. 743 00:25:55,832 --> 00:25:58,268 SO THE BETTER VIEW TO RESPOND TO 744 00:25:58,268 --> 00:25:59,803 THAT IS TO DEVELOP SOMETHING 745 00:25:59,803 --> 00:26:02,005 THAT IS PRECISELY SORT OF THE 746 00:26:02,005 --> 00:26:03,306 NORMATIVE VIEW OR NORMATIVE 747 00:26:03,306 --> 00:26:06,576 STANDARD OF CARE THAT THE 748 00:26:06,576 --> 00:26:07,944 ADVOCATES WERE REFERRING TO, AND 749 00:26:07,944 --> 00:26:09,346 THAT WOULD BE SOMETHING LIKE THE 750 00:26:09,346 --> 00:26:11,047 APPROPRIATE LOCAL CARE VIEW. 751 00:26:11,047 --> 00:26:12,382 AND THAT WOULD SAY IT IS 752 00:26:12,382 --> 00:26:13,683 PERMISSIBLE TO PROVIDE LESS THAN 753 00:26:13,683 --> 00:26:15,885 THE GLOBAL BEST STANDARD OF CARE 754 00:26:15,885 --> 00:26:17,354 IF PARTICIPANTS ARE NOT DEPRIVED 755 00:26:17,354 --> 00:26:18,488 OF TREATMENT THAT THEY SHOULD 756 00:26:18,488 --> 00:26:21,124 OTHERWISE RECEIVE. 757 00:26:21,124 --> 00:26:22,859 AND THAT THEN IMPLIES THAT 758 00:26:22,859 --> 00:26:24,194 RESEARCHERS SHOULD PROVIDE WHAT 759 00:26:24,194 --> 00:26:25,629 IS SORT OF THE NORMATIVE LOCAL 760 00:26:25,629 --> 00:26:32,335 STANDARD OF CARE, THE DE JURE 761 00:26:32,335 --> 00:26:33,937 LOCAL STANDARD OF CARE THAT ALEX 762 00:26:33,937 --> 00:26:35,005 LONDON HAS PROPOSED AS A 763 00:26:35,005 --> 00:26:35,338 TERMINOLOGY. 764 00:26:35,338 --> 00:26:36,773 I THINK THAT IS QUITE OBVIOUSLY 765 00:26:36,773 --> 00:26:37,974 THE CORRECT VIEW. 766 00:26:37,974 --> 00:26:40,810 I DO THINK IT'S NOT AS EASY TO 767 00:26:40,810 --> 00:26:42,245 IMPLEMENT AND THAT IS JUST 768 00:26:42,245 --> 00:26:44,114 SOMETHING TO BE AWARE. 769 00:26:44,114 --> 00:26:47,384 SO EARLY ATTEMPTS, I THINK, HAD 770 00:26:47,384 --> 00:26:50,553 SIMILAR PROBLEMS THAN THE DE 771 00:26:50,553 --> 00:26:51,755 FACTO LOCAL STANDARD OF CARE, 772 00:26:51,755 --> 00:26:56,226 THAT IS, THEY BASICALLY TRIED TO 773 00:26:56,226 --> 00:26:57,460 ANCHOR THE NORMATIVE STANDARD OF 774 00:26:57,460 --> 00:27:01,498 CARE AND WHAT IS THE CASE, AND 775 00:27:01,498 --> 00:27:07,604 SO IF YOU LOOK AT THE NUFFIELD 776 00:27:07,604 --> 00:27:09,039 COUNCIL, IT SAYS THE STANDARD OF 777 00:27:09,039 --> 00:27:10,440 CARE IS WHAT THE COUNTRY 778 00:27:10,440 --> 00:27:11,508 ENDEAVORS TO PROVIDE NATIONALLY 779 00:27:11,508 --> 00:27:12,642 BUT YOU CAN THINK OF COUNTRIES 780 00:27:12,642 --> 00:27:14,044 THAT JUST DON'T ENDEAVOR TO 781 00:27:14,044 --> 00:27:15,378 PROVIDE ENOUGH, THEY'RE NOT 782 00:27:15,378 --> 00:27:16,379 AMBITIOUS ENOUGH OR THEY THINK, 783 00:27:16,379 --> 00:27:19,082 YOU KNOW, THEY SHOULD SPEND ON 784 00:27:19,082 --> 00:27:22,919 MILITARY RATHER THAN RESEARCH OR 785 00:27:22,919 --> 00:27:24,020 SOMETHING -- I'M SORRY, 786 00:27:24,020 --> 00:27:24,621 HEALTHCARE OR SOMETHING LIKE 787 00:27:24,621 --> 00:27:26,222 THAT. 788 00:27:26,222 --> 00:27:27,757 SIMILARLY, A RELATED DEFINITION 789 00:27:27,757 --> 00:27:29,059 WHICH IS WHAT THE HIGHEST LEVEL 790 00:27:29,059 --> 00:27:31,461 OF CARE THAT IS ATTAINABLE IN 791 00:27:31,461 --> 00:27:33,229 THE HOST COUNTRY, YOU CAN THINK 792 00:27:33,229 --> 00:27:35,165 AGAIN LIKE, YOU KNOW, IF THE 793 00:27:35,165 --> 00:27:36,333 HEALTHCARE INFRASTRUCTURE 794 00:27:36,333 --> 00:27:38,568 LOCALLY HAS REALLY BEEN 795 00:27:38,568 --> 00:27:41,304 NEGLECTED, AND THAT IS SORT OF 796 00:27:41,304 --> 00:27:43,673 CAN BE SEEN AS AN INJUSTICE, 797 00:27:43,673 --> 00:27:45,141 THEN THIS IS NOT AN ADEQUATE 798 00:27:45,141 --> 00:27:46,876 NORMATIVE STANDARD OF CARE. 799 00:27:46,876 --> 00:27:48,311 THE CURRENT VERSION OF THESE 800 00:27:48,311 --> 00:27:53,583 VERY GUIDELINES HERE FROM UNAIDS 801 00:27:53,583 --> 00:27:54,984 I THINK GETS TO THE IDEA MUCH 802 00:27:54,984 --> 00:27:56,419 BETTER BECAUSE THEY SAY IT'S A 803 00:27:56,419 --> 00:27:59,589 PACKAGE AND THEY SPEAK ABOUT HIV 804 00:27:59,589 --> 00:28:00,690 PREVENTION TRIALS SO THEY TALK 805 00:28:00,690 --> 00:28:01,991 ABOUT PREVENTION METHODS THAT 806 00:28:01,991 --> 00:28:05,695 ARE RECOMMENDED BY THE WHO AND 807 00:28:05,695 --> 00:28:07,997 THEN THEY EXPLAIN IN QUITE A LOT 808 00:28:07,997 --> 00:28:11,501 OF DETAIL WHAT A WHO 809 00:28:11,501 --> 00:28:12,802 RECOMMENDATION MEANS, NAMELY, 810 00:28:12,802 --> 00:28:14,771 THAT IT IS BASED ON A VERY 811 00:28:14,771 --> 00:28:18,174 CAREFUL REVIEW OF THE EVIDENCE 812 00:28:18,174 --> 00:28:20,577 OF EFFECTIVENESS BUT ALSO OF 813 00:28:20,577 --> 00:28:22,545 COST-EFFECTIVENESS OF THE 814 00:28:22,545 --> 00:28:24,080 INTERVENTIONS, OF OTHER 815 00:28:24,080 --> 00:28:25,281 CONSIDERATIONS, YOU KNOW, WHO 816 00:28:25,281 --> 00:28:26,049 WOULD BENEFIT FROM THE 817 00:28:26,049 --> 00:28:27,584 INTERVENTION AND SO ON, THAT ARE 818 00:28:27,584 --> 00:28:31,488 OF ETHICAL NATURE, ALL OF THAT 819 00:28:31,488 --> 00:28:33,823 IS DONE IN A FAIR AND 820 00:28:33,823 --> 00:28:36,860 TRANSPARENT PROCESS WITH ALSO 821 00:28:36,860 --> 00:28:38,962 INPUT FROM THE COMMUNITY, AND 822 00:28:38,962 --> 00:28:41,898 THE WHO IS SORT OF FOCUSED ON 823 00:28:41,898 --> 00:28:43,666 PROVIDING GUIDANCE FOR 824 00:28:43,666 --> 00:28:44,334 LOW/MIDDLE-INCOME COUNTRIES THAT 825 00:28:44,334 --> 00:28:46,636 MIGHT NOT HAVE THE RESOURCES TO 826 00:28:46,636 --> 00:28:48,571 DEVELOP THEIR OWN GUIDANCE, SO 827 00:28:48,571 --> 00:28:50,407 IT ALSO SEEMS APPROPRIATE SORT 828 00:28:50,407 --> 00:28:53,810 OF FROM THAT PERSPECTIVE. 829 00:28:53,810 --> 00:28:55,044 I THINK THAT IS SORT OF THE 830 00:28:55,044 --> 00:28:55,678 RIGHT APPROACH. 831 00:28:55,678 --> 00:28:59,883 I WOULD JUST NUANCE IT A LITTLE 832 00:28:59,883 --> 00:29:01,518 BIT MORE, BECAUSE I DO THINK THE 833 00:29:01,518 --> 00:29:05,755 GLOBAL STANDARD OF CARE MAY NOT 834 00:29:05,755 --> 00:29:07,624 BE SUFFICIENTLY 835 00:29:07,624 --> 00:29:08,825 CONTEXT-SENSITIVE, SO IDEALLY, I 836 00:29:08,825 --> 00:29:11,995 THINK WE WOULD DO SOMETHING 837 00:29:11,995 --> 00:29:13,530 SIMILAR TO WHAT THIS DOCUMENT 838 00:29:13,530 --> 00:29:17,700 PROPOSES, NAMELY THAT 839 00:29:17,700 --> 00:29:19,869 APPROPRIATE LOCAL CARE, THE 840 00:29:19,869 --> 00:29:22,939 LOCAL STANDARD OF CARE SHOULD BE 841 00:29:22,939 --> 00:29:27,310 KIND OF DEFINED IN A FAIR AND 842 00:29:27,310 --> 00:29:30,146 TRANSPARENT PROCESS THAT SETS 843 00:29:30,146 --> 00:29:31,681 PRIORITIES LOCALLY ON THE PATH 844 00:29:31,681 --> 00:29:33,116 TO UNIVERSAL HEALTHCARE 845 00:29:33,116 --> 00:29:33,450 COVERAGE. 846 00:29:33,450 --> 00:29:36,619 SO SETS PRIORITIES AS COUNTRIES 847 00:29:36,619 --> 00:29:38,688 SCALE UP THEIR HEALTHCARE 848 00:29:38,688 --> 00:29:39,989 COVERAGE AND DEVELOP THEIR 849 00:29:39,989 --> 00:29:42,425 HEALTHCARE PACKAGES AND MAKE 850 00:29:42,425 --> 00:29:44,260 VERY EXPLICIT PRIORITIES UNDER 851 00:29:44,260 --> 00:29:45,795 RESOURCE CONSTRAINTS WHAT TO 852 00:29:45,795 --> 00:29:47,564 INCLUDE. 853 00:29:47,564 --> 00:29:49,732 I THINK THAT WOULD BE SORT OF 854 00:29:49,732 --> 00:29:51,935 THE IDEAL AND WHERE SUCH A 855 00:29:51,935 --> 00:29:53,803 PROCESS DOES NOT EXIST, IT 856 00:29:53,803 --> 00:29:56,072 SHOULD SERVE AS SORT OF AN IDEAL 857 00:29:56,072 --> 00:29:57,974 OR HEURISTIC TO DETERMINE WHAT 858 00:29:57,974 --> 00:30:02,212 APPROPRIATE LOCAL CARE MIGHT BE. 859 00:30:02,212 --> 00:30:05,381 SO IF YOU APPLY THAT TO THE AZT 860 00:30:05,381 --> 00:30:06,649 TRIALS, FEW LOW/MIDDLE-INCOME 861 00:30:06,649 --> 00:30:08,885 COUNTRIES AT THE TIME AND ALSO 862 00:30:08,885 --> 00:30:09,886 ACTUALLY FEW HIGH-INCOME 863 00:30:09,886 --> 00:30:11,387 COUNTRIES HAD A FAIR PRIORITY 864 00:30:11,387 --> 00:30:13,356 SETTING PROCESS AND I THINK THE 865 00:30:13,356 --> 00:30:15,458 SAME STILL HOLDS TRUE TODAY, 866 00:30:15,458 --> 00:30:18,828 THOUGH TO A LESSER EXTENT. 867 00:30:18,828 --> 00:30:23,967 BUT YOU CAN SEE THAT THE 076 AZT 868 00:30:23,967 --> 00:30:25,168 REGIMEN, I BRIEFLY MENTIONED THE 869 00:30:25,168 --> 00:30:27,470 COST EARLIER, COSTS ABOUT -- 870 00:30:27,470 --> 00:30:28,705 MORE THAN 10 TIMES MORE THAN THE 871 00:30:28,705 --> 00:30:32,175 HEALTHCARE BUDGET PER PERSON AND 872 00:30:32,175 --> 00:30:33,276 YEAR IN MOST LOW/MIDDLE-INCOME 873 00:30:33,276 --> 00:30:34,377 COUNTRIES AT THE TIME, AND IT 874 00:30:34,377 --> 00:30:37,847 SEEMS UNLIKELY TO ME THAT 875 00:30:37,847 --> 00:30:38,615 GIVEN -- A GIVEN 876 00:30:38,615 --> 00:30:39,716 LOW/MIDDLE-INCOME COUNTRY WOULD 877 00:30:39,716 --> 00:30:42,919 INCLUDE THE REGIMEN IN ITS BASIC 878 00:30:42,919 --> 00:30:44,220 HEALTHCARE PACKAGE, AND HENCE IT 879 00:30:44,220 --> 00:30:45,622 SEEMS UNLIKELY THAT IT WOULD BE 880 00:30:45,622 --> 00:30:47,824 SORT OF THE NORMATIVE STANDARD 881 00:30:47,824 --> 00:30:49,225 OF CARE UNDER LOCAL 882 00:30:49,225 --> 00:30:54,364 CIRCUMSTANCES. 883 00:30:54,364 --> 00:30:55,999 SO I THINK FROM THAT 884 00:30:55,999 --> 00:30:58,434 PERSPECTIVE, NOT PROVIDING THE 885 00:30:58,434 --> 00:31:00,403 076 REGIMEN IS ACCEPTABLE. 886 00:31:00,403 --> 00:31:02,805 I ALSO THINK THAT THAT IS NOT 887 00:31:02,805 --> 00:31:04,440 THE WHOLE STORY THAT WE CAN GIVE 888 00:31:04,440 --> 00:31:05,875 TO DEFEND THESE TRIALS, OR THAT 889 00:31:05,875 --> 00:31:09,145 WE SHOULD GIVE TO DEFEND THESE 890 00:31:09,145 --> 00:31:11,114 TRIALS, BECAUSE IT FOCUSES ONLY 891 00:31:11,114 --> 00:31:13,082 ON THE LEVEL OF THE INDIVIDUAL 892 00:31:13,082 --> 00:31:14,183 PARTICIPANTS. 893 00:31:14,183 --> 00:31:16,152 I THINK THERE MUST ALSO BE A 894 00:31:16,152 --> 00:31:18,021 POSITIVE JUSTIFICATION FOR 895 00:31:18,021 --> 00:31:18,922 TESTING AGAINST A LOWER STANDARD 896 00:31:18,922 --> 00:31:20,290 OF CARE, SO IT'S NOT ENOUGH TO 897 00:31:20,290 --> 00:31:21,724 JUST SAY, WE'RE NOT MAKING 898 00:31:21,724 --> 00:31:23,026 PEOPLE WORSE ON THAN THEY SHOULD 899 00:31:23,026 --> 00:31:24,794 HAVE BEEN OUTSIDE THE RESEARCH. 900 00:31:24,794 --> 00:31:27,397 AND THIS IS WHERE I THINK IT'S 901 00:31:27,397 --> 00:31:28,831 IMPORTANT, REALLY CRITICAL, 902 00:31:28,831 --> 00:31:30,166 ACTUALLY, TO SEE THAT THE CHOICE 903 00:31:30,166 --> 00:31:33,436 OF THE STANDARD OF CARE HAS 904 00:31:33,436 --> 00:31:34,637 IMPLICATIONS FOR WHAT RESEARCH 905 00:31:34,637 --> 00:31:36,172 QUESTIONS WE ARE ASKING, SO WHAT 906 00:31:36,172 --> 00:31:38,575 WE ARE ACTUALLY COMPARING, AND 907 00:31:38,575 --> 00:31:41,644 THEN WHAT IT HAS IMPLICATIONS 908 00:31:41,644 --> 00:31:42,879 FOR SORT OF THE FEASIBILITY OF 909 00:31:42,879 --> 00:31:44,380 THE TRIALS. 910 00:31:44,380 --> 00:31:46,449 SO THERE IS A DIFFERENCE BETWEEN 911 00:31:46,449 --> 00:31:50,720 ASKING, YOU KNOW, IS THIS SHORT 912 00:31:50,720 --> 00:31:51,688 COURSE REGIMEN, YOU KNOW, WHEN 913 00:31:51,688 --> 00:31:53,990 YOU COMPARE TO PLACEBO, IS THE 914 00:31:53,990 --> 00:31:58,027 SHORT COURSE REGIMEN BETTER 915 00:31:58,027 --> 00:31:59,495 BASICALLY THAN NOTHING, IS THE 916 00:31:59,495 --> 00:32:01,331 QUESTION THAT YOU'RE ASKING WITH 917 00:32:01,331 --> 00:32:03,266 A PLACEBO CONTROL, VERSUS WHEN 918 00:32:03,266 --> 00:32:06,803 YOU'RE COMPARING TO THE 919 00:32:06,803 --> 00:32:09,639 076 REGIMEN, YOU'RE ASKING IS IT 920 00:32:09,639 --> 00:32:11,507 WORSE THAN, YOU KNOW, WHAT'S 921 00:32:11,507 --> 00:32:13,910 CURRENTLY THE GLOBAL BEST. 922 00:32:13,910 --> 00:32:15,211 OR, YOU KNOW, AND HOW MUCH WORSE 923 00:32:15,211 --> 00:32:17,714 IS IT OR IS IT COMPARABLE TO IT. 924 00:32:17,714 --> 00:32:19,182 SO THERE'S A DIFFERENT RESEARCH 925 00:32:19,182 --> 00:32:20,817 QUESTION THAT YOU ARE ASKING AND 926 00:32:20,817 --> 00:32:24,053 IT GIVES YOU DIFFERENT DATA THAT 927 00:32:24,053 --> 00:32:26,689 MAY OR MAY NOT BE RESPONSIVE 928 00:32:26,689 --> 00:32:28,558 TO -- OR MAY NOT BE THE 929 00:32:28,558 --> 00:32:30,193 INFORMATION THAT PEOPLE NEED 930 00:32:30,193 --> 00:32:30,526 LOCALLY. 931 00:32:30,526 --> 00:32:32,929 IT ALSO HAS IMPLICATIONS, YOU 932 00:32:32,929 --> 00:32:34,897 KNOW, FOR THE SIZE OF THE TRIALS 933 00:32:34,897 --> 00:32:36,532 AND THE KIND OF DATA THAT YOU'RE 934 00:32:36,532 --> 00:32:38,601 GETTING, SO IF YOU'RE TESTING 935 00:32:38,601 --> 00:32:41,237 AGAINST A PLACEBO, I MENTIONED 936 00:32:41,237 --> 00:32:42,672 EARLIER IT'S A VERY POWERFUL 937 00:32:42,672 --> 00:32:45,074 DESIGN THAT OFTEN INVOLVES FEWER 938 00:32:45,074 --> 00:32:46,809 PARTICIPANTS THAN ACTIVE 939 00:32:46,809 --> 00:32:48,111 COMPARATOR TRIALS, WHERE YOU'RE 940 00:32:48,111 --> 00:32:49,879 TESTING AGAINST, YOU KNOW, AN 941 00:32:49,879 --> 00:32:51,180 INTERVENTION THAT ALREADY 942 00:32:51,180 --> 00:32:52,615 EXISTS, THEY'RE MUCH LARGER, AND 943 00:32:52,615 --> 00:32:54,584 SOMETIMES THAT CAN MAKE THE 944 00:32:54,584 --> 00:32:56,452 DIFFERENCE BETWEEN CONDUCTING A 945 00:32:56,452 --> 00:32:57,754 TRIAL OR NOT CONDUCTING A TRIAL 946 00:32:57,754 --> 00:33:00,390 AT ALL, BECAUSE THE TRIALS WHEN 947 00:33:00,390 --> 00:33:02,358 THEY'RE REALLY BIG, YOU KNOW, 948 00:33:02,358 --> 00:33:06,062 THEY'RE LOGISTICALLY CHALLENGING 949 00:33:06,062 --> 00:33:07,697 AND THEY'RE EXPENSIVE. 950 00:33:07,697 --> 00:33:09,565 SO I THINK THIS IS REALLY 951 00:33:09,565 --> 00:33:12,835 IMPORTANT TO SEE, SO I THINK 952 00:33:12,835 --> 00:33:15,471 THAT LEADS US TO SUPPLEMENTING 953 00:33:15,471 --> 00:33:19,075 SORT OF THE APPROPRIATE STANDARD 954 00:33:19,075 --> 00:33:20,677 OF CARE VIEW WITH BROADENING IT 955 00:33:20,677 --> 00:33:22,712 AND GIVING THIS POSITIVE 956 00:33:22,712 --> 00:33:23,446 JUSTIFICATION FOR WHEN IT IS 957 00:33:23,446 --> 00:33:25,982 JUSTIFIED TO USELESS THAN THE 958 00:33:25,982 --> 00:33:27,950 GLOBAL BEST STANDARD, AND THAT 959 00:33:27,950 --> 00:33:31,320 IS SOMETHING THAT ONE MIGHT CALL 960 00:33:31,320 --> 00:33:32,555 THE RESPONSIVENESS VIEW, WHICH 961 00:33:32,555 --> 00:33:33,856 SAYS THAT IT'S PERMISSIBLE TO 962 00:33:33,856 --> 00:33:34,924 PROVIDE LESS THAN THE GLOBAL 963 00:33:34,924 --> 00:33:36,025 BEST STANDARD OF CARE IF THE 964 00:33:36,025 --> 00:33:38,361 RESEARCH IS RESPONSIVE TO LOCAL 965 00:33:38,361 --> 00:33:40,963 HEALTH NEEDS AND PRIORITIES, IF 966 00:33:40,963 --> 00:33:42,699 IT'S SCIENTIFICALLY NECESSARY TO 967 00:33:42,699 --> 00:33:44,333 TEST AGAINST A LOWER STANDARD OF 968 00:33:44,333 --> 00:33:45,802 CARE, AND THEN THE LOCAL 969 00:33:45,802 --> 00:33:50,440 STANDARD OF CARE IS NOT UNDER 970 00:33:50,440 --> 00:33:52,875 THE KIND OF APPROPRIATE LOCAL 971 00:33:52,875 --> 00:33:54,010 STANDARD OF CARE THAT WE JUST 972 00:33:54,010 --> 00:33:55,178 TALKED ABOUT, THAT IS THE 973 00:33:55,178 --> 00:33:56,512 CONDITION THREE HERE. 974 00:33:56,512 --> 00:33:58,815 AND THIS IS BASICALLY THE 975 00:33:58,815 --> 00:34:00,349 DEFENSE THAT THE DIRECTORS OF 976 00:34:00,349 --> 00:34:03,086 THE NIH AND THE CDC GAVE OF 977 00:34:03,086 --> 00:34:03,519 THOSE TRIALS. 978 00:34:03,519 --> 00:34:05,288 THEY SAID THE MOST COMPELLING 979 00:34:05,288 --> 00:34:06,923 REASON TO USE A PLACEBO 980 00:34:06,923 --> 00:34:08,324 CONTROLLED STUDY IS THAT IT 981 00:34:08,324 --> 00:34:09,425 PROVIDES DEFINITIVE ANSWERS TO 982 00:34:09,425 --> 00:34:10,860 QUESTIONS ABOUT THE SAFETY AND 983 00:34:10,860 --> 00:34:12,361 VALUE OF AN INTERVENTION IN THE 984 00:34:12,361 --> 00:34:13,830 SETTING IN WHICH THE STUDY IS 985 00:34:13,830 --> 00:34:15,031 PERFORMED, AND THESE ANSWERS ARE 986 00:34:15,031 --> 00:34:16,232 THE POINT OF THE RESEARCH. 987 00:34:16,232 --> 00:34:17,633 WITHOUT CLEAR AND FIRM ANSWERS 988 00:34:17,633 --> 00:34:19,402 TO WHETHER AND IF SO HOW WELL AN 989 00:34:19,402 --> 00:34:20,703 INTERVENTION WORKS, IT IS 990 00:34:20,703 --> 00:34:22,238 IMPOSSIBLE FOR A COUNTRY TO MAKE 991 00:34:22,238 --> 00:34:24,207 A SOUND JUDGMENT ABOUT THE 992 00:34:24,207 --> 00:34:25,508 APPROPRIATENESS AND FINANCIAL 993 00:34:25,508 --> 00:34:26,609 FEASIBILITY OF PROVIDING THE 994 00:34:26,609 --> 00:34:32,415 INTERVENTION. 995 00:34:32,415 --> 00:34:33,616 SO LET ME JUST TALK YOU THROUGH 996 00:34:33,616 --> 00:34:35,451 HOW THIS VIEW MIGHT APPLY TO THE 997 00:34:35,451 --> 00:34:38,654 AZT TRIALS. 998 00:34:38,654 --> 00:34:40,523 SO THOSE TRIALS WERE RESPONSIVE 999 00:34:40,523 --> 00:34:41,924 TO LOCAL HEALTH NEEDS BECAUSE 1000 00:34:41,924 --> 00:34:43,459 OBVIOUSLY HIV TRANSMISSION WAS A 1001 00:34:43,459 --> 00:34:46,295 BIG PROBLEM IN MANY OF THOSE 1002 00:34:46,295 --> 00:34:46,629 COUNTRIES. 1003 00:34:46,629 --> 00:34:48,498 THEY WERE ALSO RESPONSIVE 1004 00:34:48,498 --> 00:34:50,233 BECAUSE THEY AIMED TO DEVELOP A 1005 00:34:50,233 --> 00:34:51,134 SHORT COURSE REGIMEN THAT WOULD 1006 00:34:51,134 --> 00:34:52,869 BE FEASIBLE TO IMPLEMENT IN 1007 00:34:52,869 --> 00:34:54,604 THOSE COUNTRIES, SO THEY WERE 1008 00:34:54,604 --> 00:34:58,007 TARGETED AT THOSE -- AT THAT 1009 00:34:58,007 --> 00:34:59,408 SETTING. 1010 00:34:59,408 --> 00:35:00,610 AND THEY ANSWERED A KEY QUESTION 1011 00:35:00,610 --> 00:35:03,913 FOR LOCAL POLICY MAKERS, WHICH 1012 00:35:03,913 --> 00:35:07,416 WAS -, IS A SHORT COURSE BETTER 1013 00:35:07,416 --> 00:35:07,950 THAN NOTHING? 1014 00:35:07,950 --> 00:35:09,619 IF SO, BY HOW MUCH, AND, 1015 00:35:09,619 --> 00:35:11,020 THEREFORE, IS IT WORTH INVESTING 1016 00:35:11,020 --> 00:35:12,221 OUR SCARCE RESOURCES? 1017 00:35:12,221 --> 00:35:14,724 REMEMBER, AGAIN, THAT HEALTHCARE 1018 00:35:14,724 --> 00:35:18,795 BUDGETS AT THE TIME WERE $100 OR 1019 00:35:18,795 --> 00:35:22,064 LESS A YEAR AND PERSON IN MANY 1020 00:35:22,064 --> 00:35:24,033 OR MOST LOW AND MIDDLE INCOME 1021 00:35:24,033 --> 00:35:25,902 COUNTRIES AT THE TIME. 1022 00:35:25,902 --> 00:35:28,204 SO THE RELEVANT QUESTION THERE 1023 00:35:28,204 --> 00:35:29,839 IS NOT HOW MUCH WORSE IS IT. 1024 00:35:29,839 --> 00:35:31,240 THEY ALREADY KNEW THAT THE SHORT 1025 00:35:31,240 --> 00:35:32,809 COURSE REGIMEN IS GOING TO BE 1026 00:35:32,809 --> 00:35:35,845 LESS EFFECTIVE, AND SO IT'S NOT 1027 00:35:35,845 --> 00:35:37,613 LIKE, YOU KNOW, IF WE INVEST IN 1028 00:35:37,613 --> 00:35:38,915 THIS, HOW MUCH WORSE IS IT. 1029 00:35:38,915 --> 00:35:40,316 THE QUESTION THAT LOCAL POLICY 1030 00:35:40,316 --> 00:35:44,153 MAKERS REALLY HAD IS -- ARE 1031 00:35:44,153 --> 00:35:49,091 THESE THAT I JUST READ OUT. 1032 00:35:49,091 --> 00:35:51,828 THE PLACEBO CONTROL IN THIS CASE 1033 00:35:51,828 --> 00:35:54,897 ALSO MEANT I WOULD ARGUE THE 1034 00:35:54,897 --> 00:35:57,400 SECOND CONDITION, BECAUSE IT WAS 1035 00:35:57,400 --> 00:35:59,035 SCIENTIFICALLY NECESSARY GIVEN 1036 00:35:59,035 --> 00:36:00,570 THAT THERE WAS VARIABLE 1037 00:36:00,570 --> 00:36:02,104 PERINATAL HIV TRANSMISSION AND 1038 00:36:02,104 --> 00:36:05,274 NOT ENOUGH DATA ABOUT HOW MUCH 1039 00:36:05,274 --> 00:36:08,678 TRANSMISSION WAS HAPPENING 1040 00:36:08,678 --> 00:36:09,679 WITHOUT INTERVENTION THAT WE 1041 00:36:09,679 --> 00:36:14,851 COULD HAVE MADE SOLID INFERE 1042 00:36:14,851 --> 00:36:16,853 INFERENCES. 1043 00:36:16,853 --> 00:36:18,955 AND RELATEDLY IT LED TO THE 1044 00:36:18,955 --> 00:36:22,758 TRIALS BEING MUCH MORE FEASIBLE 1045 00:36:22,758 --> 00:36:24,193 BECAUSE PLACEBO CONTROLLED TRIAL 1046 00:36:24,193 --> 00:36:26,262 IS THIS VERY POWERFUL AND 1047 00:36:26,262 --> 00:36:26,829 EFFICIENT DESIGN. 1048 00:36:26,829 --> 00:36:30,233 SO I THINK THE RESPONSIVENESS 1049 00:36:30,233 --> 00:36:34,036 VIEW BASICALLY IS SORT OF 1050 00:36:34,036 --> 00:36:34,804 ROUGHLY LIKE THE RIGHT VIEW. 1051 00:36:34,804 --> 00:36:35,905 I HAVE A COUPLE MODIFICATIONS 1052 00:36:35,905 --> 00:36:41,510 THAT I TALK ABOUT LATER TO IT. 1053 00:36:41,510 --> 00:36:42,578 BUT THIS KIND OF RESPONSE THEN 1054 00:36:42,578 --> 00:36:44,013 KICKED OFF THESE LARGER 1055 00:36:44,013 --> 00:36:47,283 QUESTIONS ABOUT WHAT -- BY THE 1056 00:36:47,283 --> 00:36:50,353 NIH AND CDC DIRECTORS, WHAT KIND 1057 00:36:50,353 --> 00:36:51,654 OF RESEARCH ACTUALLY WE SHOULD 1058 00:36:51,654 --> 00:36:53,756 BE CONDUCTING AND WHETHER -- IN 1059 00:36:53,756 --> 00:36:55,491 ORDER TO IMPROVE HEALTH IN 1060 00:36:55,491 --> 00:36:56,592 LOW/MIDDLE-INCOME COUNTRIES AND 1061 00:36:56,592 --> 00:36:57,827 REDUCE GLOBAL HEALTH INEQUITY 1062 00:36:57,827 --> 00:36:59,762 AND INDEED IF WE SHOULD BE 1063 00:36:59,762 --> 00:37:03,699 CONDUCTING RESEARCH AT ALL. 1064 00:37:03,699 --> 00:37:05,234 SO ONE CRITIQUE OF THE 1065 00:37:05,234 --> 00:37:05,868 RESPONSIVENESS VIEW IS THAT THE 1066 00:37:05,868 --> 00:37:07,203 RESEARCH IS NOT RESPONSIVE TO 1067 00:37:07,203 --> 00:37:08,404 LOCAL HEALTH NEEDS WHEN IT 1068 00:37:08,404 --> 00:37:09,605 DEVELOPS INTERVENTIONS THAT ARE 1069 00:37:09,605 --> 00:37:11,140 EXPECTED TO BE INFERIOR TO THE 1070 00:37:11,140 --> 00:37:14,277 GLOBAL BEST STANDARD OF CARE. 1071 00:37:14,277 --> 00:37:15,411 INSTEAD WHAT RESEARCHERS SHOULD 1072 00:37:15,411 --> 00:37:17,380 BE DOING IS THEY SHOULD DEVELOP 1073 00:37:17,380 --> 00:37:18,314 INTERVENTIONS THAT ARE EXPECTED 1074 00:37:18,314 --> 00:37:21,751 TO BE NON-INFERIOR TO OUR 1075 00:37:21,751 --> 00:37:22,752 EQUIVALENT WITH THE GLOBAL BEST 1076 00:37:22,752 --> 00:37:24,921 STANDARD OF CARE. 1077 00:37:24,921 --> 00:37:28,124 THERE IS ALSO HERE A QUOTE IN 1078 00:37:28,124 --> 00:37:30,026 THE DEBATE FROM ALL THE PAPERS 1079 00:37:30,026 --> 00:37:31,327 THAT I SHOWED INITIALLY THE 1080 00:37:31,327 --> 00:37:32,295 CONTROVERSY AROUND THE AZT 1081 00:37:32,295 --> 00:37:35,898 TRIALS WHERE THEY SAID THE 1082 00:37:35,898 --> 00:37:39,068 RESEARCHERS CONDUCTING THE PLA 1083 00:37:39,068 --> 00:37:40,403 PLACEBO CONTROLLED TRIALS 1084 00:37:40,403 --> 00:37:41,737 REPRESENT THE ONLY RESEARCH 1085 00:37:41,737 --> 00:37:43,572 DESIGN SO THE ANSWER TO THE 1086 00:37:43,572 --> 00:37:45,975 QUESTION IS A SHORTER REGIMEN 1087 00:37:45,975 --> 00:37:46,542 BETTER THAN NOTHING? 1088 00:37:46,542 --> 00:37:48,711 WE TAKE THE OPTIMISTIC VIEW THAT 1089 00:37:48,711 --> 00:37:53,215 THE FINDINGS OF ACTG076 AND 1090 00:37:53,215 --> 00:37:54,083 OTHER CLINICAL INFORMATION 1091 00:37:54,083 --> 00:37:55,484 RESEARCHES ARE QIELT CAPABLE OF 1092 00:37:55,484 --> 00:37:56,819 DESIGNING A SHORTER 1093 00:37:56,819 --> 00:37:57,920 ANTIRETROVIRAL REGIMEN THAT IS 1094 00:37:57,920 --> 00:38:00,556 APPROXIMATELY AS EFFECTIVE AS 1095 00:38:00,556 --> 00:38:01,657 THE 076 REGIMEN. 1096 00:38:01,657 --> 00:38:06,228 SO I THINK THAT CRITIQUE IS, OF 1097 00:38:06,228 --> 00:38:07,897 COURSE, CORRECT TO THE EXTENT 1098 00:38:07,897 --> 00:38:10,833 THAT WE CAN, WE SHOULD BE 1099 00:38:10,833 --> 00:38:14,437 CONDUCTING RESEARCH THAT AIMS TO 1100 00:38:14,437 --> 00:38:16,272 BE OR DEVELOPING INTERVENTIONS 1101 00:38:16,272 --> 00:38:18,574 INCLUDING FOR LOW/MIDDLE-INCOME 1102 00:38:18,574 --> 00:38:20,676 COUNTRIES THAT ARE JUST AS GOOD 1103 00:38:20,676 --> 00:38:23,079 OR BETTER THAN OTHER 1104 00:38:23,079 --> 00:38:24,847 INTERVENTIONS, THAT'S THE 1105 00:38:24,847 --> 00:38:25,514 ESSENCE OF PROGRESS. 1106 00:38:25,514 --> 00:38:26,716 BUT I ALSO THINK THAT IF YOU'RE 1107 00:38:26,716 --> 00:38:30,319 TRYING TO GET SOMETHING THAT 1108 00:38:30,319 --> 00:38:33,055 ISES EASIER, SIMPLER TO IMPLEMET 1109 00:38:33,055 --> 00:38:36,258 IN SETTINGS THAT HAVE FEWER 1110 00:38:36,258 --> 00:38:37,994 RESOURCES IN LOW/MIDDLE-INCOME 1111 00:38:37,994 --> 00:38:40,830 COUNTRIES AND THAT IS ALSO LESS 1112 00:38:40,830 --> 00:38:43,032 EXPENSIVE, THAT CAN BE A TALL 1113 00:38:43,032 --> 00:38:44,900 ORDER, SO IT CAN BE -- YOU KNOW, 1114 00:38:44,900 --> 00:38:46,435 YOU SHOULD STRIVE FOR IT, BUT IT 1115 00:38:46,435 --> 00:38:51,807 MAY NOT ALWAYS BE POSSIBLE. 1116 00:38:51,807 --> 00:38:53,576 I ALSO THINK THAT IT RAISES SORT 1117 00:38:53,576 --> 00:38:55,211 OF -- YOU KNOW, IF THAT'S WHAT 1118 00:38:55,211 --> 00:38:57,279 YOUR GOAL IS, YOU'RE TRYING TO 1119 00:38:57,279 --> 00:38:59,248 FIND INTERVENTIONS AND TRYING TO 1120 00:38:59,248 --> 00:39:00,016 DEMONSTRATE THAT THEY'RE JUST AS 1121 00:39:00,016 --> 00:39:01,650 GOOD AS WHAT WE ALREADY HAVE. 1122 00:39:01,650 --> 00:39:03,319 THEY'RE JUST SIMPLER AND 1123 00:39:03,319 --> 00:39:03,552 CHEAPER. 1124 00:39:03,552 --> 00:39:04,787 THAT RAISES THESE QUESTIONS 1125 00:39:04,787 --> 00:39:06,489 ABOUT THE FEASIBILITY OF THE 1126 00:39:06,489 --> 00:39:08,691 TRIAL, BECAUSE THOSE ACTIVE 1127 00:39:08,691 --> 00:39:12,294 COMPARATOR TRIALS WERE TESTING A 1128 00:39:12,294 --> 00:39:14,063 NEW INTERVENTION AGAINST THE 1129 00:39:14,063 --> 00:39:15,164 EXISTING ONES REQUIRE LARGE 1130 00:39:15,164 --> 00:39:19,301 SAMPLE SIZES. 1131 00:39:19,301 --> 00:39:22,705 SO THAT CAN SOMETIMES MAKE IT 1132 00:39:22,705 --> 00:39:23,906 INFEASIBLE, THE COSTS ASSOCIATED 1133 00:39:23,906 --> 00:39:25,674 WITH THAT AND THE LOGISTICAL 1134 00:39:25,674 --> 00:39:27,109 EFFORT MAKE IT INFEASIBLE TO 1135 00:39:27,109 --> 00:39:28,077 CONDUCT THOSE TRIALS. 1136 00:39:28,077 --> 00:39:32,948 SO I THINK WE SHOULD -- THIS IS 1137 00:39:32,948 --> 00:39:33,883 DEFINITELY SOMETHING WE SHOULD 1138 00:39:33,883 --> 00:39:36,085 TRY DO, BUT I THINK ALSO THAT 1139 00:39:36,085 --> 00:39:38,254 DEVELOPING SECOND-BEST 1140 00:39:38,254 --> 00:39:40,456 INTERVENTIONS IS KIND OF A TERM 1141 00:39:40,456 --> 00:39:41,590 ONE MIGHT USE, THINGS THAT ARE 1142 00:39:41,590 --> 00:39:42,892 STILL GOOD BUT NOT AS GOOD AS 1143 00:39:42,892 --> 00:39:44,527 WHAT WE ALREADY HAVE, CAN BE KEY 1144 00:39:44,527 --> 00:39:45,928 TO IMPROVING HEALTH IN 1145 00:39:45,928 --> 00:39:47,930 LOW/MIDDLE-INCOME COUNTRIES, AND 1146 00:39:47,930 --> 00:39:51,434 THEREBY REDUCING GLOBAL HEALTH 1147 00:39:51,434 --> 00:39:52,068 INEQUITIES. 1148 00:39:52,068 --> 00:39:54,603 ANOTHER CRITIQUE OF THE VIEW 1149 00:39:54,603 --> 00:39:55,805 THAT'S SORT OF THIS BROADER 1150 00:39:55,805 --> 00:39:57,139 NATURE ABOUT WHAT RESEARCH 1151 00:39:57,139 --> 00:39:58,441 SHOULD WE CONDUCT OR SHOULD WE 1152 00:39:58,441 --> 00:40:00,476 ACTUALLY BE CONDUCTING RESEARCH 1153 00:40:00,476 --> 00:40:01,844 AT ALL IS THIS ONE. 1154 00:40:01,844 --> 00:40:03,913 IT SAYS THAT DEVELOPING SIMPLER, 1155 00:40:03,913 --> 00:40:05,147 CHEAPER AND INFERIOR 1156 00:40:05,147 --> 00:40:06,148 INTERVENTIONS IS NOT THE RIGHT 1157 00:40:06,148 --> 00:40:07,650 APPROACH TO IMPROVING HEALTH IN 1158 00:40:07,650 --> 00:40:08,751 LOW/MIDDLE-INCOME COUNTRIES AND 1159 00:40:08,751 --> 00:40:10,619 REDUCING GLOBAL HEALTH 1160 00:40:10,619 --> 00:40:11,253 INEQUITIES. 1161 00:40:11,253 --> 00:40:13,055 INSTEAD WE SHOULD WORK ON 1162 00:40:13,055 --> 00:40:15,224 LOWERING DRUG PRICES, INVEST IN 1163 00:40:15,224 --> 00:40:16,325 HEALTHCARE INFRASTRUCTURE OR 1164 00:40:16,325 --> 00:40:17,093 HEALTH INFRASTRUCTURE IN 1165 00:40:17,093 --> 00:40:18,961 LOW/MIDDLE-INCOME COUNTRIES, 1166 00:40:18,961 --> 00:40:21,363 DEVELOP MORE EQUITABLE WAYS OF 1167 00:40:21,363 --> 00:40:22,898 INCENTIVIZING INNOVATION SO THAT 1168 00:40:22,898 --> 00:40:27,736 MORE INNOVATION HAPPENS THAT'S 1169 00:40:27,736 --> 00:40:28,504 TARGETED AT LOW/MIDDLE-INCOME 1170 00:40:28,504 --> 00:40:33,209 COUNTRIES AND SO ON. 1171 00:40:33,209 --> 00:40:34,176 AGAIN, IN THE INTEREST OF TIME 1172 00:40:34,176 --> 00:40:35,277 I WILL SKIP THIS QUOTE BUT YOU 1173 00:40:35,277 --> 00:40:36,612 CAN SEE IT HERE AND REVIEW IT 1174 00:40:36,612 --> 00:40:37,713 WHEN YOU LOOK AT THE SLIDES THAT 1175 00:40:37,713 --> 00:40:41,650 ARE AVAILABLE TO YOU. 1176 00:40:41,650 --> 00:40:43,719 AGAIN I THINK THIS IS A GREAT 1177 00:40:43,719 --> 00:40:47,456 SORT OF POINT TO MAKE. 1178 00:40:47,456 --> 00:40:51,293 SOMETIMES RESEARCH IS NOT 1179 00:40:51,293 --> 00:40:52,194 PROVIDING ANSWERS TO QUESTIONS 1180 00:40:52,194 --> 00:40:54,130 AND WE SHOULD DEFINITELY WORK TO 1181 00:40:54,130 --> 00:40:54,897 IMPROVE HEALTH IN 1182 00:40:54,897 --> 00:40:55,998 LOW/MIDDLE-INCOME COUNTRIES AND 1183 00:40:55,998 --> 00:40:57,967 REDUCE GLOBAL HEALTH INEQUITIES 1184 00:40:57,967 --> 00:40:59,401 BEYOND CONDUCTING RESEARCH. 1185 00:40:59,401 --> 00:41:02,471 BUT I THINK IT SHOULD NOT 1186 00:41:02,471 --> 00:41:05,641 EXCLUDE OR THE TWO ARE NOT SORT 1187 00:41:05,641 --> 00:41:07,243 OF MUTUALLY EXCLUSIVE, BUT THE 1188 00:41:07,243 --> 00:41:09,578 TWO CAN GO IN TANDEM, AND AGAIN, 1189 00:41:09,578 --> 00:41:11,013 I THINK DEVELOPING THOSE 1190 00:41:11,013 --> 00:41:14,083 SECOND-BEST INTERVENTIONS THAT 1191 00:41:14,083 --> 00:41:15,484 ARE FEASIBLE TO IMPLEMENT IN THE 1192 00:41:15,484 --> 00:41:18,254 SHORTER TERM CAN BE -- CAN LEAD 1193 00:41:18,254 --> 00:41:20,756 TO REALLY IMPORTANT HEALTH 1194 00:41:20,756 --> 00:41:22,625 BENEFITS AND REDUCTIONS IN 1195 00:41:22,625 --> 00:41:23,826 GLOBAL HEALTH INEQUITIES. 1196 00:41:23,826 --> 00:41:25,361 SO IF YOU DON'T CONDUCT THE 1197 00:41:25,361 --> 00:41:28,097 RESEARCH AND YOU WAIT UNTIL DRUG 1198 00:41:28,097 --> 00:41:32,268 PRICES HAVE COME DOWN AND, YOU 1199 00:41:32,268 --> 00:41:32,935 KNOW, HEALTHCARE INFRASTRUCTURE 1200 00:41:32,935 --> 00:41:34,670 IS OTHERWISE SCALED UP AND SO 1201 00:41:34,670 --> 00:41:39,308 ON, THAT MEANS TIME WILL PASS, 1202 00:41:39,308 --> 00:41:40,943 THAT MEANS FEWER PEOPLE -- THE 1203 00:41:40,943 --> 00:41:43,012 MORE TIME IT TAKES FOR 1204 00:41:43,012 --> 00:41:45,314 INTERVENTIONS TO BE IMPLEMENTED 1205 00:41:45,314 --> 00:41:46,549 IN PRACTICE, THE MORE PEOPLE 1206 00:41:46,549 --> 00:41:48,217 WITH SUFFER OR POTENTIALLY DIE 1207 00:41:48,217 --> 00:41:51,020 IN THE MEANTIME. 1208 00:41:51,020 --> 00:41:53,222 SO THESE SECOND-BEST 1209 00:41:53,222 --> 00:41:54,123 INTERVENTIONS CAN REALLY HELP TO 1210 00:41:54,123 --> 00:41:55,524 DO SOMETHING IN THE HERE AND NOW 1211 00:41:55,524 --> 00:41:57,593 WHILE WE'RE WORKING TO IMPROVE 1212 00:41:57,593 --> 00:42:02,965 THINGS OTHERWISE. 1213 00:42:02,965 --> 00:42:03,966 IN CONCLUSION, I THINK THE 1214 00:42:03,966 --> 00:42:05,634 STANDARD OF CARE DEBATE REVEALS 1215 00:42:05,634 --> 00:42:06,569 DIFFERENT POSITIONS ON WHAT IS 1216 00:42:06,569 --> 00:42:08,571 OWED TO PARTICIPANTS IN 1217 00:42:08,571 --> 00:42:10,206 INTERNATIONAL COLLABORATIVE 1218 00:42:10,206 --> 00:42:10,973 RESEARCH IN LOW/MIDDLE-INCOME 1219 00:42:10,973 --> 00:42:11,240 COUNTRIES. 1220 00:42:11,240 --> 00:42:13,442 THAT WAS REALLY THE STARTING 1221 00:42:13,442 --> 00:42:14,843 POINT OF THAT DEBATE, BUT WHEN 1222 00:42:14,843 --> 00:42:17,112 YOU LOOK MORE CLOSELY TO HOW IT 1223 00:42:17,112 --> 00:42:19,748 UNFOLDED, IT ACTUALLY ALSO 1224 00:42:19,748 --> 00:42:22,251 REVEALS DIFFERENT POSITIONS ON 1225 00:42:22,251 --> 00:42:23,919 WHAT RESEARCH SHOULD BE 1226 00:42:23,919 --> 00:42:25,354 CONDUCTED AND HOW IT SHOULD BE 1227 00:42:25,354 --> 00:42:26,789 CONDUCTED AND WHETHER WE SHOULD 1228 00:42:26,789 --> 00:42:29,992 CONDUCT RESEARCH AT ALL IN ORDER 1229 00:42:29,992 --> 00:42:31,393 TO IMPROVE HEALTH IN 1230 00:42:31,393 --> 00:42:33,495 LOW/MIDDLE-INCOME COUNTRIES AND 1231 00:42:33,495 --> 00:42:38,167 REDUCE GLOBAL HEALTH INEQUITIES. 1232 00:42:38,167 --> 00:42:40,636 THE RESPONSIVENESS VIEW WITH TWO 1233 00:42:40,636 --> 00:42:42,805 SMALL MODIFICATIONS THAT I'LL 1234 00:42:42,805 --> 00:42:44,440 PROJECT IN JUST A MINUTE IS IN 1235 00:42:44,440 --> 00:42:46,742 MY VIEW THE MOST COMPELLING IN 1236 00:42:46,742 --> 00:42:48,210 THESE POSITIONS AND I'LL TRY TO 1237 00:42:48,210 --> 00:42:49,511 EXPLAIN WHY THIS IS THE CASE. 1238 00:42:49,511 --> 00:42:51,247 I'M JUST PROJECTING IT HERE 1239 00:42:51,247 --> 00:42:53,282 AGAIN TO REMIND YOU OF WHAT THIS 1240 00:42:53,282 --> 00:42:54,783 VIEW IS, AND I JUST WANT TO SAY 1241 00:42:54,783 --> 00:42:57,186 THAT I THINK THERE ARE TWO 1242 00:42:57,186 --> 00:42:59,722 MODIFICATIONS, ONE IS THAT I 1243 00:42:59,722 --> 00:43:00,689 THINK COMMUNITY ENGAGEMENT ABOUT 1244 00:43:00,689 --> 00:43:03,092 THAT KIND OF -- THOSE KINDS OF 1245 00:43:03,092 --> 00:43:04,193 DECISIONS ABOUT WHETHER THE 1246 00:43:04,193 --> 00:43:05,761 RESEARCH IS RESPONSIVE TO LOCAL 1247 00:43:05,761 --> 00:43:09,665 HEALTH NEEDS AND PRIORITIES, IN 1248 00:43:09,665 --> 00:43:12,401 PARTICULAR, AND WHAT THE SORT OF 1249 00:43:12,401 --> 00:43:13,736 APPROPRIATE LOCAL STANDARD OF 1250 00:43:13,736 --> 00:43:15,638 CARE IS, IS REALLY IMPORTANT TO 1251 00:43:15,638 --> 00:43:18,140 GET AS MUCH INPUT AS POSSIBLE 1252 00:43:18,140 --> 00:43:19,008 FROM THE LOCAL COMMUNITY, SO I 1253 00:43:19,008 --> 00:43:20,442 THINK COMMUNITY ENGAGEMENT WOULD 1254 00:43:20,442 --> 00:43:22,911 BE A CONDITION I WOULD ADD AND 1255 00:43:22,911 --> 00:43:24,280 DORCAS KAMUYA IS GOING TO SPEAK 1256 00:43:24,280 --> 00:43:25,180 MORE ABOUT THIS. 1257 00:43:25,180 --> 00:43:27,149 I ALSO THINK THERE ARE SOME 1258 00:43:27,149 --> 00:43:27,916 CIRCUMSTANCES THAT I'D BE HAPPY 1259 00:43:27,916 --> 00:43:31,420 TO TALK ABOUT DURING THE Q & A 1260 00:43:31,420 --> 00:43:35,691 WHERE IT MIGHT BE ACCEPTABLE TO 1261 00:43:35,691 --> 00:43:36,558 WITHHOLD THE APPROPRIATE LOCAL 1262 00:43:36,558 --> 00:43:37,026 STANDARD OF CARE. 1263 00:43:37,026 --> 00:43:38,794 SO I THINK IT SHOULD BE A STRONG 1264 00:43:38,794 --> 00:43:44,266 DEFAULT TO TEST AGAINST WHAT'S 1265 00:43:44,266 --> 00:43:46,802 THE DE JURE STANDARD OF CARE BUT 1266 00:43:46,802 --> 00:43:48,637 I THINK THERE ARE SITUATIONS 1267 00:43:48,637 --> 00:43:49,638 WHERE IT'S ACCEPTABLE TO 1268 00:43:49,638 --> 00:43:49,972 WITHHOLD IT. 1269 00:43:49,972 --> 00:43:51,006 SO WITH THAT, I THANK YOU SO 1270 00:43:51,006 --> 00:43:51,206 MUCH. 1271 00:43:51,206 --> 00:43:52,975 [APPLAUSE] 1272 00:43:52,975 --> 00:43:57,112 >> THANK YOU, ANNETTE, AND WHY 1273 00:43:57,112 --> 00:43:58,847 DON'T YOU STAY THERE BECAUSE 1274 00:43:58,847 --> 00:44:00,949 YOU'LL BE MIC'D THERE. 1275 00:44:00,949 --> 00:44:02,384 SO WE HAVE ABOUT 10 MINUTES FOR 1276 00:44:02,384 --> 00:44:03,052 QUESTIONS. 1277 00:44:03,052 --> 00:44:05,487 I'M HOPING MARCOS IS GOING TO BE 1278 00:44:05,487 --> 00:44:07,356 WALKING OVER TO ASK THE 1279 00:44:07,356 --> 00:44:13,996 QUESTIONS ABOUT THIS TOPIC. 1280 00:44:13,996 --> 00:44:14,663 OH, GREAT. 1281 00:44:14,663 --> 00:44:15,864 SO CHLOE HAS A QUESTION. 1282 00:44:15,864 --> 00:44:17,866 LET'S START WITH CHLOE, AND THEN 1283 00:44:17,866 --> 00:44:20,903 I HAVE ONE FROM OUR VIDEO 1284 00:44:20,903 --> 00:44:21,403 VIEWERS. 1285 00:44:21,403 --> 00:44:22,571 >> HI, ANNETTE. 1286 00:44:22,571 --> 00:44:23,105 THANKS FOR THAT. 1287 00:44:23,105 --> 00:44:25,207 THAT WAS SUPER INTERESTING. 1288 00:44:25,207 --> 00:44:27,943 I WAS JUST WONDERING IF THERE'S 1289 00:44:27,943 --> 00:44:30,679 MUCH DISCUSSION ABOUT KIND OF 1290 00:44:30,679 --> 00:44:35,150 FURTHER COMPROMISES WE CAN HAVE 1291 00:44:35,150 --> 00:44:36,251 IN THESE SITUATIONS. 1292 00:44:36,251 --> 00:44:37,453 LIKE FOR EXAMPLE, DO WE REALLY 1293 00:44:37,453 --> 00:44:39,788 ALWAYS NEED TO DO A RANDOMIZED 1294 00:44:39,788 --> 00:44:41,290 CONTROL TRIAL? 1295 00:44:41,290 --> 00:44:43,826 ARE THERE ANY OTHER TRIAL 1296 00:44:43,826 --> 00:44:45,561 DESIGNS LIKE OR BIOSTATISTICAL 1297 00:44:45,561 --> 00:44:46,995 ANALYSES THAT COULD KIND OF 1298 00:44:46,995 --> 00:44:48,197 MITIGATE THESE ISSUES? 1299 00:44:48,197 --> 00:44:51,367 I KNOW SOMETIMES WE DO SOMETHING 1300 00:44:51,367 --> 00:44:55,003 LIKE STEP WISE TRIALS WHERE 1301 00:44:55,003 --> 00:44:56,205 EVERYONE GETS THE INTERVENTION 1302 00:44:56,205 --> 00:44:57,306 EVENTUALLY. 1303 00:44:57,306 --> 00:44:58,507 OBVIOUSLY THAT CAN'T HAPPEN WITH 1304 00:44:58,507 --> 00:44:59,908 A PREGNANCY BECAUSE THERE'S ONLY 1305 00:44:59,908 --> 00:45:00,476 ONE EVENT. 1306 00:45:00,476 --> 00:45:02,144 THEN MY OTHER QUESTION IS, DID 1307 00:45:02,144 --> 00:45:05,647 ANYONE EVER CONSIDER, I GUESS, 1308 00:45:05,647 --> 00:45:07,916 TREATING THE CHILDREN WHO 1309 00:45:07,916 --> 00:45:11,086 DEVELOPED HIV INVOLVED IN THE 1310 00:45:11,086 --> 00:45:12,421 TRIAL, AND SO LIKE WOULD THAT 1311 00:45:12,421 --> 00:45:15,724 HAVE MITIGATED SOME ISSUES? 1312 00:45:15,724 --> 00:45:17,126 I KNOW IT WOULD HAVE BEEN 1313 00:45:17,126 --> 00:45:19,995 EXPENSIVE TO TREAT THE CHILDREN 1314 00:45:19,995 --> 00:45:20,863 EFFECTIVE BUT IN THE GRAND 1315 00:45:20,863 --> 00:45:22,164 SCHEME OF THINGS, DO YOU THINK 1316 00:45:22,164 --> 00:45:23,198 THAT WOULD HAVE MITIGATED SOME 1317 00:45:23,198 --> 00:45:23,866 OF THE PROBLEMS? 1318 00:45:23,866 --> 00:45:24,700 >> GREAT QUESTIONS. 1319 00:45:24,700 --> 00:45:26,702 THANKS SO MUCH. 1320 00:45:26,702 --> 00:45:29,471 SO LET'S TAKE EACH IN TURN. 1321 00:45:29,471 --> 00:45:33,609 THERE DEFINITELY IS A LOT OF 1322 00:45:33,609 --> 00:45:35,911 DISCUSSION AROUND WHAT I MIGHT 1323 00:45:35,911 --> 00:45:38,313 SUMMARIZE AS ALTERNATIVE TRIAL 1324 00:45:38,313 --> 00:45:40,082 DESIGNS, ALTERNATIVES TO THE 1325 00:45:40,082 --> 00:45:41,183 ACT, WHICH SOMETIMES I THINK IS, 1326 00:45:41,183 --> 00:45:45,988 YOU KNOW, EMPHASIZED AS TO THE 1327 00:45:45,988 --> 00:45:47,589 GOLD STANDARD, THIS IS WHAT WE 1328 00:45:47,589 --> 00:45:48,524 ALWAYS SHOULD BE DOING. 1329 00:45:48,524 --> 00:45:50,292 I THINK WE SHOULD BE MUCH MORE 1330 00:45:50,292 --> 00:45:54,163 SENSITIVE TO WHAT IS THE GIVEN 1331 00:45:54,163 --> 00:45:55,597 RESEARCH QUESTION, WHAT ARE THE 1332 00:45:55,597 --> 00:45:56,465 METHODS APPROPRIATE FOR 1333 00:45:56,465 --> 00:45:57,666 ANSWERING THIS IN THE CONTEXT IN 1334 00:45:57,666 --> 00:46:00,102 WHICH THE TRIAL IS BEING 1335 00:46:00,102 --> 00:46:00,636 CONDUCTED. 1336 00:46:00,636 --> 00:46:02,404 SO I THINK BROADENING THE ARRAY 1337 00:46:02,404 --> 00:46:04,807 OF METHODS IS REALLY IMPORTANT. 1338 00:46:04,807 --> 00:46:07,242 AND YOU MENTIONED ONE DESIGN, 1339 00:46:07,242 --> 00:46:09,044 THE STEP WEDGE DESIGN, WHICH IS 1340 00:46:09,044 --> 00:46:12,047 ONE OF THESE THAT HAS GOTTEN A 1341 00:46:12,047 --> 00:46:14,883 LOT OF AIR TIME. 1342 00:46:14,883 --> 00:46:18,387 THERE ARE OTHERS TOO THAT -- YOU 1343 00:46:18,387 --> 00:46:19,721 KNOW, IN THE RING VACCINATION 1344 00:46:19,721 --> 00:46:21,457 DESIGN, FOR EXAMPLE, DURING THE 1345 00:46:21,457 --> 00:46:22,791 EBOLA EPIDEMIC. 1346 00:46:22,791 --> 00:46:24,660 I THINK IT IS -- OR IN GENERAL 1347 00:46:24,660 --> 00:46:26,395 CLUSTER RANDOMIZED CONTROL 1348 00:46:26,395 --> 00:46:27,696 DESIGNS, WHERE NOT INDIVIDUALS 1349 00:46:27,696 --> 00:46:29,364 BUT CLASSES OF PEOPLE ARE BEING 1350 00:46:29,364 --> 00:46:29,698 RANDOMIZED. 1351 00:46:29,698 --> 00:46:32,334 I THINK IT IS IMPORTANT TO SEE 1352 00:46:32,334 --> 00:46:34,670 WHAT THE METHODOLOGICAL 1353 00:46:34,670 --> 00:46:36,638 SHORTCOMINGS ARE OF THOSE, AND 1354 00:46:36,638 --> 00:46:38,173 SEE WHETHER, FOR THE GIVEN 1355 00:46:38,173 --> 00:46:39,908 RESEARCH QUESTION, IT IS 1356 00:46:39,908 --> 00:46:41,677 APPROPRIATE TO USE THAT DESIGN 1357 00:46:41,677 --> 00:46:43,545 IN VIEW OF SOME OF THESE 1358 00:46:43,545 --> 00:46:44,079 SHORTCOMINGS. 1359 00:46:44,079 --> 00:46:46,048 AND, OF COURSE, I WILL SAY, YOU 1360 00:46:46,048 --> 00:46:48,183 KNOW, RCTs ALSO HAVE 1361 00:46:48,183 --> 00:46:48,951 SHORTCOMINGS, DEPENDING ON HOW 1362 00:46:48,951 --> 00:46:49,718 YOU LOOK AT IT. 1363 00:46:49,718 --> 00:46:55,157 SO I THINK BASICALLY GOING 1364 00:46:55,157 --> 00:46:57,392 AGAINST THIS IDEA THAT RCTs 1365 00:46:57,392 --> 00:46:58,794 ARE ALWAYS THE GOLD STANDARD IS 1366 00:46:58,794 --> 00:47:00,128 REALLY GOOD BUT IT NEEDS A LOT 1367 00:47:00,128 --> 00:47:01,463 OF NUANCE IN TERMS OF COMPARING 1368 00:47:01,463 --> 00:47:02,231 THE ALTERNATIVES. 1369 00:47:02,231 --> 00:47:04,533 WITH RESPECT TO YOUR SECOND 1370 00:47:04,533 --> 00:47:07,202 QUESTION, THE FACTUAL PART, I 1371 00:47:07,202 --> 00:47:09,938 DON'T KNOW, SO I DON'T KNOW IF 1372 00:47:09,938 --> 00:47:12,708 PEOPLE CONSIDERED TREATING THE 1373 00:47:12,708 --> 00:47:15,544 INFANTS, YOU KNOW, THAT DID GET 1374 00:47:15,544 --> 00:47:16,612 HIV-INFECTED. 1375 00:47:16,612 --> 00:47:19,014 DO YOU, HOLLY, DURING THE AZT 1376 00:47:19,014 --> 00:47:19,214 TRIAL? 1377 00:47:19,214 --> 00:47:19,815 >> I DON'T. 1378 00:47:19,815 --> 00:47:21,250 >> SO THAT IS SOMETHING I'M SURE 1379 00:47:21,250 --> 00:47:21,884 CAN BE FOUND OUT. 1380 00:47:21,884 --> 00:47:24,186 I DON'T KNOW IT FOR NOW. 1381 00:47:24,186 --> 00:47:26,755 I DO THINK THAT COULD HAVE 1382 00:47:26,755 --> 00:47:30,459 ALLEVIATED SOME OF THE CONCERNS, 1383 00:47:30,459 --> 00:47:31,894 BUT WOULD HAVE ADDRESSED 1384 00:47:31,894 --> 00:47:33,629 OTHER -- OR RAISED OTHER 1385 00:47:33,629 --> 00:47:36,632 CONCERNS, WHICH IS AT THE TIME 1386 00:47:36,632 --> 00:47:39,468 THAT WOULD HAVE BEEN EXTREMELY 1387 00:47:39,468 --> 00:47:42,204 INVOLVED, NOT JUST EXPENSIVE 1388 00:47:42,204 --> 00:47:46,275 BECAUSE THE PRICES FOR HIV, 1389 00:47:46,275 --> 00:47:47,242 ANTIRETROVIRAL TREATMENT, WERE 1390 00:47:47,242 --> 00:47:48,243 PRETTY HIGH AT THE TIME AND YOU 1391 00:47:48,243 --> 00:47:50,212 WOULD BE COMMITTING TO LIFELONG 1392 00:47:50,212 --> 00:47:51,446 TREATMENT, BUT THE 1393 00:47:51,446 --> 00:47:52,047 INFRASTRUCTURE WASN'T THERE, 1394 00:47:52,047 --> 00:47:53,649 BECAUSE THE TREATMENT IS NOT -- 1395 00:47:53,649 --> 00:47:55,951 YOU CAN JUST NOT SEND, YOU KNOW, 1396 00:47:55,951 --> 00:47:58,520 A BOX OF PILLS, YOU KNOW, ONCE A 1397 00:47:58,520 --> 00:47:59,221 MONTH. 1398 00:47:59,221 --> 00:48:00,422 PEOPLE, LIKE, NEED THE CARE TO 1399 00:48:00,422 --> 00:48:01,890 GO ALONG WITH IT, TO MAKE SURE 1400 00:48:01,890 --> 00:48:03,292 THAT YOU'RE MANAGING POSSIBLE 1401 00:48:03,292 --> 00:48:06,828 SIDE EFFECTS AND SO ON, AND I 1402 00:48:06,828 --> 00:48:07,963 THINK THAT COULD HAVE BEEN 1403 00:48:07,963 --> 00:48:09,598 PRETTY HARD TO PULL OFF IN A 1404 00:48:09,598 --> 00:48:11,233 RESPONSIBLE WAY AND REALLY 1405 00:48:11,233 --> 00:48:13,669 HIGHLIGHTS THE QUESTION THAT I 1406 00:48:13,669 --> 00:48:15,404 ONLY TOUCHED ON AND WILL NOT SAY 1407 00:48:15,404 --> 00:48:17,272 A WHOLE LOT MORE ABOUT, YOU 1408 00:48:17,272 --> 00:48:19,374 KNOW, WHAT IS SORT OF THE CORE 1409 00:48:19,374 --> 00:48:20,709 OBLIGATIONS OF THE RESEARCHERS, 1410 00:48:20,709 --> 00:48:23,745 AND TO WHAT EXTENT IS ADDRESSING 1411 00:48:23,745 --> 00:48:28,050 SORT OF OTHER NEEDS IN THE LONG 1412 00:48:28,050 --> 00:48:29,518 TERM, AND/OR OTHER NEEDS THEY 1413 00:48:29,518 --> 00:48:31,820 FIND AS PART OF THE RESEARCH, 1414 00:48:31,820 --> 00:48:33,989 ESPECIALLY WHEN THOSE ARE LONG 1415 00:48:33,989 --> 00:48:36,525 TERM NEEDS. 1416 00:48:36,525 --> 00:48:40,929 JOE WILL ACTUALLY SPEAK ABOUT 1417 00:48:40,929 --> 00:48:42,564 POST-TRIAL STUDY AND 1418 00:48:42,564 --> 00:48:42,898 OBLIGATIONS. 1419 00:48:42,898 --> 00:48:44,533 PROBABLY IT WOULD HAVE MITIGATED 1420 00:48:44,533 --> 00:48:45,534 SOME OF THE CONCERNS BUT 1421 00:48:45,534 --> 00:48:46,868 PROBABLY WOULD RAISE OTHERS AND 1422 00:48:46,868 --> 00:48:48,003 WOULD NOT HAVE BEEN FEASIBLE. 1423 00:48:48,003 --> 00:48:49,905 >> I'LL JUST ADD, AT THE TIME, 1424 00:48:49,905 --> 00:48:51,373 ONE ADDITIONAL CRITIQUE RELATED 1425 00:48:51,373 --> 00:48:56,311 TO THIS WAS, WELL, WHAT ABOUT 1426 00:48:56,311 --> 00:48:58,714 THE PREGNANT PEOPLE WHO THEN 1427 00:48:58,714 --> 00:49:01,717 HAVE CHILDREN, ARE YOU GOING TO 1428 00:49:01,717 --> 00:49:04,419 GIVE THEM AZT IN THE LONG RUN? 1429 00:49:04,419 --> 00:49:06,622 AND SO I GUESS TO SAY THERE ARE 1430 00:49:06,622 --> 00:49:09,257 LOTS OF QUESTIONS ABOUT THE 1431 00:49:09,257 --> 00:49:14,096 TRIAL ITSELF, AND THEN WHAT THE 1432 00:49:14,096 --> 00:49:15,397 EXPECTED PLAN, HOW YOU PLAN FOR 1433 00:49:15,397 --> 00:49:17,199 THAT, WHO'S GOING TO HAVE 1434 00:49:17,199 --> 00:49:18,634 ACCESS, ARE ALL ALSO REALLY 1435 00:49:18,634 --> 00:49:22,137 IMPORTANT QUESTIONS BEYOND JUST, 1436 00:49:22,137 --> 00:49:23,672 QUOTE-UNQUOTE, ALL OF THE 1437 00:49:23,672 --> 00:49:24,573 CHALLENGES THAT ANNETTE 1438 00:49:24,573 --> 00:49:26,875 DESCRIBED. 1439 00:49:26,875 --> 00:49:29,845 CAROLINE. 1440 00:49:29,845 --> 00:49:30,812 >> THANK YOU FOR THIS 1441 00:49:30,812 --> 00:49:31,146 PRESENTATION. 1442 00:49:31,146 --> 00:49:32,047 IT WAS REALLY, REALLY 1443 00:49:32,047 --> 00:49:32,447 INTERESTING. 1444 00:49:32,447 --> 00:49:35,684 I THINK WHAT I'VE BEEN THINKING 1445 00:49:35,684 --> 00:49:36,652 ABOUT IS THAT THIS QUESTION 1446 00:49:36,652 --> 00:49:40,689 WOULD ALWAYS ARISE WHEN YOU'RE 1447 00:49:40,689 --> 00:49:41,657 THINKING ABOUT A TRADEOFF 1448 00:49:41,657 --> 00:49:43,358 BETWEEN LIKE AN UNKNOWN DECREASE 1449 00:49:43,358 --> 00:49:46,061 IN EFFICACY AND AN UNKNOW 1450 00:49:46,061 --> 00:49:49,131 INCREASE IN DELIVERABILITY IN A 1451 00:49:49,131 --> 00:49:52,334 LOW/MIDDLE-INCOME COUNTRY. 1452 00:49:52,334 --> 00:49:53,669 I COULD SEE, FOR EXAMPLE, LIKE 1453 00:49:53,669 --> 00:49:56,938 IN THIS CASE, IT IS 1454 00:49:56,938 --> 00:49:58,040 SIGNIFICANTLY MORE EFFICACIOUS 1455 00:49:58,040 --> 00:49:59,374 THAN, LIKE, THE STANDARD OF CARE 1456 00:49:59,374 --> 00:50:02,244 IN THAT COUNTRY, BUT IT'S STILL 1457 00:50:02,244 --> 00:50:03,745 NOT SIGNIFICANTLY MORE 1458 00:50:03,745 --> 00:50:06,948 DELIVERABLE THAN THE ORIGINAL 1459 00:50:06,948 --> 00:50:10,485 MEDICATION, AND I'M WONDERING 1460 00:50:10,485 --> 00:50:11,687 LIE ISN'T AN EQUALLY IMPORTANT 1461 00:50:11,687 --> 00:50:13,889 QUESTION TO INVESTIGATE WHETHER 1462 00:50:13,889 --> 00:50:16,091 OR NOT THIS MEDICATION IS, LIKE, 1463 00:50:16,091 --> 00:50:17,192 SIGNIFICANTLY MORE DELIVERABLE 1464 00:50:17,192 --> 00:50:18,293 AND, THEREFORE, WE SHOULD MAKE 1465 00:50:18,293 --> 00:50:21,897 THAT COMPARISON, AND HOW 1466 00:50:21,897 --> 00:50:23,799 INVESTIGATORS GO ABOUT, LIKE, 1467 00:50:23,799 --> 00:50:24,666 PROVING OR INVESTIGATING THAT 1468 00:50:24,666 --> 00:50:27,502 THIS WILL ACTUALLY BE MORE 1469 00:50:27,502 --> 00:50:29,071 DELIVERABLE IN THE CONTEXT. 1470 00:50:29,071 --> 00:50:31,073 >> GREAT. 1471 00:50:31,073 --> 00:50:32,040 TOTALLY CORRECT, BECAUSE THERE 1472 00:50:32,040 --> 00:50:33,041 ARE TWO THINGS THAT WE WANT TO 1473 00:50:33,041 --> 00:50:33,475 DO. 1474 00:50:33,475 --> 00:50:35,644 WE WANT TO BE STILL EFFICACIOUS, 1475 00:50:35,644 --> 00:50:37,012 AND WE WANT TO BE MORE 1476 00:50:37,012 --> 00:50:40,415 DELIVERABLE. 1477 00:50:40,415 --> 00:50:41,817 TYPICALLY, THE SORT OF 1478 00:50:41,817 --> 00:50:43,051 RANDOMIZED CONTROL TRIALS OR THE 1479 00:50:43,051 --> 00:50:45,120 TRIALS THAT DEMONSTRATE THE 1480 00:50:45,120 --> 00:50:48,190 SAFETY AND EFFICACY, THEY ARE 1481 00:50:48,190 --> 00:50:49,858 NOT ABLE -- THEY ARE ABLE TO 1482 00:50:49,858 --> 00:50:51,526 HAVE, LIKE, YOU KNOW, ADD-ON 1483 00:50:51,526 --> 00:50:52,828 STUDIES THAT LOOK AT 1484 00:50:52,828 --> 00:50:54,262 DELIVERABILITY WITHIN THE TRIAL 1485 00:50:54,262 --> 00:50:55,731 SETTING, BUT THAT IS A VERY 1486 00:50:55,731 --> 00:50:57,833 UNIQUE SETTING, YOU KNOW, 1487 00:50:57,833 --> 00:50:59,568 BECAUSE IT IS STILL A CONTROLLED 1488 00:50:59,568 --> 00:50:59,868 TRIAL. 1489 00:50:59,868 --> 00:51:01,870 SO THEY ARE NOT ABLE TO ANSWER 1490 00:51:01,870 --> 00:51:03,071 THIS QUESTION ABOUT 1491 00:51:03,071 --> 00:51:03,538 DELIVERABILITY. 1492 00:51:03,538 --> 00:51:06,208 IT IS A REALLY IMPORTANT 1493 00:51:06,208 --> 00:51:09,211 QUESTION, AND ONE THAT I THINK 1494 00:51:09,211 --> 00:51:12,748 SHOULD IDEALLY, AND -- IT'S NOT 1495 00:51:12,748 --> 00:51:14,049 ALWAYS POSSIBLE BECAUSE THE KIND 1496 00:51:14,049 --> 00:51:18,120 OF FORMATIVE RESEARCH TO TO THAT 1497 00:51:18,120 --> 00:51:20,088 IS NOT ALWAYS SPONSORED BUT IT 1498 00:51:20,088 --> 00:51:21,857 SHOULD IDEALLY HAPPEN BEFOREHAND 1499 00:51:21,857 --> 00:51:24,826 AND IT INVOLVES -- THOSE ARE 1500 00:51:24,826 --> 00:51:27,662 SOCIAL SCIENTIFIC METHODS, 1501 00:51:27,662 --> 00:51:28,630 PERHAPS SOCIOECONOMIC METHODS, 1502 00:51:28,630 --> 00:51:30,332 YOU KNOW, THEY ARE ALSO, YOU 1503 00:51:30,332 --> 00:51:31,900 KNOW, NOT REALLY METHODS BUT, 1504 00:51:31,900 --> 00:51:33,769 LIKE, TALKING TO PEOPLE AND 1505 00:51:33,769 --> 00:51:34,736 GETTING POLITICAL COMMITMENT, 1506 00:51:34,736 --> 00:51:36,371 YOU KNOW, ON GROUND AND GETTING 1507 00:51:36,371 --> 00:51:38,306 A LOT OF SORT OF, YOU KNOW, 1508 00:51:38,306 --> 00:51:40,342 CONTEXTUAL INFORMATION ABOUT 1509 00:51:40,342 --> 00:51:42,144 WHAT IS AND ISN'T DELIVERABLE IN 1510 00:51:42,144 --> 00:51:43,145 THE CIRCUMSTANCES, WHAT PEOPLE 1511 00:51:43,145 --> 00:51:46,948 ARE WILLING TO COMMIT TO IF THE 1512 00:51:46,948 --> 00:51:48,383 DATA ARE POSITIVE. 1513 00:51:48,383 --> 00:51:50,352 IT'S A LOT OF WORK, AND A LOT OF 1514 00:51:50,352 --> 00:51:51,787 WORK THAT INVESTIGATORS DO WHO 1515 00:51:51,787 --> 00:51:53,922 ARE SERIOUS ABOUT DOING RESEARCH 1516 00:51:53,922 --> 00:51:55,223 AND A LOT OF THEM ARE ABOUT 1517 00:51:55,223 --> 00:51:56,091 DOING RESEARCH IN 1518 00:51:56,091 --> 00:51:58,593 LOW/MIDDLE-INCOME COUNTRIES, BUT 1519 00:51:58,593 --> 00:52:01,496 IT'S OFTEN NOT FULLY FUNDED AND, 1520 00:52:01,496 --> 00:52:03,799 THEREFORE, PERHAPS DOESN'T 1521 00:52:03,799 --> 00:52:05,100 ALWAYS HAPPEN WITH THE RIGOR 1522 00:52:05,100 --> 00:52:07,636 THAT IT SHOULD HAPPEN WITH. 1523 00:52:07,636 --> 00:52:09,304 THE TRIAL ITSELF, IT'S VERY 1524 00:52:09,304 --> 00:52:11,606 WELCOME IF YOU HAVE SORT OF AN 1525 00:52:11,606 --> 00:52:16,211 ADD-ON COMPONENT WHERE YOU'RE 1526 00:52:16,211 --> 00:52:18,046 ALSO LOOKING AT DELIVERABILITY 1527 00:52:18,046 --> 00:52:19,080 WITHIN THE TRIAL SETTING BUT 1528 00:52:19,080 --> 00:52:20,415 GIVEN THAT THE TRIAL IS SUCH A 1529 00:52:20,415 --> 00:52:21,817 UNIQUE SETTING BECAUSE IT'S 1530 00:52:21,817 --> 00:52:23,618 REALLY DESIGNED TO TEST SAFETY 1531 00:52:23,618 --> 00:52:24,920 AND EFFICACY, I THINK YOU WILL 1532 00:52:24,920 --> 00:52:26,454 ONLY GET LIMITED ANSWERS AND YOU 1533 00:52:26,454 --> 00:52:27,489 COULD NEED SUPPLEMENT. 1534 00:52:27,489 --> 00:52:28,356 DEFINITELY JUST SAYING OH, WE 1535 00:52:28,356 --> 00:52:29,558 THINK THIS WILL BE MORE 1536 00:52:29,558 --> 00:52:30,425 DELIVERABLE IS NOT ENOUGH. 1537 00:52:30,425 --> 00:52:33,662 YOU NEED A LOT OF EVIDENCE. 1538 00:52:33,662 --> 00:52:34,763 >> THANK YOU, ANNETTE. 1539 00:52:34,763 --> 00:52:35,397 [APPLAUSE] 1540 00:52:35,397 --> 00:52:37,899 >> THANK YOU. 1541 00:52:37,899 --> 00:52:39,201 WE DIDN'T GET TO THE PERSON 1542 00:52:39,201 --> 00:52:40,068 ONLINE BUT I'M HAPPY -- 1543 00:52:40,068 --> 00:52:41,436 >> IT'S OKAY, I WILL REACH OUT 1544 00:52:41,436 --> 00:52:42,204 TO YOU AS NEEDED. 1545 00:52:42,204 --> 00:52:42,771 >> GREAT. 1546 00:52:42,771 --> 00:52:45,307 THANK YOU SO MUCH. 1547 00:52:45,307 --> 00:52:49,344 >> SO NOW WE ARE GOING TO BE 1548 00:52:49,344 --> 00:52:50,645 TRANSITIONS TO JOE MILLUM. 1549 00:52:50,645 --> 00:52:52,781 I'M GOING TO INTRODUCE JOE. 1550 00:52:52,781 --> 00:52:55,183 JOE IS A SPECIAL FRIEND OF THE 1551 00:52:55,183 --> 00:52:57,252 DEPARTMENT. 1552 00:52:57,252 --> 00:53:00,155 HE WORKED HERE AT THE CLINICAL 1553 00:53:00,155 --> 00:53:02,023 CENTER FOR ABOUT 15 YEARS AND IS 1554 00:53:02,023 --> 00:53:03,825 NOW A SENIOR LECTURER AT THE 1555 00:53:03,825 --> 00:53:06,161 DEPARTMENT OF PHILOSOPHY AT 1556 00:53:06,161 --> 00:53:08,463 ST. ANDREWS UNIVERSITY IN 1557 00:53:08,463 --> 00:53:09,998 SCOTLAND. 1558 00:53:09,998 --> 00:53:11,566 SO WE'RE WELCOMING HIM. 1559 00:53:11,566 --> 00:53:14,970 HE HAS A LONG HISTORY OF 1560 00:53:14,970 --> 00:53:16,371 THINKING ABOUT ISSUES RELATED TO 1561 00:53:16,371 --> 00:53:18,373 ETHICS OF NATIONAL RESEARCH, 1562 00:53:18,373 --> 00:53:20,008 INFORMED CONSENT AND PRIORITY 1563 00:53:20,008 --> 00:53:24,379 SETTING, AND IS THE PERFECT 1564 00:53:24,379 --> 00:53:26,348 PERSON TO TALK TO US NOW ABOUT 1565 00:53:26,348 --> 00:53:27,282 POST TRIAL ACCESS. 1566 00:53:27,282 --> 00:53:29,050 SO JOE, ARE YOU CONNECTED OUT 1567 00:53:29,050 --> 00:53:32,320 THERE? 1568 00:53:32,320 --> 00:53:33,822 >> I'M HERE. 1569 00:53:33,822 --> 00:53:34,389 >> GREAT. 1570 00:53:34,389 --> 00:53:35,423 THERE YOU ARE. 1571 00:53:35,423 --> 00:53:35,957 HELLO, JOE! 1572 00:53:35,957 --> 00:53:37,192 SO I'M GOING TO HAND IT OVER TO 1573 00:53:37,192 --> 00:53:40,362 YOU. 1574 00:53:40,362 --> 00:53:41,229 >> THANK YOU, HOLLY. 1575 00:53:41,229 --> 00:53:51,773 THANK YOU SO MUCH FOR HAVING ME. 1576 00:53:52,240 --> 00:53:53,608 AND I'M HOPING EVERYONE CAN SEE 1577 00:53:53,608 --> 00:53:54,175 MY SCREEN. 1578 00:53:54,175 --> 00:53:57,379 >> YES, ALL GOOD. 1579 00:53:57,379 --> 00:54:03,485 >> WELL, THANK YOU AGAIN FOR 1580 00:54:03,485 --> 00:54:04,920 INVITING ME TO GIVE THIS TALK. 1581 00:54:04,920 --> 00:54:09,157 THANKS, ANNETTE, FOR YOUR TALK 1582 00:54:09,157 --> 00:54:10,458 AND I'M GOING TO TRY TO FOLLOW 1583 00:54:10,458 --> 00:54:12,527 UP ON A COUPLE OF THE QUESTIONS 1584 00:54:12,527 --> 00:54:15,463 THAT GOT RAISED BUT NOT 1585 00:54:15,463 --> 00:54:19,768 COMPLETELY COVERED IN THE 1586 00:54:19,768 --> 00:54:20,568 PRESENTATION THAT ANNETTE JUST 1587 00:54:20,568 --> 00:54:23,171 GAVE. 1588 00:54:23,171 --> 00:54:25,240 SO ANNETTE DISCUSSED THE ISSUE 1589 00:54:25,240 --> 00:54:26,341 OF THE STANDARD OF CARE THAT 1590 00:54:26,341 --> 00:54:27,909 SHOULD BE USED IN RESEARCH 1591 00:54:27,909 --> 00:54:30,679 STUDIES IN RESOURCE -- SETTINGS. 1592 00:54:30,679 --> 00:54:32,681 ONE FTD OTHER KEY ISSUES THAT 1593 00:54:32,681 --> 00:54:34,215 SHE INTRODUCED CONCERNED THE 1594 00:54:34,215 --> 00:54:36,818 TYPES OF TRIALS THAT ONE COULD 1595 00:54:36,818 --> 00:54:39,220 DO IN RESOURCE-POOR SETTINGS, 1596 00:54:39,220 --> 00:54:40,689 AND THE ASSOCIATED ISSUE, WHICH 1597 00:54:40,689 --> 00:54:42,324 ALSO CAME UP IN THE QUESTIONS, 1598 00:54:42,324 --> 00:54:43,558 OF POST TRIAL ACCESS TO 1599 00:54:43,558 --> 00:54:45,026 TREATMENTS THAT ARE USED OR 1600 00:54:45,026 --> 00:54:48,630 TESTED IN THOSE TRIALS. 1601 00:54:48,630 --> 00:54:50,065 AND THAT'S WHAT I'M GOING TO 1602 00:54:50,065 --> 00:54:51,599 FOCUS ON TODAY. 1603 00:54:51,599 --> 00:54:52,934 SO I'LL START BY BRIEFLY 1604 00:54:52,934 --> 00:54:55,337 OUTLINING TWO CASES. 1605 00:54:55,337 --> 00:54:56,871 THESE ARE BASED ON REAL STUDIES 1606 00:54:56,871 --> 00:54:58,406 BUT I'VE SIMPLIFIED THE DETAILS 1607 00:54:58,406 --> 00:55:06,114 SOMEWHAT. 1608 00:55:06,114 --> 00:55:07,649 CONCERNS ACCESS TO 1609 00:55:07,649 --> 00:55:08,283 ANTIRETROVIRAL -- FOR PATIENTS 1610 00:55:08,283 --> 00:55:09,951 WITH HIV/AIDS. 1611 00:55:09,951 --> 00:55:10,919 MILLIONS OF PEOPLE AROUND THE 1612 00:55:10,919 --> 00:55:13,488 WORLD INCLUDING IN SUB-SAHARAN 1613 00:55:13,488 --> 00:55:14,689 AFRICA, SOUTH AMERICA AND 1614 00:55:14,689 --> 00:55:16,124 SOUTHEAST ASIA NOW DO HAVE 1615 00:55:16,124 --> 00:55:17,092 ACCESS TO ANTIRETROVIRAL 1616 00:55:17,092 --> 00:55:20,328 THERAPY. 1617 00:55:20,328 --> 00:55:22,063 THE LIFESPAN OF PEOPLE WHO ARE 1618 00:55:22,063 --> 00:55:24,699 SUCCESSFULLY MAINTAINED ON ART 1619 00:55:24,699 --> 00:55:26,101 IS NOW CLOSE TO THAT OF PEOPLE 1620 00:55:26,101 --> 00:55:29,104 WHO DO NOT HAVE HIV. 1621 00:55:29,104 --> 00:55:31,406 BUT THOUSANDS OF PATIENTS END UP 1622 00:55:31,406 --> 00:55:32,407 HAVING TO MOVE TO DIFFERENT 1623 00:55:32,407 --> 00:55:33,641 TYPES OF ANTIRETROVIRAL AS THEIR 1624 00:55:33,641 --> 00:55:36,044 STRAIN OF HIV DEVELOPS 1625 00:55:36,044 --> 00:55:38,246 RESISTANCE TO THE ART. 1626 00:55:38,246 --> 00:55:39,748 THIS STUDY WAS CARRIED OUT WITH 1627 00:55:39,748 --> 00:55:41,950 PATIENTS WHO WERE ALREADY ON 1628 00:55:41,950 --> 00:55:44,285 SECOND LINE ANTIRETROVIRALS, AND 1629 00:55:44,285 --> 00:55:45,387 WHOSE SECOND LINE REGIMENS WERE 1630 00:55:45,387 --> 00:55:47,355 NOW FAILING DUE TO RESISTANT 1631 00:55:47,355 --> 00:55:48,390 STRAINS OF HIV. 1632 00:55:48,390 --> 00:55:51,026 AND THE STUDY SOUGHT TO TEST A 1633 00:55:51,026 --> 00:55:52,794 STRATEGY FOR OPTIMIZING 1634 00:55:52,794 --> 00:55:55,063 ALTERNATIVE TREATMENT 1635 00:55:55,063 --> 00:56:01,036 COMBINATIONS [INAUDIBLE]. 1636 00:56:01,036 --> 00:56:03,772 IT WAS AN OPEN LABEL PHASE 1637 00:56:03,772 --> 00:56:04,406 4 PROSPECTIVE INTERVENTIONAL 1638 00:56:04,406 --> 00:56:08,410 STUDY ENROLLING 500 ADULTS WITH 1639 00:56:08,410 --> 00:56:12,213 HIV WHOSE TREATMENT WHERE THE 1640 00:56:12,213 --> 00:56:13,415 SECOND LINE -- A TYPE OF 1641 00:56:13,415 --> 00:56:14,949 ANTIRETROVIRAL WAS FAILING. 1642 00:56:14,949 --> 00:56:16,751 THE GOAL OF THE STUDY WAS TO 1643 00:56:16,751 --> 00:56:19,154 TEST A NOVEL METHOD FOR 1644 00:56:19,154 --> 00:56:20,355 ASSESSING A PATIENT'S RESISTANCE 1645 00:56:20,355 --> 00:56:22,690 TO HIS OR HER CURRENT ART 1646 00:56:22,690 --> 00:56:24,459 REGIMEN, AND THEN ASSIGNING THEM 1647 00:56:24,459 --> 00:56:25,994 TO ANOTHER TREATMENT REGIMEN 1648 00:56:25,994 --> 00:56:29,264 WITH A DIFFERENT COMBINATION OF 1649 00:56:29,264 --> 00:56:31,933 ANTIRETROVIRAL DRUGS. 1650 00:56:31,933 --> 00:56:35,103 THE STUDY HAD SITES IN BRAZIL, 1651 00:56:35,103 --> 00:56:36,871 KENYA, MALAWI, PERU, SOUTH 1652 00:56:36,871 --> 00:56:39,541 AFRICA, THAILAND AND UGANDA. 1653 00:56:39,541 --> 00:56:40,975 NOW ALL OF THE DRUGS THAT WE 1654 00:56:40,975 --> 00:56:42,310 USED IN THE TRIAL WERE LICENSED 1655 00:56:42,310 --> 00:56:43,745 IN THE UNITED STATES. 1656 00:56:43,745 --> 00:56:45,180 THEY WERE NOT ALL LICENSED IN 1657 00:56:45,180 --> 00:56:46,481 THE COUNTRIES WHERE THE TRIAL 1658 00:56:46,481 --> 00:56:49,017 WAS TAKING PLACE. 1659 00:56:49,017 --> 00:56:50,785 THIS MEANT THAT PARTICIPANT 1660 00:56:50,785 --> 00:56:52,454 MIGHT HAVE BEEN PLACED ON A 1661 00:56:52,454 --> 00:56:53,922 LIFE-SAVING TREATMENT REGIMEN 1662 00:56:53,922 --> 00:56:55,123 BUT THEY WOULDN'T BE ABLE TO 1663 00:56:55,123 --> 00:56:56,758 OBTAIN THE SAME COMBINATION OF 1664 00:56:56,758 --> 00:57:00,028 DRUGS WHEN THEY LEFT THE TRIAL. 1665 00:57:00,028 --> 00:57:01,529 AND TO THE RESEARCHERS WHO WERE 1666 00:57:01,529 --> 00:57:03,264 DESIGNING THE STUDY, THIS SEEMED 1667 00:57:03,264 --> 00:57:09,170 UNETHICAL. 1668 00:57:09,170 --> 00:57:10,605 SECOND CASE CONCERNS A RESEARCH 1669 00:57:10,605 --> 00:57:14,242 STUDY OF HUNTINGTON'S DISEASE. 1670 00:57:14,242 --> 00:57:21,282 HUND.IF SOMEONE HAS HUNTINGTONSN 1671 00:57:21,282 --> 00:57:22,617 NORMALLY HER CHILDREN HAVE A 50% 1672 00:57:22,617 --> 00:57:23,918 CHANCE OF INHERITING THE GENE 1673 00:57:23,918 --> 00:57:25,620 AND SO DEVELOPING THE DISEASE AS 1674 00:57:25,620 --> 00:57:27,489 WELL. 1675 00:57:27,489 --> 00:57:29,557 SYMPTOMS OF HUNTINGTON'S DISEASE 1676 00:57:29,557 --> 00:57:30,892 USUALLY START BETWEEN THE AGES 1677 00:57:30,892 --> 00:57:32,994 OF 30 AND 50. 1678 00:57:32,994 --> 00:57:35,096 IT CAUSES UNCOORDINATED JERKY 1679 00:57:35,096 --> 00:57:36,831 BODY MOVEMENTS, A DECLINE OF 1680 00:57:36,831 --> 00:57:39,501 MENTAL CAPACITY INTO DEMENTIA. 1681 00:57:39,501 --> 00:57:41,269 MOST HUNTINGTON'S PATIENTS DIE 1682 00:57:41,269 --> 00:57:42,470 WITHIN 20 YEARS OF THE ONSET OF 1683 00:57:42,470 --> 00:57:46,674 THEIR SYMPTOMS. 1684 00:57:46,674 --> 00:57:50,278 THERE'S A RURAL COMMUNITY IN 1685 00:57:50,278 --> 00:57:51,579 NORTHWEST VENEZUELA THAT HAS THE 1686 00:57:51,579 --> 00:57:55,049 HIGHEST CONCENTRATION OF 1687 00:57:55,049 --> 00:57:55,750 HUNTINGTON'S CARRIERS IN THE 1688 00:57:55,750 --> 00:57:55,950 WORLD. 1689 00:57:55,950 --> 00:57:57,452 THIS MADE IT AN IDEAL COMMUNITY 1690 00:57:57,452 --> 00:57:58,586 FOR CARRYING OUT RESEARCH INTO 1691 00:57:58,586 --> 00:58:00,955 THE DISEASE. 1692 00:58:00,955 --> 00:58:04,459 IN 1993, U.S. RESEARCHERS VIEWED 1693 00:58:04,459 --> 00:58:06,828 SAMPLES OF BLOOD AND SEMEN TO 1694 00:58:06,828 --> 00:58:08,997 IDENTIFY THE GENE THAT WAS 1695 00:58:08,997 --> 00:58:10,431 RESPONSIBLE FOR CAUSING 1696 00:58:10,431 --> 00:58:10,765 HUNTINGTON'S. 1697 00:58:10,765 --> 00:58:12,567 AS A RESULT OF THAT RESEARCH, A 1698 00:58:12,567 --> 00:58:13,868 GENETIC TEST WAS DEVELOPED THAT 1699 00:58:13,868 --> 00:58:14,536 COULD DETERMINE WHETHER OR NOT 1700 00:58:14,536 --> 00:58:15,737 SOMEONE WAS A CARRIER OF THE 1701 00:58:15,737 --> 00:58:18,806 DISEASE. 1702 00:58:18,806 --> 00:58:20,074 THAT TEST IS NOW AVAILABLE IN 1703 00:58:20,074 --> 00:58:21,376 MANY HEALTHCARE SYSTEMS AROUND 1704 00:58:21,376 --> 00:58:22,477 THE WORLD. 1705 00:58:22,477 --> 00:58:24,879 IT'S NOT AVAILABLE TO THE PEOPLE 1706 00:58:24,879 --> 00:58:27,615 THERE. 1707 00:58:27,615 --> 00:58:31,619 [INAUDIBLE] A PHYSICIAN WORKING 1708 00:58:31,619 --> 00:58:32,820 IN THE COMMUNITY EXPRESSED THE 1709 00:58:32,820 --> 00:58:35,423 CONCERN LIKE THIS. 1710 00:58:35,423 --> 00:58:36,958 IN THE U.S. OR EUROPE, WHOEVER 1711 00:58:36,958 --> 00:58:38,193 HAS THE DISEASE IN THEIR FAMILY 1712 00:58:38,193 --> 00:58:40,094 HAS THE OPTION TO DECIDE, I WANT 1713 00:58:40,094 --> 00:58:42,197 TO GET THE TEST OR I DON'T WANT 1714 00:58:42,197 --> 00:58:42,931 TO KNOW. 1715 00:58:42,931 --> 00:58:45,400 THE PEOPLE OF MARACAIBO DON'T 1716 00:58:45,400 --> 00:58:47,502 HAVE THAT OPTION EVEN AFTER THEY 1717 00:58:47,502 --> 00:58:53,074 COLLABORATED IN THE RECENT -- 1718 00:58:53,074 --> 00:58:54,542 THESE CASES ILLUSTRATE TWO 1719 00:58:54,542 --> 00:58:55,877 ETHICAL ISSUES THAT ARE VERY 1720 00:58:55,877 --> 00:58:58,179 SALIENT IN RESEARCH WITH 1721 00:58:58,179 --> 00:58:59,247 POPULATIONS THAT LACK ACCESS TO 1722 00:58:59,247 --> 00:59:00,615 GOOD QUALITY CARE OUTSIDE OF 1723 00:59:00,615 --> 00:59:01,516 RESEARCH STUDIES. 1724 00:59:01,516 --> 00:59:02,817 AND THAT INCLUDES MANY 1725 00:59:02,817 --> 00:59:04,252 POPULATIONS IN LOW AND MIDDLE 1726 00:59:04,252 --> 00:59:05,720 INCOME COUNTRIES. 1727 00:59:05,720 --> 00:59:07,755 IT CAN ALSO INCLUDE GROUPS IN 1728 00:59:07,755 --> 00:59:08,556 HIGH-INCOME COUNTRIES THAT LACK 1729 00:59:08,556 --> 00:59:10,124 ACCESS TO AFFORDABLE HEALTHCARE, 1730 00:59:10,124 --> 00:59:11,593 BUT I'M NOT GOING TO FOCUS ON 1731 00:59:11,593 --> 00:59:14,629 THOSE CASES TODAY. 1732 00:59:14,629 --> 00:59:16,798 THE FIRST ETHICAL ISSUE IS THE 1733 00:59:16,798 --> 00:59:20,168 ISSUE OF POST TRIAL ACCESS, WHAT 1734 00:59:20,168 --> 00:59:23,271 CARE SHOULD PATIENTS RECEIVE 1735 00:59:23,271 --> 00:59:24,872 AFTER A STUDY, ARE THEY ENTITLED 1736 00:59:24,872 --> 00:59:27,475 TO CONTINUE TRE TREATMENT. 1737 00:59:27,475 --> 00:59:29,744 SECOND THE ISSUE OF REASONABLE 1738 00:59:29,744 --> 00:59:30,178 AVAILABILITY. 1739 00:59:30,178 --> 00:59:32,013 SHOULD THEY HAVE ACCESS TO STUDY 1740 00:59:32,013 --> 00:59:33,214 INTERVENTIONS AFTER A SUCCESSFUL 1741 00:59:33,214 --> 00:59:35,049 STUDY? 1742 00:59:35,049 --> 00:59:38,286 SO I'LL START BY DISCUSSING -- 1743 00:59:38,286 --> 00:59:40,188 ACCESS TO CARE FOR TRIAL 1744 00:59:40,188 --> 00:59:42,323 PARTICIPANTS AND I'M GOING TO 1745 00:59:42,323 --> 00:59:44,225 PRIMARILY FOCUS TO THE 1746 00:59:44,225 --> 00:59:44,993 INTERVENTION THAT'S BEING TESTED 1747 00:59:44,993 --> 00:59:46,361 IN THE STUDY, OF COURSE THAT'S 1748 00:59:46,361 --> 00:59:47,862 NOT THE ONLY SORT OF CARE THAT 1749 00:59:47,862 --> 00:59:49,097 PARTICIPANTS MAY LEAVE A TRIAL 1750 00:59:49,097 --> 00:59:52,467 NEEDING. 1751 00:59:52,467 --> 00:59:54,068 FIRST WHAT DO THE GUIDELINES AND 1752 00:59:54,068 --> 00:59:56,738 REGULATIONS SAY ABOUT THIS ISS 1753 00:59:56,738 --> 00:59:57,138 ISSUE? 1754 00:59:57,138 --> 00:59:59,907 THE DECLARATION OF HELSINKI, THE 1755 00:59:59,907 --> 01:00:00,908 WORLD MEDICAL ASSOCIATION, THE 1756 01:00:00,908 --> 01:00:02,110 ETHICAL PRINCIPLES THEY THINK 1757 01:00:02,110 --> 01:00:07,348 SHOULD GOVERN RESEARCH MENTIONED 1758 01:00:07,348 --> 01:00:09,684 ALREADY BY ANNETTE. 1759 01:00:09,684 --> 01:00:11,586 EXTREMELY HELPFUL DOCUMENT USED 1760 01:00:11,586 --> 01:00:13,121 BY IRBs, MENTIONED IN 1761 01:00:13,121 --> 01:00:15,356 REGULATIONS ALL AROUND THE WOR 1762 01:00:15,356 --> 01:00:16,557 WORLD. 1763 01:00:16,557 --> 01:00:17,425 THE 2013 VERSION OF THE 1764 01:00:17,425 --> 01:00:19,627 DECLARATION STATES, IN ADVANCE 1765 01:00:19,627 --> 01:00:21,929 OF A CLINICAL TRIAL, SPONSORS 1766 01:00:21,929 --> 01:00:23,097 RESEARCHERS AND HOST COUNTRY 1767 01:00:23,097 --> 01:00:23,965 GOVERNMENTS SHOULD MAKE 1768 01:00:23,965 --> 01:00:25,066 PROVISIONS FOR POST TRIAL ACCESS 1769 01:00:25,066 --> 01:00:27,035 FOR ALL PARTICIPANTS WHO STILL 1770 01:00:27,035 --> 01:00:28,303 NEED INTERVENTION IDENTIFIED AS 1771 01:00:28,303 --> 01:00:33,875 BENEFICIAL IN THE TRIAL. 1772 01:00:33,875 --> 01:00:34,976 NOW, AT THE NATIONAL LEVEL, 1773 01:00:34,976 --> 01:00:36,711 THINGS ARE MUCH LESS CLEARCUT 1774 01:00:36,711 --> 01:00:37,645 THAN THEY ARE WITH THE 1775 01:00:37,645 --> 01:00:39,881 DECLARATION OF HELSINKI. 1776 01:00:39,881 --> 01:00:42,517 MOST NATIONAL REGULATIONS FOR 1777 01:00:42,517 --> 01:00:43,651 HUMAN SUBJECTS RESEARCH ARE 1778 01:00:43,651 --> 01:00:44,485 SILENT ON THE ISSUE. 1779 01:00:44,485 --> 01:00:47,021 SO FOR EXAMPLE, THE COMMON RULE 1780 01:00:47,021 --> 01:00:48,289 SAYS NOTHING ABOUT POST-TRIAL 1781 01:00:48,289 --> 01:00:50,224 ACCESS. 1782 01:00:50,224 --> 01:00:53,294 OTHER REGULATIONS MAY ENCOURAGE 1783 01:00:53,294 --> 01:00:54,262 PROVISION, REQUIRE RESEARCHERS 1784 01:00:54,262 --> 01:00:57,031 TO MAKE EFFORTS TO TRANSITION -- 1785 01:00:57,031 --> 01:00:59,667 TO CARE OR SIMPLY REQUIRE THE -- 1786 01:00:59,667 --> 01:01:00,401 OF INFORMATION. 1787 01:01:00,401 --> 01:01:02,236 THERE IS A LEGAL REQUIREMENT TO 1788 01:01:02,236 --> 01:01:04,539 PROVIDE FIRST TRIAL ACCESS FOR 1789 01:01:04,539 --> 01:01:06,174 PARTICIPANTS IN CURRENTLY 1790 01:01:06,174 --> 01:01:08,743 ARGENTINA, BRAZIL, CHILE, PERU 1791 01:01:08,743 --> 01:01:13,481 AND INDIA. 1792 01:01:13,481 --> 01:01:15,650 I'VE NOT SEEN MUCH DATA ON THE 1793 01:01:15,650 --> 01:01:16,684 IMPLEMENTATION OF THOSE 1794 01:01:16,684 --> 01:01:20,188 REGULATIONS IN ARGENTINA, CHILE, 1795 01:01:20,188 --> 01:01:20,855 INDIA AND PERU. 1796 01:01:20,855 --> 01:01:22,390 IT IS STILL RELATIVELY RECENT IN 1797 01:01:22,390 --> 01:01:23,658 THOSE COUNTRIES. 1798 01:01:23,658 --> 01:01:25,827 IN BRAZIL, THE ENTITY WITH THE 1799 01:01:25,827 --> 01:01:27,462 LEGAL DUTY TO PROVIDE POST TRIAL 1800 01:01:27,462 --> 01:01:28,963 ACCESS IS FREQUENTLY DISPUTED, 1801 01:01:28,963 --> 01:01:30,264 WHICH LEAVES PHARMACEUTICAL 1802 01:01:30,264 --> 01:01:31,799 COMPANIES SUING THE GOVERNMENT, 1803 01:01:31,799 --> 01:01:32,900 THE GOVERNMENT SUING 1804 01:01:32,900 --> 01:01:36,037 PHARMACEUTICAL COMPANIES. 1805 01:01:36,037 --> 01:01:37,872 POST TRIAL ACCESS TO SUCCESSFUL 1806 01:01:37,872 --> 01:01:39,107 INTERVENTIONS IS ALSO 1807 01:01:39,107 --> 01:01:40,274 RECOMMENDED BY NATIONAL 1808 01:01:40,274 --> 01:01:41,976 GUIDELINES IN SOME LOW AND 1809 01:01:41,976 --> 01:01:42,510 MIDDLE INCOME COUNTRIES. 1810 01:01:42,510 --> 01:01:44,612 FOR EXAMPLE, IN SOUTH AFRICA AND 1811 01:01:44,612 --> 01:01:45,813 UGANDA. 1812 01:01:45,813 --> 01:01:47,248 NOW, THOSE RECOMMENDATIONS ARE 1813 01:01:47,248 --> 01:01:48,616 NOT LEGALLY BINDING, BUT LIKE 1814 01:01:48,616 --> 01:01:49,884 THE DECLARATION OF HELSINKI, 1815 01:01:49,884 --> 01:01:51,352 THEY CAN BE RELIED UPON BY 1816 01:01:51,352 --> 01:01:52,520 RESEARCH ETHICS COMMITTEES WHO 1817 01:01:52,520 --> 01:01:54,088 THEN HAVE THE POWER TO 1818 01:01:54,088 --> 01:02:01,129 DISAPPROVE RESEARCH. 1819 01:02:01,129 --> 01:02:02,964 -- I'LL MENTION ONE WHICH IS 1820 01:02:02,964 --> 01:02:05,066 NIH'S GUIDANCE. 1821 01:02:05,066 --> 01:02:08,436 THIS DATES BACK TO 2005, THAT I 1822 01:02:08,436 --> 01:02:11,506 BELIEVE IS STILL [INAUDIBLE]. 1823 01:02:11,506 --> 01:02:14,075 NOW THE NIH GUIDANCE APPLIES 1824 01:02:14,075 --> 01:02:14,642 VERY NARROWLY. 1825 01:02:14,642 --> 01:02:16,944 IT'S WRITTEN ONLY FOR THE 1826 01:02:16,944 --> 01:02:17,678 PROVISION OF ANTIRETROVIRAL 1827 01:02:17,678 --> 01:02:19,747 TREATMENT AND APPLIES ONLY TO 1828 01:02:19,747 --> 01:02:22,016 THE PROVISION OF ANTIRETROVIRAL 1829 01:02:22,016 --> 01:02:24,919 TREATMENT IN HIV TREATMENT 1830 01:02:24,919 --> 01:02:26,087 TRIALS, THOUGH NOT, FOR EXAMPLE, 1831 01:02:26,087 --> 01:02:27,755 TO TREATMENT FOR PEOPLE WHO 1832 01:02:27,755 --> 01:02:29,857 CONTRACT HIV IN PREVENTION 1833 01:02:29,857 --> 01:02:30,958 TRIALS. 1834 01:02:30,958 --> 01:02:32,260 AND IT APPLIES ONLY TO 1835 01:02:32,260 --> 01:02:33,394 DEVELOPING COUNTRIES, SO NOT, 1836 01:02:33,394 --> 01:02:34,562 FOR EXAMPLE, TO STUDIES IN THE 1837 01:02:34,562 --> 01:02:37,131 U.S. 1838 01:02:37,131 --> 01:02:40,635 THE GUIDANCE STATES, THE NIH 1839 01:02:40,635 --> 01:02:41,803 EXPECTS INVESTIGATORS OR 1840 01:02:41,803 --> 01:02:43,104 CONTRACTORS TO ADDRESS THE 1841 01:02:43,104 --> 01:02:44,071 PROVISION OF ANTIRETROVIRAL 1842 01:02:44,071 --> 01:02:45,840 TREATMENT TO TRIAL PARTICIPANTS 1843 01:02:45,840 --> 01:02:46,607 AFTER THEIR COMPLETION OF THE 1844 01:02:46,607 --> 01:02:49,510 TRIAL. 1845 01:02:49,510 --> 01:02:50,812 THE NIH RECOMMENDS THAT 1846 01:02:50,812 --> 01:02:51,813 INVESTIGATORS OR CONTRACTORS 1847 01:02:51,813 --> 01:02:54,816 WORK WITH HOST COUNTRIES, 1848 01:02:54,816 --> 01:02:55,817 AUTHORITIES AND OTHER 1849 01:02:55,817 --> 01:02:56,717 STAKEHOLDERS TO IDENTIFY 1850 01:02:56,717 --> 01:02:58,219 AVAILABLE SOURCES OF 1851 01:02:58,219 --> 01:02:59,654 ANTIRETROVIRAL TREATMENT. 1852 01:02:59,654 --> 01:03:02,223 PRIORITY MAY BE GIVEN TO SITES 1853 01:03:02,223 --> 01:03:03,958 WHERE SOURCES ARE IDENTIFIED FOR 1854 01:03:03,958 --> 01:03:08,596 THE PROVISION OF ARL TREATMENT L 1855 01:03:08,596 --> 01:03:10,198 TREATMENT FOLLOWING THE 1856 01:03:10,198 --> 01:03:10,731 COMPLETION OF THE TRIAL. 1857 01:03:10,731 --> 01:03:13,000 SO THAT IS WHAT SOME OF THE 1858 01:03:13,000 --> 01:03:14,135 REGULATIONS AR GUIDELINES SAY 1859 01:03:14,135 --> 01:03:15,503 ABOUT POST TRIAL ACCESS, WHAT 1860 01:03:15,503 --> 01:03:17,472 SHOULD WE MAKE IT FROM THE POINT 1861 01:03:17,472 --> 01:03:25,012 OF VIEW OF ETHICS. 1862 01:03:25,012 --> 01:03:27,181 >> MANY RESEARCHES, ETHICISTS, 1863 01:03:27,181 --> 01:03:29,250 THINK THAT THERE IS A DUTY TO 1864 01:03:29,250 --> 01:03:30,785 PROVIDE POST TRIAL -- EFFECTIVE 1865 01:03:30,785 --> 01:03:31,886 TREATMENT TO TRIAL PARTICIPANTS 1866 01:03:31,886 --> 01:03:33,354 WHO NEED IT. 1867 01:03:33,354 --> 01:03:35,723 PROVIDING A JUSTIFICATION FOR 1868 01:03:35,723 --> 01:03:37,391 THAT DUTY HAS PROVEN MORE 1869 01:03:37,391 --> 01:03:39,260 CHALLENGING. 1870 01:03:39,260 --> 01:03:41,729 NOW MULTIPLE -- I'M GOING TO 1871 01:03:41,729 --> 01:03:42,597 QUICKLY DISCUSS FOUR THAT HAVE 1872 01:03:42,597 --> 01:03:45,900 BEEN RAISED BY ETHICISTS AND I 1873 01:03:45,900 --> 01:03:47,435 SUGGEST -- WITH USING THOSE -- 1874 01:03:47,435 --> 01:03:49,570 WITH USING THOSE JUSTIFICATIONS. 1875 01:03:49,570 --> 01:03:50,771 I'LL THEN SAY SOMETHING ABOUT 1876 01:03:50,771 --> 01:03:52,073 HOW POST TRIAL ACCESS PLAYS OUT 1877 01:03:52,073 --> 01:03:59,046 IN PR PRACTICE. 1878 01:03:59,046 --> 01:04:00,915 THE FIRST IS BASED UPON AVOIDING 1879 01:04:00,915 --> 01:04:03,217 HARM TO PARTICIPANTS. 1880 01:04:03,217 --> 01:04:04,185 THAT SOMEONE HAS A CHRONIC 1881 01:04:04,185 --> 01:04:05,119 DISEASE AND THEY'RE BENEFITING 1882 01:04:05,119 --> 01:04:05,920 FROM THE TREATMENT THAT THEY'RE 1883 01:04:05,920 --> 01:04:08,189 ON IN A TRIAL, THEN TAKING THEM 1884 01:04:08,189 --> 01:04:11,325 OFF THE TREATMENT. 1885 01:04:11,325 --> 01:04:11,726 WOULD HARM 1886 01:04:11,726 --> 01:04:11,926 THEM. 1887 01:04:11,926 --> 01:04:14,395 THIS IS ARGUED WOULD VIOLATE THE 1888 01:04:14,395 --> 01:04:20,501 DUTY OF NON-MALEFICENCE. 1889 01:04:20,501 --> 01:04:23,538 IF SOMEONE IS CONTROLLED BY HRT 1890 01:04:23,538 --> 01:04:25,640 REGIMEN, TAKING THEM OFF WILL 1891 01:04:25,640 --> 01:04:27,575 LEAD TO RESURGENCE OF DISEASE. 1892 01:04:27,575 --> 01:04:29,777 THIS JUSTIFICATION IS VERY 1893 01:04:29,777 --> 01:04:31,312 COMMON. 1894 01:04:31,312 --> 01:04:33,180 BUT I THINK IT'S USUALLY A MI 1895 01:04:33,180 --> 01:04:35,983 STAY KEP JUSTIFICATION. 1896 01:04:35,983 --> 01:04:38,486 THE REASON THAT IT M MISTAKEN IS 1897 01:04:38,486 --> 01:04:39,453 MANY, PERHAPS MOST OF THE CASES 1898 01:04:39,453 --> 01:04:40,888 IN WHICH POST TRIAL ACCESS WOULD 1899 01:04:40,888 --> 01:04:42,323 BE DESIRABLE, PARTICIPATING IN 1900 01:04:42,323 --> 01:04:44,325 THE TRIAL IN THE FIRST PLACE 1901 01:04:44,325 --> 01:04:45,760 BENEFITED PARTICIPANTS RELATIVE 1902 01:04:45,760 --> 01:04:49,463 TO HOW THEY WOULD OTHERWISE BE. 1903 01:04:49,463 --> 01:04:50,865 SO SUPPOSE THAT WE ARE 1904 01:04:50,865 --> 01:04:52,733 EVALUATING PROPOSED TRIAL OF AN 1905 01:04:52,733 --> 01:04:53,701 ANTIHYPERTENSIVE DRUG THAT'S 1906 01:04:53,701 --> 01:04:55,102 UNAPPROVED AND SO UNLIKELY TO BE 1907 01:04:55,102 --> 01:04:56,737 AVAILABLE VERY SOON TO 1908 01:04:56,737 --> 01:05:01,776 PARTICIPANT IN CLINICAL TRIALS. 1909 01:05:01,776 --> 01:05:05,212 YOU A SEUM THE DRUG TURNS OUT TO 1910 01:05:05,212 --> 01:05:09,050 BE UNAVAILABLE AND THERE AREN'T 1911 01:05:09,050 --> 01:05:10,585 GOOD -- AVAILABLE OUTSIDE THE 1912 01:05:10,585 --> 01:05:10,918 TRIAL. 1913 01:05:10,918 --> 01:05:13,454 IN THAT CASE IF THE PARTICIPANTS 1914 01:05:13,454 --> 01:05:14,822 WERE NOT -- THEY WOULD BE 1915 01:05:14,822 --> 01:05:16,357 WITHOUT ACCESS TO THE BENEFICIAL 1916 01:05:16,357 --> 01:05:17,024 TREATMENT. 1917 01:05:17,024 --> 01:05:18,426 BEING IN THE TRIAL PROVIDED 1918 01:05:18,426 --> 01:05:20,294 ACCESS TO THAT TREATMENT FOR A 1919 01:05:20,294 --> 01:05:20,795 WHILE. 1920 01:05:20,795 --> 01:05:22,430 IT'S PLAUSIBLE THAT THEY ARE 1921 01:05:22,430 --> 01:05:25,733 THEN BETTER OFF EVEN IF THEY 1922 01:05:25,733 --> 01:05:27,768 DON'T GET ACCESS AFTER THE TRIAL 1923 01:05:27,768 --> 01:05:29,537 AND THIS IMPLIES TRIAL 1924 01:05:29,537 --> 01:05:31,038 PARTICIPATION ITSELF DOES NOT 1925 01:05:31,038 --> 01:05:32,907 HARM THEM SO THE DUTY OF 1926 01:05:32,907 --> 01:05:40,114 NON-MALEFICENCE IS NOT VIOLATED. 1927 01:05:40,114 --> 01:05:42,283 A SECOND AND MORE PLAUSIBLE -- 1928 01:05:42,283 --> 01:05:43,517 IN THE SPECIAL RELATIONSHIP 1929 01:05:43,517 --> 01:05:44,752 BETWEEN RESEARCHERS AND THEIR 1930 01:05:44,752 --> 01:05:45,319 PARTICIPANTS THAT DEVELOPS 1931 01:05:45,319 --> 01:05:49,924 DURING THE COURSE OF A STUDY. 1932 01:05:49,924 --> 01:05:51,325 THIS IS ANALOGOUS TO THE 1933 01:05:51,325 --> 01:05:52,493 RELATIONSHIP BETWEEN DOCTORS AND 1934 01:05:52,493 --> 01:05:53,060 THEIR PATIENTS. 1935 01:05:53,060 --> 01:05:54,462 SO JUST AS A DOCTOR HAS A 1936 01:05:54,462 --> 01:05:56,897 SPECIAL DUTY WITH REGARD TO THE 1937 01:05:56,897 --> 01:05:58,265 WELL-BEING OF HER PATIENT, SO A 1938 01:05:58,265 --> 01:05:59,367 RESEARCHER HAS A SPECIAL DUTY 1939 01:05:59,367 --> 01:06:00,668 WITH REGARD TO THE WELL-BEING OF 1940 01:06:00,668 --> 01:06:10,911 HER SUBJECTS. 1941 01:06:11,345 --> 01:06:12,113 RECEIVING CLINICAL CARE AND SO 1942 01:06:12,113 --> 01:06:16,484 ON. 1943 01:06:16,484 --> 01:06:18,786 CLEARLY THEN THE DUTY SHOULD BE 1944 01:06:18,786 --> 01:06:21,689 GREATER WHEN A STUDY HAS BEEN 1945 01:06:21,689 --> 01:06:23,024 LONG, THAT ALSO FITS WITH HOW 1946 01:06:23,024 --> 01:06:28,396 RESEARCHERS TEND TO FEEL -- A 1947 01:06:28,396 --> 01:06:29,130 LONG-STANDING RELATIONSHIP WITH 1948 01:06:29,130 --> 01:06:30,431 A PARTICIPANT GENERATES A 1949 01:06:30,431 --> 01:06:35,870 STRONGER DUTY. 1950 01:06:35,870 --> 01:06:36,904 THERE ARE TWO CHALLENGES THAT I 1951 01:06:36,904 --> 01:06:39,473 SEE IN APPEALING TO A SPECIAL 1952 01:06:39,473 --> 01:06:40,341 RELATIONSHIP BETWEEN RESEARCHERS 1953 01:06:40,341 --> 01:06:41,642 AND PARTICIPANTS IN ORDER TO 1954 01:06:41,642 --> 01:06:43,711 GROUND A SPECIAL DUTY OF 1955 01:06:43,711 --> 01:06:44,812 RESEARCHERS TO PROVIDE POST 1956 01:06:44,812 --> 01:06:48,416 TRIAL ACCESS TO CARE. 1957 01:06:48,416 --> 01:06:54,422 IS THAT THE ROLE OF A RESEARCHER 1958 01:06:54,422 --> 01:06:55,523 DIFFERENT THAN A CLINICIAN. 1959 01:06:55,523 --> 01:06:58,325 THE PRIMARY GOAL OF RESEARCH IS 1960 01:06:58,325 --> 01:06:59,860 TO CONDUCT SCIENCE TO BENEFIT 1961 01:06:59,860 --> 01:07:00,861 FUTURE PATIENTS. 1962 01:07:00,861 --> 01:07:02,096 THE WELL-BEING OF RESEARCH 1963 01:07:02,096 --> 01:07:03,230 PARTICIPANTS IS NORMALLY A 1964 01:07:03,230 --> 01:07:05,499 SECONDARY GOAL OR A CONSTRAINT 1965 01:07:05,499 --> 01:07:06,634 ON THE PURSUIT OF THAT PRIMARY 1966 01:07:06,634 --> 01:07:08,035 GOAL. 1967 01:07:08,035 --> 01:07:10,071 BY CONTRAST, THE PRIMARY GOAL OF 1968 01:07:10,071 --> 01:07:11,405 CLINICAL CARE IS TO HELP THE 1969 01:07:11,405 --> 01:07:12,373 PATIENT CURRENTLY IN FRONT OF 1970 01:07:12,373 --> 01:07:14,642 THE CLINICIAN. 1971 01:07:14,642 --> 01:07:17,278 INSOFAR AS THE TWO ARE 1972 01:07:17,278 --> 01:07:18,345 DISANALOGOUS THEN, WE WOULD 1973 01:07:18,345 --> 01:07:19,547 EXPECT THE SPECIAL OBLIGATIONS 1974 01:07:19,547 --> 01:07:21,482 OF A RESEARCHER TO BE WEAKER 1975 01:07:21,482 --> 01:07:26,087 THAN THOSE OF A CLINICIAN. 1976 01:07:26,087 --> 01:07:28,155 THE OTHER CHALLENGE IS THAT I'M 1977 01:07:28,155 --> 01:07:30,091 NOT CONVINCED THAT CLINICIANS 1978 01:07:30,091 --> 01:07:31,959 HAVE OPEN-ENDED OBL GAIGS TO 1979 01:07:31,959 --> 01:07:32,727 THEIR PATIENTS. 1980 01:07:32,727 --> 01:07:34,161 AT LEAST IN THE U.S., IT SEEMS 1981 01:07:34,161 --> 01:07:35,763 AS THOUGH WHEN SOMEONE LOSES 1982 01:07:35,763 --> 01:07:36,964 THEIR INSURANCE, THAT PRIMARY 1983 01:07:36,964 --> 01:07:37,932 CARE DOCTOR DOESN'T HAVE AN 1984 01:07:37,932 --> 01:07:39,133 OBLIGATION TO THEN PROVIDE CARE 1985 01:07:39,133 --> 01:07:42,436 TO THEM FOR FREE. 1986 01:07:42,436 --> 01:07:44,572 AND MOST, THERE'S A DUTY NOT TO 1987 01:07:44,572 --> 01:07:46,240 ABANDON ONE'S PATIENT, SO TO 1988 01:07:46,240 --> 01:07:47,608 ENSURE A TRANSITION TO OTHER 1989 01:07:47,608 --> 01:07:48,175 SOURCES OF CARE. 1990 01:07:48,175 --> 01:07:50,344 SO I THINK THIS IS A POSSIBLE 1991 01:07:50,344 --> 01:07:51,979 GROUND FOR POST TRIAL OBL GAIGS 1992 01:07:51,979 --> 01:07:54,048 OF RESEARCHERS, IT'S POTENTIALLY 1993 01:07:54,048 --> 01:07:59,520 A WEAK GROUND. 1994 01:07:59,520 --> 01:08:10,965 THIRD, SOME ETHICISTS SITE A E A 1995 01:08:12,733 --> 01:08:14,268 DUTY -- ONE APPROPRIATE WAY TO 1996 01:08:14,268 --> 01:08:15,970 PROVIDE THIS MIGHT BE BY 1997 01:08:15,970 --> 01:08:16,737 PROVIDING ADDITIONAL MEDICAL 1998 01:08:16,737 --> 01:08:17,938 CARE TO THEM AFTER THE TRIAL IS 1999 01:08:17,938 --> 01:08:23,110 COMPLETE. 2000 01:08:23,110 --> 01:08:24,512 AGAIN, I THINK THIS IS A 2001 01:08:24,512 --> 01:08:27,114 PLAUSIBLE GROUND FOR POST TRIAL 2002 01:08:27,114 --> 01:08:28,549 OBLIGATIONS. 2003 01:08:28,549 --> 01:08:29,750 ONE IMPORTANT CHALLENGE, THOUGH, 2004 01:08:29,750 --> 01:08:31,485 IS IT'S NOT GOING TO GROUND 2005 01:08:31,485 --> 01:08:32,253 OPEN-ENDED OBLIGATIONS AND NOT 2006 01:08:32,253 --> 01:08:34,088 THE SAME OBLIGATIONS IN EVERY 2007 01:08:34,088 --> 01:08:34,755 CASE. 2008 01:08:34,755 --> 01:08:36,257 IF WE'RE RECIPROCATING FOR THE 2009 01:08:36,257 --> 01:08:36,924 CONTRIBUTION OF THE 2010 01:08:36,924 --> 01:08:38,359 PARTICIPANTS, THEN THE EXTENT OF 2011 01:08:38,359 --> 01:08:39,560 THE OBLIGATION TO BENEFIT THEM 2012 01:08:39,560 --> 01:08:41,829 IS GOING TO DEPEND ON THE EXTENT 2013 01:08:41,829 --> 01:08:43,030 OF THEIR CONTRIBUTION. 2014 01:08:43,030 --> 01:08:45,099 AND THIS, I THINK, WE COULD 2015 01:08:45,099 --> 01:08:46,834 ANALYZE IN TERMS OF FACTORS LIKE 2016 01:08:46,834 --> 01:08:49,236 THE BURDEN THEY TOOK ON BY 2017 01:08:49,236 --> 01:08:50,571 PARTICIPATING THE RISKS THEY 2018 01:08:50,571 --> 01:08:55,242 UNDERTOOK AND SO ON. 2019 01:08:55,242 --> 01:08:59,513 NOTNOTE ALSO THAT IT'S NOT JUST 2020 01:08:59,513 --> 01:09:00,514 EVEN MOSTLY RESEARCHERS WHO 2021 01:09:00,514 --> 01:09:01,816 WOULD HAVE THIS OBLIGATION, 2022 01:09:01,816 --> 01:09:03,217 SINCE OTHER PARTIES ALSO BENEFIT 2023 01:09:03,217 --> 01:09:04,185 FROM THE CONTRIBUTION OF 2024 01:09:04,185 --> 01:09:04,652 RESEARCH PARTICIPANTS. 2025 01:09:04,652 --> 01:09:05,920 AT THE VERY LEAST, THE SPONSORS 2026 01:09:05,920 --> 01:09:07,988 OF RESEARCH, LIKE PHARMACEUTICAL 2027 01:09:07,988 --> 01:09:09,056 COMPANIES, WOULD SHARE THE 2028 01:09:09,056 --> 01:09:11,058 OBLIGATION TO RECIPROCATE. 2029 01:09:11,058 --> 01:09:12,893 AND MAYBE GOVERNMENTS WOULD TOO, 2030 01:09:12,893 --> 01:09:13,761 BECAUSE THEY'RE MAKING USE OF 2031 01:09:13,761 --> 01:09:15,162 THE PRODUCTS OF RESEARCH WITHIN 2032 01:09:15,162 --> 01:09:22,403 HEALTHCARE SYSTEMS. 2033 01:09:22,403 --> 01:09:22,837 OKAY. 2034 01:09:22,837 --> 01:09:24,538 FOURTH, A DUTY TO PROVIDE POST 2035 01:09:24,538 --> 01:09:25,639 TRIAL ACCESS MIGHT BE GROUNDED 2036 01:09:25,639 --> 01:09:28,909 IN A DUTY OF B BENEFICENCE, THAT 2037 01:09:28,909 --> 01:09:31,111 IS CALLED THE DUTY TO RESCUE. 2038 01:09:31,111 --> 01:09:32,713 CLASSIC CASE TO ILLUSTRATE THIS 2039 01:09:32,713 --> 01:09:34,615 DUTY IS AS FOLLOWS. 2040 01:09:34,615 --> 01:09:35,783 IMAGINE I'M ON MY WAY TO GIVE 2041 01:09:35,783 --> 01:09:39,820 THIS TALK, I WALK PAST A LARGE 2042 01:09:39,820 --> 01:09:41,789 POND ANDED IN THE POND, I NOTICE 2043 01:09:41,789 --> 01:09:42,756 A CHILD DROWNING. 2044 01:09:42,756 --> 01:09:45,793 NO ONE ELSE IS AROUND. 2045 01:09:45,793 --> 01:09:48,429 NOW I COULD WADE INTO THE POND 2046 01:09:48,429 --> 01:09:49,630 AND SAVE THE CHILD BUT I'M 2047 01:09:49,630 --> 01:09:51,031 WEARING A PRETTY NICE SUIT 2048 01:09:51,031 --> 01:09:52,466 THAT'S GOING TO BE RUINED IF I 2049 01:09:52,466 --> 01:09:53,767 RESCUE THE CHILD, AND THAT'S A 2050 01:09:53,767 --> 01:09:56,503 REASONABLE AMOUNT OF MONEY. 2051 01:09:56,503 --> 01:09:58,172 HERE'S THE POINT. 2052 01:09:58,172 --> 01:10:00,574 EVEN IF IT'S GOING TO RUIN MY 2053 01:10:00,574 --> 01:10:02,443 SUIT, I HAVE A MORAL DUTY TO 2054 01:10:02,443 --> 01:10:07,681 WADE IN AND RESCUE THE CHILD. 2055 01:10:07,681 --> 01:10:10,084 THE ETHICIST PROVIDES A NICE 2056 01:10:10,084 --> 01:10:12,586 STATEMENT OF THIS DUTY. 2057 01:10:12,586 --> 01:10:14,188 HE WRITES, IF IT'S IN OUR POWER 2058 01:10:14,188 --> 01:10:16,156 TO PREVENT SOMETHING BAD FROM 2059 01:10:16,156 --> 01:10:18,025 HAPPENING WITHOUT THEREBY 2060 01:10:18,025 --> 01:10:19,093 SACRIFICING ANYTHING MORALLY 2061 01:10:19,093 --> 01:10:20,794 SIGNIFICANT, WE OUGHT, MORALLY, 2062 01:10:20,794 --> 01:10:23,130 TO DO IT. 2063 01:10:23,130 --> 01:10:25,432 SO NOW APPLYING THIS PRINCIPLE 2064 01:10:25,432 --> 01:10:28,469 TO THE CASE AT HAND, RESEARCHERS 2065 01:10:28,469 --> 01:10:29,803 MAY BE IN A POSITION TO GIVE 2066 01:10:29,803 --> 01:10:32,506 URGENTLY NEEDED TREATMENT, SO 2067 01:10:32,506 --> 01:10:33,941 CONTINUING CARE MIGHT BE 2068 01:10:33,941 --> 01:10:35,142 LIFE-SAVING, FOR EXAMPLE, AND 2069 01:10:35,142 --> 01:10:36,010 RESEARCH PARTICIPANTS MAY NOT 2070 01:10:36,010 --> 01:10:37,511 HAVE ACCESS TO OTHER SOURCES OF 2071 01:10:37,511 --> 01:10:39,880 TREATMENT OUTSIDE OF THE TRIAL. 2072 01:10:39,880 --> 01:10:42,883 SO THE DUTY TO RESCUE MAY GROUND 2073 01:10:42,883 --> 01:10:48,022 POST-TRIAL OBLIGATIONS. 2074 01:10:48,022 --> 01:10:48,989 TWO CHALLENGES SHOULD BE 2075 01:10:48,989 --> 01:10:50,090 MENTIONED REGARDING THE DUTY TO 2076 01:10:50,090 --> 01:10:51,625 RESCUE IN THIS CONTEXT. 2077 01:10:51,625 --> 01:10:53,560 FIRST, IT WILL APPLY ONLY IN 2078 01:10:53,560 --> 01:10:54,561 CASES WHERE PROVIDING THE 2079 01:10:54,561 --> 01:10:56,931 INTERVENTION IS RELATIVELY LOW 2080 01:10:56,931 --> 01:10:57,598 COST. 2081 01:10:57,598 --> 01:10:59,600 AND THE BENEFIT IT PROVIDES IS 2082 01:10:59,600 --> 01:10:59,900 VERY HIGH. 2083 01:10:59,900 --> 01:11:01,635 BUT REALLY EXPENSIVE 2084 01:11:01,635 --> 01:11:02,503 INTERVENTIONS OR INTERVENTIONS 2085 01:11:02,503 --> 01:11:05,773 THAT PROVIDE ONLY MARGINAL 2086 01:11:05,773 --> 01:11:06,974 BENEFIT, THIS WON'T JUSTIFY A 2087 01:11:06,974 --> 01:11:08,175 DUTY TO PROVIDE CARE. 2088 01:11:08,175 --> 01:11:09,610 WE NEED CASES THAT ARE ANALOGOUS 2089 01:11:09,610 --> 01:11:12,012 TO THE RESCUING OF THE DROWNING 2090 01:11:12,012 --> 01:11:13,847 CHILD. 2091 01:11:13,847 --> 01:11:17,785 SECOND, THE DUTY TO RESCUE -- 2092 01:11:17,785 --> 01:11:21,588 THAT SOMEONE CAN PROVIDE A GREAT 2093 01:11:21,588 --> 01:11:24,558 BENEFIT THAT'S NOT SPECIFIC TO 2094 01:11:24,558 --> 01:11:25,426 RESEARCH SUBJECTS. 2095 01:11:25,426 --> 01:11:27,728 SO FOR EXAMPLE, IF THE 2096 01:11:27,728 --> 01:11:29,129 RESEARCHERS IN A PARTICULAR 2097 01:11:29,129 --> 01:11:29,830 COUNTRY ARE STUDYING HEART 2098 01:11:29,830 --> 01:11:33,400 DISEASE BUT THE LOCAL COMMUNITY 2099 01:11:33,400 --> 01:11:36,904 NEEDS DESPERATELY 2100 01:11:36,904 --> 01:11:37,571 ANTIMALARIALS -- COULD MEAN THEY 2101 01:11:37,571 --> 01:11:39,940 HAVE A DUTY TO RESCUE EVEN TO 2102 01:11:39,940 --> 01:11:41,141 PEOPLE WHO ARE NOT IN THEIR 2103 01:11:41,141 --> 01:11:42,242 RESEARCH STUDY. 2104 01:11:42,242 --> 01:11:44,845 AND CLINICIANS, NGOs, 2105 01:11:44,845 --> 01:11:45,846 GOVERNMENT AGENCIES, ANYONE ELSE 2106 01:11:45,846 --> 01:11:47,581 IN A PROGRESSES TO PROVIDE AID 2107 01:11:47,581 --> 01:11:49,116 CAN EQUALLY HAVE A DUTY TO 2108 01:11:49,116 --> 01:11:50,384 RESCUE, SO IT'S NOT JUST 2109 01:11:50,384 --> 01:11:59,026 RESEARCHERS. 2110 01:11:59,026 --> 01:12:00,561 THIS TABLE SUGGESTS WHY THERE 2111 01:12:00,561 --> 01:12:02,763 MIGHT BE AN ETHICAL DUTY TO 2112 01:12:02,763 --> 01:12:05,265 PROVIDE CARE TO POST TRIAL 2113 01:12:05,265 --> 01:12:07,134 PARTICIPANTS WHO MIGHT NOT HAVE 2114 01:12:07,134 --> 01:12:10,938 ACCESS TO CARE OTHERWISE. 2115 01:12:10,938 --> 01:12:14,241 -- SPECIAL RELATIONSHIP BETWEEN 2116 01:12:14,241 --> 01:12:18,379 [INAUDIBLE] DUTY OF RECIPROCITY 2117 01:12:18,379 --> 01:12:20,247 MIGHT GROUND OBLIGATIONS TO 2118 01:12:20,247 --> 01:12:20,881 RESEARCHERS. 2119 01:12:20,881 --> 01:12:21,749 THESE DUTIES ARE GOING TO BE 2120 01:12:21,749 --> 01:12:23,083 LIMITED IN THEIR EXTENT. 2121 01:12:23,083 --> 01:12:24,985 THE DUTY TO RESCUE MAY 2122 01:12:24,985 --> 01:12:27,988 OCCASIONALLY APPLY, BUT IT WON'T 2123 01:12:27,988 --> 01:12:29,490 BE LIMITED -- SORRY -- BUT IT 2124 01:12:29,490 --> 01:12:33,427 WILL BE LIMITED TO URGENT NEEDS 2125 01:12:33,427 --> 01:12:35,829 AND IT WON'T BE LIMITED JUST TO 2126 01:12:35,829 --> 01:12:41,735 PARTICIPANTS. 2127 01:12:41,735 --> 01:12:43,270 SO SOME KEY POINTS I WANT TO 2128 01:12:43,270 --> 01:12:46,440 EMPHASIZE FROM THIS ETHICAL 2129 01:12:46,440 --> 01:12:54,081 ANALYSIS OF POST TRIAL ACCESS. 2130 01:12:54,081 --> 01:12:55,482 RESEARCHERS THEMSELVES DON'T 2131 01:12:55,482 --> 01:12:56,917 HAVE AN OBLIGATION TO CONTINUE 2132 01:12:56,917 --> 01:12:58,318 PROVIDING CARE FOR THE NEXT 30 2133 01:12:58,318 --> 01:13:01,922 YEARS, FOR EXAMPLE. 2134 01:13:01,922 --> 01:13:03,023 FURTHER, NONE OF THE 2135 01:13:03,023 --> 01:13:04,024 JUSTIFICATIONS IMPLY THAT THE 2136 01:13:04,024 --> 01:13:05,659 BEST OR THE ONLY WAY TO 2137 01:13:05,659 --> 01:13:07,628 DISCHARGE RESEARCHERS POST TRIAL 2138 01:13:07,628 --> 01:13:09,563 OBLIGATIONS IS BY PROVIDING THE 2139 01:13:09,563 --> 01:13:11,098 STUDY INTERVENTION. 2140 01:13:11,098 --> 01:13:13,067 IT MIGHT BE IN SOME CASES LIKE 2141 01:13:13,067 --> 01:13:14,368 WITH THE ANTIRETROVIRAL STUDY, 2142 01:13:14,368 --> 01:13:16,370 BUT IN OTHER CASES, ESPECIALLY 2143 01:13:16,370 --> 01:13:17,538 WITH STUDIES WHERE THE STANDARD 2144 01:13:17,538 --> 01:13:21,041 OF CARE IN THE TRIAL IS HIGHER 2145 01:13:21,041 --> 01:13:25,179 THAN OUTSIDE -- OTHER CARE 2146 01:13:25,179 --> 01:13:27,581 OUTSIDE MIGHT BE MORE VALUABLE. 2147 01:13:27,581 --> 01:13:28,682 FINALLY, THIS IS NOT A MATTER 2148 01:13:28,682 --> 01:13:30,317 JUST FOR THE RESEARCHERS. 2149 01:13:30,317 --> 01:13:31,819 WE NEED TO CONSIDER THE DUTIES 2150 01:13:31,819 --> 01:13:32,619 OF MULTIPLE PARTIES, INCLUDING 2151 01:13:32,619 --> 01:13:34,455 THE RESEARCHERS BUT ALSO 2152 01:13:34,455 --> 01:13:35,622 SPONSORS, NATIONAL GOVERNMENTS 2153 01:13:35,622 --> 01:13:37,925 WHO ARE RESPONSIBLE FOR 2154 01:13:37,925 --> 01:13:38,926 PROVIDING CARE FOR THEIR 2155 01:13:38,926 --> 01:13:46,467 CITIZENS. 2156 01:13:46,467 --> 01:13:47,434 CURRENT PRACTICE WITH REGARD TO 2157 01:13:47,434 --> 01:13:49,403 PROVIDING POST TRIAL ACCESS TO 2158 01:13:49,403 --> 01:13:52,239 EXPERIMENTAL PRODUCTS IS HIGHLY 2159 01:13:52,239 --> 01:13:55,642 VARIABLE. 2160 01:13:55,642 --> 01:13:57,377 MANY RESEARCH AT SITES AROUND 2161 01:13:57,377 --> 01:14:00,114 THE WORLD, THE FOCUS IS ON 2162 01:14:00,114 --> 01:14:01,515 TRANSITIONING PARTICIPANTS WHO 2163 01:14:01,515 --> 01:14:02,516 TILL NEED CARE TO OTHER SOURCES 2164 01:14:02,516 --> 01:14:02,950 OF CARE. 2165 01:14:02,950 --> 01:14:04,585 SO THESE MIGHT BE NATIONAL 2166 01:14:04,585 --> 01:14:06,220 HEALTHCARE SYSTEMS OR THERE 2167 01:14:06,220 --> 01:14:07,754 MIGHT BE OTHER STUDIES FOR WHICH 2168 01:14:07,754 --> 01:14:10,491 PARTICIPANTS ARE NOW ELIGIBLE. 2169 01:14:10,491 --> 01:14:11,892 RESEARCH SITES MAY, THEREFORE, 2170 01:14:11,892 --> 01:14:13,227 PROVIDE SHORT TERM CARE DURING A 2171 01:14:13,227 --> 01:14:14,294 TRANSITION PERIOD BUT NOT FOR 2172 01:14:14,294 --> 01:14:16,063 EXTENDED PERIODS OF TIME. 2173 01:14:16,063 --> 01:14:18,665 SOME COMPANIES HAVE ENSURED 2174 01:14:18,665 --> 01:14:20,300 CONTINUED ACCESS TO BENEFICIAL 2175 01:14:20,300 --> 01:14:21,168 TREATMENTS FOR SERIOUS 2176 01:14:21,168 --> 01:14:22,936 CONDITIONS BY RUNNING OPEN LABEL 2177 01:14:22,936 --> 01:14:24,104 EXTENSION STUDIES. 2178 01:14:24,104 --> 01:14:25,472 AGAIN, THOUGH, THIS IS CERTAINLY 2179 01:14:25,472 --> 01:14:31,545 NOT A CONSISTENT PRACTICE. 2180 01:14:31,545 --> 01:14:33,714 IN HIGH-INCOME COUNTRIES, IT'S 2181 01:14:33,714 --> 01:14:34,882 LIKELY -- THROUGH EXPANDED 2182 01:14:34,882 --> 01:14:36,450 ACCESS PROGRAMS OR, IN THE U.S., 2183 01:14:36,450 --> 01:14:37,985 COMPASSIONATE USE PROGRAMS UNTIL 2184 01:14:37,985 --> 01:14:41,388 DRUGS GET LICENSED. 2185 01:14:41,388 --> 01:14:42,422 FINALLY, PERCEIVED OBLIGATIONS 2186 01:14:42,422 --> 01:14:45,859 TO ENSURE POST TRIAL ACCESS HAVE 2187 01:14:45,859 --> 01:14:47,494 ALSO LED PUBLIC AND PRIVATE 2188 01:14:47,494 --> 01:14:49,096 SPONSORS TO AVOID CARRYING OUT 2189 01:14:49,096 --> 01:14:51,732 RESEARCH IN CONTEXT WHERE 2190 01:14:51,732 --> 01:14:52,833 PATIENTS DON'T HAVE ACCESS TO 2191 01:14:52,833 --> 01:14:53,634 EFFECTIVE CARE OUTSIDE OF THE 2192 01:14:53,634 --> 01:14:54,168 TRIAL. 2193 01:14:54,168 --> 01:14:55,035 I WANT TO FLAG THIS BECAUSE I 2194 01:14:55,035 --> 01:14:58,639 THINK IT'S A POTENTIALLY 2195 01:14:58,639 --> 01:14:59,406 UNFORTUNATE EFFECT OF DEMANDING 2196 01:14:59,406 --> 01:15:05,612 THAT RESEARCH SPONSORS PROVIDE 2197 01:15:05,612 --> 01:15:06,380 POST TRIAL CARE. 2198 01:15:06,380 --> 01:15:08,215 POTENTIAL FOR PEOPLE WHO ALREADY 2199 01:15:08,215 --> 01:15:10,217 LACK ACCESS TO CARE TO GET 2200 01:15:10,217 --> 01:15:11,518 PENALIZED AGAIN BY NOT GETTING 2201 01:15:11,518 --> 01:15:12,686 ACCESS TO CARE THROUGH RESEARCH. 2202 01:15:12,686 --> 01:15:15,322 SO PUSHING FOR POST TRIAL ACCESS 2203 01:15:15,322 --> 01:15:25,599 CUTS BOTH WAYS. 2204 01:15:26,767 --> 01:15:28,769 LET ME RETURN NOW TO THE CASE TO 2205 01:15:28,769 --> 01:15:30,404 WHICH WE BEGAN. 2206 01:15:30,404 --> 01:15:34,007 THE DRUGS IN QUESTION -- THEY 2207 01:15:34,007 --> 01:15:35,108 AGREED TO PROVIDE THE DRUGS THAT 2208 01:15:35,108 --> 01:15:36,944 WERE NOT LICENSED IN COUNTRY FOR 2209 01:15:36,944 --> 01:15:38,278 FREE, BUT THEY DID NOT WANT TO 2210 01:15:38,278 --> 01:15:39,813 BE INVOLVED WITH DISTRIBUTION OF 2211 01:15:39,813 --> 01:15:40,113 THE DRUGS. 2212 01:15:40,113 --> 01:15:41,048 THAT WOULD HAVE TO BE DONE BY 2213 01:15:41,048 --> 01:15:43,951 THE RESEARCH TEAM. 2214 01:15:43,951 --> 01:15:45,686 THE SPONSOR, ON THE OTHER HAND, 2215 01:15:45,686 --> 01:15:47,120 WAS NOT ALLOWED TO PROVIDE 2216 01:15:47,120 --> 01:15:49,423 CLINICAL CARE OUTSIDE OF A 2217 01:15:49,423 --> 01:15:50,490 RESEARCH STUDY. 2218 01:15:50,490 --> 01:15:52,226 SO THEN AFTER CONSIDERABLE 2219 01:15:52,226 --> 01:15:53,860 NEGOTIATION, THE FOLLOWING 2220 01:15:53,860 --> 01:15:55,929 ARRANGEMENT WAS REACHED. 2221 01:15:55,929 --> 01:15:57,264 RESEARCHERS DESIGNED AN 2222 01:15:57,264 --> 01:15:58,865 EXTENSION STUDY TO PROVIDE THE 2223 01:15:58,865 --> 01:15:59,833 MANUFACTURER'S DRUGS WITH THE 2224 01:15:59,833 --> 01:16:01,935 GOAL OF TESTING WHETHER THE 2225 01:16:01,935 --> 01:16:03,036 PARTICIPANTS REMAINED VIRALLY 2226 01:16:03,036 --> 01:16:03,904 SUPPRESSED FOR TWO FURTHER 2227 01:16:03,904 --> 01:16:04,538 YEARS. 2228 01:16:04,538 --> 01:16:06,173 AND THE IDEA WAS THAT TWO YEARS 2229 01:16:06,173 --> 01:16:07,407 SHOULD BE ENOUGH TIME FOR THE 2230 01:16:07,407 --> 01:16:09,209 DRUGS TO BE LICENSED IN COUNTRY 2231 01:16:09,209 --> 01:16:10,444 AND PROVIDED TO PATIENT THROUGH 2232 01:16:10,444 --> 01:16:12,846 NATIONAL PROGRAMS. 2233 01:16:12,846 --> 01:16:15,148 I'LL LEAVE YOU TO THINK ABOUT 2234 01:16:15,148 --> 01:16:16,750 WHETHER THAT WAS A SUFFICIENT 2235 01:16:16,750 --> 01:16:21,054 ARRANGEMENT. 2236 01:16:21,054 --> 01:16:22,623 SO I'M GOING TO NOW LEAVE BEHIND 2237 01:16:22,623 --> 01:16:23,790 THE ISSUE OF WHAT CARE IS OWED 2238 01:16:23,790 --> 01:16:26,193 TO PARTICIPANT WHO LEAVE A TRIAL 2239 01:16:26,193 --> 01:16:28,161 STILL IN NEED OF CARE AND TURN 2240 01:16:28,161 --> 01:16:29,463 TO THE ISSUE OF WHAT IS OWED TO 2241 01:16:29,463 --> 01:16:30,464 THE COMMUNITIES THAT HOST 2242 01:16:30,464 --> 01:16:31,431 RESEARCH. 2243 01:16:31,431 --> 01:16:33,300 AND TO A LARGE EXTENT, THIS 2244 01:16:33,300 --> 01:16:34,835 DISCUSSION IS FOCUSED ON THE 2245 01:16:34,835 --> 01:16:36,370 ISSUE OF MAKING STUDY 2246 01:16:36,370 --> 01:16:39,539 INTERVENTIONS AVAILABLE TO HOST 2247 01:16:39,539 --> 01:16:43,243 COMMUNITIES. 2248 01:16:43,243 --> 01:16:44,911 NOW THERE ARE A FEW GUIDELINES 2249 01:16:44,911 --> 01:16:45,779 AND REGULATIONS THAT SPEAK TO 2250 01:16:45,779 --> 01:16:46,313 THIS QUESTION. 2251 01:16:46,313 --> 01:16:47,614 TWO OF THE MOST IMPORTANT SETS 2252 01:16:47,614 --> 01:16:48,615 OF INTERNATIONAL GUIDELINES DO 2253 01:16:48,615 --> 01:16:51,551 HAVE RELEVANT CLAUSES. 2254 01:16:51,551 --> 01:16:53,053 HERE'S THE DECLARATION OF 2255 01:16:53,053 --> 01:16:54,721 HELSINKI AGAIN. 2256 01:16:54,721 --> 01:16:56,890 WHICH SAYS, MEDICAL RESEARCH 2257 01:16:56,890 --> 01:16:58,859 WITH A VULNERABLE GROUP IS ONLY 2258 01:16:58,859 --> 01:17:00,294 JUSTIFIED IF THE RESEARCH IS 2259 01:17:00,294 --> 01:17:01,395 RESPONSIVE TO THE HEALTH NEEDS 2260 01:17:01,395 --> 01:17:03,130 OR PRIORITIES OF THIS GROUP AND 2261 01:17:03,130 --> 01:17:04,531 THE RESEARCH CANNOT BE CARRIED 2262 01:17:04,531 --> 01:17:06,833 OUT IN A NON-VULNERABLE GROUP. 2263 01:17:06,833 --> 01:17:08,101 IN ADDITION, THIS GROUP SHOULD 2264 01:17:08,101 --> 01:17:09,569 STAND TO BENEFIT FROM THE 2265 01:17:09,569 --> 01:17:13,173 KNOWLEDGE, PRACTICES OR 2266 01:17:13,173 --> 01:17:13,974 INTERVENTIONS THAT RESULT FROM 2267 01:17:13,974 --> 01:17:19,212 THE RESEARCH. 2268 01:17:19,212 --> 01:17:21,148 THE SECOND PIECE OF EXTREMELY 2269 01:17:21,148 --> 01:17:23,350 INFLUENTIAL NATIONAL GUIDANCE 2270 01:17:23,350 --> 01:17:29,122 COMES FROM THE COUNCIL -- THEIR 2271 01:17:29,122 --> 01:17:31,758 2002 GUIDELINES SAID BEFORE 2272 01:17:31,758 --> 01:17:32,626 UNDERTAKING RESEARCH IN A 2273 01:17:32,626 --> 01:17:33,493 POPULATION OR COMMUNITY WITH 2274 01:17:33,493 --> 01:17:35,462 LIMITED RESOURCES, THE SPONSOR 2275 01:17:35,462 --> 01:17:37,998 AND THE INVESTIGATOR MUST MAKE 2276 01:17:37,998 --> 01:17:39,066 EVERY EFFORT TO ENSURE THAT THE 2277 01:17:39,066 --> 01:17:40,167 RESEARCH IS RESPONSIVE TO THE 2278 01:17:40,167 --> 01:17:41,234 HEALTH NEEDS AND THE PRIORITIES 2279 01:17:41,234 --> 01:17:42,669 OF THE POPULATION OR COMMUNITY 2280 01:17:42,669 --> 01:17:44,004 IN WHICH IT IS TO BE CARRIED 2281 01:17:44,004 --> 01:17:46,540 OUT, AND ANY INTERVENTION OR 2282 01:17:46,540 --> 01:17:47,741 PRODUCT DEVELOPED OR KNOWLEDGE 2283 01:17:47,741 --> 01:17:48,909 GENERATED WILL BE MADE 2284 01:17:48,909 --> 01:17:49,576 REASONABLY AVAILABLE FOR THE 2285 01:17:49,576 --> 01:17:50,577 BENEFIT OF THAT POPULATION OR 2286 01:17:50,577 --> 01:17:59,052 COMMUNITY. 2287 01:17:59,052 --> 01:18:01,355 SO WHAT'S THE REASONING BEHIND 2288 01:18:01,355 --> 01:18:03,757 THESE RECOMMENDATIONS THAT THE 2289 01:18:03,757 --> 01:18:04,991 POPULATION OR COMMUNITY SHOULD 2290 01:18:04,991 --> 01:18:06,827 GUESS ACCESS TO THE PRODUCTS OR 2291 01:18:06,827 --> 01:18:07,594 RESEARCH? 2292 01:18:07,594 --> 01:18:09,563 I THINK THE UNDERLYING CONCERN 2293 01:18:09,563 --> 01:18:10,764 ABOUT CONDUCTING RESEARCH WHERE 2294 01:18:10,764 --> 01:18:12,966 IT'S NOT EXPECTED THAT THE HOST 2295 01:18:12,966 --> 01:18:14,267 COMMUNITY WOULD GET ACCESS TO 2296 01:18:14,267 --> 01:18:16,236 THE PRODUCT OF RESEARCH IS A 2297 01:18:16,236 --> 01:18:21,475 CONCERN ABOUT EXPLOITATION. 2298 01:18:21,475 --> 01:18:23,009 WHAT DOES IT MEAN FOR ONE PARTY 2299 01:18:23,009 --> 01:18:26,079 TO EXPLOIT ANOTHER OR FOR A 2300 01:18:26,079 --> 01:18:27,714 TRANSACTION TO BE EXPLOITED 2301 01:18:27,714 --> 01:18:28,515 UPON? 2302 01:18:28,515 --> 01:18:31,284 A STANDARD ANALYSIS DEFINES 2303 01:18:31,284 --> 01:18:33,120 EXPLOITATION ABOUT THIS. 2304 01:18:33,120 --> 01:18:35,522 X EXPLOITS Y WHEN X TAKES UNFAIR 2305 01:18:35,522 --> 01:18:36,523 ADVANTAGE OF Y'S SITUATION. 2306 01:18:36,523 --> 01:18:38,258 SO THE PARTY DOING THE 2307 01:18:38,258 --> 01:18:40,127 EXPLOITING TAKES ADVANTAGE OF 2308 01:18:40,127 --> 01:18:41,328 SOME VULNERABILITY OF THE OTHER 2309 01:18:41,328 --> 01:18:42,362 PARTY IN ORDER TO GET MORE OUT 2310 01:18:42,362 --> 01:18:45,732 OF HIM THAN SHE DESERVES. 2311 01:18:45,732 --> 01:18:47,667 SO FOR EXAMPLE, SUPPOSE MY CAR 2312 01:18:47,667 --> 01:18:50,504 GETS STUCK IN THE MUD IN A 2313 01:18:50,504 --> 01:18:52,272 REMOTE -- ON A REMOTE COUNTRY 2314 01:18:52,272 --> 01:18:54,141 ROAD AND PHYLLIS IS THE ONLY 2315 01:18:54,141 --> 01:18:55,876 PERSON WITH A TOW TRUCK. 2316 01:18:55,876 --> 01:18:57,711 I MIGHT BE VULNERABLE BECAUSE I 2317 01:18:57,711 --> 01:18:59,146 HAVE NO OTHER WAY TO GET OUT OF 2318 01:18:59,146 --> 01:18:59,613 THE MUD. 2319 01:18:59,613 --> 01:19:00,814 IT MIGHT BE MILES AND MILES TO 2320 01:19:00,814 --> 01:19:02,215 THE NEAREST TOWN. 2321 01:19:02,215 --> 01:19:03,517 I WON'T BE ABLE TO GET THERE 2322 01:19:03,517 --> 01:19:04,184 WITHOUT MY CAR. 2323 01:19:04,184 --> 01:19:08,188 THERE'S NO OTHER PROS PEBT OF PF 2324 01:19:08,188 --> 01:19:09,022 RESCUE AND SO ON. 2325 01:19:09,022 --> 01:19:11,258 SUPPOSE THAT SHE CHARGES ME 2326 01:19:11,258 --> 01:19:13,427 $1,000 FOR 10 MINUTES' WORK TO 2327 01:19:13,427 --> 01:19:14,961 PULL ME OUT. 2328 01:19:14,961 --> 01:19:16,630 ASSUME ALSO I'M CARRYING $1,000 2329 01:19:16,630 --> 01:19:18,231 WITH ME IN CASH AND DON'T ASK 2330 01:19:18,231 --> 01:19:19,299 WHY THIS WOULD BE THE CASE. 2331 01:19:19,299 --> 01:19:20,834 NOW I MIGHT BE WILLING TO PAY 2332 01:19:20,834 --> 01:19:22,903 THAT MUCH, BUT SHE SURELY IS 2333 01:19:22,903 --> 01:19:25,539 TREATING ME WRONGLY. 2334 01:19:25,539 --> 01:19:26,873 AND THE WRONG HERE, I THINK, IS 2335 01:19:26,873 --> 01:19:28,708 THAT SHE'S EXPLOITING ME, SHE 2336 01:19:28,708 --> 01:19:30,210 TAKES UNFAIR ADVANTAGE OF MY 2337 01:19:30,210 --> 01:19:32,212 SITUATION TO GET MORE OUT OF HER 2338 01:19:32,212 --> 01:19:36,049 INTERACTION THAN SHE SHOULD. 2339 01:19:36,049 --> 01:19:37,350 NOW, NOTICE A COUPLE OF 2340 01:19:37,350 --> 01:19:39,453 IMPORTANT POINTS ABOUT 2341 01:19:39,453 --> 01:19:40,554 EXPLOITATION THAT THIS EXAMPLE 2342 01:19:40,554 --> 01:19:44,791 BRINGS OUT. 2343 01:19:44,791 --> 01:19:46,293 DOES EXPLOITATION HAVE TO BE 2344 01:19:46,293 --> 01:19:47,627 HARMFUL TO THE PERSON WHO'S 2345 01:19:47,627 --> 01:19:47,894 EXPLOITED? 2346 01:19:47,894 --> 01:19:50,263 NO, I'M NOT HARMED BY PHYLLIS 2347 01:19:50,263 --> 01:19:51,598 EXPLOITING ME, I'M BENEFITED. 2348 01:19:51,598 --> 01:19:53,800 THAT'S WHY I AGREE TO PAY THE 2349 01:19:53,800 --> 01:19:56,736 THOUSAND BUCKS. 2350 01:19:56,736 --> 01:19:58,905 I DON'T SEE THIS IS GOING TO BE 2351 01:19:58,905 --> 01:20:01,208 A POTENTIALLY LIFE SAVING 2352 01:20:01,208 --> 01:20:01,875 RESCUE. 2353 01:20:01,875 --> 01:20:04,177 DOES EXPLOITATION INVOLVE VALID 2354 01:20:04,177 --> 01:20:05,712 CONSENT? 2355 01:20:05,712 --> 01:20:07,781 I MIGHT -- I MIGHT DO IT 2356 01:20:07,781 --> 01:20:09,082 VOLUNTARILY BUT STILL BE 2357 01:20:09,082 --> 01:20:09,516 EXPLOITED. 2358 01:20:09,516 --> 01:20:11,184 IT'S POSSIBLE TO HAVE WHAT'S 2359 01:20:11,184 --> 01:20:16,089 CALLED MUTUALLY ADVANTAGEOUS 2360 01:20:16,089 --> 01:20:17,090 CONSENSUAL EXPLOITATION. 2361 01:20:17,090 --> 01:20:17,524 OKAY. 2362 01:20:17,524 --> 01:20:19,292 SO WE RETURN NOW TO THE QUESTION 2363 01:20:19,292 --> 01:20:20,160 OF EXPLOITATION OF COMMUNITIES 2364 01:20:20,160 --> 01:20:21,328 THAT HOST RESEARCH. 2365 01:20:21,328 --> 01:20:23,196 THEY WILL BE EXPLOITED IF THEY 2366 01:20:23,196 --> 01:20:24,631 RECEIVE AN UNFAIR LEVEL OF 2367 01:20:24,631 --> 01:20:26,166 BENEFITS FROM THE RESEARCH 2368 01:20:26,166 --> 01:20:28,668 RELATIVE TO THE BURDENS OF 2369 01:20:28,668 --> 01:20:29,769 HOSTING THE RESEARCH, AND 2370 01:20:29,769 --> 01:20:32,405 RELATIVE TO THE GAINS TO OTHER 2371 01:20:32,405 --> 01:20:34,040 PARTIES. 2372 01:20:34,040 --> 01:20:35,342 GAINS TO OTHER PARTIES MIGHT BE 2373 01:20:35,342 --> 01:20:36,977 COMPANIES WHO PROFIT FROM 2374 01:20:36,977 --> 01:20:38,945 DEVELOPING A SUCCESSFUL DRUG, 2375 01:20:38,945 --> 01:20:40,814 PATIENTS IN OTHER COUNTRIES 2376 01:20:40,814 --> 01:20:41,681 BENEFIT FROM THE DRUG BEING 2377 01:20:41,681 --> 01:20:45,719 DEVELOPED AND SO ON. 2378 01:20:45,719 --> 01:20:47,821 WHAT SOURCE OF BURDENS MIGHT 2379 01:20:47,821 --> 01:20:48,822 COMMUNITIES FACE OVER AND ABOVE 2380 01:20:48,822 --> 01:20:50,457 THE RISKS AND BURDENS FACED BY 2381 01:20:50,457 --> 01:20:51,324 RESEARCH PARTICIPANTS 2382 01:20:51,324 --> 01:20:53,927 THEMSELVES? 2383 01:20:53,927 --> 01:20:55,595 WELL, THE RESEARCH MAY MAKE USE 2384 01:20:55,595 --> 01:20:58,198 OF CLINICAL FACILITIES THAT ARE 2385 01:20:58,198 --> 01:21:00,066 SCARCE, LOCAL HEALTHCARE 2386 01:21:00,066 --> 01:21:01,067 PRACTITIONERS ARE HIRED FOR THE 2387 01:21:01,067 --> 01:21:02,903 RESEARCH, IT MAY ATTRACT THEM 2388 01:21:02,903 --> 01:21:06,072 AWAY FROM THE PUBLIC HEALTH 2389 01:21:06,072 --> 01:21:07,274 SYSTEM AND CONTRIBUTE TO A LOCAL 2390 01:21:07,274 --> 01:21:07,941 BRAIN DRAIN. 2391 01:21:07,941 --> 01:21:09,142 THERE'S A LIMIT OF HOW MUCH 2392 01:21:09,142 --> 01:21:10,677 RESEARCH CAN TAKE PLACE AT ANY 2393 01:21:10,677 --> 01:21:11,778 ONE SITE, SO RAO SEARCH THAT 2394 01:21:11,778 --> 01:21:13,613 DOESN'T HAVE HIGH SOCIAL VALUE 2395 01:21:13,613 --> 01:21:14,948 MIGHT CROWD OUT MORE VALUABLE 2396 01:21:14,948 --> 01:21:18,785 RESEARCH. 2397 01:21:18,785 --> 01:21:19,986 NOW OF COURSE THERE ARE POSSIBLE 2398 01:21:19,986 --> 01:21:21,388 BENEFITS TO HOST COMMUNITIES 2399 01:21:21,388 --> 01:21:21,721 TOO. 2400 01:21:21,721 --> 01:21:24,558 SO A RESEARCH STUDY MIGHT -- 2401 01:21:24,558 --> 01:21:25,458 LOCAL HEALTH PROBLEMS THAT ARE 2402 01:21:25,458 --> 01:21:28,962 IMPORTANT TO THE HOST COMMUNITY, 2403 01:21:28,962 --> 01:21:29,963 SO FOR EXAMPLE, ANSWERED 2404 01:21:29,963 --> 01:21:31,097 QUESTIONS ABOUT THE EPIDEMIOLOGY 2405 01:21:31,097 --> 01:21:34,401 OF A DISEASE, PUBLIC INFORMATION 2406 01:21:34,401 --> 01:21:36,503 CAMPAIGNS. 2407 01:21:36,503 --> 01:21:37,904 THE RESEARCH MAY BE PART OF THE 2408 01:21:37,904 --> 01:21:39,539 PROCESS OF DEVELOPING NEW 2409 01:21:39,539 --> 01:21:40,874 MEDICAL INTERVENTIONS FOR THE 2410 01:21:40,874 --> 01:21:41,975 POPULATION THAT WILL BENEFIT 2411 01:21:41,975 --> 01:21:46,012 PATIENTS IN THAT COMMUNITY. 2412 01:21:46,012 --> 01:21:49,516 RATHER THAN TAKING [INAUDIBLE]. 2413 01:21:49,516 --> 01:21:51,251 THE INFRASTRUCTURE THAT'S USED 2414 01:21:51,251 --> 01:21:54,754 FOR THE -- LOCAL HEALTHCARE 2415 01:21:54,754 --> 01:21:55,956 WORKERS MAY GET ADDITIONAL 2416 01:21:55,956 --> 01:21:58,792 TRAINING. 2417 01:21:58,792 --> 01:21:59,459 OKAY. 2418 01:21:59,459 --> 01:22:02,195 SO REQUIRING THAT RESEARCH ONLY 2419 01:22:02,195 --> 01:22:03,330 BE CONDUCTED WHEN THE PRODUCTS 2420 01:22:03,330 --> 01:22:04,931 OF RESEARCH WILL BE MADE 2421 01:22:04,931 --> 01:22:07,867 REASONABLY AVAILABLE TO PATIENTS 2422 01:22:07,867 --> 01:22:09,769 IN HOST COMMUNITIES, I THINK IS 2423 01:22:09,769 --> 01:22:12,038 TRYING TO AVOID EXPLOITATION, BY 2424 01:22:12,038 --> 01:22:13,006 ENSURING THAT THE BENEFITS OF 2425 01:22:13,006 --> 01:22:14,007 HOST COMMUNITY ARE FAIR, GIVEN 2426 01:22:14,007 --> 01:22:15,542 THE BENEFITS THAT OTHER PARTIES 2427 01:22:15,542 --> 01:22:16,743 RECEIVE, GIVEN THE BURDENS THAT 2428 01:22:16,743 --> 01:22:17,944 ARE TAKEN ON BY HOSTING 2429 01:22:17,944 --> 01:22:19,946 RESEARCH. 2430 01:22:19,946 --> 01:22:23,216 THE IDEA I TAKE IT IS THAT THE 2431 01:22:23,216 --> 01:22:24,317 BENEFITS OF GETTING ACCESS TO 2432 01:22:24,317 --> 01:22:25,385 NEW INTERVENTIONS THAT ARE 2433 01:22:25,385 --> 01:22:26,286 IMPORTANT FOR THE HEALTH OF 2434 01:22:26,286 --> 01:22:27,020 PEOPLE IN THE COMMUNITY IS 2435 01:22:27,020 --> 01:22:29,022 NORMALLY A SUFFICIENT BENEFIT TO 2436 01:22:29,022 --> 01:22:33,526 AVOID EXPLOITATION. 2437 01:22:33,526 --> 01:22:35,695 FURTHER, THE REQUIREMENT FOR 2438 01:22:35,695 --> 01:22:37,764 REASONABLE AVAILABILITY HAS COME 2439 01:22:37,764 --> 01:22:38,965 IN FOR SOME CRITICISM. 2440 01:22:38,965 --> 01:22:40,066 FOR ONE IT'S NOT GOING TO BE 2441 01:22:40,066 --> 01:22:41,935 RELEVANT TO SOME RESEARCH. 2442 01:22:41,935 --> 01:22:43,470 SO FOR EXAMPLE, IT DOESN'T APPLY 2443 01:22:43,470 --> 01:22:45,105 TO PHASE ONE TRIALS SINCE 2444 01:22:45,105 --> 01:22:46,206 NORMALLY THE PRODUCTS THAT MAKE 2445 01:22:46,206 --> 01:22:47,507 IT THROUGH PHASE ONE HAVE NOT 2446 01:22:47,507 --> 01:22:49,476 YET SHOWN EFFICACY. 2447 01:22:49,476 --> 01:22:52,212 IT WON'T APPLY TO EMDEEM LOGICAL 2448 01:22:52,212 --> 01:22:53,413 STUDIES SINCE THERE'S NO 2449 01:22:53,413 --> 01:22:53,947 ASSOCIATED PRODUCT. 2450 01:22:53,947 --> 01:22:56,149 SOMETIMES THERE WILL BE NO 2451 01:22:56,149 --> 01:22:57,884 BENEFITS BY MAKING AN 2452 01:22:57,884 --> 01:22:58,451 EXPERIMENTAL INTERVENTION 2453 01:22:58,451 --> 01:22:58,785 AVAILABLE. 2454 01:22:58,785 --> 01:23:00,186 FOR EXAMPLE, IF IT'S NOT SHOWN 2455 01:23:00,186 --> 01:23:05,025 TO BE EFFECTIVE. 2456 01:23:05,025 --> 01:23:06,326 THE REQUIREMENT HAS ALSO BEEN 2457 01:23:06,326 --> 01:23:08,728 CRITICIZED FOR PUTTING AN 2458 01:23:08,728 --> 01:23:09,796 EXCESSIVE BURDEN ON RESEARCHERS 2459 01:23:09,796 --> 01:23:10,463 AND SPONSORS. 2460 01:23:10,463 --> 01:23:12,432 IT'S NOT THEIR JOB, IT'S ARGUED, 2461 01:23:12,432 --> 01:23:13,700 TO PROVIDE DRUGS TO EVERYONE IN 2462 01:23:13,700 --> 01:23:14,868 THE POPULATION THAT WOULD 2463 01:23:14,868 --> 01:23:15,602 BENEFIT FROM THEM. 2464 01:23:15,602 --> 01:23:18,805 IT'S NOT THEIR JOB TO ENSURE 2465 01:23:18,805 --> 01:23:20,240 THAT THE LOCAL HEALTH SYSTEM 2466 01:23:20,240 --> 01:23:23,510 PROVIDES THE DRUGS. 2467 01:23:23,510 --> 01:23:25,178 FINALLY, THE REASONABLE 2468 01:23:25,178 --> 01:23:25,912 AVAILABILITY REQUIREMENT HAS 2469 01:23:25,912 --> 01:23:28,114 BEEN CRITICIZED FOR TAKING A 2470 01:23:28,114 --> 01:23:29,549 VIEW OF THE BENEFITS THAT COUNT 2471 01:23:29,549 --> 01:23:33,019 THAT IS TOO NARROW. 2472 01:23:33,019 --> 01:23:35,889 ACCORDING TO THE ACCOUNT OF 2473 01:23:35,889 --> 01:23:36,656 EX-EMPLOY TAKES THAT WE'RE 2474 01:23:36,656 --> 01:23:37,757 WORKING WITH, WHETHER OR NOT 2475 01:23:37,757 --> 01:23:40,460 SOMEONE IS EXPLOITED BY A 2476 01:23:40,460 --> 01:23:42,462 TRANSACTION DEPEND ON THE AMOUNT 2477 01:23:42,462 --> 01:23:47,067 TO WHICH SHE BENEFIT RELATIVE 2478 01:23:47,067 --> 01:23:48,168 TO -- NOTHING ON THE ACCOUNT 2479 01:23:48,168 --> 01:23:49,035 RELIES ON THE BENEFIT TO HER 2480 01:23:49,035 --> 01:23:51,671 BEING OF A PARTICULAR TIME. 2481 01:23:51,671 --> 01:23:53,506 INDEED, IT'S INSISTING THAT THE 2482 01:23:53,506 --> 01:23:54,507 BENEFITS BE IN THE FORM OF 2483 01:23:54,507 --> 01:23:55,709 PROVIDING THE EXPERIMENTAL 2484 01:23:55,709 --> 01:23:56,376 INTERVENTION THAT LEADS TO THE 2485 01:23:56,376 --> 01:23:58,244 PROBLEM WITH RESEARCH THAT 2486 01:23:58,244 --> 01:24:04,250 DOESN'T YIELD A PRODUCT. 2487 01:24:04,250 --> 01:24:06,886 SOME OF THESE OPTIONS HAVE BEEN 2488 01:24:06,886 --> 01:24:08,188 ADDRESSED IN THE MOST RECENT 2489 01:24:08,188 --> 01:24:11,157 REVISIONS TO THE CM IOS 2490 01:24:11,157 --> 01:24:15,095 GUIDELINES WHICH CLARIFY THE 2491 01:24:15,095 --> 01:24:16,196 REASONABLE -- THEY NOW SAY AS 2492 01:24:16,196 --> 01:24:17,731 PART OF THEIR OBLIGATION, 2493 01:24:17,731 --> 01:24:19,699 SPONSORS AND RESEARCHERS MUST 2494 01:24:19,699 --> 01:24:21,034 ALSO MAKE EVERY EFFORT IN 2495 01:24:21,034 --> 01:24:21,801 COOPERATION WITH GOVERNMENT AND 2496 01:24:21,801 --> 01:24:23,336 OTHER RELEVANT STAKEHOLDERS TO 2497 01:24:23,336 --> 01:24:24,838 MAKE AVAILABLE AS SOON AS 2498 01:24:24,838 --> 01:24:25,972 POSSIBLE ANY INTERVENTION OR 2499 01:24:25,972 --> 01:24:27,507 PRODUCT DEVELOPED AND KNOWLEDGE 2500 01:24:27,507 --> 01:24:29,142 GENERATED FOR THE POPULATION OR 2501 01:24:29,142 --> 01:24:30,477 COMMUNITY IN WHICH THE RESEARCH 2502 01:24:30,477 --> 01:24:32,779 IS CARRIED OUT, AND TO ASSIST IN 2503 01:24:32,779 --> 01:24:33,646 BUILDING LOCAL RESEARCH 2504 01:24:33,646 --> 01:24:38,351 CAPACITY. 2505 01:24:38,351 --> 01:24:39,552 BUT OF COURSE THIS DOES NOT DEAL 2506 01:24:39,552 --> 01:24:40,787 WITH THE OBJECTION THAT WHAT 2507 01:24:40,787 --> 01:24:43,490 MATTERS IS THE AMOUNT, NOT THE 2508 01:24:43,490 --> 01:24:47,327 TYPE OF BENEFIT. 2509 01:24:47,327 --> 01:24:50,530 AND HERE IS THE DEBATE. 2510 01:24:50,530 --> 01:24:53,700 SOME ETHICISTS THINK WE SHOULD 2511 01:24:53,700 --> 01:24:56,202 ALLOW A MUCH WIDER RANGE -- THEY 2512 01:24:56,202 --> 01:24:58,271 THINK EXPLOITATION COULD BE 2513 01:24:58,271 --> 01:24:59,172 AVOIDED BY SUPPORTING A CLINIC 2514 01:24:59,172 --> 01:25:02,375 TO PROVIDE ADDITIONAL HEALTHCARE 2515 01:25:02,375 --> 01:25:07,480 OR BY IMPROVING THE -- WATER. 2516 01:25:07,480 --> 01:25:08,815 OTHERS THINK ONCE WE LOOSEN 2517 01:25:08,815 --> 01:25:10,016 RESTRICTIONS ON WHAT BENEFITS 2518 01:25:10,016 --> 01:25:11,317 COUNT, THERE'S A RISK OF 2519 01:25:11,317 --> 01:25:14,587 COMMUNITIES GETTING A RAW DEAL. 2520 01:25:14,587 --> 01:25:17,190 BIG POWER DISPARITIES BETWEEN 2521 01:25:17,190 --> 01:25:21,060 THE HIGH-INCOME COUNTRIES, THE 2522 01:25:21,060 --> 01:25:22,228 HIGH INCOME COUNTRY INSTITUTIONS 2523 01:25:22,228 --> 01:25:23,429 AND THE COMPANIES THAT FUND 2524 01:25:23,429 --> 01:25:25,632 INTERNATIONAL RESEARCH AND THE 2525 01:25:25,632 --> 01:25:26,833 HOST COMMUNITIES IN 2526 01:25:26,833 --> 01:25:27,400 LOW/MIDDLE-INCOME COUNTRIES 2527 01:25:27,400 --> 01:25:28,568 WHERE THEY TAKE PLACE. 2528 01:25:28,568 --> 01:25:30,570 IF WE DON'T HAVE A STANDARD FOR 2529 01:25:30,570 --> 01:25:33,406 WHAT'S FAIR, AND IF RESEARCH 2530 01:25:33,406 --> 01:25:35,375 SPONSORS ARE ABLE TO SHOP AROUND 2531 01:25:35,375 --> 01:25:37,043 DIFFERENT COMMUNITIES FOR A GOOD 2532 01:25:37,043 --> 01:25:38,678 DEAL, THEN WE RISK A RACE TO THE 2533 01:25:38,678 --> 01:25:39,112 BOTTOM. 2534 01:25:39,112 --> 01:25:41,681 WE RISK, THAT IS, THE POWERFUL 2535 01:25:41,681 --> 01:25:43,283 SPONSORS OF RESEARCH BARGAINING 2536 01:25:43,283 --> 01:25:45,151 DOWN THE BENEFITS THAT THEY 2537 01:25:45,151 --> 01:25:54,894 PROVIDE TO HOST COMMUNITIES. 2538 01:25:54,894 --> 01:25:55,995 -- ALSO MIDDLE POSITIONS 2539 01:25:55,995 --> 01:25:56,563 BETWEEN THESE TWO. 2540 01:25:56,563 --> 01:25:58,631 WE CALL THAT THE REASONABLE 2541 01:25:58,631 --> 01:26:00,033 AVAILABILITY REQUIREMENT, IT WAS 2542 01:26:00,033 --> 01:26:01,134 ORIGINALLY ONE HALF OF A 2543 01:26:01,134 --> 01:26:04,103 TWO-PART REQUIREMENT. 2544 01:26:04,103 --> 01:26:05,638 THAT RESEARCH SHOULD BE 2545 01:26:05,638 --> 01:26:09,242 RESPONSIVE TO POST RESEARCH 2546 01:26:09,242 --> 01:26:10,343 NEEDS AND -- SHOULD BE 2547 01:26:10,343 --> 01:26:10,877 REASONABLY AVAILABLE. 2548 01:26:10,877 --> 01:26:12,212 IF YOU'RE CONVINCED BY THE 2549 01:26:12,212 --> 01:26:13,379 CRITICISMS OF REASONABLE 2550 01:26:13,379 --> 01:26:14,314 AVAILABILITY BUT NOT CONVINCED 2551 01:26:14,314 --> 01:26:15,715 THAT WE SHOULD ALLOW JUST ANY 2552 01:26:15,715 --> 01:26:17,517 TYPE OF BENEFIT TO HOST 2553 01:26:17,517 --> 01:26:18,718 COMMUNITIES TO COUNT, THEN YOU 2554 01:26:18,718 --> 01:26:20,453 MIGHT TURN TO THE FIRST OF THESE 2555 01:26:20,453 --> 01:26:21,588 REQUIREMENTS TO HELP YOU OUT. 2556 01:26:21,588 --> 01:26:25,525 SO NO MATTER WHAT ELSE YOU MIGHT 2557 01:26:25,525 --> 01:26:27,694 SAY, RESEARCH SHOULD BE 2558 01:26:27,694 --> 01:26:28,695 RESPONSIVE TO THE HEALTH NEEDS 2559 01:26:28,695 --> 01:26:29,796 OF THE POPULATION IN WHICH THE 2560 01:26:29,796 --> 01:26:34,834 RESEARCH IS CARRIED OUT. 2561 01:26:34,834 --> 01:26:38,771 NOW HERE'S HOW WE NEED TO THINK 2562 01:26:38,771 --> 01:26:39,906 ABOUT RESPONSIVENESS. 2563 01:26:39,906 --> 01:26:40,740 I LIKE TO THINK ABOUT IT IN 2564 01:26:40,740 --> 01:26:42,175 TERMS OF THE LOCAL SOCIAL VALUE. 2565 01:26:42,175 --> 01:26:43,810 SO YOU ALREADY HAVE TALKED ABOUT 2566 01:26:43,810 --> 01:26:45,378 THE SOCIAL VALUE REQUIREMENT FOR 2567 01:26:45,378 --> 01:26:47,113 RESEARCH, ACCORDING TO WHICH THE 2568 01:26:47,113 --> 01:26:48,948 KNOWLEDGE THAT A RESEARCH STUDY 2569 01:26:48,948 --> 01:26:50,950 IS EXPECTED TO GENERATE SHOULD 2570 01:26:50,950 --> 01:26:53,353 BE SUFFICIENTLY VALUABLE BY 2571 01:26:53,353 --> 01:26:54,454 ASKING PARTICIPANTS TO TAKE ON 2572 01:26:54,454 --> 01:26:56,623 THE RISKS AND BURDENS OF 2573 01:26:56,623 --> 01:26:57,423 PARTICIPATION. 2574 01:26:57,423 --> 01:26:59,926 SO THE IDEA HERE IS THAT WE CAN 2575 01:26:59,926 --> 01:27:01,361 ALSO THINK IN TERMS OF LOCAL 2576 01:27:01,361 --> 01:27:02,795 SOCIAL VALUE. 2577 01:27:02,795 --> 01:27:03,796 VALUE OF THE KNOWLEDGE THAT THE 2578 01:27:03,796 --> 01:27:04,898 RESEARCH GENERATES TO THE 2579 01:27:04,898 --> 01:27:07,500 COMMUNITY THAT HOSTS THE 2580 01:27:07,500 --> 01:27:08,501 RESEARCH. 2581 01:27:08,501 --> 01:27:10,003 IF THE VALUE OF THAT KNOWLEDGE, 2582 01:27:10,003 --> 01:27:11,137 WHETHER IT'S FROM 2583 01:27:11,137 --> 01:27:12,372 EPIDEMIOLOGICAL RESEARCH OR 2584 01:27:12,372 --> 01:27:13,339 IMPLEMENTATION RESEARCH OR 2585 01:27:13,339 --> 01:27:14,874 DEVELOPING NEW PRODUCTS, THE 2586 01:27:14,874 --> 01:27:16,409 VALUE OF THAT KNOWLEDGE IS 2587 01:27:16,409 --> 01:27:17,377 SUFFICIENTLY GREAT, THEN THE 2588 01:27:17,377 --> 01:27:23,316 RESEARCH WON'T BE EXPLOITIVE. 2589 01:27:23,316 --> 01:27:27,153 IT MAY BE EASIER TO WORK OUT 2590 01:27:27,153 --> 01:27:28,788 WHETHER RESEARCH HAS SUFFICIENT 2591 01:27:28,788 --> 01:27:29,889 LOCAL SOCIAL VALUE THAN WHETHER 2592 01:27:29,889 --> 01:27:31,424 AN AMOUNT OF BENEFITS BEING 2593 01:27:31,424 --> 01:27:34,394 OFFERED TO A COMMUNITY IS FAIR. 2594 01:27:34,394 --> 01:27:36,896 IF THAT'S RIGHT, THEN THIS IS A 2595 01:27:36,896 --> 01:27:38,865 REASON WE SHOULD CARE ABOUT 2596 01:27:38,865 --> 01:27:39,232 RESPONSIVENESS. 2597 01:27:39,232 --> 01:27:40,199 ON THE OTHER HAND, IF WE THINK 2598 01:27:40,199 --> 01:27:41,968 IN PRINCIPLE ANY TYPE OF BENEFIT 2599 01:27:41,968 --> 01:27:43,369 SHOULD COUNT FOR DETERMINING 2600 01:27:43,369 --> 01:27:45,471 WHETHER THE BENEFITS TO A 2601 01:27:45,471 --> 01:27:46,439 COMMUNITY ARE SUFFICIENT THAT'S 2602 01:27:46,439 --> 01:27:47,774 A REASON TO BE MORE LIBERAL 2603 01:27:47,774 --> 01:27:49,075 ABOUT WHAT COUNTS AND TO TRY TO 2604 01:27:49,075 --> 01:27:50,710 PUT IN PLACE PROTECTIONS SO IN 2605 01:27:50,710 --> 01:27:51,945 PRACTICE, IT DOESN'T LEAD TO 2606 01:27:51,945 --> 01:27:55,448 EXPLOITATION. 2607 01:27:55,448 --> 01:27:56,416 SO THERE'S MUCH MORE TO SAY 2608 01:27:56,416 --> 01:27:57,317 ABOUT THIS DISCUSSION, BUT I'M 2609 01:27:57,317 --> 01:28:00,687 GOING TO WRAP UP. 2610 01:28:00,687 --> 01:28:02,221 TWO TAKE-HOME POINTS ABOUT 2611 01:28:02,221 --> 01:28:04,190 REASONABLE AVAILABILITY. 2612 01:28:04,190 --> 01:28:06,159 FIRST, THAT IT'S HARD TO JUSTIFY 2613 01:28:06,159 --> 01:28:07,727 REQUIRING THAT RESEARCHERS OR 2614 01:28:07,727 --> 01:28:09,996 SPONSORS ENSURE THAT STUDY 2615 01:28:09,996 --> 01:28:11,331 PRODUCTS THAT ARE SHOWN 2616 01:28:11,331 --> 01:28:12,332 EFFECTIVE MUST HAVE MADE 2617 01:28:12,332 --> 01:28:13,099 REASONABLY AVAILABLE TO 2618 01:28:13,099 --> 01:28:14,067 COMMUNITIES OR POPULATIONS THAT 2619 01:28:14,067 --> 01:28:16,369 HOST RESEARCH. 2620 01:28:16,369 --> 01:28:18,571 SECOND, THOUGH, I THINK IT'S 2621 01:28:18,571 --> 01:28:20,173 ALSO HARD TO JUSTIFY RESEARCH 2622 01:28:20,173 --> 01:28:22,408 THAT'S NOT RELEVANT TO THE 2623 01:28:22,408 --> 01:28:25,745 HEALTH OF HOST COMMUNITIES IN 2624 01:28:25,745 --> 01:28:26,546 LOW/MIDDLE-INCOME COUNTRIES. 2625 01:28:26,546 --> 01:28:28,348 IN PRACTICE, ASKING THE 2626 01:28:28,348 --> 01:28:30,183 QUESTION, WHAT IS THE RELEVANCE 2627 01:28:30,183 --> 01:28:31,284 OF THIS RESEARCH TO THE 2628 01:28:31,284 --> 01:28:33,286 POPULATION IN WHICH IT'S BEING 2629 01:28:33,286 --> 01:28:34,354 CARRIED OUT TURNS OUT TO BE A 2630 01:28:34,354 --> 01:28:37,590 GOOD WAY TO AVOID [INAUDIBLE], A 2631 01:28:37,590 --> 01:28:38,891 GOOD WAY TO IDENTIFY WAYS IN 2632 01:28:38,891 --> 01:28:40,393 WHICH A RESEARCH PROJECT SHOULD 2633 01:28:40,393 --> 01:28:41,728 BE -- IN ORDER TO GIVE IT MORE 2634 01:28:41,728 --> 01:28:48,468 SOCIAL VALUE. 2635 01:28:48,468 --> 01:28:49,902 RETURN NOW TO THE SECOND CASE 2636 01:28:49,902 --> 01:28:51,804 WITH WHICH I STARTED THIS TALK, 2637 01:28:51,804 --> 01:28:54,741 THE HUNTINGTON'S TEST CASE. 2638 01:28:54,741 --> 01:29:05,251 MOST PEOPLE IN MARACAIBO KNOW 2639 01:29:06,185 --> 01:29:07,787 ABOUT THE TEST AND NONE HAVE 2640 01:29:07,787 --> 01:29:08,321 ACCESS TO IT. 2641 01:29:08,321 --> 01:29:09,555 THE ORIGINAL GOAL OF FINDING A 2642 01:29:09,555 --> 01:29:10,957 CURE HAS NOT BEEN ACHIEVED, SO 2643 01:29:10,957 --> 01:29:12,392 THEY DON'T HAVE A TEST THAT WAS 2644 01:29:12,392 --> 01:29:15,094 DEVELOPED FOR MEMBERS OF THE 2645 01:29:15,094 --> 01:29:15,361 COMMUNITY. 2646 01:29:15,361 --> 01:29:17,530 ON THE OTHER HAND, THE 2647 01:29:17,530 --> 01:29:18,798 RESEARCHER WHO LED THE PROJECT 2648 01:29:18,798 --> 01:29:20,733 RAISED A LARGE AMOUNT OF MONEY, 2649 01:29:20,733 --> 01:29:23,236 MORE THAN $6 MILLION, TO SUPPORT 2650 01:29:23,236 --> 01:29:25,538 A HUNTINGTON'S DISEASE CLINIC 2651 01:29:25,538 --> 01:29:25,972 THERE. 2652 01:29:25,972 --> 01:29:27,407 ONE WOULD THINK THIS BENEFIT TO 2653 01:29:27,407 --> 01:29:28,174 MEMBERS OF THE COMMUNITY IS 2654 01:29:28,174 --> 01:29:29,375 LARGE ENOUGH THAT WE WOULD NOT 2655 01:29:29,375 --> 01:29:30,810 SAY THAT SHE HAD EXPLOITED THE 2656 01:29:30,810 --> 01:29:38,151 COMMUNITY. 2657 01:29:38,151 --> 01:29:39,919 TO CONCLUDE, THERE IS WIDESPREAD 2658 01:29:39,919 --> 01:29:41,988 AGREEMENT THAT BOTH PARTICIPANTS 2659 01:29:41,988 --> 01:29:43,523 IN CLINICAL TRIALS AND 2660 01:29:43,523 --> 01:29:45,258 COMMUNITIES THAT HOST RESEARCH 2661 01:29:45,258 --> 01:29:46,359 STUDIES SHOULD BENEFIT FROM 2662 01:29:46,359 --> 01:29:47,360 RESEARCH PARTICIPATION. 2663 01:29:47,360 --> 01:29:48,361 AND I'VE TALKED ABOUT SOME OF 2664 01:29:48,361 --> 01:29:49,762 THE WAYS IN WHICH PEOPLE THINK 2665 01:29:49,762 --> 01:29:54,067 THEY SHOULD BENEFIT AND WHY, OR 2666 01:29:54,067 --> 01:29:54,934 WHAT GROUNDS ARE THOSE REASONS 2667 01:29:54,934 --> 01:29:56,803 TO THINK THEY SHOULD BENEFIT. 2668 01:29:56,803 --> 01:29:57,670 THERE'S DISAGREEMENT ABOUT THE 2669 01:29:57,670 --> 01:29:58,771 TYPE OF BENEFIT THAT SHOULD BE 2670 01:29:58,771 --> 01:30:00,406 PROVIDED AND THE EXTENT OF THAT 2671 01:30:00,406 --> 01:30:00,840 BENEFIT. 2672 01:30:00,840 --> 01:30:03,543 SO FOR EXAMPLE, HOW LONG A 2673 01:30:03,543 --> 01:30:05,912 SPONSOR SHOULD PAY FOR 2674 01:30:05,912 --> 01:30:07,447 EX-PARTICIPANTS TO RECEIVE CARE. 2675 01:30:07,447 --> 01:30:08,548 THERE'S ALSO DISAGREEMENT ABOUT 2676 01:30:08,548 --> 01:30:10,416 WHO HAS THE DUTY TO PROVIDE THE 2677 01:30:10,416 --> 01:30:10,650 BENEFIT. 2678 01:30:10,650 --> 01:30:11,851 FOR EXAMPLE, WHETHER IT 2679 01:30:11,851 --> 01:30:13,186 GOVERNMENTS OR WHETHER IT'S THE 2680 01:30:13,186 --> 01:30:17,423 RESEARCHERS AND THEIR SPONSORS. 2681 01:30:17,423 --> 01:30:20,059 FINALLY, I WANT TO SOUND A 2682 01:30:20,059 --> 01:30:21,060 CAUTIONARY NOTE ABOUT THE 2683 01:30:21,060 --> 01:30:23,696 ETHICAL ISSUES THAT HAVE BEEN 2684 01:30:23,696 --> 01:30:24,464 IDENTIFIED. 2685 01:30:24,464 --> 01:30:25,565 CONDUCTING RESEARCH IN 2686 01:30:25,565 --> 01:30:26,532 ENVIRONMENTS WHERE MANY PEOPLE 2687 01:30:26,532 --> 01:30:27,867 LACK ACCESS TO AFFORDABLE 2688 01:30:27,867 --> 01:30:32,138 QUALITY CARE IS ETHICALLY 2689 01:30:32,138 --> 01:30:35,842 CHALLENGING, I TONIGHT THINK DOT 2690 01:30:35,842 --> 01:30:37,176 SHOULD PUT US OFF. 2691 01:30:37,176 --> 01:30:39,078 CONDUCTING THIS RESEARCH IS ALSO 2692 01:30:39,078 --> 01:30:40,379 VITALLY IMPORTANT FOR IMPROVING 2693 01:30:40,379 --> 01:30:42,748 THE HEALTH OF PEOPLE IN LOW AND 2694 01:30:42,748 --> 01:30:45,351 MIDDLE INCOME COUNTRIES SO THE 2695 01:30:45,351 --> 01:30:46,018 ETHICAL CHALLENGES ARE 2696 01:30:46,018 --> 01:30:47,320 CHALLENGES THAT SHOULD BE MET, 2697 01:30:47,320 --> 01:30:48,521 NOT CHALLENGES THAT SHOULD BE 2698 01:30:48,521 --> 01:30:49,088 AVOIDED. 2699 01:30:49,088 --> 01:30:49,989 THANK YOU. 2700 01:30:49,989 --> 01:30:52,758 [APPLAUSE] 2701 01:30:52,758 --> 01:30:56,696 >> THANK YOU, JOE. 2702 01:30:56,696 --> 01:30:57,897 SORRY, I DIDN'T HAVE MY MIC ON. 2703 01:30:57,897 --> 01:30:59,332 THANK YOU, JOE. 2704 01:30:59,332 --> 01:31:00,233 AND WE HAVE LOTS OF TIME FOR 2705 01:31:00,233 --> 01:31:03,169 QUESTIONS. 2706 01:31:03,169 --> 01:31:06,105 SO JOE JUST FYI, WE HAVE OUR 2707 01:31:06,105 --> 01:31:07,473 CURRENT FIRST-YEAR FELLOWS IN 2708 01:31:07,473 --> 01:31:10,143 THE ROOM, AND THEN THOSE OUT IN 2709 01:31:10,143 --> 01:31:13,379 THE VIRTUAL WORLD CAN POST 2710 01:31:13,379 --> 01:31:15,781 QUESTIONS FOR ME EITHER IN THE 2711 01:31:15,781 --> 01:31:18,184 DISCUSSION BOARD OR BY EMAIL. 2712 01:31:18,184 --> 01:31:24,657 SO I INVITE FOLKS TO DO THAT. 2713 01:31:24,657 --> 01:31:25,758 ANY QUESTIONS HERE FROM THE 2714 01:31:25,758 --> 01:31:31,030 GROUP? 2715 01:31:31,030 --> 01:31:32,131 MARCOS LOOKS LIKE HE'S THINKING 2716 01:31:32,131 --> 01:31:33,065 VERY HARD ABOUT A GOOD QUESTION 2717 01:31:33,065 --> 01:31:43,209 TO ASK. 2718 01:31:46,078 --> 01:31:48,447 SO THERE IS A LITTLE LAG, JOE, 2719 01:31:48,447 --> 01:31:49,749 SORRY, BECAUSE WHEN FOLKS PUT IN 2720 01:31:49,749 --> 01:31:52,485 THEIR QUESTIONS INTO THE 2721 01:31:52,485 --> 01:31:55,421 DISCUSSION BOARD FROM WHEREVER 2722 01:31:55,421 --> 01:31:56,522 THEY ARE IN THE WORLD, THEY 2723 01:31:56,522 --> 01:32:00,159 DON'T ARRIVE AS QUICKLY AS IS 2724 01:32:00,159 --> 01:32:10,336 POSSIBLE. 2725 01:32:17,510 --> 01:32:18,878 SO IT SEEMS I'M GOING TO ASK YOU 2726 01:32:18,878 --> 01:32:21,214 A QUESTION, JOE. 2727 01:32:21,214 --> 01:32:22,515 >> GREAT. 2728 01:32:22,515 --> 01:32:27,453 >> SO IN THINKING ABOUT -- SO I 2729 01:32:27,453 --> 01:32:30,723 UNDERSTAND WHERE YOU LEFT US. 2730 01:32:30,723 --> 01:32:35,127 THE SORT OF IDEA THAT ON ONE 2731 01:32:35,127 --> 01:32:37,330 HAND, IT'S CHALLENGING, ON THE 2732 01:32:37,330 --> 01:32:40,366 OTHER HAND, WE DON'T WANT TO 2733 01:32:40,366 --> 01:32:41,701 FURTHER DISADVANTAGE 2734 01:32:41,701 --> 01:32:44,337 DISADVANTAGED GROUPS BY FAILING, 2735 01:32:44,337 --> 01:32:48,507 PERHAPS, TO CONSIDER THAT -- A 2736 01:32:48,507 --> 01:32:49,375 PARTICULAR COMMUNITY AS ONE 2737 01:32:49,375 --> 01:32:50,610 WHERE WE MIGHT WANT TO DO 2738 01:32:50,610 --> 01:32:51,811 RESEARCH. 2739 01:32:51,811 --> 01:32:55,214 AND CAN YOU SAY A LITTLE MORE 2740 01:32:55,214 --> 01:32:56,616 ABOUT IF I'M AN INVESTIGATOR, 2741 01:32:56,616 --> 01:33:00,620 HOW WOULD YOU COUNSEL ME TO 2742 01:33:00,620 --> 01:33:01,787 THINK ABOUT -- LET'S IMAGINE I 2743 01:33:01,787 --> 01:33:04,323 HAVE A TRIAL WHERE I HAVE A 2744 01:33:04,323 --> 01:33:05,958 NUMBER OF DIFFERENT COMMUNITIES 2745 01:33:05,958 --> 01:33:10,029 I MIGHT START MY TRIAL, WHAT 2746 01:33:10,029 --> 01:33:10,997 SORT OF ADVICE WOULD YOU GIVE ME 2747 01:33:10,997 --> 01:33:13,299 ABOUT HOW I SHOULD THINK ABOUT 2748 01:33:13,299 --> 01:33:16,269 MAKING THE CHOICE OF WHICH SITES 2749 01:33:16,269 --> 01:33:22,341 TO CONDUCT MY TRIAL? 2750 01:33:22,341 --> 01:33:23,509 >> GREAT. 2751 01:33:23,509 --> 01:33:28,648 AND THAT'S A BIG QUESTION. 2752 01:33:28,648 --> 01:33:29,849 SO LET ME JUST SAY A COUPLE OF 2753 01:33:29,849 --> 01:33:31,651 THINGS AND THEN YOU CAN HONE IN 2754 01:33:31,651 --> 01:33:32,518 ON SOMETHING IF YOU LIKE. 2755 01:33:32,518 --> 01:33:36,355 I CAN NOW SEE ABOUT FOUR OF ME 2756 01:33:36,355 --> 01:33:38,324 TALKING BACK, WHICH IS ALSO 2757 01:33:38,324 --> 01:33:38,658 DISCONCERTING. 2758 01:33:38,658 --> 01:33:40,426 >> YEAH -- 2759 01:33:40,426 --> 01:33:41,927 >> I'LL TRY TO CONVINCE MYSELF 2760 01:33:41,927 --> 01:33:42,194 AS WELL. 2761 01:33:42,194 --> 01:33:46,799 >> THERE'S SON SOME AV ISSUES . 2762 01:33:46,799 --> 01:33:47,466 SORRY ABOUT THAT. 2763 01:33:47,466 --> 01:33:49,935 >> NO WORRIES, NO WORRIES AT 2764 01:33:49,935 --> 01:33:50,269 ALL. 2765 01:33:50,269 --> 01:33:53,205 SO I THINK ONE THING IS, IF 2766 01:33:53,205 --> 01:33:54,373 YOU'RE THINNING ABOUT DIFFERENT 2767 01:33:54,373 --> 01:33:56,409 SITES WHERE YOU MIGHT SITUATE 2768 01:33:56,409 --> 01:34:02,214 RESEARCH, WE WANT TO HAVE AT 2769 01:34:02,214 --> 01:34:05,785 LEAST TWO GOALS, ONE OF WHICH IS 2770 01:34:05,785 --> 01:34:07,453 A SORT OF MAXIMIZING GOAL, AND 2771 01:34:07,453 --> 01:34:08,688 ONE OF WHICH IS A GOAL IN TERMS 2772 01:34:08,688 --> 01:34:12,191 OF ETHICAL CONSTRAINTS. 2773 01:34:12,191 --> 01:34:15,061 THE MAXIMIZING GOAL IS THAT WE 2774 01:34:15,061 --> 01:34:19,332 SHOULD BE, I THINK, MOST CONC 2775 01:34:19,332 --> 01:34:20,232 CONCERNED WITH MAKING SURE THAT 2776 01:34:20,232 --> 01:34:23,002 THE RESEARCH IS GOING TO BE 2777 01:34:23,002 --> 01:34:25,504 PRODUCING KNOWLEDGE THAT IS 2778 01:34:25,504 --> 01:34:26,372 VALUABLE, AND THAT THAT 2779 01:34:26,372 --> 01:34:30,443 KNOWLEDGE SHOULD BE IDEALLY 2780 01:34:30,443 --> 01:34:32,011 VALUABLE TO THE GREATEST NUMBER 2781 01:34:32,011 --> 01:34:35,614 OF PEOPLE AND TO PEOPLE WHO ARE 2782 01:34:35,614 --> 01:34:38,250 MOST DISADVANTAGED, OR IF YOU'RE 2783 01:34:38,250 --> 01:34:39,118 LIKE MOST IN NEED OF THE 2784 01:34:39,118 --> 01:34:40,119 KNOWLEDGE THAT'S BEING 2785 01:34:40,119 --> 01:34:40,553 GENERATED. 2786 01:34:40,553 --> 01:34:41,320 AND SOMETIMES THAT'S GOING TO 2787 01:34:41,320 --> 01:34:42,755 HELP US TO DECIDE BETWEEN 2788 01:34:42,755 --> 01:34:45,257 DIFFERENT POPULATIONS, RIGHT? 2789 01:34:45,257 --> 01:34:46,726 DEPENDING ON WHAT KNOWLEDGE IS 2790 01:34:46,726 --> 01:34:47,693 GOING TO BE GENERATED, WHAT 2791 01:34:47,693 --> 01:34:51,530 WE'RE GOING TO BE ABLE TO GET 2792 01:34:51,530 --> 01:34:53,933 DATA THAT'S -- WHAT THE DATA 2793 01:34:53,933 --> 01:34:55,167 THAT WE GET IS GOING TO BE 2794 01:34:55,167 --> 01:34:56,068 RELEVANT TO TELLING US. 2795 01:34:56,068 --> 01:34:57,370 BUT THE OTHER THING IS THAT 2796 01:34:57,370 --> 01:34:59,038 WITHIN THAT, RIGHT, WE'RE TRYING 2797 01:34:59,038 --> 01:35:00,673 TO DO THE MOST SOCIALLY VALUABLE 2798 01:35:00,673 --> 01:35:02,108 RESEARCH WE CAN. 2799 01:35:02,108 --> 01:35:04,643 WITHIN THAT, WE CAN ELIMINATE 2800 01:35:04,643 --> 01:35:07,279 THE RESEARCH STUDIES WHERE 2801 01:35:07,279 --> 01:35:08,614 CONDUCTING THE RESEARCH IN THAT 2802 01:35:08,614 --> 01:35:09,582 POPULATION WOULD JUST BE 2803 01:35:09,582 --> 01:35:10,483 UNETHICAL. 2804 01:35:10,483 --> 01:35:12,685 SO WE HAVE THE MAXIMIZING GOAL 2805 01:35:12,685 --> 01:35:14,754 BUT WE ALSO HAVE TO HAVE THE 2806 01:35:14,754 --> 01:35:16,756 CONSTRAINT OF NOT WANTING TO 2807 01:35:16,756 --> 01:35:17,523 CONDUCT UNETHICAL RESEARCH. 2808 01:35:17,523 --> 01:35:19,358 NOW THAT GOAL, THE NOT DOING 2809 01:35:19,358 --> 01:35:24,029 UNETHICAL RESO MUCH GOAL IS RESS 2810 01:35:24,029 --> 01:35:26,932 REALLY STRAIGHTFORWARD -- WE 2811 01:35:26,932 --> 01:35:29,568 WANT TO MAKE SURE WE'RE NOT 2812 01:35:29,568 --> 01:35:30,803 IMPOSING EXCESSIVE HARMS ON 2813 01:35:30,803 --> 01:35:32,004 PARTICIPANTS, IF WE WOULD, THEN 2814 01:35:32,004 --> 01:35:33,205 WE WOULDN'T CARRY OUT THE 2815 01:35:33,205 --> 01:35:33,639 RESEARCH. 2816 01:35:33,639 --> 01:35:35,007 THE CHALLENGE IS, WHEN THE GOAL 2817 01:35:35,007 --> 01:35:40,146 OF GENERATING SOCIALLY VALUABLE 2818 01:35:40,146 --> 01:35:42,882 KNOWLEDGE COMES INTO CONFLICT 2819 01:35:42,882 --> 01:35:48,821 WHERE THE GOAL OF RESPECTING 2820 01:35:48,821 --> 01:35:49,355 ETHICAL CONSTRAINTS. 2821 01:35:49,355 --> 01:35:50,756 THIS IS WHERE THINGS LIKE THE 2822 01:35:50,756 --> 01:35:51,991 ISSUE OF THE STANDARD OF CARE OR 2823 01:35:51,991 --> 01:35:53,759 ISSUES ABOUT EXPLOITATION COME 2824 01:35:53,759 --> 01:35:55,394 UP. 2825 01:35:55,394 --> 01:36:00,433 BECAUSE THE TWO ARE RELATED, 2826 01:36:00,433 --> 01:36:01,867 WHICH POPULATION WE CONDUCT 2827 01:36:01,867 --> 01:36:02,902 RESEARCH IN AFFECTS WHAT SOCIAL 2828 01:36:02,902 --> 01:36:06,071 VALUE WE GET OUT OF THE 2829 01:36:06,071 --> 01:36:08,674 RESEARCH, BUT WHETHER WE CONDUCT 2830 01:36:08,674 --> 01:36:11,110 RESEARCH IN A PARTICULAR 2831 01:36:11,110 --> 01:36:14,613 POPULATION, RIGHT, IT GOING TO 2832 01:36:14,613 --> 01:36:17,016 CHANGE HOW WE DESIGN THE STUDY 2833 01:36:17,016 --> 01:36:20,519 AND, THEREFORE, WHETHER WE 2834 01:36:20,519 --> 01:36:22,588 RISK -- IF IT'S EXPLOITIVE, ET 2835 01:36:22,588 --> 01:36:23,055 CETERA, ET CETERA. 2836 01:36:23,055 --> 01:36:26,459 SO LAST THING TO SAY IS, I THINK 2837 01:36:26,459 --> 01:36:30,396 THERE IS A DANGER SOMETIMES OF 2838 01:36:30,396 --> 01:36:32,631 TRYING TO KEEP ONE'S HANDS CLEAN 2839 01:36:32,631 --> 01:36:36,669 IN THE SENSE OF NOT TAKING ANY 2840 01:36:36,669 --> 01:36:39,772 RISK OF DOING RESEARCH IN A 2841 01:36:39,772 --> 01:36:40,539 POPULATION WHERE YOU CAN'T 2842 01:36:40,539 --> 01:36:41,974 PROVIDE THE VERY BEST TO THEM, 2843 01:36:41,974 --> 01:36:43,375 AND MY CAUTIONARY NOTE AT THE 2844 01:36:43,375 --> 01:36:45,177 END WAS, I THINK WE SHOULD BE 2845 01:36:45,177 --> 01:36:46,045 WARY OF THAT. 2846 01:36:46,045 --> 01:36:47,379 IT'S GREAT TO HAVE CLEAN HANDS, 2847 01:36:47,379 --> 01:36:51,517 BUT IF THAT COMES AT THE COST OF 2848 01:36:51,517 --> 01:36:54,353 NOT GENERATING SOCIALLY VALUABLE 2849 01:36:54,353 --> 01:36:56,188 INFORMATION THAT CAN HELP 2850 01:36:56,188 --> 01:36:59,124 POPULATIONS THAT ARE MOST IN 2851 01:36:59,124 --> 01:37:00,860 NEED, THEN YOU'VE GOT CLEAN 2852 01:37:00,860 --> 01:37:02,261 HANDS BUT YOU'VE GOT THIS REAL 2853 01:37:02,261 --> 01:37:03,229 COST TO THE PEOPLE YOU COULD 2854 01:37:03,229 --> 01:37:04,096 HAVE BENEFITED. 2855 01:37:04,096 --> 01:37:05,397 I DON'T KNOW IF THAT'S HELPFUL 2856 01:37:05,397 --> 01:37:06,532 IN ANSWERING YOUR QUESTION, 2857 01:37:06,532 --> 01:37:09,168 HOLLY, BUT THOSE ARE MY SORT OF 2858 01:37:09,168 --> 01:37:11,370 INITIAL VERY BIG PICTURE 2859 01:37:11,370 --> 01:37:11,637 THOUGHTS. 2860 01:37:11,637 --> 01:37:13,372 >> NO, THAT'S GREAT, AND IN 2861 01:37:13,372 --> 01:37:15,341 FOLLOW-UP, I COULD MAKE A -- IF 2862 01:37:15,341 --> 01:37:16,876 I'M THE RESEARCHER, RIGHT, I 2863 01:37:16,876 --> 01:37:20,312 COULD HEAR THAT AND SAY, OKAY, 2864 01:37:20,312 --> 01:37:23,682 SO WHEN I'M CONSIDERING THE 2865 01:37:23,682 --> 01:37:26,619 SITES, I MIGHT THINK ABOUT WHICH 2866 01:37:26,619 --> 01:37:30,589 OF THE SITES IS THE LEAST WELL 2867 01:37:30,589 --> 01:37:36,328 OFF, AND WILL MY GOING TO THAT 2868 01:37:36,328 --> 01:37:37,296 PARTICULAR COMMUNITY RESULT IN A 2869 01:37:37,296 --> 01:37:39,164 LEVEL OF SOCIAL VALUE THAT IS 2870 01:37:39,164 --> 01:37:43,802 THAT MUCH MORE THAN IF I GO TO 2871 01:37:43,802 --> 01:37:45,337 SOME OF THESE OTHER SITE, BUT I 2872 01:37:45,337 --> 01:37:46,539 ALSO HAVE TO BE AWARE THAT THEY 2873 01:37:46,539 --> 01:37:50,175 ARE THE LEAST WELL OFF, AND BE 2874 01:37:50,175 --> 01:37:51,944 CAUTIOUS ABOUT EXPLOITATION OR 2875 01:37:51,944 --> 01:37:55,548 EVEN MAYBE THE PERCEPTION OF 2876 01:37:55,548 --> 01:37:57,550 EXPLOITATION, AND BE TRANSPARENT 2877 01:37:57,550 --> 01:37:59,518 ABOUT THAT IN THE SENSE OF 2878 01:37:59,518 --> 01:38:02,254 SAYING, THIS IS THE 2879 01:38:02,254 --> 01:38:03,689 JUSTIFICATION FOR WHY I'M GOING 2880 01:38:03,689 --> 01:38:06,458 TO THIS PLACE, YOU KNOW, WE'RE 2881 01:38:06,458 --> 01:38:08,093 GOING TO HEAR FROM DORCAS IN A 2882 01:38:08,093 --> 01:38:08,661 MOMENT. 2883 01:38:08,661 --> 01:38:10,729 I HAVE COMMUNICATED THIS WITH 2884 01:38:10,729 --> 01:38:14,500 THE COMMUNITY, AND I FEEL 2885 01:38:14,500 --> 01:38:15,701 CONFIDENT THAT CONDUCTING THE 2886 01:38:15,701 --> 01:38:20,506 RESEARCH HERE CAN BE DONE AT A 2887 01:38:20,506 --> 01:38:24,510 STANDARD THAT'S ACCEPTABLE AND I 2888 01:38:24,510 --> 01:38:25,377 AM COMMITTED TO MAKING SURE THAT 2889 01:38:25,377 --> 01:38:27,012 THE KNOWLEDGE THAT I GENERATE IS 2890 01:38:27,012 --> 01:38:29,081 FED BACK INTO THE POPULATION. 2891 01:38:29,081 --> 01:38:29,481 RIGHT? 2892 01:38:29,481 --> 01:38:32,885 OR I COULD SAY, WOW, IT TRICKY 2893 01:38:32,885 --> 01:38:35,688 GOING TO THE LEAST WELL OFF 2894 01:38:35,688 --> 01:38:36,155 COMMUNITY. 2895 01:38:36,155 --> 01:38:39,491 I'M GOING TO GO TO ONE THAT IS 2896 01:38:39,491 --> 01:38:42,328 BETTER OFF AND AGAIN APPRECIATE 2897 01:38:42,328 --> 01:38:44,296 THAT THE SOCIAL VALUE THAT I MAY 2898 01:38:44,296 --> 01:38:46,065 GENERATE FOR THAT LOCAL 2899 01:38:46,065 --> 01:38:47,933 COMMUNITY IS A QUANTITY BUT NOT 2900 01:38:47,933 --> 01:38:49,268 AS HIGH AS THE OTHER. 2901 01:38:49,268 --> 01:38:51,103 SO I GUESS TO SAY, RIGHT, YOU 2902 01:38:51,103 --> 01:38:52,771 GAVE ME SOME GOOD THOUGHTS ABOUT 2903 01:38:52,771 --> 01:38:54,773 HOW I COULD BE THINKING ABOUT 2904 01:38:54,773 --> 01:38:56,976 THOSE TRADEOFFS IN MAKING A 2905 01:38:56,976 --> 01:38:58,944 JUSTIFICATION FOR GOING TO SOME 2906 01:38:58,944 --> 01:39:01,814 SITE OVER ANOTHER. 2907 01:39:01,814 --> 01:39:09,788 SO I NOW HAVE SOME QUESTIONS. 2908 01:39:09,788 --> 01:39:10,889 I HAVE ANOTHER QUESTION BUT 2909 01:39:10,889 --> 01:39:12,191 THESE ARE FROM OUR VIRTUAL 2910 01:39:12,191 --> 01:39:16,195 PARTICIPANTS. 2911 01:39:16,195 --> 01:39:17,496 THIS IS AN INTERESTING QUESTION. 2912 01:39:17,496 --> 01:39:21,000 SO THIS IS FROM DALEEP WHO SAYS, 2913 01:39:21,000 --> 01:39:23,235 IN TRADITIONAL MEDICINE 2914 01:39:23,235 --> 01:39:24,103 RESEARCH, INDIGENOUS KNOWLEDGE 2915 01:39:24,103 --> 01:39:27,406 MAY BE COMMERCIALIZED OR PATE 2916 01:39:27,406 --> 01:39:27,806 PATENTED. 2917 01:39:27,806 --> 01:39:29,308 IN SUCH CASE, HOW TO DEAL WITH 2918 01:39:29,308 --> 01:39:31,276 THE POST RESEARCH BENEFIT 2919 01:39:31,276 --> 01:39:33,345 SHARING AND ACCESS. 2920 01:39:33,345 --> 01:39:34,647 DO YOU HAVE ANY THOUGHTS ABOUT 2921 01:39:34,647 --> 01:39:34,847 THAT? 2922 01:39:34,847 --> 01:39:36,682 >> WOW, YEAH. 2923 01:39:36,682 --> 01:39:38,884 ALSO A BIG QUESTION. 2924 01:39:38,884 --> 01:39:40,953 >> WE GIVE YOU ALL THE BIG ONES, 2925 01:39:40,953 --> 01:39:41,120 JOE. 2926 01:39:41,120 --> 01:39:45,190 >> GREAT. 2927 01:39:45,190 --> 01:39:48,327 SO THERE'S SORT OF A 2928 01:39:48,327 --> 01:39:50,462 LONGSTANDING AND VERY LEGITIMATE 2929 01:39:50,462 --> 01:39:54,533 CONCERN ABOUT RESEARCH THAT IS 2930 01:39:54,533 --> 01:39:57,002 EXPLOITIVE OF VARIOUS 2931 01:39:57,002 --> 01:39:58,637 COMMUNITIES INCLUDING INDIGENOUS 2932 01:39:58,637 --> 01:40:00,706 COMMUNITIES, AND ONE PARTICULAR 2933 01:40:00,706 --> 01:40:02,675 WAY IN WHICH THAT EXPLOITATION 2934 01:40:02,675 --> 01:40:06,679 HISTORICALLY HAS HAPPENED IS 2935 01:40:06,679 --> 01:40:08,547 WHERE A KNOWLEDGE THAT MAY HAVE 2936 01:40:08,547 --> 01:40:11,150 BEEN HELD WITHIN THAT INDIGENOUS 2937 01:40:11,150 --> 01:40:12,685 COMMUNITY, WHETHER IT'S HELD BY 2938 01:40:12,685 --> 01:40:14,653 A SMALL NUMBER OF INDIVIDUALS IN 2939 01:40:14,653 --> 01:40:23,128 THE COMMUNITY OR COMMONLY KNOWN, 2940 01:40:23,128 --> 01:40:25,030 THAT KNOWLEDGE IS TAKEN, USED TO 2941 01:40:25,030 --> 01:40:26,532 MAKE A PRODUCT, THAT PRODUCT IS 2942 01:40:26,532 --> 01:40:27,232 PA AT THE PRESENT TIMED AND 2943 01:40:27,232 --> 01:40:28,634 PROFITS ARE MADE ON THE BASIS OF 2944 01:40:28,634 --> 01:40:30,402 IT. 2945 01:40:30,402 --> 01:40:34,106 AND THEN THE CONCERN IS THOSE 2946 01:40:34,106 --> 01:40:35,474 PROFITS DON'T LEAD TO ANY 2947 01:40:35,474 --> 01:40:38,977 ADDITIONAL BENEFITS TO THE 2948 01:40:38,977 --> 01:40:43,449 COMMUNITIES. 2949 01:40:43,449 --> 01:40:45,551 NOW, THERE'S OF COURSE A REALLY 2950 01:40:45,551 --> 01:40:47,219 BIG PICTURE QUESTION WHICH IS 2951 01:40:47,219 --> 01:40:51,023 ABOUT WHETHER WE THINK THE 2952 01:40:51,023 --> 01:40:53,992 EXISTING INTELLECTUAL PROPERTY 2953 01:40:53,992 --> 01:40:55,594 REGIMEN, THE PATENT SYSTEM, IS 2954 01:40:55,594 --> 01:40:56,895 THE RIGHT WAY TO BE 2955 01:40:56,895 --> 01:40:57,663 INCENTIVIZING RESEARCH IN THE 2956 01:40:57,663 --> 01:40:58,764 FIRST PLACE. 2957 01:40:58,764 --> 01:40:59,098 RIGHT? 2958 01:40:59,098 --> 01:41:03,969 SO WE CAN HAVE A BACK 2959 01:41:03,969 --> 01:41:04,670 CONVERSATION, I THINK THERE ARE 2960 01:41:04,670 --> 01:41:06,505 A LOT OF LEGITIMATE QUESTIONS 2961 01:41:06,505 --> 01:41:08,006 WHETHER EVEN IN HIGH-INCOME 2962 01:41:08,006 --> 01:41:08,774 COUNTRIES, WHETHER THAT'S THE 2963 01:41:08,774 --> 01:41:10,776 SYSTEM THAT WE SHOULD BE USING 2964 01:41:10,776 --> 01:41:14,713 TO INCENTIVIZE RESEARCH. 2965 01:41:14,713 --> 01:41:18,684 SUPPOSE YOU ACCEPT THAT PATENTS 2966 01:41:18,684 --> 01:41:22,221 ARE AN ACCEPTABLE WAY TO 2967 01:41:22,221 --> 01:41:24,423 INCENTIVIZE PRIVATE SECTOR 2968 01:41:24,423 --> 01:41:25,390 RESEARCH. 2969 01:41:25,390 --> 01:41:26,925 THEN THERE STILL HAS TO BE 2970 01:41:26,925 --> 01:41:28,393 BENEFIT SHARING ARRANGEMENTS IN 2971 01:41:28,393 --> 01:41:30,696 PLACE WHEN THOSE PATENTS ARE 2972 01:41:30,696 --> 01:41:32,331 DEVELOPED ON THE BASIS OF 2973 01:41:32,331 --> 01:41:33,632 KNOWLEDGE THAT OTHER PEOPLE 2974 01:41:33,632 --> 01:41:34,800 CONTRIBUTED. 2975 01:41:34,800 --> 01:41:36,101 AND THAT SEEMS TO ME TO BE JUST 2976 01:41:36,101 --> 01:41:39,805 A MATTER OF STRAIGHT-UP FAIRNESS 2977 01:41:39,805 --> 01:41:46,044 OR JUSTICE. 2978 01:41:46,044 --> 01:41:47,479 I CAN'T SPEAK TO THE SPECIFICS 2979 01:41:47,479 --> 01:41:49,615 OF HOW THIS CAN BE DONE. 2980 01:41:49,615 --> 01:41:53,318 THERE ARE SOME GUIDE LINES THAT 2981 01:41:53,318 --> 01:41:58,390 EXIST WITH RESPECT TO THIS. 2982 01:41:58,390 --> 01:41:59,725 THE -- PEOPLE IN SOUTHERN AFRICA 2983 01:41:59,725 --> 01:42:01,460 HAVE THEIR OWN SET OF ETHICAL 2984 01:42:01,460 --> 01:42:03,562 GUIDELINES FOR RESEARCHERS WHO 2985 01:42:03,562 --> 01:42:05,764 WANT TO INTERACT WITH THEM THAT 2986 01:42:05,764 --> 01:42:06,865 CAME OUT IN LARGE PART AS A 2987 01:42:06,865 --> 01:42:09,835 RESULT OF THEIR PERCEPTION THAT 2988 01:42:09,835 --> 01:42:10,803 THEIR INDIGENOUS KNOWLEDGE WAS 2989 01:42:10,803 --> 01:42:12,805 BEING USED, SO I THINK THAT'S A 2990 01:42:12,805 --> 01:42:15,974 GOOD PLACE TO LOOK FOR HOW ONE 2991 01:42:15,974 --> 01:42:18,544 GROUP HAS DESCRIBED THE PROBLEM, 2992 01:42:18,544 --> 01:42:19,645 DESCRIBED HOW THEY WANTED TO BE 2993 01:42:19,645 --> 01:42:19,978 APPROACHED. 2994 01:42:19,978 --> 01:42:22,714 I WOULD SAY IT'S DEFINITELY A 2995 01:42:22,714 --> 01:42:23,816 POTENTIAL PROBLEM, IT'S A 2996 01:42:23,816 --> 01:42:25,250 QUESTION OF EXPLOITATION AND 2997 01:42:25,250 --> 01:42:27,686 IT'S A QUESTION OF FAIR 2998 01:42:27,686 --> 01:42:28,887 TREATMENT, AND ONE WAY I THINK 2999 01:42:28,887 --> 01:42:33,425 WE SHOULD BE REALLY CAREFUL 3000 01:42:33,425 --> 01:42:35,160 ABOUT EXTRACTING KNOWLEDGE, 3001 01:42:35,160 --> 01:42:37,362 COMMERCIALIZING IT AND NOT 3002 01:42:37,362 --> 01:42:39,665 PROVIDING ANYTHING IN RETURN. 3003 01:42:39,665 --> 01:42:40,532 >> GREAT. 3004 01:42:40,532 --> 01:42:42,267 THANK YOU. 3005 01:42:42,267 --> 01:42:45,504 AND I THINK WE HAVE -- WE'LL GO 3006 01:42:45,504 --> 01:42:47,806 WITH ONE MORE QUESTION AND IF WE 3007 01:42:47,806 --> 01:42:48,907 HAVE TIME WE'LL DO A SECOND. 3008 01:42:48,907 --> 01:42:51,443 SO THIS IS FROM YOLANDA. 3009 01:42:51,443 --> 01:42:52,878 SHE SAYS, I WOULD APPRECIATE IT, 3010 01:42:52,878 --> 01:42:55,414 IF POSSIBLE, TO SHARE A LITTLE 3011 01:42:55,414 --> 01:42:58,050 MORE ABOUT, QUOTE-UNQUOTE, THAT 3012 01:42:58,050 --> 01:42:59,918 EXPLOITATION NOT BE HARMFUL. 3013 01:42:59,918 --> 01:43:03,188 IS IT THE CASE THAT PARTICIPANTS 3014 01:43:03,188 --> 01:43:05,357 COULD DEMAND MORE THAN IT WOULD 3015 01:43:05,357 --> 01:43:07,426 BE NEEDED IN REALITY FOR THEM, 3016 01:43:07,426 --> 01:43:09,928 THAT IS MORE BENEFITS THAN THEY 3017 01:43:09,928 --> 01:43:12,898 MIGHT NEED, BUT HOW WOULD 3018 01:43:12,898 --> 01:43:14,666 EXPLOITATION NOT BE HARMFUL FROM 3019 01:43:14,666 --> 01:43:18,804 THE SIDE OF THE RESEARCHERS? 3020 01:43:18,804 --> 01:43:21,006 IS THERE A WAY THAT THEY COULD 3021 01:43:21,006 --> 01:43:24,476 OVERPLAY THEIR HAND? 3022 01:43:24,476 --> 01:43:24,676 OR -- 3023 01:43:24,676 --> 01:43:29,615 >> YEAH. 3024 01:43:29,615 --> 01:43:33,218 SO THE IDEA OF EXPLOITATION 3025 01:43:33,218 --> 01:43:34,653 WHERE EXPLOITATION INVOLVES ONE 3026 01:43:34,653 --> 01:43:35,888 PARTY TAKING UNFAIR ADVANTAGE OF 3027 01:43:35,888 --> 01:43:41,894 THE OTHER IS THAT SOME OF THE 3028 01:43:41,894 --> 01:43:46,732 TIME EXPLOITATION IS -- A LOT OF 3029 01:43:46,732 --> 01:43:48,433 THE TIME A TRANSACTION IS 3030 01:43:48,433 --> 01:43:49,935 EXPLOITIVE BUT, IN FACT, BOTH 3031 01:43:49,935 --> 01:43:51,470 PARTIES ARE BETTER OFF. 3032 01:43:51,470 --> 01:43:54,206 SO IF YOU THINK ABOUT THE CASE 3033 01:43:54,206 --> 01:43:56,975 OF EXPLOITIVE LABOR CONTRACT, 3034 01:43:56,975 --> 01:43:59,945 WHERE SOMEONE IS PAID MUCH LESS 3035 01:43:59,945 --> 01:44:04,650 THAN, SAY, THE MINIMUM WAGE, 3036 01:44:04,650 --> 01:44:08,153 WELL, MADE BETTER OFF PLAUSIBLY 3037 01:44:08,153 --> 01:44:09,521 BY ACCEPTING THE LOWER WAGE 3038 01:44:09,521 --> 01:44:10,555 BECAUSE OTHERWISE THEY WOULDN'T 3039 01:44:10,555 --> 01:44:13,892 ACCEPT IT, BUT THEY'RE STILL 3040 01:44:13,892 --> 01:44:15,127 BEING EXPLOITED, THEY'RE STILL 3041 01:44:15,127 --> 01:44:17,362 BEING TREATED UNFAIRLY. 3042 01:44:17,362 --> 01:44:19,431 NOW, YOU COULD INCREASE THE 3043 01:44:19,431 --> 01:44:20,299 BENEFITS THAT ARE PROVIDED TO 3044 01:44:20,299 --> 01:44:21,667 THAT PARTY, RIGHT, IN THE SAME 3045 01:44:21,667 --> 01:44:22,868 WAY AS YOU WOULD INCREASE THE 3046 01:44:22,868 --> 01:44:24,202 BENEFITS TO HOST COMMUNITIES. 3047 01:44:24,202 --> 01:44:26,171 AND YOU COULD INCREASE TO THE 3048 01:44:26,171 --> 01:44:27,739 POINT WHERE THEY'RE GETTING MORE 3049 01:44:27,739 --> 01:44:31,343 THAN THEIR FAIR SHARE, RIGHT? 3050 01:44:31,343 --> 01:44:34,212 THAT'S STILL NOT GOING TO HARM 3051 01:44:34,212 --> 01:44:36,882 THE SPONSORS OF THE RESEARCH, 3052 01:44:36,882 --> 01:44:38,183 NOT GOING TO HARM THEM TO THE 3053 01:44:38,183 --> 01:44:39,952 PERSON WHO'S EMPLOYING THEM, 3054 01:44:39,952 --> 01:44:41,019 BECAUSE THEY MAY STILLING 3055 01:44:41,019 --> 01:44:41,553 BENEFITING. 3056 01:44:41,553 --> 01:44:42,955 A PART OF BENEFITS TO BE 3057 01:44:42,955 --> 01:44:46,124 DIVIDED, QUESTIONS HOW IT SHOULD 3058 01:44:46,124 --> 01:44:52,030 BE DIVIDED FAIRLY. 3059 01:44:52,030 --> 01:44:53,165 SO YOU COULD HAVE LARGE 3060 01:44:53,165 --> 01:44:53,966 INCREASES IN THE BENEFITS 3061 01:44:53,966 --> 01:44:55,367 PROVIDED TO THE PREVIOUSLY 3062 01:44:55,367 --> 01:44:56,601 EXPLOITED PARTY, WITHOUT IT THEN 3063 01:44:56,601 --> 01:44:58,470 LEADING TO THE OTHER PARTY 3064 01:44:58,470 --> 01:44:59,905 FAILING TO BENEFIT FROM THE 3065 01:44:59,905 --> 01:45:00,238 TRANSACTION. 3066 01:45:00,238 --> 01:45:02,574 IF THEY FAIL TO BENEFIT FROM THE 3067 01:45:02,574 --> 01:45:03,575 TRANSACTION, PRESUMABLY THEY 3068 01:45:03,575 --> 01:45:04,609 WOULDN'T ENGAGE IN IT IN THE 3069 01:45:04,609 --> 01:45:04,943 FIRST PLACE. 3070 01:45:04,943 --> 01:45:05,477 >> EXACTLY. 3071 01:45:05,477 --> 01:45:06,311 >> THAT'S SPEAKING TO THE 3072 01:45:06,311 --> 01:45:06,578 QUESTION. 3073 01:45:06,578 --> 01:45:09,748 >> YEAH. 3074 01:45:09,748 --> 01:45:10,415 YES, RIGHT. 3075 01:45:10,415 --> 01:45:13,185 SO, YOU KNOW, IF A -- SO AGAIN 3076 01:45:13,185 --> 01:45:15,821 BACK TO HOLLY, IF HOLLY IS GOING 3077 01:45:15,821 --> 01:45:17,889 TO MULTIPLE COMMUNITIES AND ONE 3078 01:45:17,889 --> 01:45:20,392 SAYS YOU CAN COME TO MY 3079 01:45:20,392 --> 01:45:21,727 COMMUNITY BECAUSE WE APPRECIATE 3080 01:45:21,727 --> 01:45:29,334 THE SOCIAL VALUE BUT WE WANT IN 3081 01:45:29,334 --> 01:45:31,636 EXCHANGE FOUR NEW WELLS AND FOR 3082 01:45:31,636 --> 01:45:33,972 YOU TO COMMIT TO MAKING SURE 3083 01:45:33,972 --> 01:45:34,639 THOSE WELLS REMAIN FUNCTIONING 3084 01:45:34,639 --> 01:45:36,074 FOR THE NEXT 10 YEARS. 3085 01:45:36,074 --> 01:45:38,810 I, HOLLY, MIGHT SAY, YOU KNOW, I 3086 01:45:38,810 --> 01:45:40,946 ACTUALLY DON'T HAVE FUNDS 3087 01:45:40,946 --> 01:45:42,047 AVAILABLE TO DO THAT. 3088 01:45:42,047 --> 01:45:43,015 THAT'S NOT SOMETHING I'M GOING 3089 01:45:43,015 --> 01:45:45,384 TO BE ABLE TO DO, AND SO I NEED 3090 01:45:45,384 --> 01:45:49,087 TO GO TO THE NEXT COMMUNITY OR I 3091 01:45:49,087 --> 01:45:52,824 SAY, WOW, BEING IN THIS 3092 01:45:52,824 --> 01:45:53,925 COMMUNITY IS REALLY IMPORTANT TO 3093 01:45:53,925 --> 01:45:54,393 ME. 3094 01:45:54,393 --> 01:45:55,694 I KNOW I CAN'T USE RESEARCH 3095 01:45:55,694 --> 01:45:58,663 FUNDS TO DIG AND MAINTAIN THOSE 3096 01:45:58,663 --> 01:46:02,701 WELLS, BUT MAYBE I WOULD START A 3097 01:46:02,701 --> 01:46:05,937 CAMPAIGN TO CREATE A FUND TO DO 3098 01:46:05,937 --> 01:46:06,805 JUST THAT. 3099 01:46:06,805 --> 01:46:10,308 SO I APPRECIATE THE SORT OF 3100 01:46:10,308 --> 01:46:14,079 THINKING ABOUT I, HOLLY, AM 3101 01:46:14,079 --> 01:46:16,681 ALWAYS GOING TO BENEFIT, SO THE 3102 01:46:16,681 --> 01:46:19,084 VALUE IN TERMS OF MY ABILITY TO 3103 01:46:19,084 --> 01:46:23,422 BE EXPLOITED IS SO MUCH LARGER 3104 01:46:23,422 --> 01:46:24,723 THAN WHAT I COULD EVER OFFER THE 3105 01:46:24,723 --> 01:46:29,561 COMMUNITY IN THIS CASE. 3106 01:46:29,561 --> 01:46:31,329 >> I DON'T WANT TO SOUND TOO 3107 01:46:31,329 --> 01:46:32,330 MUCH LIKE AN ECONOMIST ABOUT 3108 01:46:32,330 --> 01:46:33,765 THIS BUT IT'S ABOUT DIVIDING UP 3109 01:46:33,765 --> 01:46:36,268 A SURPLUS, THE SOCIAL SURPLUS 3110 01:46:36,268 --> 01:46:37,402 FROM THE INTERACTION WE'RE GOING 3111 01:46:37,402 --> 01:46:38,503 TO HAVE AND THE QUESTION IS HOW 3112 01:46:38,503 --> 01:46:40,038 DO YOU DIVIDE IT UP BETWEEN THE 3113 01:46:40,038 --> 01:46:40,705 DIFFERENT PARTIES. 3114 01:46:40,705 --> 01:46:42,507 WE WANT TO MAKE SURE THE POWER 3115 01:46:42,507 --> 01:46:45,010 RELATIONS DON'T LEAD TO 3116 01:46:45,010 --> 01:46:47,012 UNFAIRNESS. 3117 01:46:47,012 --> 01:46:56,054 >> EXACTLY. 3118 01:46:56,054 --> 01:46:57,155 SO ONE OTHER QUESTION, SO AS YOU 3119 01:46:57,155 --> 01:46:59,691 KNOW IN THE COURSE WE TALK ABOUT 3120 01:46:59,691 --> 01:47:03,762 THE ROLE OF THE IRB, I'M 3121 01:47:03,762 --> 01:47:05,063 WONDERING IF YOU COULD TALK A 3122 01:47:05,063 --> 01:47:07,432 LITTLE ABOUT HOW AN IRB OUGHT TO 3123 01:47:07,432 --> 01:47:10,702 BE THINKING ABOUT THIS SORT OF 3124 01:47:10,702 --> 01:47:13,538 EXCHANGE OF BENEFITS AND WHAT 3125 01:47:13,538 --> 01:47:17,676 MIGHT BE REASONABLE IN AN 3126 01:47:17,676 --> 01:47:19,077 ASSESSMENT OF WHAT'S GOING TO BE 3127 01:47:19,077 --> 01:47:20,278 EXCHANGED BETWEEN THE TWO 3128 01:47:20,278 --> 01:47:29,488 PARTIES. 3129 01:47:29,488 --> 01:47:31,223 >> THIS REALLY IDENTIFYING ONE 3130 01:47:31,223 --> 01:47:34,226 OF THE CHALLENGES WITH THE 3131 01:47:34,226 --> 01:47:35,760 QUESTION OF POST TRIAL ACCESS 3132 01:47:35,760 --> 01:47:37,629 AND THE QUESTION OF REASONABLE 3133 01:47:37,629 --> 01:47:41,700 AVAILABILITY, WHICH IS ONCE YOU 3134 01:47:41,700 --> 01:47:48,273 MOVE INTO A SITUATION WHERE WE 3135 01:47:48,273 --> 01:47:49,641 DON'T HAVE IT STRAIGHTFORWARD 3136 01:47:49,641 --> 01:47:50,709 WE'RE GOING DO THIS RAO SEARCH 3137 01:47:50,709 --> 01:47:52,377 AND IF IT'S SUCCESSFUL THE 3138 01:47:52,377 --> 01:47:53,078 PRODUCTS OF THE RESEARCH WILL BE 3139 01:47:53,078 --> 01:47:54,179 AVAILABLE TO YOU, ONCE WE'RE OUT 3140 01:47:54,179 --> 01:47:55,981 OF THAT SIMPLE PARADIGM, IT 3141 01:47:55,981 --> 01:47:57,716 BECOMES REALLY HARD TO LOOK AT 3142 01:47:57,716 --> 01:48:01,186 WHAT LEVEL OF BENEFITS IS 3143 01:48:01,186 --> 01:48:05,257 APPROPRIATE. 3144 01:48:05,257 --> 01:48:09,327 UTS REALLY IT'S REALLY HARD FORO 3145 01:48:09,327 --> 01:48:12,063 KNOW WHAT SHOULD THEY PERMIT IN 3146 01:48:12,063 --> 01:48:15,233 TERMS OF BENEFITS OR LACK OF 3147 01:48:15,233 --> 01:48:16,501 BENEFITS TO HOST COMMUNITIES OR 3148 01:48:16,501 --> 01:48:17,936 BENEFITS OR LACK OF BENEFITS TO 3149 01:48:17,936 --> 01:48:20,672 PARTICIPANTS. 3150 01:48:20,672 --> 01:48:22,407 NOW WE SAY ONE THING ABOUT WHAT 3151 01:48:22,407 --> 01:48:26,511 MAKES THIS VERY COMPLICATED AND 3152 01:48:26,511 --> 01:48:29,681 THEN I'LL SUGGEST HOW I'D LIKE 3153 01:48:29,681 --> 01:48:30,882 TO THINK ABOUT THIS. 3154 01:48:30,882 --> 01:48:33,418 ONE THING THAT MAKES IT 3155 01:48:33,418 --> 01:48:36,955 COMPLICATED IS YOU COULD -- SO 3156 01:48:36,955 --> 01:48:39,157 YOU CAN'T JUST RELY ON WHAT 3157 01:48:39,157 --> 01:48:40,258 PARTICIPANTS ARE WILLING TO 3158 01:48:40,258 --> 01:48:41,359 ACCEPT OR WHAT HOST COMMUNITIES 3159 01:48:41,359 --> 01:48:43,495 ARE WILLING TO ACCEPT. 3160 01:48:43,495 --> 01:48:45,363 AND THAT'S PRECISELY BECAUSE OF 3161 01:48:45,363 --> 01:48:48,733 THE CONCERN ABOUT EXPLOITATION. 3162 01:48:48,733 --> 01:48:49,067 RIGHT? 3163 01:48:49,067 --> 01:48:51,203 YOU COULD HAVE COMMUNITIES 3164 01:48:51,203 --> 01:48:53,838 WILLING TO ACCEPT AN EXPLOITIVE 3165 01:48:53,838 --> 01:48:54,940 LEVEL OF BENEFITS BECAUSE THEY 3166 01:48:54,940 --> 01:48:56,575 REALLY WANT THE BENEFITS, AND 3167 01:48:56,575 --> 01:48:57,609 SAME WITH PARTICIPANTS. 3168 01:48:57,609 --> 01:49:01,213 SO THE EASY ANSWER OF WE'LL JUST 3169 01:49:01,213 --> 01:49:02,514 SEE WHAT PEOPLE AGREE TO ISN'T 3170 01:49:02,514 --> 01:49:03,615 AVAILABLE WHEN YOU WANT TO KNOW 3171 01:49:03,615 --> 01:49:06,518 WHAT'S FAIR, NOT JUST WHAT IS 3172 01:49:06,518 --> 01:49:08,053 GOING TO BENEFIT TO PEOPLE 3173 01:49:08,053 --> 01:49:09,921 RELATIVE TO THE STATUS QUO. 3174 01:49:09,921 --> 01:49:13,458 IN TERMS OF SOLUTIONS, I THINK 3175 01:49:13,458 --> 01:49:15,860 ONE WAY TO THINK ABOUT IT THAM I 3176 01:49:15,860 --> 01:49:18,830 DESCRIBED IN MY TALK WHICH I 3177 01:49:18,830 --> 01:49:20,232 THINK CAN BE HELPFUL IS TO THINK 3178 01:49:20,232 --> 01:49:21,499 ABOUT IT IN TERMS OF LOCAL 3179 01:49:21,499 --> 01:49:23,568 SOCIAL VALUE. 3180 01:49:23,568 --> 01:49:25,637 SO IF YOU WERE TO THINK ABOUT 3181 01:49:25,637 --> 01:49:30,642 THIS STUDY, AND IGNORE THE 3182 01:49:30,642 --> 01:49:31,610 EFFECTS OUTSIDE OF THE 3183 01:49:31,610 --> 01:49:33,278 POPULATION WHERE THE RESEARCH IS 3184 01:49:33,278 --> 01:49:34,579 GOING TO TAKE PLACE, SO JUST 3185 01:49:34,579 --> 01:49:38,683 FOCUS ON THE POPULATION, PANTS 3186 01:49:38,683 --> 01:49:43,154 PANTSPARTICIPANTS ARE DRAWN FROE 3187 01:49:43,154 --> 01:49:45,957 SITES SELECTED, WOULD THE 3188 01:49:45,957 --> 01:49:47,492 KNOWLEDGE OF VALUE BE ENOUGH 3189 01:49:47,492 --> 01:49:49,127 YOU'RE GOING TO IMPROVE THE 3190 01:49:49,127 --> 01:49:51,830 STUDY, THE IDEA OF LOCAL SOCIAL 3191 01:49:51,830 --> 01:49:52,497 VALUES. 3192 01:49:52,497 --> 01:49:54,132 SINCE IRBs ARE ALWAYS SUPPOSED 3193 01:49:54,132 --> 01:49:56,001 TO BE THINKING ABOUT SOCIAL 3194 01:49:56,001 --> 01:49:57,135 VALUE ANYWAY, THAT'S SOMETHING 3195 01:49:57,135 --> 01:49:58,436 THEY DO FOR EVERY STUDY, THAT'S 3196 01:49:58,436 --> 01:50:00,739 A WAY, A HEURISTIC FOR TRYING TO 3197 01:50:00,739 --> 01:50:01,840 THINK ABOUT HOW MUCH IS ENOUGH 3198 01:50:01,840 --> 01:50:03,675 LOCAL SOCIAL VALUE TO AVOID 3199 01:50:03,675 --> 01:50:07,679 EXPLOITATION. 3200 01:50:07,679 --> 01:50:08,913 AND THEN THE OTHER THING IS, 3201 01:50:08,913 --> 01:50:10,382 ALTHOUGH I THINK IT'S TRUE YOU 3202 01:50:10,382 --> 01:50:12,250 CAN'T JUST ASK WHAT WOULD 3203 01:50:12,250 --> 01:50:13,018 PARTICIPANTS ACCEPT OR WHAT 3204 01:50:13,018 --> 01:50:19,624 WOULD A COMMUNITY ACCEPT, THE 3205 01:50:19,624 --> 01:50:20,125 DEPARTMENT OF BIOETHICS 3206 01:50:20,125 --> 01:50:21,426 SUGGESTED DO THIS, YOU CAN ASK 3207 01:50:21,426 --> 01:50:22,594 THEM FOR THEIR JUDGMENTS ABOUT 3208 01:50:22,594 --> 01:50:24,462 WHAT THEY THINK IS FAIR. 3209 01:50:24,462 --> 01:50:28,066 AND THAT MAY BE ANOTHER WAY IN 3210 01:50:28,066 --> 01:50:30,535 PARTICULARLY CONTROVERTED CASES 3211 01:50:30,535 --> 01:50:31,636 OR PARTICULARLY LARGE TRIALS 3212 01:50:31,636 --> 01:50:33,038 WHERE PEOPLE ARE CONCERNED ABOUT 3213 01:50:33,038 --> 01:50:38,143 THIS, THAT MAY BE A WAY TO GET 3214 01:50:38,143 --> 01:50:39,444 SOME HANDLE ON WHAT THE LEVEL OF 3215 01:50:39,444 --> 01:50:41,546 BENEFITS OUGHT TO BE TO AVOID 3216 01:50:41,546 --> 01:50:43,848 EXPLOITATION. 3217 01:50:43,848 --> 01:50:45,083 >> GREAT. 3218 01:50:45,083 --> 01:50:45,984 WELL, THANK YOU AS ALWAYS, JOE, 3219 01:50:45,984 --> 01:50:49,354 FOR BEAMING IN FROM THE U.K., 3220 01:50:49,354 --> 01:50:52,390 AND WE'LL SEE YOU SOON, I HOPE. 3221 01:50:52,390 --> 01:50:54,292 >> THANKS EVER SO MUCH FOR 3222 01:50:54,292 --> 01:50:54,993 HAVING ME. 3223 01:50:54,993 --> 01:50:55,994 IT'S ALWAYS GREAT TO TALK WITH 3224 01:50:55,994 --> 01:50:56,661 YOU ALL. 3225 01:50:56,661 --> 01:50:57,395 >> GOOD. 3226 01:50:57,395 --> 01:50:57,595 GREAT. 3227 01:50:57,595 --> 01:51:00,131 THANK YOU. 3228 01:51:00,131 --> 01:51:04,169 SO WE ARE AT THE TIME FOR OUR 3229 01:51:04,169 --> 01:51:07,005 BREAK, AND IF YOU COULD ALL 3230 01:51:07,005 --> 01:51:10,442 RETURN AT 10:35, THAT WOULD BE 3231 01:51:10,442 --> 01:51:10,775 GREAT. 3232 01:51:10,775 --> 01:51:12,644 I'M JUST GOING TO MENTION, AS I 3233 01:51:12,644 --> 01:51:15,714 DID AT THE TOP OF THE COURSE DAY 3234 01:51:15,714 --> 01:51:17,182 TODAY, THAT WE'RE GOING TO BE 3235 01:51:17,182 --> 01:51:24,122 USING SLIDO DURING DR. QU THE 3236 01:51:24,122 --> 01:51:24,456 PRESENTATION. 3237 01:51:24,456 --> 01:51:26,358 I SENT AN EMAIL TO EVERYONE ON 3238 01:51:26,358 --> 01:51:26,958 THIS. 3239 01:51:26,958 --> 01:51:29,794 YOU JUST NEED TO GO TO SLIDO.COM 3240 01:51:29,794 --> 01:51:31,062 ENTER THE SESSION NUMBER. 3241 01:51:31,062 --> 01:51:32,163 THERE'S ALSO A LINK IN THE EMAIL 3242 01:51:32,163 --> 01:51:34,666 THAT WILL TAKE YOU DIRECTLY TO 3243 01:51:34,666 --> 01:51:35,333 THE SESSION. 3244 01:51:35,333 --> 01:51:41,306 THE SESSION NUMBER IS 2060360. 3245 01:51:41,306 --> 01:51:42,507 I'LL REPEAT THAT WHEN WE'RE 3246 01:51:42,507 --> 01:51:48,813 ABOUT TO START WITH DR. KAMUYA, 3247 01:51:48,813 --> 01:51:50,215 BUT IT WILL BE GREAT IF YOU'RE 3248 01:51:50,215 --> 01:51:52,183 READY WITH SLIDO ON YOUR 3249 01:51:52,183 --> 01:51:53,718 COMPUTER OR PHONE BEFORE WE GET 3250 01:51:53,718 --> 01:51:54,052 STARTED. 3251 01:51:54,052 --> 01:52:04,362 SO THANK YOU ALL. 3252 01:52:22,820 --> 01:52:24,789 TOPICS INCLUDING, 3253 01:52:24,789 --> 01:52:26,691 CONTROLLED HUMAN INFECTION 3254 01:52:26,691 --> 01:52:27,458 STUDIES, PANDEMIC PREPAREDNESS 3255 01:52:27,458 --> 01:52:32,497 AND ALL SORTS OF THINGS, BUT SHE 3256 01:52:32,497 --> 01:52:34,899 IS VERY CAPABLE TO TALK TO US 3257 01:52:34,899 --> 01:52:39,470 TODAY ABOUT EXAMINING THE VALUE 3258 01:52:39,470 --> 01:52:40,538 OF COMMUNITY AND PUBLIC 3259 01:52:40,538 --> 01:52:41,405 ENGAGEMENT IN HEALTH RESEARCH. 3260 01:52:41,405 --> 01:52:44,342 SO I'M GOING TO HAND IT OVER TO 3261 01:52:44,342 --> 01:52:47,845 DORCAS, AND AS A REMINDER, WE'RE 3262 01:52:47,845 --> 01:52:49,914 GOING TO BE USING SLIDO AND THE 3263 01:52:49,914 --> 01:52:59,056 CODE IS 2060360. 3264 01:52:59,056 --> 01:53:00,491 THANK YOU, THANK YOU, HOLLY, 3265 01:53:00,491 --> 01:53:01,859 GOOD MORNING, GOOD AFTERNOON, 3266 01:53:01,859 --> 01:53:04,362 WHEREVER YOU ARE. 3267 01:53:04,362 --> 01:53:06,264 EVENING IN KENYA, SO I'M REALLY 3268 01:53:06,264 --> 01:53:07,331 EXCITED TO BE PART OF THIS. 3269 01:53:07,331 --> 01:53:11,002 THE PREVIOUS PRESENTERS, 3270 01:53:11,002 --> 01:53:13,871 PROFESSORS ANNETTE RID AND 3271 01:53:13,871 --> 01:53:15,072 JOSEPH SET A VERY GOOD 3272 01:53:15,072 --> 01:53:16,541 BACKGROUND OF WHY ENGAGEMENT IS 3273 01:53:16,541 --> 01:53:19,644 SO IMPORTANT IN HEALTH RESEARCH. 3274 01:53:19,644 --> 01:53:22,346 >> ALSO I'M DRAWING A LOT OF 3275 01:53:22,346 --> 01:53:24,081 EXPERIENCES OF MANY AMAZING 3276 01:53:24,081 --> 01:53:25,249 COLLEAGUES AND COLLABORATORS IN 3277 01:53:25,249 --> 01:53:29,987 THE WORK THAT WE DO. 3278 01:53:29,987 --> 01:53:31,923 CAN YOU STOP JUST FOR A SECOND? 3279 01:53:31,923 --> 01:53:33,558 CAN I ASK YOU TO PUT YOUR SLIDES 3280 01:53:33,558 --> 01:53:34,859 IN PRESENTATION MODE SO WE HAVE 3281 01:53:34,859 --> 01:53:39,737 THOSE HERE ON OUR SCREEN? 3282 01:53:39,737 --> 01:53:41,906 >> THANK YOU. 3283 01:53:41,906 --> 01:53:49,980 SO THIS IS -- THE COMMUNITIES -- 3284 01:53:49,980 --> 01:53:52,683 SOME CONSIDERATIONS IN -- AND 3285 01:53:52,683 --> 01:53:56,854 IMPLEMENTING ENGAGEMENT. 3286 01:53:56,854 --> 01:53:59,056 A QUICK OUTLINE FOR MAIN AREAS 3287 01:53:59,056 --> 01:54:02,760 WE WILL COVER WHY ENGAGEMENT IN 3288 01:54:02,760 --> 01:54:05,129 HEALTH RESEARCH MATTERS, SOME 3289 01:54:05,129 --> 01:54:06,497 LIMITATIONS OF ENGAGEMENT. 3290 01:54:06,497 --> 01:54:08,165 PRIOR TO THIS SESSION, THERE'S A 3291 01:54:08,165 --> 01:54:12,102 VIDEO THAT WAS SHARED EARLIER 3292 01:54:12,102 --> 01:54:16,774 WHICH IS ABOUT SOME COMMUNITY 3293 01:54:16,774 --> 01:54:25,516 MEMBERS DISCUSSING WHAT -- -- KI 3294 01:54:25,516 --> 01:54:25,983 RESEARCH PROGRAM. 3295 01:54:25,983 --> 01:54:27,384 I HOPE YOU HAVE THE TIME TO 3296 01:54:27,384 --> 01:54:31,655 LISTEN TO THE VIDEO, IT'S 3297 01:54:31,655 --> 01:54:32,623 11.3 MINUTES CLIP, SO I THINK IN 3298 01:54:32,623 --> 01:54:35,125 SOME WAYS, IT STARTS TO GIVE A 3299 01:54:35,125 --> 01:54:38,162 FOUNDATION OF WHY ENGAGEMENT IS 3300 01:54:38,162 --> 01:54:41,098 SO IMPORTANT SM SO. 3301 01:54:41,098 --> 01:54:50,508 SO IN THE NEXT FEW MINUTES, -- 3302 01:54:50,508 --> 01:54:54,879 ONE OF THE QUESTIONS, -- HOW 3303 01:54:54,879 --> 01:54:56,347 MIGHT ENGAGEMENT ASSIST 3304 01:54:56,347 --> 01:54:57,581 COMMUNITY MEMBERS IN THIS 3305 01:54:57,581 --> 01:54:59,984 CONTEXT AND HOW MIGHT IT ALSO 3306 01:54:59,984 --> 01:55:03,153 ASSIST RESEARCHERS IN THIS 3307 01:55:03,153 --> 01:55:05,789 CONTEXT. 3308 01:55:05,789 --> 01:55:07,391 ANYONE WHO CAN HELP ME HERE, WHO 3309 01:55:07,391 --> 01:55:09,793 CAN GIVE SOME FEEDBACK ON THIS. 3310 01:55:09,793 --> 01:55:10,361 >> WE'RE SET. 3311 01:55:10,361 --> 01:55:12,997 I HAVE A BUNCH OF RESPONSES SO 3312 01:55:12,997 --> 01:55:15,032 THANK YOU OUT THERE IN THE ROOM 3313 01:55:15,032 --> 01:55:19,403 AND IN VIDEO LAND. 3314 01:55:19,403 --> 01:55:20,905 SO HERE ARE A COUPLE SUGGESTIONS 3315 01:55:20,905 --> 01:55:22,306 FROM THE GROUP ABOUT ISSUES FOR 3316 01:55:22,306 --> 01:55:23,407 COMMUNITIES THAT EMERGE FROM THE 3317 01:55:23,407 --> 01:55:24,508 VIDEO. 3318 01:55:24,508 --> 01:55:26,577 WE HAVE STUDY PARTICIPANTS, 3319 01:55:26,577 --> 01:55:31,048 WE'WERENOT ADEQUATELY PERFORMED. 3320 01:55:31,048 --> 01:55:33,017 FROM THE VIDEO, THERE WAS HOOR 3321 01:55:33,017 --> 01:55:36,353 INFORMATION AND PERHAPS 3322 01:55:36,353 --> 01:55:38,789 MISCONCEPTIONS OF THE COMMUNITY 3323 01:55:38,789 --> 01:55:40,958 CONCERNING KEMRI ACTIVITIES. 3324 01:55:40,958 --> 01:55:43,794 THE VIDEO -- SOMEONE ELSE SAYS, 3325 01:55:43,794 --> 01:55:46,497 THEY DON'T FULLY UNDERSTAND. 3326 01:55:46,497 --> 01:55:48,599 THEY HAVE STRONGLY HELD ON TO 3327 01:55:48,599 --> 01:55:51,402 THEIR CULTURAL BELIEFS. 3328 01:55:51,402 --> 01:55:53,837 LET'S SEE. 3329 01:55:53,837 --> 01:55:56,907 SORRY. 3330 01:55:56,907 --> 01:55:58,175 WE'VE GOT LOTS OF ANSWERS SO I'M 3331 01:55:58,175 --> 01:56:03,547 TRYING TO SCROLL THROUGH HERE. 3332 01:56:03,547 --> 01:56:08,018 LOTS OF RUMORS OF INTENTIONAL 3333 01:56:08,018 --> 01:56:11,288 MISUNDERSTANDING, WHILE IT'S 3334 01:56:11,288 --> 01:56:13,991 TRUE THAT RESEARCH MAY REPRESENT 3335 01:56:13,991 --> 01:56:15,559 FOR COMMUNITIES' ACCESS TO 3336 01:56:15,559 --> 01:56:19,163 INNOVATIVE TREATMENTS, CULTURAL 3337 01:56:19,163 --> 01:56:21,865 DIFFERENCES AND RADICALISM MAY 3338 01:56:21,865 --> 01:56:23,200 CAUSE SUCH NOT TO BE ACCEPTED 3339 01:56:23,200 --> 01:56:25,669 AND HENCE THE IMPORTANCE OF A 3340 01:56:25,669 --> 01:56:26,337 COMMUNITY REPRESENTATIVE TO 3341 01:56:26,337 --> 01:56:29,173 ASSIST IN COMMUNITY OUTREACH. 3342 01:56:29,173 --> 01:56:30,140 I CAN GO ON. 3343 01:56:30,140 --> 01:56:33,077 THERE'S LOTS OF OTHER RESPONSES, 3344 01:56:33,077 --> 01:56:33,277 BUT -- 3345 01:56:33,277 --> 01:56:33,644 >> THANK YOU. 3346 01:56:33,644 --> 01:56:36,714 THANK YOU, I REALLY APPRECIATE, 3347 01:56:36,714 --> 01:56:38,048 THESE ARE A FULL RANGE OF ISSUES 3348 01:56:38,048 --> 01:56:39,783 THAT THAT VIDEO PROVIDES AND 3349 01:56:39,783 --> 01:56:41,619 MAYBE BEFORE WE GO TO THE NEXT 3350 01:56:41,619 --> 01:56:44,355 ONE, A BIT OF ABOVE GROUND, THIS 3351 01:56:44,355 --> 01:56:46,724 IS A VIDEO THAT WE DEVELOPED IN 3352 01:56:46,724 --> 01:56:47,324 2005. 3353 01:56:47,324 --> 01:56:51,362 BY THE TIME WE SHOWED THIS VID 3354 01:56:51,362 --> 01:56:53,998 VIDEO, THE PROGRAM HAD BEEN IN 3355 01:56:53,998 --> 01:56:57,134 THE POPULATION FOR AROUND 10, 15 3356 01:56:57,134 --> 01:56:57,668 YEARS. 3357 01:56:57,668 --> 01:57:00,938 EVERY RESEARCH WAS ENGAGING -- 3358 01:57:00,938 --> 01:57:02,940 WHAT THE RESEARCH INTENDED TO 3359 01:57:02,940 --> 01:57:04,942 DO. 3360 01:57:04,942 --> 01:57:07,811 BY ALL ACCOUNTS, RESEARCHERS ARE 3361 01:57:07,811 --> 01:57:09,046 VERY -- AND THEN WE DID THIS 3362 01:57:09,046 --> 01:57:10,981 VIDEO. 3363 01:57:10,981 --> 01:57:12,082 AND THAT ECONOMICALLY CHANGED 3364 01:57:12,082 --> 01:57:16,120 HOW WE VIEWED ENGAGEMENT. 3365 01:57:16,120 --> 01:57:17,388 SO JUST A BIT OF A BACKGROUND, 3366 01:57:17,388 --> 01:57:18,756 AND WHAT YOU SEE THERE IS 3367 01:57:18,756 --> 01:57:20,090 COMMUNITY MEMBERS DISCUSSING THE 3368 01:57:20,090 --> 01:57:21,325 WORK OF THE PROGRAM. 3369 01:57:21,325 --> 01:57:23,093 SO HOW MIGHT ENGAGEMENT 3370 01:57:23,093 --> 01:57:23,861 THEREFORE ASSIST COMMUNITY 3371 01:57:23,861 --> 01:57:25,129 MEMBERS IN THIS CONTEXT. 3372 01:57:25,129 --> 01:57:28,732 WHAT KIND OF ISSUES CAME UP? 3373 01:57:28,732 --> 01:57:33,037 WERE RESPONSIVE? 3374 01:57:33,037 --> 01:57:34,571 >> I WILL SHARE THEM WITH YOU 3375 01:57:34,571 --> 01:57:34,738 NOW. 3376 01:57:34,738 --> 01:57:36,607 WE HAVE IDENTIFYING ISSUES THAT 3377 01:57:36,607 --> 01:57:39,109 MATTER TO THE COMMUNITY. 3378 01:57:39,109 --> 01:57:40,611 HELPING INCREASING COMMUNITY 3379 01:57:40,611 --> 01:57:42,146 AWARENESS OF OTHER TYPES OF 3380 01:57:42,146 --> 01:57:46,517 MEDICINE AND TREATMENT. 3381 01:57:46,517 --> 01:57:47,051 LET'S SEE. 3382 01:57:47,051 --> 01:57:48,452 BEFORE THE STUDY BEGINS, 3383 01:57:48,452 --> 01:57:49,887 COMMUNITY ENGAGEMENT SHOULD BE 3384 01:57:49,887 --> 01:57:52,523 INITIATED TO PROVIDE DETAILED 3385 01:57:52,523 --> 01:57:53,490 INFORMATION ABOUT THE STUDY AND 3386 01:57:53,490 --> 01:57:59,496 THE STUDY PLAN. 3387 01:57:59,496 --> 01:58:01,031 COMMUNITY MEMBERS NEED TO FEEL 3388 01:58:01,031 --> 01:58:02,666 THEY HAVE A ROLE IN CONSIDERING 3389 01:58:02,666 --> 01:58:05,069 WHAT IS GOING TO BE CONDUCTED IN 3390 01:58:05,069 --> 01:58:09,073 THEIR SETTING. 3391 01:58:09,073 --> 01:58:10,174 AND IT'S IMPORTANT FOR THEM TO 3392 01:58:10,174 --> 01:58:13,043 UNDERSTAND THE PROJECT GOALS. 3393 01:58:13,043 --> 01:58:16,313 >> THANK YOU. 3394 01:58:16,313 --> 01:58:20,651 I THINK WHAT'S COMING IS THE 3395 01:58:20,651 --> 01:58:21,852 ROLE OF COMMUNITY BEING SO 3396 01:58:21,852 --> 01:58:23,053 CENTRAL TO WHAT IS HAPPENING IN 3397 01:58:23,053 --> 01:58:24,154 THEIR COMMUNITY, INCLUDING TO 3398 01:58:24,154 --> 01:58:25,522 THE ROLES OF THE RESEARCH AND 3399 01:58:25,522 --> 01:58:27,491 WHAT THE RESEARCH DOES. 3400 01:58:27,491 --> 01:58:29,493 ALSO WHAT I'M HEARING IS THE 3401 01:58:29,493 --> 01:58:32,196 ISSUE OF THEY WERE NOT AWARE, OR 3402 01:58:32,196 --> 01:58:33,297 THEY DIDN'T UNDERSTAND OR THEY 3403 01:58:33,297 --> 01:58:35,032 DIDN'T KNOW WHAT WAS HAPPENING 3404 01:58:35,032 --> 01:58:36,100 AND THEREFORE THEY HAVE ALL 3405 01:58:36,100 --> 01:58:37,534 THESE OTHER CONCERNS THAT WERE 3406 01:58:37,534 --> 01:58:38,135 EMERGING. 3407 01:58:38,135 --> 01:58:40,471 AND HOW MIGHT ENGAGEMENT ASSIST 3408 01:58:40,471 --> 01:58:40,771 RESEARCHERS? 3409 01:58:40,771 --> 01:58:41,472 >> GREAT. 3410 01:58:41,472 --> 01:58:43,207 SO WE AGAIN HAVE LOTS OF GREAT 3411 01:58:43,207 --> 01:58:44,708 RESPONSES. 3412 01:58:44,708 --> 01:58:47,544 SO IT HELPS RESEARCHERS 3413 01:58:47,544 --> 01:58:48,545 UNDERSTAND WHAT THE COMMUNITY 3414 01:58:48,545 --> 01:58:50,481 THINKS ABOUT RESEARCH. 3415 01:58:50,481 --> 01:58:53,317 LEARNING FROM THE SUBJECTS, MORE 3416 01:58:53,317 --> 01:58:54,985 TRANSPARENCY, MORE SUPPORT FROM 3417 01:58:54,985 --> 01:58:57,588 OTHER HEALTHCARE BODIES OR 3418 01:58:57,588 --> 01:59:00,524 HEALERS. 3419 01:59:00,524 --> 01:59:01,759 GIVES RESEARCHERS A BETTER 3420 01:59:01,759 --> 01:59:03,393 UNDERSTANDING OF THE UNIQUE 3421 01:59:03,393 --> 01:59:04,595 CULTURAL, SOCIAL AND OTHER 3422 01:59:04,595 --> 01:59:05,562 CONTEXTS OF THE COMMUNITY AND 3423 01:59:05,562 --> 01:59:09,933 EQUIP THEM TO COLLABORATE BETTER 3424 01:59:09,933 --> 01:59:10,901 WITH THE COMMUNITY IN RESEARCH 3425 01:59:10,901 --> 01:59:13,737 AND ALSO HELPS ENRICH THE 3426 01:59:13,737 --> 01:59:14,505 DESIGN, AND PERHAPS IMPROVING 3427 01:59:14,505 --> 01:59:18,976 THE SOCIAL VALUE, ACQUIRING 3428 01:59:18,976 --> 01:59:22,146 COMMUNAL SUPPORT, AND MAY BUILD 3429 01:59:22,146 --> 01:59:23,647 TRUST BETWEEN THE LOCAL 3430 01:59:23,647 --> 01:59:24,681 COMMUNITY AND THE RESEARCH TEAM. 3431 01:59:24,681 --> 01:59:26,950 >> THANK YOU, THANK YOU. 3432 01:59:26,950 --> 01:59:28,919 ALL VERY GREAT POINTS WHICH I 3433 01:59:28,919 --> 01:59:34,558 TOTALLY AGREE WITH. 3434 01:59:34,558 --> 01:59:37,861 PROVIDING A QUICK RECAP, -- 3435 01:59:37,861 --> 01:59:45,736 CORRECT RESPONSES, OR PERHAPS -- 3436 01:59:45,736 --> 01:59:47,271 GIVE INFORMATION AS MUCH AS WE 3437 01:59:47,271 --> 01:59:49,339 WANT, PEOPLE WILL UNDERSTAND AND 3438 01:59:49,339 --> 01:59:51,175 THE RUMORS WILL DISAPPEAR. 3439 01:59:51,175 --> 01:59:55,345 OUR EXPERIENCE SO FAR IS THAT 3440 01:59:55,345 --> 01:59:58,081 RUMORS ARE JUST A SYMPTOM OF 3441 01:59:58,081 --> 01:59:59,716 SOMETHING DEEPER, AND ENGAGEMENT 3442 01:59:59,716 --> 02:00:01,685 ITSELF CAN HELP YOU UNDERSTAND 3443 02:00:01,685 --> 02:00:03,754 WHAT IS THAT DEEPER ISSUES THAT 3444 02:00:03,754 --> 02:00:07,558 PEOPLE ARE CONCERNED ABOUT. 3445 02:00:07,558 --> 02:00:10,294 AND THAT COME OUT IN TERMS OF 3446 02:00:10,294 --> 02:00:11,028 RUMORS. 3447 02:00:11,028 --> 02:00:13,230 IT'S VERY EASY TO DISMISS 3448 02:00:13,230 --> 02:00:16,300 RUMORS, TO THINK WE DEVELOP 3449 02:00:16,300 --> 02:00:18,101 CAREFULLY CRAFTED -- AND 3450 02:00:18,101 --> 02:00:19,236 EVERYTHING WILL BE FINE. 3451 02:00:19,236 --> 02:00:20,671 IT'S GREAT TO HAVE THESE 3452 02:00:20,671 --> 02:00:22,105 MESSAGES, IT'S GREAT TO HAVE 3453 02:00:22,105 --> 02:00:23,607 INFORMATION SHARING SESSIONS, 3454 02:00:23,607 --> 02:00:27,444 BUT OVER AND ABOVE THAT, PERHAPS 3455 02:00:27,444 --> 02:00:29,413 WE NEED TO CONSIDER OTHER EXTRA 3456 02:00:29,413 --> 02:00:31,281 STEPS THAT NEED TO BE IN PLACE. 3457 02:00:31,281 --> 02:00:33,016 IN THE VIDEO I THINK YOU ALSO 3458 02:00:33,016 --> 02:00:34,318 HAD SOME OF THE PEOPLE SAYING OR 3459 02:00:34,318 --> 02:00:36,720 SOME OF THE COMMUNITY MEMBERS 3460 02:00:36,720 --> 02:00:41,825 SAYING THAT OUR STAFF THEMSELVES 3461 02:00:41,825 --> 02:00:44,995 ARE PART OF BRING RUMORS TO THE 3462 02:00:44,995 --> 02:00:46,396 COMMUNITY, THEY SAY WEIRD THINGS 3463 02:00:46,396 --> 02:00:48,232 HAPPEN IN THE WORLD. 3464 02:00:48,232 --> 02:00:50,367 AND IT BECAME REALLY CRITICAL TO 3465 02:00:50,367 --> 02:00:53,103 UNDERSTAND, IT'S VERY EASY TO BE 3466 02:00:53,103 --> 02:00:54,238 OUTWARD LOOKING, THINKING ABOUT 3467 02:00:54,238 --> 02:00:56,373 HOW PEOPLE THINK ABOUT THE WORK 3468 02:00:56,373 --> 02:00:58,242 OF THEIR RESEARCH BETTER THAN 3469 02:00:58,242 --> 02:01:02,479 EVEN THINKING ABOUT HOW DO 3470 02:01:02,479 --> 02:01:03,580 YOU -- VERY CLOSE PEOPLE WHO 3471 02:01:03,580 --> 02:01:07,184 WORK WITH THE RESEARCH, THE 3472 02:01:07,184 --> 02:01:10,220 DRIVERS, THE PEOPLE WHO ARE -- 3473 02:01:10,220 --> 02:01:15,926 WHAT THEY THINK OF YOUR WORK, 3474 02:01:15,926 --> 02:01:18,128 AND WE THEREFORE THINK ABOUT 3475 02:01:18,128 --> 02:01:22,366 MULTIPLE LEVELS OF ENGAGEMENT 3476 02:01:22,366 --> 02:01:25,435 FROM COMMUNITIES, TO STAFF, TO 3477 02:01:25,435 --> 02:01:26,370 KEY STAKEHOLDERS, THE OTHER 3478 02:01:26,370 --> 02:01:29,907 THING THAT REALLY INFORMED OUR 3479 02:01:29,907 --> 02:01:31,008 ENGAGEMENT STRATEGY IS TO THINK 3480 02:01:31,008 --> 02:01:32,643 OF ENGAGEMENT NOT JUST LIKE A 3481 02:01:32,643 --> 02:01:37,581 SHORT QUICK FIX SOLUTION TO A 3482 02:01:37,581 --> 02:01:40,050 PROBLEM BUT RATHER A LONG TERM 3483 02:01:40,050 --> 02:01:42,452 INVESTMENT IN RELATIONSHIP 3484 02:01:42,452 --> 02:01:46,189 BUILDING, IN GENUINELY SEEKING 3485 02:01:46,189 --> 02:01:48,358 OPINIONS OF COMMUNITY MEMBERS 3486 02:01:48,358 --> 02:01:49,259 INVOLVING THEM IN SO MANY 3487 02:01:49,259 --> 02:01:50,127 DIFFERENT WAYS. 3488 02:01:50,127 --> 02:01:51,895 AND I THINK THIS VIDEO IN 3489 02:01:51,895 --> 02:01:54,398 ADDITION TO SOME FORMATIVE WORK 3490 02:01:54,398 --> 02:01:55,933 WE WERE DOING AT THE TIME WAS 3491 02:01:55,933 --> 02:02:00,203 REALLY INSTRUMENTAL IN HELPING 3492 02:02:00,203 --> 02:02:03,974 US AS AN INSTITUTION TO -- WHAT 3493 02:02:03,974 --> 02:02:04,908 ARE OUR GOALS IN THE COMMUNITY 3494 02:02:04,908 --> 02:02:06,743 AND WHAT DOES THAT AIM TO DO AND 3495 02:02:06,743 --> 02:02:07,911 HOW CAN THAT BE SUSTAINED OVER 3496 02:02:07,911 --> 02:02:08,278 TIME. 3497 02:02:08,278 --> 02:02:11,181 SO IT CHANGED FROMLESS DEVELOPED 3498 02:02:11,181 --> 02:02:12,683 IC MATERIALS, INFORMATION 3499 02:02:12,683 --> 02:02:15,285 MATERIAL THAT CAN GO OUT TO HOW 3500 02:02:15,285 --> 02:02:18,789 DO WE CREATE AND SUSTAIN 3501 02:02:18,789 --> 02:02:19,456 MEANINGFUL RELATIONSHIPS WITH 3502 02:02:19,456 --> 02:02:25,562 THE COMMUNITY. 3503 02:02:25,562 --> 02:02:28,098 SO THAT'S A QUICK OVERVIEW OF 3504 02:02:28,098 --> 02:02:30,133 HOW COMMUNITY ENGAGEMENT IS SO 3505 02:02:30,133 --> 02:02:31,568 IMPORTANT IN MANY WAYS. 3506 02:02:31,568 --> 02:02:32,703 WE HAVE DOCUMENTED ABOUT THAT, 3507 02:02:32,703 --> 02:02:35,639 I'M NOT GOING TO GO INTO 3508 02:02:35,639 --> 02:02:36,073 DETAILS. 3509 02:02:36,073 --> 02:02:38,375 I THINK COMING FROM HERE, ONE OF 3510 02:02:38,375 --> 02:02:39,576 THE THINGS WE'VE COME TO REALIZE 3511 02:02:39,576 --> 02:02:40,978 VERY EARLY ON IS THAT COMMUNITY 3512 02:02:40,978 --> 02:02:44,481 ENGAGEMENT IS ACTUALLY NOW IN 3513 02:02:44,481 --> 02:02:48,418 MANY SITUATIONS BEING CONSIDERED 3514 02:02:48,418 --> 02:02:53,123 AS A -- MOST RESEARCH 3515 02:02:53,123 --> 02:02:54,391 INSTITUTIONS WOULD BE REQUIRING 3516 02:02:54,391 --> 02:02:57,027 PIs, RESEARCHERS, TO THINK 3517 02:02:57,027 --> 02:02:58,228 CAREFULLY ABOUT ENGAGEMENT. 3518 02:02:58,228 --> 02:02:59,963 AND THIS COULD BE ABOUT 3519 02:02:59,963 --> 02:03:02,265 COMMUNITY ENGAGEMENT, PUBLIC 3520 02:03:02,265 --> 02:03:02,566 ENGAGEMENT. 3521 02:03:02,566 --> 02:03:04,568 IN THE NEXT FEW SLIDES, I'LL TRY 3522 02:03:04,568 --> 02:03:05,869 TO TEASE OUT THESE TWO TERMS A 3523 02:03:05,869 --> 02:03:08,372 LITTLE BIT. 3524 02:03:08,372 --> 02:03:10,440 BUT TERMS BEING USED 3525 02:03:10,440 --> 02:03:10,874 INTERCHANGEABLY. 3526 02:03:10,874 --> 02:03:13,076 SO IT'S GREAT TO THINK ABOUT 3527 02:03:13,076 --> 02:03:15,912 ENGAGEMENT, WHY DO WE NEED 3528 02:03:15,912 --> 02:03:16,980 ENGAGEMENT? 3529 02:03:16,980 --> 02:03:22,019 THE ELEMENTS OF ENGAGEMENT ARE 3530 02:03:22,019 --> 02:03:22,786 COMPLETELY CONTEXTED. 3531 02:03:22,786 --> 02:03:24,855 WHAT ARE THE GOALS, SOME OF THEM 3532 02:03:24,855 --> 02:03:27,057 COULD BE -- WHO DO WE NEED TO 3533 02:03:27,057 --> 02:03:30,227 ENGAGE, WHO IS THE COMMUNITY? 3534 02:03:30,227 --> 02:03:31,862 WHO ARE THE REPRESENTATIVES, HOW 3535 02:03:31,862 --> 02:03:33,597 ARE THEY ELECTED, WHAT DO THEY 3536 02:03:33,597 --> 02:03:33,930 REPRESENT? 3537 02:03:33,930 --> 02:03:37,034 HOW DO WE ENGAGE -- PEOPLE ARE 3538 02:03:37,034 --> 02:03:39,803 SO DIFFERENT IN ANY ONE SETTING. 3539 02:03:39,803 --> 02:03:46,043 IT COULD BE IN A HEALTH 3540 02:03:46,043 --> 02:03:47,244 FACILITY, PEOPLE HAVE GOT VERY 3541 02:03:47,244 --> 02:03:50,614 DIFFERENT WAYS OF WANTING TO 3542 02:03:50,614 --> 02:03:52,816 BE -- AND WE WORK WITH THAT. 3543 02:03:52,816 --> 02:03:54,251 COMMUNITY ENGAGEMENT, WE SAY 3544 02:03:54,251 --> 02:03:56,686 IT'S IMPLEMENTED PRAGMATICALLY. 3545 02:03:56,686 --> 02:03:59,122 >> I'M SORRY TO INTERRUPT, 3546 02:03:59,122 --> 02:03:59,356 DORCAS? 3547 02:03:59,356 --> 02:04:02,092 >> THE NEED FOR ENGAGEMENT, TALK 3548 02:04:02,092 --> 02:04:02,859 TO PEOPLE. 3549 02:04:02,859 --> 02:04:03,727 >> DORCAS? 3550 02:04:03,727 --> 02:04:05,462 I'M SORRY TO INTERRUPT AGAIN BUT 3551 02:04:05,462 --> 02:04:06,897 YOUR SLIDES ARE NOT MOVING 3552 02:04:06,897 --> 02:04:07,330 FORWARD. 3553 02:04:07,330 --> 02:04:09,166 I DON'T KNOW IF YOU WANT YOUR 3554 02:04:09,166 --> 02:04:11,568 SLIDES TO MOVE FORWARD BUT WE'RE 3555 02:04:11,568 --> 02:04:13,670 STILL ON THE VERY FIRST SLIDE. 3556 02:04:13,670 --> 02:04:16,039 >> OH, MY GOD. 3557 02:04:16,039 --> 02:04:16,273 OKAY. 3558 02:04:16,273 --> 02:04:19,676 CAN I JUST COME OFF THE MEETING 3559 02:04:19,676 --> 02:04:20,210 AND -- AGAIN? 3560 02:04:20,210 --> 02:04:21,211 BECAUSE I THINK -- 3561 02:04:21,211 --> 02:04:22,179 >> SURE. 3562 02:04:22,179 --> 02:04:24,014 YOU'RE WELCOME TO DO THAT. 3563 02:04:24,014 --> 02:04:28,051 >> LET ME LEAVE AND THEN JOIN. 3564 02:04:28,051 --> 02:04:33,657 SORRY ABOUT THAT. 3565 02:04:33,657 --> 02:04:35,158 >> YOU'RE SHARING THE WRONG 3566 02:04:35,158 --> 02:04:36,893 SCREEN, DORCAS, ACCORDING TO AV. 3567 02:04:36,893 --> 02:04:38,695 SO IT MAY BE THAT YOU HAVE TWO 3568 02:04:38,695 --> 02:04:41,064 SETS OF YOUR POWERPOINT OPEN ON 3569 02:04:41,064 --> 02:04:42,599 YOUR SCREEN. 3570 02:04:42,599 --> 02:04:44,901 SO YOU MIGHT WANT TO CLOSE THOSE 3571 02:04:44,901 --> 02:04:47,237 OUT AND RE-OPEN THEM. 3572 02:04:47,237 --> 02:04:48,071 >> OKAY. 3573 02:04:48,071 --> 02:04:49,973 I'M GOING TO TRY TO LEAVE AND I 3574 02:04:49,973 --> 02:04:50,707 CAN'T LEAVE. 3575 02:04:50,707 --> 02:04:52,509 >> SO ALL WE SEE ON OUR SCREEN 3576 02:04:52,509 --> 02:04:53,743 NOW IS YOU. 3577 02:04:53,743 --> 02:04:54,544 WHICH IS TERRIFIC. 3578 02:04:54,544 --> 02:04:55,479 >> YES. 3579 02:04:55,479 --> 02:04:58,648 >> I CAN ALSO OPEN THE SLIDES ON 3580 02:04:58,648 --> 02:05:00,283 THE COMPUTER HERE IN THE ROOM, 3581 02:05:00,283 --> 02:05:03,353 AND YOU COULD TELL ME WHEN YOU 3582 02:05:03,353 --> 02:05:04,788 WOULD LIKE ME TO ADVANCE THEM. 3583 02:05:04,788 --> 02:05:06,923 WOULD YOU LIKE ME TO DO THAT? 3584 02:05:06,923 --> 02:05:08,158 >> YES, THAT'S FINE. 3585 02:05:08,158 --> 02:05:08,792 LET'S DO THAT. 3586 02:05:08,792 --> 02:05:09,359 >> GREAT. 3587 02:05:09,359 --> 02:05:11,027 LET ME JUST -- 3588 02:05:11,027 --> 02:05:12,195 >> NONE OF THE BUTTONS ARE 3589 02:05:12,195 --> 02:05:13,296 WORKING FROM MY END NOW. 3590 02:05:13,296 --> 02:05:14,064 >> GREAT. 3591 02:05:14,064 --> 02:05:23,340 SO I'M GOING TO OPEN IT UP HERE. 3592 02:05:23,340 --> 02:05:24,407 YOU CAN TELL ME WAR TO ADVANCE 3593 02:05:24,407 --> 02:05:24,774 TO. 3594 02:05:24,774 --> 02:05:25,742 I'M CURRENTLY ON THE FIRST 3595 02:05:25,742 --> 02:05:25,942 SLIDE. 3596 02:05:25,942 --> 02:05:32,249 >> I THINK I'M UP TO WHERE -- 3597 02:05:32,249 --> 02:05:42,792 COMMUNITY ENGAGEMENT CONTESTED. 3598 02:05:48,265 --> 02:05:49,599 >> WHAT I HAVE ON MY SCREEN 3599 02:05:49,599 --> 02:05:55,405 RIGHT NOW, DORCAS, IS THE RECAP 3600 02:05:55,405 --> 02:05:55,705 PRE-SESSION. 3601 02:05:55,705 --> 02:05:56,706 >> OKAY. 3602 02:05:56,706 --> 02:05:58,041 MOVE TO THE NEXT SLIDE. 3603 02:05:58,041 --> 02:05:58,975 >> OKAY. 3604 02:05:58,975 --> 02:06:03,580 SO NOW I'M ON -- I'M ON MANY 3605 02:06:03,580 --> 02:06:04,781 ELEMENTS OF COMMUNITY PUBLIC 3606 02:06:04,781 --> 02:06:06,216 ENGAGEMENT. 3607 02:06:06,216 --> 02:06:07,751 COMPLEX AND CONTESTED. 3608 02:06:07,751 --> 02:06:08,518 >> YES. 3609 02:06:08,518 --> 02:06:08,718 OKAY. 3610 02:06:08,718 --> 02:06:09,085 >> GREAT. 3611 02:06:09,085 --> 02:06:10,921 >> SO LET'S CONTINUE FROM THERE. 3612 02:06:10,921 --> 02:06:11,922 MOVE TO THE NEXT SLIDE. 3613 02:06:11,922 --> 02:06:13,490 >> NEXT SLIDE. 3614 02:06:13,490 --> 02:06:14,057 >> YES. 3615 02:06:14,057 --> 02:06:14,624 >> YEP. 3616 02:06:14,624 --> 02:06:15,959 WE'RE THERE. 3617 02:06:15,959 --> 02:06:19,696 >> YES. 3618 02:06:19,696 --> 02:06:21,731 AGAIN, NEXT. 3619 02:06:21,731 --> 02:06:22,933 NEXT. 3620 02:06:22,933 --> 02:06:25,235 YES. 3621 02:06:25,235 --> 02:06:27,437 SO WHY ENGAGE. 3622 02:06:27,437 --> 02:06:29,839 MOST OF THE GOALS THAT HAVE BEEN 3623 02:06:29,839 --> 02:06:31,575 PUT FOR ENGAGEMENT COULD BE 3624 02:06:31,575 --> 02:06:33,243 GROUPED INTO WHAT WE CALL 3625 02:06:33,243 --> 02:06:34,344 INSTRUMENTAL GOALS OR VALUES. 3626 02:06:34,344 --> 02:06:38,381 THESE ARE THE EASY ONES. 3627 02:06:38,381 --> 02:06:40,083 THESE COULD BE HEALTH POLICY AND 3628 02:06:40,083 --> 02:06:41,351 PRACTICE OR HEALTH RESEARCH, AND 3629 02:06:41,351 --> 02:06:44,487 I'LL GIVE AN EXAMPLE OF THAT. 3630 02:06:44,487 --> 02:06:46,790 BUT ALSO WHAT WE SEE AS 3631 02:06:46,790 --> 02:06:47,324 INTRINSIC VALUE. 3632 02:06:47,324 --> 02:06:49,759 THAT ENGAGEMENT IN ITSELF IS THE 3633 02:06:49,759 --> 02:06:53,463 RIGHT THING, IT'S A GOOD THING. 3634 02:06:53,463 --> 02:06:54,931 IF IT DOESN'T LEAD TO ANYTHING 3635 02:06:54,931 --> 02:06:55,865 ELSE, THE FACT THAT AS 3636 02:06:55,865 --> 02:06:56,967 RESEARCHERS WE ARE ENGAGING 3637 02:06:56,967 --> 02:06:57,601 COMMUNITIES IS A GOOD THING. 3638 02:06:57,601 --> 02:07:02,872 IT'S PART OF BEING A -- IN THAT 3639 02:07:02,872 --> 02:07:03,907 COMMUNITY, NOT SEEING YOURSELF 3640 02:07:03,907 --> 02:07:06,376 AS A SEPARATE ENTITY FROM WHAT 3641 02:07:06,376 --> 02:07:07,544 THE COMMUNITY ARE. 3642 02:07:07,544 --> 02:07:10,947 NEXT SLIDE. 3643 02:07:10,947 --> 02:07:13,583 WHAT HAPPENS WHAT WE CAN VERY 3644 02:07:13,583 --> 02:07:16,419 EASILY RELATE TO INSTRUMENTAL 3645 02:07:16,419 --> 02:07:20,790 VALUES OF COMMUNITY ENGAGEMENT, 3646 02:07:20,790 --> 02:07:23,760 PERHAPS YOU WANT TO SEE WHAT 3647 02:07:23,760 --> 02:07:26,162 YOU'RE PROPOSING IS RELEVANT AND 3648 02:07:26,162 --> 02:07:29,432 ACCEPTABLE TO THE POPULATION, 3649 02:07:29,432 --> 02:07:31,401 THE RESEARCH VALUES ARE 3650 02:07:31,401 --> 02:07:35,538 APPROPRIATE, HOW TO MAKE SURE 3651 02:07:35,538 --> 02:07:38,608 THAT APPROPRIATE POLICIES ARE 3652 02:07:38,608 --> 02:07:39,609 ETHICAL, ALSO YOU MIGHT WANT TO 3653 02:07:39,609 --> 02:07:41,578 BE DISCUSSING ABOUT BENEFITS OF 3654 02:07:41,578 --> 02:07:43,046 RESEARCH AND HOW THOSE PLAY OUT 3655 02:07:43,046 --> 02:07:44,614 IN HOUSEHOLD DYNAMICS AND 3656 02:07:44,614 --> 02:07:45,815 COMMUNITY DYNAMICS. 3657 02:07:45,815 --> 02:07:47,684 YOU MIGHT ALSO WANT TO CONSIDER 3658 02:07:47,684 --> 02:07:49,119 HOW YOUR RESEARCH PROGRAM IS 3659 02:07:49,119 --> 02:07:51,521 GOING TO BE EMBEDDED WITHIN 3660 02:07:51,521 --> 02:07:53,390 HEALTHCARE SYSTEMS, AND, 3661 02:07:53,390 --> 02:07:57,093 THEREFORE, NOT SUPPLANT -- THAT 3662 02:07:57,093 --> 02:07:59,829 HAVE BEEN -- TAKEN OVER THE 3663 02:07:59,829 --> 02:08:00,830 SERVICES OF THE HEALTH SYSTEM. 3664 02:08:00,830 --> 02:08:02,666 SO THESE ARE INCREDIBLE GOALS 3665 02:08:02,666 --> 02:08:03,566 FOR ENGAGEMENT. 3666 02:08:03,566 --> 02:08:05,201 THE HEALTH POLICY, YOU MIGHT BE 3667 02:08:05,201 --> 02:08:08,571 WANTING TO MEASURE THAT -- 3668 02:08:08,571 --> 02:08:10,540 WHATEVER POLICY -- ARE BEING 3669 02:08:10,540 --> 02:08:12,409 PRESENTED, THEY HAVE GOT THE 3670 02:08:12,409 --> 02:08:13,343 BUY-IN OF THE COMMUNITY AND OF 3671 02:08:13,343 --> 02:08:14,411 THE POPULATIONS. 3672 02:08:14,411 --> 02:08:15,712 AND ALSO THINK ABOUT HOW 3673 02:08:15,712 --> 02:08:17,047 HEALTHCARE CAN BE EQUITABLE AND 3674 02:08:17,047 --> 02:08:17,681 SO OH. 3675 02:08:17,681 --> 02:08:19,983 SO ALL THOSE INSTRUMENTAL 3676 02:08:19,983 --> 02:08:20,216 VALUES. 3677 02:08:20,216 --> 02:08:21,117 EIGHT OF THEM IS BETTER, BUT 3678 02:08:21,117 --> 02:08:23,753 WHAT I'M SAYING IS AS MUCH AS 3679 02:08:23,753 --> 02:08:25,488 INSTRUMENTAL VALUES ARE EASY TO 3680 02:08:25,488 --> 02:08:27,590 PIN INTO, A LONG TIME INVESTMENT 3681 02:08:27,590 --> 02:08:32,062 IN ENGAGEMENT ALSO HELPS US 3682 02:08:32,062 --> 02:08:34,798 THINK ABOUT INTRINSIC VALUES. 3683 02:08:34,798 --> 02:08:35,799 SOMETIMES THEY ARE NOT 3684 02:08:35,799 --> 02:08:36,866 INTENTIONS, THEY JUST BUILD UP 3685 02:08:36,866 --> 02:08:38,735 INTO EACH OTHER. 3686 02:08:38,735 --> 02:08:41,805 SO HAVING SAID THAT, THEN WHO IS 3687 02:08:41,805 --> 02:08:42,439 A COMMUNITY? 3688 02:08:42,439 --> 02:08:44,974 YOU'RE GOING TO -- WHERE YOU 3689 02:08:44,974 --> 02:08:45,608 START FROM? 3690 02:08:45,608 --> 02:08:47,077 YOU GO TO A POPULATION, WHERE DO 3691 02:08:47,077 --> 02:08:48,144 YOU START FROM? 3692 02:08:48,144 --> 02:08:49,245 AND THERE ARE MANY DEFINITIONS 3693 02:08:49,245 --> 02:08:51,314 THAT HAVE BEEN GIVEN ABOUT 3694 02:08:51,314 --> 02:08:51,581 COMMUNITY. 3695 02:08:51,581 --> 02:08:54,718 SOME OF THEM ARE PART OF THE 3696 02:08:54,718 --> 02:08:55,719 GEOGRAPHIC REGION OR WHETHER THE 3697 02:08:55,719 --> 02:08:58,555 POPULATION IS OR SPECIAL 3698 02:08:58,555 --> 02:08:59,856 INTEREST OR PEOPLE WHO ARE 3699 02:08:59,856 --> 02:09:03,360 DEFINED BY PERHAPS YOUR RESEARCH 3700 02:09:03,360 --> 02:09:04,561 INTERESTS, IT COULD BE ABOUT A 3701 02:09:04,561 --> 02:09:05,562 SPECIFIC DISEASE AND THEREFORE 3702 02:09:05,562 --> 02:09:10,133 YOU'RE LOOKING FOR -- 3703 02:09:10,133 --> 02:09:11,000 CONDITIONS. 3704 02:09:11,000 --> 02:09:15,505 IT'S ALSO IMPORTANT TO -- HOW 3705 02:09:15,505 --> 02:09:17,040 WE'RE DEFINING COMMUNITIES AS 3706 02:09:17,040 --> 02:09:18,108 RESEARCHERS MAY NOT ALWAYS BE 3707 02:09:18,108 --> 02:09:19,342 HOW COMMUNITIES THEMSELVES SEE 3708 02:09:19,342 --> 02:09:20,977 THAT. 3709 02:09:20,977 --> 02:09:26,883 AND SO WE SAY THERE IS WHAT YOU 3710 02:09:26,883 --> 02:09:28,718 CALL YOUR -- OF A COMMUNITY AND 3711 02:09:28,718 --> 02:09:30,153 THAT IS VERY COMMON, AND IT 3712 02:09:30,153 --> 02:09:32,655 COULD BE THAT YOUR BOND INTO A 3713 02:09:32,655 --> 02:09:34,090 CERTAIN TRIBE, A CERTAIN -- 3714 02:09:34,090 --> 02:09:35,291 WHICH HAS GOT A CERTAIN WAY OF, 3715 02:09:35,291 --> 02:09:38,027 YOU KNOW, THEIR CULTURE AND 3716 02:09:38,027 --> 02:09:40,330 CUSTOMS AND THEREFORE -- DEFINED 3717 02:09:40,330 --> 02:09:43,933 BY YOUR INITIAL COMMUNITY. 3718 02:09:43,933 --> 02:09:45,235 MAY NOT NECESSARILY SEE 3719 02:09:45,235 --> 02:09:47,470 THEMSELVES AS -- AS WHAT THEY 3720 02:09:47,470 --> 02:09:49,005 ARE DEFINING COMMUNITY. 3721 02:09:49,005 --> 02:09:50,340 AND I GUESS WHAT I'M TRYING TO 3722 02:09:50,340 --> 02:09:52,275 POINT OUT IS THAT IT IMPORTANT 3723 02:09:52,275 --> 02:09:55,111 TO ALWAYS BE -- THAT'S THE WAY 3724 02:09:55,111 --> 02:09:58,848 WE AS RESEARCHERS MIGHT BE 3725 02:09:58,848 --> 02:09:59,949 DEFINING COMMUNITIES -- HOW 3726 02:09:59,949 --> 02:10:06,189 COMMUNITY THEMSELVES THINK. 3727 02:10:06,189 --> 02:10:07,924 AND JUST A QUICK EXAMPLE OF HOW 3728 02:10:07,924 --> 02:10:11,528 THIS MIGHT PLAY OUT. 3729 02:10:11,528 --> 02:10:12,962 THIS IS ONE OF THE SITES IN OUR 3730 02:10:12,962 --> 02:10:13,263 INSTITUTION. 3731 02:10:13,263 --> 02:10:14,697 WHAT YOU HAVE ON YOUR LEFT ARE 3732 02:10:14,697 --> 02:10:16,566 ALL KINDS OF STAKEHOLDERS AND 3733 02:10:16,566 --> 02:10:17,867 COMMUNITIES THAT WE MIGHT WANT 3734 02:10:17,867 --> 02:10:21,037 TO ENGAGE WITH. 3735 02:10:21,037 --> 02:10:23,673 THE CIRCLE IS DIFFERENT 3736 02:10:23,673 --> 02:10:24,541 TERMINOLOGIES THAT CAN BE USED 3737 02:10:24,541 --> 02:10:25,742 WHEN YOU'RE ENGAGING WITH THEM, 3738 02:10:25,742 --> 02:10:27,377 AND FINALLY, WE NEED TO 3739 02:10:27,377 --> 02:10:28,278 RECOGNIZE THAT MANY OF THESE 3740 02:10:28,278 --> 02:10:29,479 WOULD BE PLAYING DIFFERENT 3741 02:10:29,479 --> 02:10:30,113 ROLES. 3742 02:10:30,113 --> 02:10:31,548 AT ONE TIME WE ARE ENGAGING WITH 3743 02:10:31,548 --> 02:10:33,183 THE POLICY MAKERS, SO THAT THEY 3744 02:10:33,183 --> 02:10:36,519 CAN INFORM ON OUR RESEARCH, BUT 3745 02:10:36,519 --> 02:10:38,321 ON THE OTHER HAND -- AS WELL 3746 02:10:38,321 --> 02:10:39,656 COMMUNITY MEMBERS WITH SPECIFIC 3747 02:10:39,656 --> 02:10:40,757 INTERESTS, AND THOSE WILL PLAY 3748 02:10:40,757 --> 02:10:47,297 OUT IN THE SPACES OF ENGAGEMENT. 3749 02:10:47,297 --> 02:10:50,266 SO OFTEN WE TALK ABOUT 3750 02:10:50,266 --> 02:10:51,334 STAKEHOLDER ANALYSIS AND 3751 02:10:51,334 --> 02:10:52,268 COMMUNITY IS ONE OF THE STAKE 3752 02:10:52,268 --> 02:10:55,505 HOLD ARES AND FIGURING CAREFULLY 3753 02:10:55,505 --> 02:10:58,675 HOW YOU NEED -- SORRY -- 3754 02:10:58,675 --> 02:11:03,046 STAKEHOLDER -- AND WHO ARE THE 3755 02:11:03,046 --> 02:11:04,047 COMMUNITIES AND STAKEHOLDERS YOU 3756 02:11:04,047 --> 02:11:06,149 NEED TO ENGAGE FOR YOUR RESEARCH 3757 02:11:06,149 --> 02:11:08,084 AND HOW THAT MIGHT PLAY OUT IN 3758 02:11:08,084 --> 02:11:09,052 THE COLLABORATIONS THAT YOU'RE 3759 02:11:09,052 --> 02:11:12,088 SETTING UP. 3760 02:11:12,088 --> 02:11:15,592 SO IF WE TAKE A MINUTE JUST FOR 3761 02:11:15,592 --> 02:11:18,428 OURSELVES, THIS IS NOT TO 3762 02:11:18,428 --> 02:11:20,864 RESPOND, JUST A QUICK REFRESHING 3763 02:11:20,864 --> 02:11:21,865 FOR A MINUTE, YOU CAN THINK 3764 02:11:21,865 --> 02:11:23,066 ABOUT YOURSELF AND WHERE YOU 3765 02:11:23,066 --> 02:11:25,935 SIT, HOW MANY COMMUNITIES ARE 3766 02:11:25,935 --> 02:11:28,638 YOU A PART OF? 3767 02:11:28,638 --> 02:11:32,575 IT COULD BE FROM -- IN A SOCIAL 3768 02:11:32,575 --> 02:11:35,211 GROUP TO WHATEVER ELSE YOU'RE 3769 02:11:35,211 --> 02:11:35,778 INVOLVED IN. 3770 02:11:35,778 --> 02:11:39,482 SOME OF THOSE MIGHT BE TIGHTLY 3771 02:11:39,482 --> 02:11:40,817 KNIT COMMUNITIES, OTHERS MIGHT 3772 02:11:40,817 --> 02:11:44,287 BE LOOSE GROUPINGS, FOR EACH OF 3773 02:11:44,287 --> 02:11:46,923 THOSE YOU CAN START THINKING HOW 3774 02:11:46,923 --> 02:11:48,358 WOULD OUTSIDERS IDENTIFY AND 3775 02:11:48,358 --> 02:11:51,961 ENGAGE WITH YOU? 3776 02:11:51,961 --> 02:11:53,263 AND THEN FOR EACH OF THOSE 3777 02:11:53,263 --> 02:11:54,464 COMMUNITIES, WHO CAN SPEAK ON 3778 02:11:54,464 --> 02:11:57,967 YOUR BEHALF? 3779 02:11:57,967 --> 02:11:59,102 AND IF YOU ARE THE ONE SPEAKING 3780 02:11:59,102 --> 02:12:00,270 ON BEHALF OF OTHERS, HOW DO YOU 3781 02:12:00,270 --> 02:12:03,006 COME TO BE SPEAKING ON BEHALF OF 3782 02:12:03,006 --> 02:12:05,208 OTHERS? 3783 02:12:05,208 --> 02:12:06,843 SO THE WAY WE ARE REFLECTING ON 3784 02:12:06,843 --> 02:12:08,244 THIS FOR OURSELVES IS VERY 3785 02:12:08,244 --> 02:12:09,245 SIMILAR WORK FOR MANY OF OUR 3786 02:12:09,245 --> 02:12:13,950 COMMUNITY MEMBERS WHO WOULD BE 3787 02:12:13,950 --> 02:12:14,984 REFLECTING HOW YOU'RE ENGAGING 3788 02:12:14,984 --> 02:12:15,485 WITH THEM. 3789 02:12:15,485 --> 02:12:18,821 HAVING SAID WHAT IS COMMUNITY 3790 02:12:18,821 --> 02:12:19,656 AND LEAVING YOU WITH ALL LAYERS 3791 02:12:19,656 --> 02:12:21,124 OF WHAT YOU WOULD DEFINE AS 3792 02:12:21,124 --> 02:12:23,359 COMMUNITY, THE NEXT LEVEL IS 3793 02:12:23,359 --> 02:12:25,128 THEREFORE WHAT IS ENGAGEMENT, 3794 02:12:25,128 --> 02:12:29,599 AND WHAT IS COMMUNITY 3795 02:12:29,599 --> 02:12:31,568 ENGAGEMENT, PUBLIC ENGAGEMENT ?L 3796 02:12:31,568 --> 02:12:37,574 NOW -- IN MY SLIDE. 3797 02:12:37,574 --> 02:12:40,543 WHAT YOU HAVE UNITED NATIONS SET 3798 02:12:40,543 --> 02:12:40,743 OUT -- 3799 02:12:40,743 --> 02:12:42,612 >> OH, YES, YES, THAT'S WHAT WE 3800 02:12:42,612 --> 02:12:43,713 HAVE ON THE SLIDE. 3801 02:12:43,713 --> 02:12:45,081 >> SORRY? 3802 02:12:45,081 --> 02:12:48,084 >> WHAT WE HAVE ON THE SLIDE IS 3803 02:12:48,084 --> 02:12:51,054 "BUT WHAT IS COMMUNITY/PUBLIC 3804 02:12:51,054 --> 02:12:52,021 ENGAGEMENT" AND THE UNITED 3805 02:12:52,021 --> 02:12:52,555 NATIONS GUIDELINES. 3806 02:12:52,555 --> 02:12:54,891 >> YES. 3807 02:12:54,891 --> 02:12:58,061 SO THE UNITED NATIONS GUIDELINE 3808 02:12:58,061 --> 02:12:59,128 PROVIDE A VERY GOOD DESCRIPTION 3809 02:12:59,128 --> 02:13:01,864 ABOUT COMMUNITY ENGAGEMENT. 3810 02:13:01,864 --> 02:13:06,803 DESCRIBED AS A STRATEGIC PROCESS 3811 02:13:06,803 --> 02:13:10,173 IN -- INVOLVING LOCAL -- 3812 02:13:10,173 --> 02:13:12,041 DECISION-MAKING AND 3813 02:13:12,041 --> 02:13:13,376 IMPLEMENTATION. 3814 02:13:13,376 --> 02:13:14,677 THEY FOCUS ON COMMUNITY 3815 02:13:14,677 --> 02:13:16,045 ENGAGEMENT, FEEL FREE TO LOOK AT 3816 02:13:16,045 --> 02:13:20,950 THOSE GUIDELINES BY UN. 3817 02:13:20,950 --> 02:13:23,786 AND NEXT -- AND THEN ALONGSIDE 3818 02:13:23,786 --> 02:13:25,221 THAT, YOU ALSO HAVE WHAT YOU 3819 02:13:25,221 --> 02:13:26,522 CALL PUBLIC ENGAGEMENT. 3820 02:13:26,522 --> 02:13:28,057 AND IN THE NEXT FEW SLIDES, I'LL 3821 02:13:28,057 --> 02:13:31,561 TRY TO TEASE OUT THIS. 3822 02:13:31,561 --> 02:13:34,831 BUT JUST RECOGNIZE THAT A LOT OF 3823 02:13:34,831 --> 02:13:35,498 TIMES, SOMETIMES COMMUNITY AND 3824 02:13:35,498 --> 02:13:37,033 PUBLIC ENGAGEMENT CAN BE USED 3825 02:13:37,033 --> 02:13:40,970 QUITE INTERCHANGEABLY. 3826 02:13:40,970 --> 02:13:41,704 BUT SOMETIMES THERE IS A 3827 02:13:41,704 --> 02:13:42,605 DIFFERENCE BETWEEN THE TWO. 3828 02:13:42,605 --> 02:13:44,374 AND THE PUBLIC ENGAGEMENT IS A 3829 02:13:44,374 --> 02:13:48,411 PROCESS THAT PROVIDES PEOPLE 3830 02:13:48,411 --> 02:13:49,712 WITH TRUSTWORTHY INFORMATION ON 3831 02:13:49,712 --> 02:13:52,815 KEY POLICY ISSUES, AND THAT IS 3832 02:13:52,815 --> 02:13:54,450 REALLY IMPORTANT BECAUSE I THINK 3833 02:13:54,450 --> 02:13:58,755 THERE'S A REAL FOCUS ON 3834 02:13:58,755 --> 02:14:00,790 INFORMATION-GIVING. 3835 02:14:00,790 --> 02:14:01,991 IF YOU HAVE SOME TIME YOU CAN 3836 02:14:01,991 --> 02:14:04,160 LOOK AT IT, IT DOES DEFINE WHAT 3837 02:14:04,160 --> 02:14:05,495 IS PUBLIC ENGAGEMENT. 3838 02:14:05,495 --> 02:14:08,865 NEXT. 3839 02:14:08,865 --> 02:14:10,299 SO WHEN WE THINK ABOUT 3840 02:14:10,299 --> 02:14:12,935 ENGAGEMENT, THERE ARE DIFFERENT 3841 02:14:12,935 --> 02:14:14,103 TYPES AND DEPTHS OF ENGAGEMENT 3842 02:14:14,103 --> 02:14:16,105 AND THIS COULD BE AT COMMUNITY 3843 02:14:16,105 --> 02:14:17,106 LEVEL AND AT PUBLIC LEVEL. 3844 02:14:17,106 --> 02:14:20,677 WHAT YOU SEE THERE ARE SOME OF 3845 02:14:20,677 --> 02:14:22,278 THE WAYS IN WHICH HEALTH 3846 02:14:22,278 --> 02:14:23,680 FACILITIES MIGHT BE PROVIDED 3847 02:14:23,680 --> 02:14:25,882 INFORMATION TO PATIENTS WHO ARE 3848 02:14:25,882 --> 02:14:28,518 COMING IN, INCLUDING WAITING 3849 02:14:28,518 --> 02:14:29,385 TIME CHARGES AND SO ON. 3850 02:14:29,385 --> 02:14:30,787 THAT'S A FORM OF PUBLIC 3851 02:14:30,787 --> 02:14:36,826 INFORMATION SHARING. 3852 02:14:36,826 --> 02:14:38,361 SO THERE ARE DIFFERENT 3853 02:14:38,361 --> 02:14:40,663 OPERATIVES THAT CAN BE USED. 3854 02:14:40,663 --> 02:14:43,499 INFORMATION SHARING, VERY LITTLE 3855 02:14:43,499 --> 02:14:46,803 INTERACTION BETWEEN -- YOU ALSO 3856 02:14:46,803 --> 02:14:48,671 HAVE ACTIVITY THAT ARE QUITE 3857 02:14:48,671 --> 02:14:49,872 INTERACTIVE WITH THE DIFFERENT 3858 02:14:49,872 --> 02:14:55,111 STAKEHOLDERS. 3859 02:14:55,111 --> 02:14:56,646 COMMUNITY-BASED PARTICIPATORY 3860 02:14:56,646 --> 02:14:58,781 APPROACH IS ONE THAT IS SHOWN OR 3861 02:14:58,781 --> 02:15:03,553 HAS BEEN DESCRIBED AS PROVI 3862 02:15:03,553 --> 02:15:05,521 PROVIDING -- IN TERMS OF 3863 02:15:05,521 --> 02:15:06,055 ENGAGEMENT. 3864 02:15:06,055 --> 02:15:07,623 THIS IS A BOOK THAT IS TALKING 3865 02:15:07,623 --> 02:15:08,691 ABOUT -- ACTION RESEARCH IN 3866 02:15:08,691 --> 02:15:11,227 HEALTH SYSTEMS, AND I KNOW THERE 3867 02:15:11,227 --> 02:15:12,562 ARE MANY TECHNOLOGIES THAT ARE 3868 02:15:12,562 --> 02:15:16,699 USED TO DESCRIBE -- RESEARCH, 3869 02:15:16,699 --> 02:15:18,334 DIFFERENT METHODOLOGIES, YOU 3870 02:15:18,334 --> 02:15:20,136 HAVE ALL THE ACRONYMS LISTED 3871 02:15:20,136 --> 02:15:20,436 DOWN THERE. 3872 02:15:20,436 --> 02:15:26,109 WHAT IS IMPORTANT IS THAT THE 3873 02:15:26,109 --> 02:15:28,745 COMMUNITY MEMBERS, HERE WE TALK 3874 02:15:28,745 --> 02:15:29,746 ABOUT THEM AS SUBJECTS OF 3875 02:15:29,746 --> 02:15:32,048 RESEARCH BECAUSE THAT'S HOW 3876 02:15:32,048 --> 02:15:32,949 THEY'RE DESCRIBED IN THE BOOK 3877 02:15:32,949 --> 02:15:34,250 BUT ACTUALLY THE COMMUNITY 3878 02:15:34,250 --> 02:15:35,651 MEMBERS ARE ACTIVE RESEARCHERS 3879 02:15:35,651 --> 02:15:36,753 AND ENGINES OF CHANGING THEIR 3880 02:15:36,753 --> 02:15:37,520 OWN COMMUNITIES. 3881 02:15:37,520 --> 02:15:40,490 AND SO YOU'RE THINKING ABOUT AN 3882 02:15:40,490 --> 02:15:41,924 ENGAGEMENT THAT IS MOVING 3883 02:15:41,924 --> 02:15:44,560 TOWARDS PARTNERSHIP RATHER THAN 3884 02:15:44,560 --> 02:15:45,862 SEEING RESEARCHERS AND 3885 02:15:45,862 --> 02:15:47,096 COMMUNITIES IN SEPARATE BODIES 3886 02:15:47,096 --> 02:15:50,166 BUT SEEING THEM AS COMING 3887 02:15:50,166 --> 02:15:53,436 TOGETHER OF INTEREST. 3888 02:15:53,436 --> 02:15:56,472 NEXT. 3889 02:15:56,472 --> 02:15:58,441 SO WE TALK ABOUT WHAT IS 3890 02:15:58,441 --> 02:16:01,077 ENGAGEMENT TALK ABOUT A SPECTRUM 3891 02:16:01,077 --> 02:16:05,915 OF ENGAGEMENT. 3892 02:16:05,915 --> 02:16:08,417 RANGING FROM WHAT WE CALL WIDEN 3893 02:16:08,417 --> 02:16:10,286 GAUGEMENT, AND WIDEN GAUGEMENT, 3894 02:16:10,286 --> 02:16:16,993 WIDE ENGAGEMENT,TRYING TO REACHE 3895 02:16:16,993 --> 02:16:18,494 AS POSSIBLE, YOU'RE LIKELY TO BE 3896 02:16:18,494 --> 02:16:23,833 LESS PARTICIPATORY, AND MIGHT BE 3897 02:16:23,833 --> 02:16:24,634 MORE DIRECTED. 3898 02:16:24,634 --> 02:16:26,402 IT MIGHT NOT NECESSARILY BE 3899 02:16:26,402 --> 02:16:28,805 SEEKING OPINIONS, YOU MIGHT JUST 3900 02:16:28,805 --> 02:16:34,377 WANT TO BE PASSING INFORMATION. 3901 02:16:34,377 --> 02:16:38,681 AND IT -- ISSUES LIKE PUTTING 3902 02:16:38,681 --> 02:16:41,951 ADVERTISEADVERTISEMENT IN NEWSP, 3903 02:16:41,951 --> 02:16:42,952 RADIOS, SOCIAL MEDIA, WHERE 3904 02:16:42,952 --> 02:16:48,090 YOU'RE NOT HAVING THAT 3905 02:16:48,090 --> 02:16:49,959 INTERACTION WOULD TEND TO BE 3906 02:16:49,959 --> 02:16:50,626 WIDE ENGAGEMENT. 3907 02:16:50,626 --> 02:16:54,330 THE OTHER EXTREME END IS WHAT 3908 02:16:54,330 --> 02:16:56,098 YOU CALL NARROW ENGAGEMENT. 3909 02:16:56,098 --> 02:16:58,734 THIS IS WHERE THERE'S MORE 3910 02:16:58,734 --> 02:17:00,269 DIRECTED PARTICIPATORY APPROACH 3911 02:17:00,269 --> 02:17:03,005 TO ENGAGEMENT, YOU'RE MEETING, 3912 02:17:03,005 --> 02:17:04,440 INTERACTING, SEEKING, YOU'RE 3913 02:17:04,440 --> 02:17:05,641 MAKING DECISIONS TOGETHER, 3914 02:17:05,641 --> 02:17:08,377 YOU'RE AGREEING ON ROLES AND 3915 02:17:08,377 --> 02:17:09,912 RESPONSIBILITIES AND SO WHOEVER 3916 02:17:09,912 --> 02:17:10,947 YOU'RE ENGAGING BECOMES PART OF 3917 02:17:10,947 --> 02:17:12,215 THE TEAM, AND EVEN WITHIN THERE, 3918 02:17:12,215 --> 02:17:14,550 YOU HAVE A WHOLE RANGE OF 3919 02:17:14,550 --> 02:17:15,184 SPECTRUM. 3920 02:17:15,184 --> 02:17:16,719 THE REASON WHY I'M PUTTING THIS 3921 02:17:16,719 --> 02:17:18,120 IS JUST TO SAY THE DIFFERENT 3922 02:17:18,120 --> 02:17:20,890 WAYS IN WHICH ENGAGEMENT CAN BE 3923 02:17:20,890 --> 02:17:22,291 DONE. 3924 02:17:22,291 --> 02:17:24,493 THERE'S NO PERFECT ONE, IT VERY 3925 02:17:24,493 --> 02:17:26,229 MUCH DEPENDS ON YOUR GOALS, WHY 3926 02:17:26,229 --> 02:17:28,497 YOU'RE ENGAGING, AND WHAT YOU 3927 02:17:28,497 --> 02:17:29,532 WANT TO ACHIEVE FROM THOSE 3928 02:17:29,532 --> 02:17:30,533 GOALS. 3929 02:17:30,533 --> 02:17:34,704 AND THAT IS REALLY IMPORTANT IN 3930 02:17:34,704 --> 02:17:35,771 DETERMINING WHETHER YOU WANT TO 3931 02:17:35,771 --> 02:17:36,806 REACH AS MANY PEOPLE OR YOU WANT 3932 02:17:36,806 --> 02:17:43,880 TO BE MORE NARROWED AND FOCUSED. 3933 02:17:43,880 --> 02:17:45,781 ALWAYS REMINDED OF THIS LADDER 3934 02:17:45,781 --> 02:17:51,053 OF PARTICIPATION IN MANY -- THAT 3935 02:17:51,053 --> 02:17:55,324 SHOWS THE DIFFERENT LAYERS OF 3936 02:17:55,324 --> 02:17:56,292 POWER SHARING. 3937 02:17:56,292 --> 02:17:57,727 THIS IS NOT A SOCIAL PROJECT BUT 3938 02:17:57,727 --> 02:18:02,098 IS VERY APPLICABLE TO HEALTH 3939 02:18:02,098 --> 02:18:04,834 RESEARCH. 3940 02:18:04,834 --> 02:18:06,035 AND TO THINK WHAT IT DOES AND 3941 02:18:06,035 --> 02:18:09,538 FOR US DRAWS ATTENTION TO IS THE 3942 02:18:09,538 --> 02:18:10,740 CAUTION THAT OUR ENGAGEMENT 3943 02:18:10,740 --> 02:18:14,810 SHOULD NOT BE -- IT SHOULD NOT 3944 02:18:14,810 --> 02:18:16,579 BE AIMED AT PUTTING PEOPLE ON 3945 02:18:16,579 --> 02:18:17,780 THE TABLE BUT NOT REALLY 3946 02:18:17,780 --> 02:18:19,081 LISTENING TO THEM FOR THE SAKE 3947 02:18:19,081 --> 02:18:21,083 OF WHICH THAT WE ARE ENGAGING, 3948 02:18:21,083 --> 02:18:22,518 BUT RATHER TO START BUILDING 3949 02:18:22,518 --> 02:18:23,920 TOWARDS HIGHER LEVELS OF 3950 02:18:23,920 --> 02:18:26,422 ENGAGEMENT WHERE PEOPLE OR 3951 02:18:26,422 --> 02:18:28,024 COMMUNITIES ARE PARTNER AND PART 3952 02:18:28,024 --> 02:18:33,029 OF OUR RESEARCH PROJECT. 3953 02:18:33,029 --> 02:18:34,897 AND OFTEN FOR EXAMPLE IN OUR 3954 02:18:34,897 --> 02:18:36,866 RESEARCH PROGRAM, WE HAVE A 3955 02:18:36,866 --> 02:18:38,200 WHOLE RANGE OF ACTIVITIES WITH 3956 02:18:38,200 --> 02:18:41,370 DIFFERENT STAKEHOLDERS. 3957 02:18:41,370 --> 02:18:43,339 AGAIN BASED ON STAKEHOLDER 3958 02:18:43,339 --> 02:18:45,641 ANALYSIS, FORMATIVE RESEARCH 3959 02:18:45,641 --> 02:18:47,310 VERY EARLY ON, DIFFERENT GROUPS 3960 02:18:47,310 --> 02:18:51,347 WILL REQUIRE DIFFERENT APPROA 3961 02:18:51,347 --> 02:18:54,951 APPROACHES AND THINK CAREFULLY 3962 02:18:54,951 --> 02:18:56,152 WHAT APPROACH WILL BE 3963 02:18:56,152 --> 02:18:57,219 APPROPRIATE, SOME OF THEM TO ASK 3964 02:18:57,219 --> 02:19:01,223 FOR EXAMPLE WE HAVE -- SCHOOL 3965 02:19:01,223 --> 02:19:03,059 ENGAGEMENT, A PROGRAM THAT CAME 3966 02:19:03,059 --> 02:19:04,360 AS A RESULT OF COMMUNITIES 3967 02:19:04,360 --> 02:19:06,495 ASKING US TO ENGAGE SCHOOLS IN 3968 02:19:06,495 --> 02:19:07,129 BOTH SCIENCE AND HEALTH 3969 02:19:07,129 --> 02:19:08,898 RESEARCH. 3970 02:19:08,898 --> 02:19:13,703 WE HAVE MINISTER OF HEALTH 3971 02:19:13,703 --> 02:19:14,937 STAKEHOLDER ENGAGEMENT ACROSS 3972 02:19:14,937 --> 02:19:16,572 ALL THE LEVELS OF HEALTHCARE 3973 02:19:16,572 --> 02:19:17,773 FROM LOCAL LEVEL TO THE 3974 02:19:17,773 --> 02:19:18,874 INTERNATIONAL LEVEL. 3975 02:19:18,874 --> 02:19:21,310 AND THIS IS IN ADDITION TO 3976 02:19:21,310 --> 02:19:25,481 VARIOUS OTHER WAYS IN WIRE WE'RE 3977 02:19:25,481 --> 02:19:27,450 ENGAGING COMMUNITIES, COMMUNITY 3978 02:19:27,450 --> 02:19:28,884 LEADERS, TO PARTICIPATE IN 3979 02:19:28,884 --> 02:19:33,022 RESEARCH, AND THOSE WHO WE CALL 3980 02:19:33,022 --> 02:19:34,490 HARD TO REACH, ENGAGING WITH OUR 3981 02:19:34,490 --> 02:19:42,031 STAFF USING DIFFERENT FORUM. 3982 02:19:42,031 --> 02:19:44,767 SO IF WE LOOK AT ALL THESE ABOUT 3983 02:19:44,767 --> 02:19:47,636 BUILDING RELATIONSHIPS AND EVEN 3984 02:19:47,636 --> 02:19:49,271 PARTNERSHIPS, BUT AS MUCH AS 3985 02:19:49,271 --> 02:19:53,309 WE'RE -- IT'S STILL VERY HARD TO 3986 02:19:53,309 --> 02:19:54,310 REACH EQUITY AND THAT IS ONE OF 3987 02:19:54,310 --> 02:19:55,978 THE THINGS WE CONTINUOUSLY 3988 02:19:55,978 --> 02:20:00,249 CONTINUE WORKING ON. 3989 02:20:00,249 --> 02:20:05,654 SO HAVING TALKED ABOUT COMMUN 3990 02:20:05,654 --> 02:20:06,756 COMMUNITY, WHO IN THE COMMUNITY 3991 02:20:06,756 --> 02:20:08,758 ARE WE ENGAGING? 3992 02:20:08,758 --> 02:20:12,628 A QUICK ONE IN OUR CENTER, OUR 3993 02:20:12,628 --> 02:20:14,597 POPULATION IS 300,000 PEOPLE, 3994 02:20:14,597 --> 02:20:16,332 THAT'S JUST A POPULATION THAT 3995 02:20:16,332 --> 02:20:21,404 ARE PARTICIPATING, THAT OFTEN 3996 02:20:21,404 --> 02:20:22,805 WOULD BE INVOLVED IN ONE WAY OR 3997 02:20:22,805 --> 02:20:24,140 THE OTHER TO RESEARCH, THE 3998 02:20:24,140 --> 02:20:25,408 POPULATION WHERE WE ARE 3999 02:20:25,408 --> 02:20:26,342 RECRUITING OUR RESEARCH 4000 02:20:26,342 --> 02:20:29,311 PARTICIPANTS FROM. 4001 02:20:29,311 --> 02:20:31,814 300,000 PEOPLE, WHERE DID WE 4002 02:20:31,814 --> 02:20:33,382 START FROM IF WE WANT TO ENGAGE 4003 02:20:33,382 --> 02:20:33,849 WITH THEM? 4004 02:20:33,849 --> 02:20:34,717 OBVIOUSLY THE ISSUE OF 4005 02:20:34,717 --> 02:20:35,484 REPRESENTATION COMES IN, AND 4006 02:20:35,484 --> 02:20:38,087 THERE ARE DIFFERENT FORMS OF 4007 02:20:38,087 --> 02:20:41,624 REPRESENTATION. 4008 02:20:41,624 --> 02:20:43,259 PRESENTATION IN TERMS OF THEY 4009 02:20:43,259 --> 02:20:46,095 SPEAK ON BEHALF OF PARTICULAR 4010 02:20:46,095 --> 02:20:46,862 COMMUNITIES, THE FACT THAT THEY 4011 02:20:46,862 --> 02:20:48,564 WERE ELECTED BY THE COMMUNITIES 4012 02:20:48,564 --> 02:20:51,300 TO REPRESENT THEM FOR EXAMPLE IN 4013 02:20:51,300 --> 02:20:54,570 GOVERNMENTS OR IN SOCIAL GROUPS, 4014 02:20:54,570 --> 02:20:55,905 REPRESENTATION, YOU NEED TO LOOK 4015 02:20:55,905 --> 02:20:57,873 AT PARTICULAR GROUPS THAT ARE 4016 02:20:57,873 --> 02:20:59,942 OFTEN NOT HARD, OR THAT ARE HARD 4017 02:20:59,942 --> 02:21:01,710 TO REACH, BUT MORE IMPORTANTLY, 4018 02:21:01,710 --> 02:21:04,346 IT'S WHO DECIDES ABOUT THE 4019 02:21:04,346 --> 02:21:05,981 REPRESENTATION, IS IT THE 4020 02:21:05,981 --> 02:21:06,749 RESEARCHERS, IS IT THE 4021 02:21:06,749 --> 02:21:09,518 COMMUNITIES, HOW DO WE WORK -- 4022 02:21:09,518 --> 02:21:10,953 THE RESEARCHER MIGHT WANT TO 4023 02:21:10,953 --> 02:21:12,321 VERY QUICKLY SEEK OPINIONS AND 4024 02:21:12,321 --> 02:21:12,822 MOVE ON. 4025 02:21:12,822 --> 02:21:15,091 THE COMMUNITY MIGHT NOT SEE THE 4026 02:21:15,091 --> 02:21:17,860 PEOPLE THAT RESEARCHERS ARE 4027 02:21:17,860 --> 02:21:19,095 ENGAGING WITH IS THEIR 4028 02:21:19,095 --> 02:21:19,462 REPRESENTATIONS. 4029 02:21:19,462 --> 02:21:20,596 SO IN OUR STRATEGY, THEREFORE, 4030 02:21:20,596 --> 02:21:24,567 WE ALWAYS NEED TO THINK ABOUT 4031 02:21:24,567 --> 02:21:26,635 REPRESENTATION WHO THEY ARE 4032 02:21:26,635 --> 02:21:27,736 REPRESENTING AND WHY THEY ARE 4033 02:21:27,736 --> 02:21:33,442 REPRESENTING. 4034 02:21:33,442 --> 02:21:36,212 SO CONSIDER SEVERAL THINGS, ONE 4035 02:21:36,212 --> 02:21:41,016 IS ENSURING DIFFERENT VOICES ARE 4036 02:21:41,016 --> 02:21:42,651 HARD, ARE INVOLVED, ARE LISTENED 4037 02:21:42,651 --> 02:21:46,088 TO, ARE PART OF THE ENGAGEMENT. 4038 02:21:46,088 --> 02:21:47,490 CLARITY ABOUT ROLES AND 4039 02:21:47,490 --> 02:21:48,290 RESPONSIBILITY BECAME VERY 4040 02:21:48,290 --> 02:21:50,292 IMPORTANT FOR US AND DOCUMENTED 4041 02:21:50,292 --> 02:21:52,995 IN SOME OF OUR -- ALSO THE 4042 02:21:52,995 --> 02:21:55,197 IMPORTANCE OF BALANCING 4043 02:21:55,197 --> 02:21:56,599 MOTIVATIONS FOR PARTICIPATION 4044 02:21:56,599 --> 02:22:00,136 AND ENGAGEMENT VERSUS WHAT IS 4045 02:22:00,136 --> 02:22:03,539 FAIR -- AND INDEPENDENCE. 4046 02:22:03,539 --> 02:22:05,608 IN OUR WORK, WHAT BECAME VERY 4047 02:22:05,608 --> 02:22:08,110 CLEAR IN THAT PUTTING THEMSELVES 4048 02:22:08,110 --> 02:22:10,212 EARLY ON FOR REPRESENTATION, WE 4049 02:22:10,212 --> 02:22:12,314 WERE VERY INTERESTED IN MAKING 4050 02:22:12,314 --> 02:22:13,816 SURE THAT THEIR CHILDREN GET 4051 02:22:13,816 --> 02:22:15,918 OPPORTUNITIES TO WORK IN THE 4052 02:22:15,918 --> 02:22:19,455 RESEARCH INSTITUTION OR TO HAVE 4053 02:22:19,455 --> 02:22:20,656 FIRST PRIORITY WHEN IT COMES TO 4054 02:22:20,656 --> 02:22:22,057 RESEARCH BECAUSE AGAIN WE ARE 4055 02:22:22,057 --> 02:22:23,592 WORKING IN SITUATIONS WHERE 4056 02:22:23,592 --> 02:22:24,627 HEALTHCARE SYSTEMS MIGHT NOT BE 4057 02:22:24,627 --> 02:22:29,532 WORKING VERY WELL. 4058 02:22:29,532 --> 02:22:32,268 THE WELLCOME TRUST WAS SEEN AS A 4059 02:22:32,268 --> 02:22:33,169 GREAT EMPLOYER. 4060 02:22:33,169 --> 02:22:34,203 THE MOTIVATION THAT MIGHT PLAY 4061 02:22:34,203 --> 02:22:38,974 OUT IN OUR ENGAGEMENT ACTIVI 4062 02:22:38,974 --> 02:22:41,177 ACTIVITIES, HOW THEN WE ADDRESS 4063 02:22:41,177 --> 02:22:42,945 THOSE BECOME VERY INTERESTING. 4064 02:22:42,945 --> 02:22:44,813 WE INTENTIONALLY DECIDED TO GET 4065 02:22:44,813 --> 02:22:47,416 MULTIPLE COMMUNITY MEMBERS, ONE 4066 02:22:47,416 --> 02:22:49,185 IS A WAY OF MAKING SURE AS MUCH 4067 02:22:49,185 --> 02:22:50,519 AS POSSIBLE WE ARE REACHING AS 4068 02:22:50,519 --> 02:22:53,722 MANY COMMUNITY MEMBERS AS 4069 02:22:53,722 --> 02:22:55,758 POSSIBLE, AND EXPECTATION AND 4070 02:22:55,758 --> 02:22:59,962 WHAT IS EXPECTED OF THOSE WHO 4071 02:22:59,962 --> 02:23:02,364 JOIN THE COMMUNITY ADVISORY 4072 02:23:02,364 --> 02:23:03,566 BOARD. 4073 02:23:03,566 --> 02:23:04,567 AND OF COURSE THERE'S THE ISSUE 4074 02:23:04,567 --> 02:23:08,404 OF CHALLENGES OF INFORMATION, OF 4075 02:23:08,404 --> 02:23:09,471 THE KIND OF INFORMATION THAT WE 4076 02:23:09,471 --> 02:23:11,807 ARE PROVIDING, AND STAFF MIGHT 4077 02:23:11,807 --> 02:23:13,142 SEE THEMSELVES AT A DIFFERENT 4078 02:23:13,142 --> 02:23:14,109 LEVEL FROM THE COMMUNITY, SO HOW 4079 02:23:14,109 --> 02:23:18,380 DO WE BREAK THE BARRIERS. 4080 02:23:18,380 --> 02:23:19,281 SO THESE ARE SOME OF THE 4081 02:23:19,281 --> 02:23:20,249 CHALLENGES THAT YOU MIGHT BE 4082 02:23:20,249 --> 02:23:21,617 FACING, BUT IN YOUR 4083 02:23:21,617 --> 02:23:22,251 REPRESENTATION, WE HAVE TO 4084 02:23:22,251 --> 02:23:23,819 CONSIDER THAT. 4085 02:23:23,819 --> 02:23:25,321 WHAT FOR US IS IMPORTANT IS 4086 02:23:25,321 --> 02:23:28,324 BUILDING WHAT WE SAY, TRUSTING 4087 02:23:28,324 --> 02:23:29,625 RELATIONSHIP, OR TRUSTFUL 4088 02:23:29,625 --> 02:23:31,794 RELATIONSHIPS OVER TIME, AND 4089 02:23:31,794 --> 02:23:35,231 THAT TRUST MUST BE WE WELL-FOUN. 4090 02:23:35,231 --> 02:23:36,198 WELL-FOUNDED JUST MEANS THAT IT 4091 02:23:36,198 --> 02:23:42,338 CAN CHALLENGE US AND THEY CAN 4092 02:23:42,338 --> 02:23:43,672 TELL US WHEN THEY ARE NOT HAPPY 4093 02:23:43,672 --> 02:23:44,073 WITH THINGS. 4094 02:23:44,073 --> 02:23:46,642 IN FACT, MISTRUST IS GOING TO 4095 02:23:46,642 --> 02:23:48,177 BUILD UP BUT WE NEED TO BE 4096 02:23:48,177 --> 02:23:53,515 CAREFUL THAT THE MISTRUST -- WE 4097 02:23:53,515 --> 02:24:00,990 SHOULD BE COMFORTABLE WITH THAT. 4098 02:24:00,990 --> 02:24:04,827 SO WE'VE SEEN ALL THESE ABOUT 4099 02:24:04,827 --> 02:24:06,729 COMMUNITIES AND REPRESENTATIONS 4100 02:24:06,729 --> 02:24:08,197 AND DEPTH OF ENGAGEMENT. 4101 02:24:08,197 --> 02:24:09,231 OBVIOUSLY A BIG QUESTION IS CAN 4102 02:24:09,231 --> 02:24:11,867 YOU SCALE UP WHEN YOU'VE GOT -- 4103 02:24:11,867 --> 02:24:13,269 WHEN YOU FOCUS, ARE YOU ABLE TO 4104 02:24:13,269 --> 02:24:17,339 SCALE UP. 4105 02:24:17,339 --> 02:24:18,540 AND THE PIECE OF WORK YOU'RE 4106 02:24:18,540 --> 02:24:20,309 DOING WITH ENGAGEMENT -- THAT IS 4107 02:24:20,309 --> 02:24:27,516 ALWAYS OUR QUESTION. 4108 02:24:27,516 --> 02:24:29,184 SO THERE ARE SOME CHALLENGES 4109 02:24:29,184 --> 02:24:32,921 WITH ENGAGEMENT. 4110 02:24:32,921 --> 02:24:35,224 AND SOME OF THESE CHALLENGES ARE 4111 02:24:35,224 --> 02:24:36,625 BECAUSE THERE COULD BE COMPETING 4112 02:24:36,625 --> 02:24:39,728 GOALS WHEN YOU'RE THINKING ABOUT 4113 02:24:39,728 --> 02:24:40,929 ENGAGEMENT. 4114 02:24:40,929 --> 02:24:42,031 IMPROVING HEALTH, HAVING 4115 02:24:42,031 --> 02:24:44,333 SUCCESSFUL RESEARCH COULD BE 4116 02:24:44,333 --> 02:24:46,935 COMPETITION. 4117 02:24:46,935 --> 02:24:48,404 DEFINITION OF RELATIONSHIPS THAT 4118 02:24:48,404 --> 02:24:50,372 YOU TRY TO BUILD. 4119 02:24:50,372 --> 02:24:51,240 THE PERMISSION OF COMMUNITY 4120 02:24:51,240 --> 02:24:57,579 COULD BE INTENTION, WE NEED TO 4121 02:24:57,579 --> 02:24:58,814 YOU COMPROMISE THAT. 4122 02:24:58,814 --> 02:25:00,783 SOMETIMES WE MIGHT WANT TO DO 4123 02:25:00,783 --> 02:25:01,550 ENGAGEMENT BECAUSE IT'S A 4124 02:25:01,550 --> 02:25:04,953 REQUIREMENT BY ETHICS -- BY 4125 02:25:04,953 --> 02:25:06,622 FUNDERS, HOW DOES THAT PLAY UP 4126 02:25:06,622 --> 02:25:07,589 WITH THIS. 4127 02:25:07,589 --> 02:25:09,725 ALWAYS RECOGNIZING THE INTRINSIC 4128 02:25:09,725 --> 02:25:11,093 VALUE OF ENGAGEMENT AND IT'S 4129 02:25:11,093 --> 02:25:15,297 IMPORTANT TO IDENTIFY AREAS THAT 4130 02:25:15,297 --> 02:25:22,404 NEED -- ABOUT ENGAGEMENT. 4131 02:25:22,404 --> 02:25:23,505 THE CONTEXT IS A VERY IMPORTANT 4132 02:25:23,505 --> 02:25:24,740 PART IN THINKING ABOUT 4133 02:25:24,740 --> 02:25:25,607 ENGAGEMENT, WHAT IT IS ABOUT 4134 02:25:25,607 --> 02:25:31,280 HEALTH SYSTEMS OR ABOUT HEALTH 4135 02:25:31,280 --> 02:25:31,847 RESEARCH. 4136 02:25:31,847 --> 02:25:33,048 OUR ENGAGEMENT, WE NEED TO 4137 02:25:33,048 --> 02:25:35,718 CONSIDER CAREFULLY HOW IS 4138 02:25:35,718 --> 02:25:39,988 COMMUNITY INPUT INFORMING 4139 02:25:39,988 --> 02:25:41,056 WHATEVER WORK, INCLUDING THE 4140 02:25:41,056 --> 02:25:46,195 CORE GOALS OF THE RESEARCH, AND 4141 02:25:46,195 --> 02:25:47,196 THE CORE ACTIVITIES OF THE 4142 02:25:47,196 --> 02:25:52,668 RESEARCH INSTITUTION. 4143 02:25:52,668 --> 02:25:54,436 -- IN PLACE AND THEY LISTENED 4144 02:25:54,436 --> 02:25:58,073 TO OR RESPECTED, HOW ARE WE 4145 02:25:58,073 --> 02:26:01,009 MAKING SURE THAT ENGAGEMENT IS 4146 02:26:01,009 --> 02:26:02,544 GENUINE? 4147 02:26:02,544 --> 02:26:06,715 NOT JUST ABOUT US AND OUR WORK, 4148 02:26:06,715 --> 02:26:08,283 BUT THAT WE ARE ALSO RESPONDING 4149 02:26:08,283 --> 02:26:11,987 TO COMMUNITY PRIORITIES. 4150 02:26:11,987 --> 02:26:14,390 AND COMMUNITY NEEDS AND 4151 02:26:14,390 --> 02:26:15,724 EXPECTATIONS. 4152 02:26:15,724 --> 02:26:17,259 HOW DO WE DEAL WITH EXPECTATIONS 4153 02:26:17,259 --> 02:26:18,794 OF THE COMMUNITIES. 4154 02:26:18,794 --> 02:26:21,663 WITHIN COMMUNITIES, IT'S 4155 02:26:21,663 --> 02:26:22,631 IMPORTANT TO RECOGNIZE THE 4156 02:26:22,631 --> 02:26:24,066 RIGHTS AND AWARENESS OF THEIR 4157 02:26:24,066 --> 02:26:28,470 RIGHTS AS PART OF ENGAGEMENT. 4158 02:26:28,470 --> 02:26:29,671 REPRESENTATION AND HEALTH 4159 02:26:29,671 --> 02:26:31,640 OUTCOMES TO BE. 4160 02:26:31,640 --> 02:26:34,843 AND WHOSE VOICE IS INCLUDED, 4161 02:26:34,843 --> 02:26:36,478 WHOSE VOICE IS EXCLUDED, AND HOW 4162 02:26:36,478 --> 02:26:38,614 BEST DO WE REACH OUT TO THOSE 4163 02:26:38,614 --> 02:26:41,450 WHOSE VOICES ARE EXCLUDED AS 4164 02:26:41,450 --> 02:26:43,619 SILENT AND NOT EVEN IN THE 4165 02:26:43,619 --> 02:26:45,821 MARGIN OF COMMUNITY -- WHERE 4166 02:26:45,821 --> 02:26:47,456 COMMUNITY VIEWS ARE AIRED, HOW 4167 02:26:47,456 --> 02:26:52,261 DO WE REACH OUT TO WHAT I CALL 4168 02:26:52,261 --> 02:26:53,162 HARD TO REACH POPULATIONS. 4169 02:26:53,162 --> 02:26:55,030 THIS COULD BE GEOGRAPHICALLY, IT 4170 02:26:55,030 --> 02:26:56,999 COULD ALSO BE SOCIOECONOMIC, IT 4171 02:26:56,999 --> 02:26:58,567 COULD BE ALL KINDS OF THINGS 4172 02:26:58,567 --> 02:26:59,535 THAT COULD PLAY OUT. 4173 02:26:59,535 --> 02:27:01,403 IT COULD ALSO BE ABOUT FREEDOMS 4174 02:27:01,403 --> 02:27:04,373 AND WHETHER PEOPLE FEEL FREE TO 4175 02:27:04,373 --> 02:27:05,374 RAISE AND FEEL THAT THEIR 4176 02:27:05,374 --> 02:27:06,442 OPINIONS AND VOICES ARE 4177 02:27:06,442 --> 02:27:08,110 RESPECTED. 4178 02:27:08,110 --> 02:27:09,845 WE ALSO RECOGNIZE THAT 4179 02:27:09,845 --> 02:27:12,981 ENGAGEMENT ALSO HAPPENS WITHIN 4180 02:27:12,981 --> 02:27:17,820 WIDER SOCIAL POLITICAL 4181 02:27:17,820 --> 02:27:19,655 ENVIRONMENTS, DEMOCRATIC FOR 4182 02:27:19,655 --> 02:27:21,190 PEOPLE TO VOICE THEIR OPINIONS, 4183 02:27:21,190 --> 02:27:24,359 HOW WE MAKE USE OF THOSE FORA. 4184 02:27:24,359 --> 02:27:25,561 THEY THERE ARE ISSUES ABOUT 4185 02:27:25,561 --> 02:27:26,762 HUMAN RIGHTS AND INFORMATION 4186 02:27:26,762 --> 02:27:27,996 AVAILABILITY, AND HOW DO WE MAKE 4187 02:27:27,996 --> 02:27:34,803 SURE THAT OUR ENGAGEMENT --. 4188 02:27:34,803 --> 02:27:36,104 THERE ARE OF COURSE LIMITS OF 4189 02:27:36,104 --> 02:27:37,339 ENGAGEMENT. 4190 02:27:37,339 --> 02:27:40,509 AND THE ONE OF THOSE IS THAT IT 4191 02:27:40,509 --> 02:27:43,345 CAN CONTRIBUTE TO DISCUSSIONS 4192 02:27:43,345 --> 02:27:47,850 ABOUT KEY AREAS OF IMPORTANCE. 4193 02:27:47,850 --> 02:27:50,953 FOR EXAMPLE, ON ISSUES AROUND 4194 02:27:50,953 --> 02:27:55,524 WHAT IS APPROPRIATE BENEFIT 4195 02:27:55,524 --> 02:28:01,964 SHARING ABOUT CARE -- THEY MAY 4196 02:28:01,964 --> 02:28:03,131 NOT SOLVE ALL THAT BUT CAN 4197 02:28:03,131 --> 02:28:04,433 CONTRIBUTE TO THE DISCUSSIONS 4198 02:28:04,433 --> 02:28:08,136 ABOUT THAT. 4199 02:28:08,136 --> 02:28:09,238 IT MIGHT ALSO CONTRIBUTE TO 4200 02:28:09,238 --> 02:28:11,106 ISSUES ABOUT HISTORICAL 4201 02:28:11,106 --> 02:28:12,441 INJUSTICES, BACKGROUND 4202 02:28:12,441 --> 02:28:13,775 INEQUITIES AND SO ON, BUT BY 4203 02:28:13,775 --> 02:28:15,277 ITSELF IT CANNOT PERHAPS SOLVE 4204 02:28:15,277 --> 02:28:20,716 IT, IT CAN PROVIDE A FORUM IN 4205 02:28:20,716 --> 02:28:23,886 WHICH THIS IS DISCUSSED BY 4206 02:28:23,886 --> 02:28:25,187 ITSELF MIGHT NOT BE IN A 4207 02:28:25,187 --> 02:28:26,154 POSITION TO SOLVE ALL THESE 4208 02:28:26,154 --> 02:28:26,488 ISSUES. 4209 02:28:26,488 --> 02:28:30,692 SO IT'S ALWAYS GOOD TO HAVE 4210 02:28:30,692 --> 02:28:32,895 UNDERSTANDINGS OF WHAT IS IT 4211 02:28:32,895 --> 02:28:35,297 THAT WE KNOW ENGAGEMENT CAN DO 4212 02:28:35,297 --> 02:28:36,798 AND WHAT ARE THE LIMITS OF WHAT 4213 02:28:36,798 --> 02:28:39,134 ENGAGEMENT CAN D DO . 4214 02:28:39,134 --> 02:28:46,141 NEXT. 4215 02:28:46,141 --> 02:28:48,210 I THINK PERHAPS A POINT TO 4216 02:28:48,210 --> 02:28:50,345 REFLECT FOR ALL OF US, IS IT ALL 4217 02:28:50,345 --> 02:28:52,214 RELEVANT, AND IN OUR WORK, WE 4218 02:28:52,214 --> 02:28:54,816 CAN HAVE A REA FLEXION OF WHAT 4219 02:28:54,816 --> 02:28:56,518 ARE THE GOALS OF WHAT WE ARE 4220 02:28:56,518 --> 02:28:58,153 TRYING TO DO WITH ENGAGEMENT. 4221 02:28:58,153 --> 02:29:00,122 WHO DECIDES OF THE GOALS? 4222 02:29:00,122 --> 02:29:03,859 AND WHO DECIDES ON THE RANGE AND 4223 02:29:03,859 --> 02:29:05,193 DEPTH OF ENGAGEMENT? 4224 02:29:05,193 --> 02:29:05,961 IS IT COMMUNITIES? 4225 02:29:05,961 --> 02:29:08,797 IS IT RESEARCHERS? 4226 02:29:08,797 --> 02:29:12,668 IS IT CO-CREATING AND IF IT'S 4227 02:29:12,668 --> 02:29:13,735 CO-CREATING, WHAT FORUMS HAVE 4228 02:29:13,735 --> 02:29:16,505 BEEN USED TO CO-CREATE THESE? 4229 02:29:16,505 --> 02:29:18,707 HOW ARE THE DIFFERENT VOICES 4230 02:29:18,707 --> 02:29:20,475 REPRESENTED IN THESE FORA? 4231 02:29:20,475 --> 02:29:22,978 THEN THE NEXT THING IS WHEN YOU 4232 02:29:22,978 --> 02:29:24,813 THINK ABOUT COMMUNITIES, AND 4233 02:29:24,813 --> 02:29:27,282 FROM THE FIRST SLIDE, WHO ARE 4234 02:29:27,282 --> 02:29:30,686 THE COMMUNITIES WE ARE THINKING 4235 02:29:30,686 --> 02:29:34,823 OF? 4236 02:29:34,823 --> 02:29:36,391 HOW MIGHT THEY BE REPRESENTED? 4237 02:29:36,391 --> 02:29:37,726 HOW ARE THE REPRESENTATIVES 4238 02:29:37,726 --> 02:29:39,494 SELECTED, BY WHOM? 4239 02:29:39,494 --> 02:29:42,431 HOW DOES THAT SELECTION OF 4240 02:29:42,431 --> 02:29:43,465 REPRESENTATION INFLUENCE THE 4241 02:29:43,465 --> 02:29:47,069 NATURE OF ENGAGEMENT? 4242 02:29:47,069 --> 02:29:48,704 WHOSE VOICES ARE LISTENED TO, 4243 02:29:48,704 --> 02:29:50,272 AND WHOSE VOICES HAVE NOT BEEN 4244 02:29:50,272 --> 02:29:52,341 LISTENED TO, WHOSE VIEWS MATTER 4245 02:29:52,341 --> 02:29:56,445 AND WHOSE ARE NOT BEING LISTENED 4246 02:29:56,445 --> 02:29:56,912 TO? 4247 02:29:56,912 --> 02:29:57,879 IT'S IMPORTANT TO BE AWARE OF 4248 02:29:57,879 --> 02:30:00,248 THAT. 4249 02:30:00,248 --> 02:30:02,117 THEN WHAT TYPES OF INTERACTIONS 4250 02:30:02,117 --> 02:30:03,719 AND ENGAGEMENT ARE IMPORTANT? 4251 02:30:03,719 --> 02:30:05,354 WHAT ARE SOME OF THE POTENTIAL 4252 02:30:05,354 --> 02:30:08,724 CHALLENGES WITH THOSE? 4253 02:30:08,724 --> 02:30:11,259 WHAT ARE THE -- IN WHICH WE 4254 02:30:11,259 --> 02:30:12,461 IDENTIFY ISSUES AND RESPONDING 4255 02:30:12,461 --> 02:30:16,898 TO THEM? 4256 02:30:16,898 --> 02:30:18,834 ARE ISSUES BEING ACTED UPON, AND 4257 02:30:18,834 --> 02:30:20,969 IF THEY HAVE NOT BEEN ACTED 4258 02:30:20,969 --> 02:30:25,474 UPON, HOW IS FEEDBACK PROVIDED? 4259 02:30:25,474 --> 02:30:27,009 WE JUST KEEP SILENT AND MOVE ON 4260 02:30:27,009 --> 02:30:28,176 WITH OUR RESEARCH? 4261 02:30:28,176 --> 02:30:30,145 WHICH I KNOW HAPPENS. 4262 02:30:30,145 --> 02:30:32,314 AND THEN HOW DO WE ADDRESS 4263 02:30:32,314 --> 02:30:32,981 EXPECTATIONS? 4264 02:30:32,981 --> 02:30:36,018 AND HOW DO WE DEAL WITH OUR 4265 02:30:36,018 --> 02:30:37,753 FEELINGS OF RESPONSIBILITY, 4266 02:30:37,753 --> 02:30:39,354 WHICH WE CANNOT ADDRESS BECAUSE 4267 02:30:39,354 --> 02:30:43,058 EITHER IT IS BEYOND OUR LIMITS, 4268 02:30:43,058 --> 02:30:44,526 OUR -- OR WE ARE NOT IN A 4269 02:30:44,526 --> 02:30:46,061 POSITION TO, WE DO NOT HAVE 4270 02:30:46,061 --> 02:30:47,262 EXPERTISE TO RESPOND, SO HOW DO 4271 02:30:47,262 --> 02:30:50,966 WE DEAL WITH THAT? 4272 02:30:50,966 --> 02:30:54,970 NEXT. 4273 02:30:54,970 --> 02:30:57,172 SO THAT IS ON ENGAGEMENT. 4274 02:30:57,172 --> 02:30:58,240 OBVIOUSLY IT'S ONE WAY TO 4275 02:30:58,240 --> 02:31:01,843 IMPLEMENT, BUT IT'S ALSO 4276 02:31:01,843 --> 02:31:03,011 IMPORTANT TO LEARN FROM WHAT WE 4277 02:31:03,011 --> 02:31:05,113 ARE DOING IN ENGAGEMENT AND 4278 02:31:05,113 --> 02:31:06,715 EVALUATION IS ONE IN WHICH WE DO 4279 02:31:06,715 --> 02:31:09,484 THIS, THERE'S A WHOLE SESSION ON 4280 02:31:09,484 --> 02:31:10,452 EVALUATION, I'LL NOT TALK ABOUT 4281 02:31:10,452 --> 02:31:13,755 IT, BUT JUST TO MAKE SURE THAT 4282 02:31:13,755 --> 02:31:16,758 WE DO NOT FORGET IT IT'S IMPORTT 4283 02:31:16,758 --> 02:31:18,393 FOR US TO LEARN FROM WHAT WE ARE 4284 02:31:18,393 --> 02:31:19,728 DOING, AND WHAT YOU SEE THERE IS 4285 02:31:19,728 --> 02:31:22,397 A CALL TO INVEST IN EVALUATING 4286 02:31:22,397 --> 02:31:23,465 ENGAGEMENT SO THAT IT IS NOT 4287 02:31:23,465 --> 02:31:25,734 SIMPLY A MATTER OF TRIAL AND 4288 02:31:25,734 --> 02:31:27,469 ERROR, BUT THAT WE ARE ALSO 4289 02:31:27,469 --> 02:31:29,104 LEARNING FROM IT AND KNOWING 4290 02:31:29,104 --> 02:31:31,506 WHAT ARE THE BEST PRACTICES ON 4291 02:31:31,506 --> 02:31:32,974 HOW THIS COULD BE SCALED UP IF 4292 02:31:32,974 --> 02:31:37,913 THEY CAN BE. 4293 02:31:37,913 --> 02:31:39,881 THIS IS SUPPOSED TO BE A VIDEO, 4294 02:31:39,881 --> 02:31:45,387 I DON'T KNOW IF IT WILL PLAY. 4295 02:31:45,387 --> 02:31:46,388 IT WILL NOT PLAY? 4296 02:31:46,388 --> 02:31:46,588 OKAY. 4297 02:31:46,588 --> 02:31:48,790 SO THIS IS A VIDEO WITH A LINK 4298 02:31:48,790 --> 02:31:53,195 IN WHICH WE DISCUSS SOME OF 4299 02:31:53,195 --> 02:31:54,730 THE -- OF ENGAGEMENT OF WORK 4300 02:31:54,730 --> 02:31:55,831 WE'VE BEEN DOING AND SOME OF THE 4301 02:31:55,831 --> 02:31:58,934 KEY FINDINGS. 4302 02:31:58,934 --> 02:32:00,035 THERE'S A LINK THAT'S PROVIDED 4303 02:32:00,035 --> 02:32:03,739 AND WHAT WE DRAW ATTENTION TO IS 4304 02:32:03,739 --> 02:32:05,340 IMPORTANCE OF ENGAGEMENT IF NOT 4305 02:32:05,340 --> 02:32:09,478 CAREFULLY DONE, IT CAN 4306 02:32:09,478 --> 02:32:11,246 PERPETUATE THE PARADIGM OF POWER 4307 02:32:11,246 --> 02:32:12,581 IMBALANCES AND INEQUITIES 4308 02:32:12,581 --> 02:32:15,117 BETWEEN RESEARCHERS AND 4309 02:32:15,117 --> 02:32:16,451 COMMUNITIES, BETWEEN GLOBAL 4310 02:32:16,451 --> 02:32:17,719 NORTH AND GLOBAL SOUTH, AND I 4311 02:32:17,719 --> 02:32:19,755 USE THOSE TERMS VERY LOOSELY. 4312 02:32:19,755 --> 02:32:21,389 >> WE'LL POST THAT FOR EVERYONE 4313 02:32:21,389 --> 02:32:25,227 TO HAVE ACCESS TO, DORCAS. 4314 02:32:25,227 --> 02:32:29,131 >> OKAY, THANK YOU. 4315 02:32:29,131 --> 02:32:31,399 SO JUST AS OUR WAY OF 4316 02:32:31,399 --> 02:32:36,204 SUMMARIZING, SO WE DISCUSSED 4317 02:32:36,204 --> 02:32:37,405 ABOUT SOME OF THE INSTRUMENTAL 4318 02:32:37,405 --> 02:32:39,641 AND INTRINSIC GOALS OF 4319 02:32:39,641 --> 02:32:40,408 ENGAGEMENT, AND THE IMPORTANCE 4320 02:32:40,408 --> 02:32:42,277 OF ENGAGEMENT HAS BEEN ONE 4321 02:32:42,277 --> 02:32:45,280 APPROACH TO SUPPORTING IT 4322 02:32:45,280 --> 02:32:47,349 THROUGH PRACTICE AND RESEARCH, 4323 02:32:47,349 --> 02:32:50,085 THERE ARE OF COURSE SOME 4324 02:32:50,085 --> 02:32:50,886 UNINTENDED CONSEQUENCES AND THIS 4325 02:32:50,886 --> 02:32:53,755 COULD BE NEGATIVE AND POSITIVE. 4326 02:32:53,755 --> 02:32:55,924 THERE ARE IMPLICATIONS FOR 4327 02:32:55,924 --> 02:32:57,359 RELATIONSHIPS, FOR TIME AND 4328 02:32:57,359 --> 02:32:59,795 RESOURCES, FOR OPPORTUNITY 4329 02:32:59,795 --> 02:33:02,864 CALLS, AND EXPECTATIONS. 4330 02:33:02,864 --> 02:33:04,299 WE SHOULD CAREFULLY CONSIDER AND 4331 02:33:04,299 --> 02:33:05,734 TRACK SOME OF THE ELEMENTS 4332 02:33:05,734 --> 02:33:07,202 INCLUDING THE GOALS OF 4333 02:33:07,202 --> 02:33:08,503 ENGAGEMENT, BECAUSE THEY ARE 4334 02:33:08,503 --> 02:33:10,338 ALWAYS CHANGING. 4335 02:33:10,338 --> 02:33:12,307 AND IT IS OKAY FOR THEM TO 4336 02:33:12,307 --> 02:33:14,676 CHANGE. 4337 02:33:14,676 --> 02:33:16,311 THE DEPTH OF ENGAGEMENT, WHO 4338 02:33:16,311 --> 02:33:18,613 DECIDES. 4339 02:33:18,613 --> 02:33:20,448 IS ENGAGEMENT RESEARCH-DRIVEN OR 4340 02:33:20,448 --> 02:33:23,351 IS IT COMMUNITY-DRIVEN OR IS IT 4341 02:33:23,351 --> 02:33:26,087 A PARTNERSHIP? 4342 02:33:26,087 --> 02:33:28,623 AND I'M SAYING THIS NOT 4343 02:33:28,623 --> 02:33:31,059 BECAUSE -- BUT TO BE AWARE OF 4344 02:33:31,059 --> 02:33:33,028 THEM. 4345 02:33:33,028 --> 02:33:34,129 WHO ARE THE COMMUNITIES THAT WE 4346 02:33:34,129 --> 02:33:38,500 ARE ENGAGING? 4347 02:33:38,500 --> 02:33:43,572 WHO ARE THE REPRESENTATIVES OF F 4348 02:33:43,572 --> 02:33:50,345 THOSE COMMUNITIES AND WHAT -- 4349 02:33:50,345 --> 02:33:52,447 WHO SELECTS THEM, WHO IS 4350 02:33:52,447 --> 02:33:53,215 INVOLVED, THAT'S REALLY 4351 02:33:53,215 --> 02:33:54,649 IMPORTANT TO SEEK OUT WHOSE 4352 02:33:54,649 --> 02:33:55,650 VOICES IN COMMUNITIES THAT HAVE 4353 02:33:55,650 --> 02:33:57,285 NOT BEEN REACHED TO. 4354 02:33:57,285 --> 02:33:58,820 AND THEN, OF COURSE, TO CONSIDER 4355 02:33:58,820 --> 02:34:00,088 THE TYPES AND RANGE OF 4356 02:34:00,088 --> 02:34:01,389 ENGAGEMENT THAT WOULD WORK FOR 4357 02:34:01,389 --> 02:34:02,624 DIFFERENT COMMUNITIES. 4358 02:34:02,624 --> 02:34:06,461 AND THIS WOULD CHANGE OVER TIME. 4359 02:34:06,461 --> 02:34:07,996 AND DEPENDING ON COMMUNITIES AND 4360 02:34:07,996 --> 02:34:09,998 ISSUES. 4361 02:34:09,998 --> 02:34:11,199 AND MECHANISMS TO IDENTIFY AND 4362 02:34:11,199 --> 02:34:13,969 RESPOND TO EMERGING ISSUES, AND 4363 02:34:13,969 --> 02:34:14,736 ALSO RECOGNIZE THE LIMITS TO 4364 02:34:14,736 --> 02:34:18,006 ENGAGEMENT. 4365 02:34:18,006 --> 02:34:20,976 THAT IS ISSUES THAT COMMUNITY 4366 02:34:20,976 --> 02:34:22,544 ENGAGEMENT MIGHT NOT BE ABLE TO 4367 02:34:22,544 --> 02:34:22,777 ACHIEVE. 4368 02:34:22,777 --> 02:34:25,046 I THINK THAT'S WHAT I -- NOT 4369 02:34:25,046 --> 02:34:28,216 BEING ABLE TO PLAY THE VIDEOS, 4370 02:34:28,216 --> 02:34:29,484 BUT I HOPE YOU HAVE THE TIME TO 4371 02:34:29,484 --> 02:34:30,685 PLAY THE VIDEO. 4372 02:34:30,685 --> 02:34:32,554 NEXT, I THINK THAT'S THE LAST 4373 02:34:32,554 --> 02:34:38,393 SLIDE. 4374 02:34:38,393 --> 02:34:39,494 THIS IS A CASE STUDY, SOMETHING 4375 02:34:39,494 --> 02:34:45,166 FOR PEOPLE TO READ. 4376 02:34:45,166 --> 02:34:48,203 PLEASE DO FEEL FREE TO READ THAT 4377 02:34:48,203 --> 02:34:51,907 TO JUST GET A SENSE OF HOW WE'RE 4378 02:34:51,907 --> 02:34:54,109 GOING TO A TOTALLY NEW AREA, HOW 4379 02:34:54,109 --> 02:34:56,878 COMMUNITY ENGAGEMENT CAN EITHER 4380 02:34:56,878 --> 02:34:58,113 INITIALLY BE SO CHALLENGING BUT 4381 02:34:58,113 --> 02:35:01,349 OVER TIME, YOU INTERACT WITH 4382 02:35:01,349 --> 02:35:03,885 COMMUNITIES, YOU CAN IMPACT SO 4383 02:35:03,885 --> 02:35:08,189 MANY THINGS THAT CAN HELP YOU BE 4384 02:35:08,189 --> 02:35:09,057 INTEGRATED WITHIN THE COMMUNITY 4385 02:35:09,057 --> 02:35:12,560 OR TO COMPLETELY BE NOT SO WELL 4386 02:35:12,560 --> 02:35:14,829 ALIGNED TO THE COMMUNITY. 4387 02:35:14,829 --> 02:35:18,099 SO IT WAS AN INTERESTING CASE 4388 02:35:18,099 --> 02:35:20,936 FOR US EVEN THOUGH WE HAD BEEN 4389 02:35:20,936 --> 02:35:23,238 IN OUR PROGRAM FOR QUITE SOME 4390 02:35:23,238 --> 02:35:25,240 TIME, THOUGHT WE KNEW WHAT TO 4391 02:35:25,240 --> 02:35:25,674 DO. 4392 02:35:25,674 --> 02:35:26,908 BUT WE THOUGHT WE HAD DONE 4393 02:35:26,908 --> 02:35:29,077 EVERYTHING THAT NEEDED TO BE 4394 02:35:29,077 --> 02:35:32,347 DONE, AND THEN REALIZE 4395 02:35:32,347 --> 02:35:33,648 COMMUNITIES -- YOU CANNOT JUST 4396 02:35:33,648 --> 02:35:35,717 BORROW EXAMPLE FROM ONE 4397 02:35:35,717 --> 02:35:37,118 COMMUNITY AND THINK IT WILL WORK 4398 02:35:37,118 --> 02:35:38,353 WELL IN ANOTHER COMMUNITY, AND 4399 02:35:38,353 --> 02:35:41,323 THAT WAS A NICE -- IT WAS A 4400 02:35:41,323 --> 02:35:42,624 TOUGH BUT A NICE WAY FOR US TO 4401 02:35:42,624 --> 02:35:42,857 LEARN. 4402 02:35:42,857 --> 02:35:43,391 THANK YOU. 4403 02:35:43,391 --> 02:35:44,926 >> I'LL POST THAT AS WELL, 4404 02:35:44,926 --> 02:35:45,160 DORCAS. 4405 02:35:45,160 --> 02:35:45,794 THANK YOU SO MUCH. 4406 02:35:45,794 --> 02:35:52,534 [APPLAUSE] 4407 02:35:52,534 --> 02:35:53,635 SO WE HAVE SOME TIME FOR 4408 02:35:53,635 --> 02:35:53,969 QUESTIONS. 4409 02:35:53,969 --> 02:35:56,504 JUST TO ORIENT YOU, DORCAS, WE 4410 02:35:56,504 --> 02:35:57,372 HAVE ABOUT SIX OR SO FOLKS IN 4411 02:35:57,372 --> 02:35:58,073 THE ROOM TODAY. 4412 02:35:58,073 --> 02:35:59,674 THEY CAN GO TO THE MICS TO ASK 4413 02:35:59,674 --> 02:36:02,344 QUESTIONS, AND I ALSO HAVE 4414 02:36:02,344 --> 02:36:05,013 QUESTION FROM THOSE WHO ARE 4415 02:36:05,013 --> 02:36:07,515 ATTENDING FROM A DISTANCE. 4416 02:36:07,515 --> 02:36:08,616 BUT CAROLINE HAS A QUESTION. 4417 02:36:08,616 --> 02:36:10,118 SHE'S HEADED TOWARDS THE MIC. 4418 02:36:10,118 --> 02:36:10,819 >> OKAY. 4419 02:36:10,819 --> 02:36:11,386 >> HELLO. 4420 02:36:11,386 --> 02:36:13,154 THANK YOU SO MUCH FOR THIS 4421 02:36:13,154 --> 02:36:13,488 PRESENTATION. 4422 02:36:13,488 --> 02:36:16,024 IT WAS SUPER INFORMATIVE. 4423 02:36:16,024 --> 02:36:19,327 I JUST WANTED TO ASK, BECAUSE 4424 02:36:19,327 --> 02:36:21,830 THROUGHOUT YOUR PRESENTATION, I 4425 02:36:21,830 --> 02:36:24,165 WAS STRUCK BY KIND OF THE 4426 02:36:24,165 --> 02:36:26,034 INADEQUACY OF THE WORDS 4427 02:36:26,034 --> 02:36:27,802 COMMUNITY ENGAGEMENT TO DESCRIBE 4428 02:36:27,802 --> 02:36:31,072 THE LIKE MANY VARYING THINGS 4429 02:36:31,072 --> 02:36:32,774 THAT IT CAN ENTAIL AND SOMETIMES 4430 02:36:32,774 --> 02:36:35,143 MAYBE EVEN THE HARM THAT WE CAN 4431 02:36:35,143 --> 02:36:37,112 INFLICT BY NOT SPECIFYING WHAT 4432 02:36:37,112 --> 02:36:39,414 COMMUNITY ENGAGEMENT MEANS. 4433 02:36:39,414 --> 02:36:41,883 AND SO I'M WONDERING IF YOU 4434 02:36:41,883 --> 02:36:44,319 COULD TALK A LITTLE BIT ABOUT, I 4435 02:36:44,319 --> 02:36:47,389 DON'T KNOW, KIND OF THE GAP 4436 02:36:47,389 --> 02:36:48,823 BETWEEN WHAT PEOPLE USUALLY MEAN 4437 02:36:48,823 --> 02:36:49,924 WHEN THEY THROW OUT THE WORD 4438 02:36:49,924 --> 02:36:53,995 COMMUNITY ENGAGEMENT AND WHAT IT 4439 02:36:53,995 --> 02:36:56,464 REALLY ENTAILS AND HOW WE SHOULD 4440 02:36:56,464 --> 02:37:01,536 50 ABOUT SPECIGO ABOUT SPECIFYIH 4441 02:37:01,536 --> 02:37:02,737 HAVE A BUTTER OR MORE SPECIFIC 4442 02:37:02,737 --> 02:37:04,172 WAYS OF DESCRIBING IT, THE 4443 02:37:04,172 --> 02:37:05,373 DIFFERENT FORMS THAT IT COULD 4444 02:37:05,373 --> 02:37:05,573 TAKE. 4445 02:37:05,573 --> 02:37:06,641 >> THAT'S REALLY A GREAT 4446 02:37:06,641 --> 02:37:10,245 QUESTION, AND I THINK A LOT OF 4447 02:37:10,245 --> 02:37:11,546 PEOPLE ASK ME THAT ESPECIALLY 4448 02:37:11,546 --> 02:37:15,784 AFTER THIS PRESENTATION, ONE OF 4449 02:37:15,784 --> 02:37:17,852 THE VIDEO CLIPS HAS GOT A 4450 02:37:17,852 --> 02:37:19,254 WEBSITE THAT PROVIDES MATERIALS 4451 02:37:19,254 --> 02:37:21,990 FOR WHAT IS ENGAGEMENT, WHAT ARE 4452 02:37:21,990 --> 02:37:23,058 THE WAYS IN WHICH YOU CAN 4453 02:37:23,058 --> 02:37:23,925 ENGAGE. 4454 02:37:23,925 --> 02:37:25,460 WHAT MY QUICK ADVICE IS THAT THE 4455 02:37:25,460 --> 02:37:29,097 TERMS USED SO MANY DIFFERENT W 4456 02:37:29,097 --> 02:37:31,099 WAYS TO DESCRIBE SO MANY 4457 02:37:31,099 --> 02:37:32,734 DIFFERENT THINGS, AND ANY TIME I 4458 02:37:32,734 --> 02:37:34,269 HEAR SOMEONE SAYING I'M ENGAGING 4459 02:37:34,269 --> 02:37:35,537 COMMUNITIES, THE FIRST THING IS 4460 02:37:35,537 --> 02:37:38,073 WHAT EXACTLY ARE YOU DOING? 4461 02:37:38,073 --> 02:37:40,442 I THINK THAT IS ALWAYS A 4462 02:37:40,442 --> 02:37:41,109 STARTING POINT. 4463 02:37:41,109 --> 02:37:44,079 JUST TO TELL PEOPLE TO DESCRIBE 4464 02:37:44,079 --> 02:37:45,914 ARE YOU PROVIDING INFORMATION OR 4465 02:37:45,914 --> 02:37:48,383 MATERIALS, ARE YOU DOING AN -- 4466 02:37:48,383 --> 02:37:49,717 FORUM IN COMMUNITIES, ARE YOU 4467 02:37:49,717 --> 02:37:50,752 HOLDING MEETINGS WITH THEM, ARE 4468 02:37:50,752 --> 02:37:52,620 THEY INVOLVED IN YOUR RESEARCH. 4469 02:37:52,620 --> 02:37:54,355 JUST EVEN TRY TO TELL PEOPLE, 4470 02:37:54,355 --> 02:37:56,624 DON'T JUST USE THE WORD, BECAUSE 4471 02:37:56,624 --> 02:37:59,561 IT ENCOMPASSES SO MANY THINGS. 4472 02:37:59,561 --> 02:38:00,995 IF YOU JUST USE IT WITHOUT 4473 02:38:00,995 --> 02:38:01,663 QUALIFYING IT. 4474 02:38:01,663 --> 02:38:03,998 I THINK THAT IS ONE WAY IN WHICH 4475 02:38:03,998 --> 02:38:06,734 YOU CAN GET A SENSE OF WHAT IS 4476 02:38:06,734 --> 02:38:08,603 HAPPENING. 4477 02:38:08,603 --> 02:38:09,704 THE OTHER THING WHEN I HEAR 4478 02:38:09,704 --> 02:38:11,072 PEOPLE SAY COMMUNITY IS I GET TO 4479 02:38:11,072 --> 02:38:13,675 ASK THEM, WHO IS YOUR COMMUNITY? 4480 02:38:13,675 --> 02:38:16,377 AND IT'S BECOME KIND OF A KNEE 4481 02:38:16,377 --> 02:38:18,012 JERK REACTION THAT EVERY TIME 4482 02:38:18,012 --> 02:38:20,548 SOMEONE SAYS I'M ENGAGING, I SAY 4483 02:38:20,548 --> 02:38:21,683 WHO IS YOUR COMMUNITY, WHAT ARE 4484 02:38:21,683 --> 02:38:23,017 YOU DOING WITH THEM, BECAUSE 4485 02:38:23,017 --> 02:38:24,219 WHEN I GET A SENSE OF WHAT IT 4486 02:38:24,219 --> 02:38:27,055 IS, IS THERE AN EASIER WAY OF 4487 02:38:27,055 --> 02:38:28,857 DEFINING IT? 4488 02:38:28,857 --> 02:38:32,594 I THINK SOME OF THE SCHOLARS -- 4489 02:38:32,594 --> 02:38:33,795 THAT'S WHY WE COME WITH LAYERS 4490 02:38:33,795 --> 02:38:35,864 OF ENGAGEMENT RATHER THAN SAYING 4491 02:38:35,864 --> 02:38:41,836 ONE WORD, SO THAT'S WHY WE HELD 4492 02:38:41,836 --> 02:38:42,604 INFORMATION -- CONSULTATIONS, SO 4493 02:38:42,604 --> 02:38:45,773 ON, SO YOU HEAR THESE LAYERS OF 4494 02:38:45,773 --> 02:38:48,810 ENGAGEMENT INVOLVEMENT, PEOPLE 4495 02:38:48,810 --> 02:38:50,211 TALK ABOUT QUESTIONS, WHO ARE 4496 02:38:50,211 --> 02:38:52,580 ALSO RESEARCHERS BEEN INVOLVEDED 4497 02:38:52,580 --> 02:38:53,448 IN THE ACTIVITY. 4498 02:38:53,448 --> 02:38:54,649 SO YOU HAVE THESE NAMES THAT ARE 4499 02:38:54,649 --> 02:38:56,818 OFTEN USED, BUT AGAIN I WOULD 4500 02:38:56,818 --> 02:38:58,052 SAY IF SOMEONE COULD JUST SAY 4501 02:38:58,052 --> 02:38:59,220 WHAT IT IS THAT THEY ARE DOING, 4502 02:38:59,220 --> 02:39:02,257 THAT IS HELPFUL. 4503 02:39:02,257 --> 02:39:05,426 I DON'T THINK I ANSWERED YOU, I 4504 02:39:05,426 --> 02:39:06,528 JUST -- THE COMPLEXITY OF IT. 4505 02:39:06,528 --> 02:39:08,563 >> I THINK YOU DID ANSWER 4506 02:39:08,563 --> 02:39:09,964 CAROLINE, DORCAS, AND I GUESS I 4507 02:39:09,964 --> 02:39:13,635 MIGHT SAY SOMETHING LIKE, THERE 4508 02:39:13,635 --> 02:39:17,038 IS A WORRY, I DON'T KNOW EXACTLY 4509 02:39:17,038 --> 02:39:18,306 FROM WHERE CAROLINE'S QUESTION 4510 02:39:18,306 --> 02:39:22,310 CAME FROM, BUT THERE IS A WORRY 4511 02:39:22,310 --> 02:39:24,212 THAT PEOPLE JUST SAY, AS YOU 4512 02:39:24,212 --> 02:39:26,381 JUST DESCRIBED, OH, I AM 4513 02:39:26,381 --> 02:39:28,583 ENGAGING THE COMMUNITY. 4514 02:39:28,583 --> 02:39:32,053 AND UNLESS WE ASK THEM, AS YOU 4515 02:39:32,053 --> 02:39:33,588 DESCRIBED, WHAT THEY'RE ACTUALLY 4516 02:39:33,588 --> 02:39:35,123 DOING, THEY'RE OFTEN USING IT IN 4517 02:39:35,123 --> 02:39:37,692 A SHORTHAND WAY, OR THEY KNOW 4518 02:39:37,692 --> 02:39:40,094 THEY SHOULD SAY SOMETHING ABOUT 4519 02:39:40,094 --> 02:39:42,630 THAT, SO I THINK, YOU KNOW, 4520 02:39:42,630 --> 02:39:45,066 MAYBE IT'S DIFFERENT 4521 02:39:45,066 --> 02:39:45,733 TERMINOLOGY, BUT I LIKE HOW YOU 4522 02:39:45,733 --> 02:39:47,802 FRAMED IT OF, YOU KNOW, IT'S 4523 02:39:47,802 --> 02:39:51,873 PERHAPS OUR RESPONSIBILITY TO -- 4524 02:39:51,873 --> 02:39:53,808 RESPONSIBILITY IS HARD, BUT WHEN 4525 02:39:53,808 --> 02:39:55,210 WE'RE CURIOUS, RIGHT, SAY, WELL, 4526 02:39:55,210 --> 02:39:58,613 TELL ME WHAT YOU'RE DOING. 4527 02:39:58,613 --> 02:39:59,981 OR TELL ME WHAT COMMUNITY MEANS 4528 02:39:59,981 --> 02:40:01,416 TO YOU, WHEN YOU SAY YOU'RE 4529 02:40:01,416 --> 02:40:02,517 ENGAGED WITH COMMUNITY, WHO IS 4530 02:40:02,517 --> 02:40:05,286 THAT THAT YOU'RE ENGAGED WITH? 4531 02:40:05,286 --> 02:40:06,955 AND THERE CAN BE A CONVERSATION. 4532 02:40:06,955 --> 02:40:09,891 BUT I ALSO THINK PRESENTATIONS 4533 02:40:09,891 --> 02:40:11,426 LIKE YOURS ARE A WAY TO MOVE 4534 02:40:11,426 --> 02:40:14,095 THIS BAR FORWARD TOO OF, YOU 4535 02:40:14,095 --> 02:40:19,901 KNOW, MAKING PEOPLE APPRECIATE 4536 02:40:19,901 --> 02:40:22,303 HOW THE SORT OF WHAT YOU IMAGINE 4537 02:40:22,303 --> 02:40:24,038 COMMUNITY ENGAGEMENT IS OF, OH, 4538 02:40:24,038 --> 02:40:25,006 YEAH, I'M GOING TO TALK WITH 4539 02:40:25,006 --> 02:40:26,074 SOME PEOPLE WHO ARE ENROLLED IN 4540 02:40:26,074 --> 02:40:29,544 THE STUDY, OR, YOU KNOW, THAT'S 4541 02:40:29,544 --> 02:40:32,780 NOT ENOUGH. 4542 02:40:32,780 --> 02:40:34,515 THAT THERE ARE GOALS AND 4543 02:40:34,515 --> 02:40:36,484 OBJECTIVES AND DEPENDING ON YOUR 4544 02:40:36,484 --> 02:40:38,319 GOALS AND OBJECTIVES, THE 4545 02:40:38,319 --> 02:40:39,087 COMMUNITY ENGAGEMENT THAT YOU 4546 02:40:39,087 --> 02:40:40,722 ARE ENGAGED IN CAN BE VERY 4547 02:40:40,722 --> 02:40:42,790 DIFFERENT. 4548 02:40:42,790 --> 02:40:43,992 SO MAYBE SOME DAY WE'LL HAVE 4549 02:40:43,992 --> 02:40:45,560 SOME BETTER LANGUAGE, BUT I LIKE 4550 02:40:45,560 --> 02:40:49,497 THE WAY YOU PHRASED ASKING THOSE 4551 02:40:49,497 --> 02:40:50,398 SPECIFIC QUESTIONS. 4552 02:40:50,398 --> 02:40:52,767 KELLY HAS A QUESTION. 4553 02:40:52,767 --> 02:40:53,201 >> HI. 4554 02:40:53,201 --> 02:40:54,202 THANK YOU FOR YOUR TALK. 4555 02:40:54,202 --> 02:40:57,138 I WAS WONDERING, JUST PACED ON 4556 02:40:57,138 --> 02:41:01,509 BASED ONYOUR TALK AND THE OTHER, 4557 02:41:01,509 --> 02:41:03,544 IT SEEMS LIKE THERE ARE A LOT OF 4558 02:41:03,544 --> 02:41:06,614 SAFEGUARDS OR PEOPLE SAYING 4559 02:41:06,614 --> 02:41:07,915 RESEARCHERS AND FUNDERS SHOULD 4560 02:41:07,915 --> 02:41:10,551 THINK ABOUT IN ORDER TO PROTECT 4561 02:41:10,551 --> 02:41:11,853 COMMUNITIES THAT MIGHT ENGAGE IN 4562 02:41:11,853 --> 02:41:12,587 HARM OR TO RECEIVE THAT THEY 4563 02:41:12,587 --> 02:41:13,655 RECEIVE A BENEFIT. 4564 02:41:13,655 --> 02:41:15,290 WHAT I WAS WONDERING IS THAT TO 4565 02:41:15,290 --> 02:41:17,125 ME, IT ALMOST SEEMS LIKE MAYBE 4566 02:41:17,125 --> 02:41:18,293 THIS FRAMING IS BACKWARDS, THAT 4567 02:41:18,293 --> 02:41:20,194 IT'S KIND OF LIKE HOW CAN WE 4568 02:41:20,194 --> 02:41:23,097 ENSURE THAT WE'RE DOING RESEARCH 4569 02:41:23,097 --> 02:41:24,299 AND, YOU KNOW, HOPEFULLY IN A 4570 02:41:24,299 --> 02:41:27,368 WAY THAT IS ALSO GOING TO HELP 4571 02:41:27,368 --> 02:41:28,436 PEOPLE, BUT IT SEEMS LIKE MAYBE 4572 02:41:28,436 --> 02:41:31,339 THE BETTER WAY TO AVOID SOME OF 4573 02:41:31,339 --> 02:41:32,774 THESE LIKE PITFALLS OF SORT OF 4574 02:41:32,774 --> 02:41:33,975 LIKE NOT DOING COMMUNITY 4575 02:41:33,975 --> 02:41:35,243 ENGAGEMENT THE RIGHT WAY OR LIKE 4576 02:41:35,243 --> 02:41:37,445 NOT ENSURING THAT THESE 4577 02:41:37,445 --> 02:41:38,780 COMMUNITIES ARE KIND OF GETTING 4578 02:41:38,780 --> 02:41:39,747 WHAT WOULD BE IN THEIR BEST 4579 02:41:39,747 --> 02:41:42,650 INTERESTS WOULD BE TO SAY THAT 4580 02:41:42,650 --> 02:41:46,487 PLAMAYBE THE PRIORITY SHOULD BE 4581 02:41:46,487 --> 02:41:48,656 WHAT CAN WE DO TO BENEFIT THESE 4582 02:41:48,656 --> 02:41:49,524 COMMUNITIES AND IF THAT IS 4583 02:41:49,524 --> 02:41:50,625 RESEARCH, HOW DO WE CARRY IT 4584 02:41:50,625 --> 02:41:51,159 OUT. 4585 02:41:51,159 --> 02:41:52,427 SO I GUESS I WAS WONDERING, WHAT 4586 02:41:52,427 --> 02:41:53,461 WOULD YOU SAY TO THAT KIND OF 4587 02:41:53,461 --> 02:41:55,763 TENSION OF THESE COMPETING 4588 02:41:55,763 --> 02:41:58,900 PRIORITIES OF REALLY DOING 4589 02:41:58,900 --> 02:42:00,435 RESEARCH AS A FORM OF SOLIDARITY 4590 02:42:00,435 --> 02:42:02,837 OR AID VERSUS PRIORITIZING THE 4591 02:42:02,837 --> 02:42:05,473 RESEARCH ITSELF AND TRYING TO 4592 02:42:05,473 --> 02:42:06,974 REDUCE HARM OR MAXIMIZE BENEFIT 4593 02:42:06,974 --> 02:42:11,045 TO THE EXTENT POSSIBLE? 4594 02:42:11,045 --> 02:42:13,314 >> THAT'S A LOT OF QUESTION, I 4595 02:42:13,314 --> 02:42:16,584 HOPE I GOT IT. 4596 02:42:16,584 --> 02:42:18,419 WHAT I'M HEARING IS, I THINK YOU 4597 02:42:18,419 --> 02:42:19,954 TRY TO POINT OUT SOME TENSION 4598 02:42:19,954 --> 02:42:22,824 THAT COULD ARISE BETWEEN WHEN WE 4599 02:42:22,824 --> 02:42:25,960 ENGAGE A COMMUNITY, WHERE THEIR 4600 02:42:25,960 --> 02:42:30,098 PRIORITIES FIT IN BOXES, WHAT 4601 02:42:30,098 --> 02:42:30,965 DEFINED RESEARCH PRIORITIES 4602 02:42:30,965 --> 02:42:31,966 COULD BE AND WHAT ARE SOME OF 4603 02:42:31,966 --> 02:42:35,436 THE AREAS THAT COULD THINK WE 4604 02:42:35,436 --> 02:42:37,071 MIGHT BY ALL GOOD INTENTIONS BE 4605 02:42:37,071 --> 02:42:39,107 ADDRESSING THEM BUT PERHAPS 4606 02:42:39,107 --> 02:42:39,741 COMMUNITIES MIGHT NOT BE SEEN 4607 02:42:39,741 --> 02:42:43,911 THAT WAY, AND DO CORRECT ME IF I 4608 02:42:43,911 --> 02:42:47,382 GOT IT WRONG, AND ABOUT 4609 02:42:47,382 --> 02:42:48,282 APPROPRIATE BENEFIT AND REDUCING 4610 02:42:48,282 --> 02:42:51,886 HARM AND RISKS IN RESEARCH. 4611 02:42:51,886 --> 02:42:53,087 I DON'T THINK I HAVE A RIGHT 4612 02:42:53,087 --> 02:42:55,690 ANSWER FOR THEM, TO ALL THOSE 4613 02:42:55,690 --> 02:42:57,525 QUESTIONS. 4614 02:42:57,525 --> 02:43:01,362 MY QUICK TAKE ON THESE IS, I 4615 02:43:01,362 --> 02:43:06,701 THINK IN THIS ERA AND TIME, 4616 02:43:06,701 --> 02:43:07,468 RESEARCH WITH COMMUNITIES, 4617 02:43:07,468 --> 02:43:11,305 RESEARCH THAT INVOLVES PEOPLE 4618 02:43:11,305 --> 02:43:13,474 AND THEIR -- SO I'M TALKING FROM 4619 02:43:13,474 --> 02:43:15,076 A POINT WHERE I KNOW I ADVOCATE 4620 02:43:15,076 --> 02:43:16,978 FOR COMMUNITY ENGAGEMENT, I 4621 02:43:16,978 --> 02:43:20,681 THINK RESEARCH THAT INVOLVES 4622 02:43:20,681 --> 02:43:23,317 PEOPLE IS LIKELY AND I'M NOT 4623 02:43:23,317 --> 02:43:25,453 SURE THAT THIS IS SCIENTIFICALLY 4624 02:43:25,453 --> 02:43:30,158 PROVEN, BUT IT LIKELY BY ALL 4625 02:43:30,158 --> 02:43:32,760 INTENTS AND PURPOSE TO BE BETTER 4626 02:43:32,760 --> 02:43:36,130 FOR THAT COMMUNITY TO BE 4627 02:43:36,130 --> 02:43:37,899 INVOLVED AND BE INVOLVED VERY 4628 02:43:37,899 --> 02:43:40,401 EARLY ON INCLUDING THINKING 4629 02:43:40,401 --> 02:43:42,804 WHETHER A PIECE IS A PRIORITY IN 4630 02:43:42,804 --> 02:43:43,438 THAT POPULATION. 4631 02:43:43,438 --> 02:43:44,872 AND OF COURSE AS A RESEARCHER, 4632 02:43:44,872 --> 02:43:47,775 YOU'D BE GOING AND HAVING LOOKED 4633 02:43:47,775 --> 02:43:49,777 AT WHETHER RESEARCH -- AND THAT 4634 02:43:49,777 --> 02:43:51,279 IS OKAY BECAUSE THAT IS OUR ROLE 4635 02:43:51,279 --> 02:43:54,081 AS A RESEARCH. 4636 02:43:54,081 --> 02:43:54,882 BUT PERHAPS OVER AND ABOVE WHAT 4637 02:43:54,882 --> 02:43:57,819 WE'RE ASKING IS IN ADDITION ALSO 4638 02:43:57,819 --> 02:44:00,655 SEEK COMMUNITY VIEWS AND THEY 4639 02:44:00,655 --> 02:44:02,056 MIGHT NOT TELL YOU YOUR SPECIFIC 4640 02:44:02,056 --> 02:44:02,990 RESEARCH QUESTION BUT THEY CAN 4641 02:44:02,990 --> 02:44:06,327 TELL YOU WHERE THE NEED IS AND 4642 02:44:06,327 --> 02:44:07,295 THEN IT'S UP TO YOU TO THINK 4643 02:44:07,295 --> 02:44:09,030 WHETHER YOU CAN ADDRESS THAT OR 4644 02:44:09,030 --> 02:44:11,966 YOU CAN DEFINE THE RESEARCH 4645 02:44:11,966 --> 02:44:13,167 QUESTION. 4646 02:44:13,167 --> 02:44:16,237 SO THAT'S ONE ASPECT TO IT. 4647 02:44:16,237 --> 02:44:18,706 RECOGNIZE ALL RESEARCH, AND AS 4648 02:44:18,706 --> 02:44:20,475 MUCH AS -- FOR ENGAGEMENT, NOT 4649 02:44:20,475 --> 02:44:23,077 ALL RESEARCH CAN NECESSARILY 4650 02:44:23,077 --> 02:44:25,379 HAVE ELEMENTS OF ENGAGEMENT. 4651 02:44:25,379 --> 02:44:27,982 AND WE'VE REALLY TRIED, AND EVEN 4652 02:44:27,982 --> 02:44:29,517 MY OWN RESEARCH HAD COME BACK 4653 02:44:29,517 --> 02:44:31,752 AND SAY I REALLY TRIED, BUT IS 4654 02:44:31,752 --> 02:44:34,388 THIS A KIND OF RESEARCH 4655 02:44:34,388 --> 02:44:35,823 QUESTION, THAT MEANS TO INVOLVE 4656 02:44:35,823 --> 02:44:38,559 COMMUNITY ENGAGEMENT. 4657 02:44:38,559 --> 02:44:40,161 SOME OF THE REALLY BASIC -- AND 4658 02:44:40,161 --> 02:44:44,265 NOT OWL, S ALL, SOME COULD BE SE 4659 02:44:44,265 --> 02:44:50,538 UK, THBASIC,THERE'S NO -- YOU'RO 4660 02:44:50,538 --> 02:44:51,372 DECIDE SHOULD I GET COMMUNITIES 4661 02:44:51,372 --> 02:44:52,707 AND SOME OF IT COULD BE YES 4662 02:44:52,707 --> 02:44:55,943 LET'S ENGAGE TO LET THEM N KNOW 4663 02:44:55,943 --> 02:44:59,447 WHAT I'M DOING, BUT IT MIGHT NOT 4664 02:44:59,447 --> 02:45:00,982 HAVE ANYTHING ELSE APART FROM 4665 02:45:00,982 --> 02:45:02,583 CREATING AWARENESS OF WHAT 4666 02:45:02,583 --> 02:45:05,219 YOU'RE DOING. 4667 02:45:05,219 --> 02:45:07,522 THE EXTENT TO WHICH I THINK 4668 02:45:07,522 --> 02:45:10,057 ENGAGEMENT CAN INFORM ON 4669 02:45:10,057 --> 02:45:12,393 APPROPRIATE BENEFITS OF RISK, 4670 02:45:12,393 --> 02:45:18,199 HARM REDUCTION, I THINK WE'VE 4671 02:45:18,199 --> 02:45:20,701 DONE SOME WORK, WE HAD TO USE A 4672 02:45:20,701 --> 02:45:21,903 VERY PARTICULAR METHODOLOGY 4673 02:45:21,903 --> 02:45:24,939 BECAUSE OF AGAIN THESE AREAS 4674 02:45:24,939 --> 02:45:27,575 MIGHT SOUND VERY CLEAR TO US. 4675 02:45:27,575 --> 02:45:29,277 BUT DISCUSSING WHAT IS OUR RISK 4676 02:45:29,277 --> 02:45:31,579 AND HOW RISK DIFFER FROM HARM TO 4677 02:45:31,579 --> 02:45:34,315 THE COMMUNITY. 4678 02:45:34,315 --> 02:45:37,818 IN A WAY THAT CAN MEANINGFULLY 4679 02:45:37,818 --> 02:45:41,188 INFORM YOU, DOES REQUIRE SOME 4680 02:45:41,188 --> 02:45:43,257 KIND OF EXPERTISE, AND WAVE DONE 4681 02:45:43,257 --> 02:45:47,962 THAT IN OUR CONTEXT, BECAUSE WE 4682 02:45:47,962 --> 02:45:50,097 KIND OF BUILD -- TO BE ABLE TO 4683 02:45:50,097 --> 02:45:50,464 DO THAT. 4684 02:45:50,464 --> 02:45:54,602 SO I THINK IT'S A GOOD THING. 4685 02:45:54,602 --> 02:45:56,237 BUT I ALSO RECOGNIZE THAT NOT 4686 02:45:56,237 --> 02:45:59,307 EVERYBODY MIGHT HAVE THE -- TO 4687 02:45:59,307 --> 02:46:00,808 DO THAT AND YOU MIGHT NEED TO 4688 02:46:00,808 --> 02:46:01,909 THINK VERY CAREFULLY AGAIN WHAT 4689 02:46:01,909 --> 02:46:03,110 IS YOUR GOAL OF ENGAGEMENT AND 4690 02:46:03,110 --> 02:46:04,512 WHAT DO YOU WANT TO GET OUT OF 4691 02:46:04,512 --> 02:46:06,581 IT, AND IT'S ONE THING TO SAY 4692 02:46:06,581 --> 02:46:08,549 IT'S A NICE THING TO DO, IT'S 4693 02:46:08,549 --> 02:46:10,251 ANOTHER THING TO SAY IT'S -- TO 4694 02:46:10,251 --> 02:46:10,585 DO. 4695 02:46:10,585 --> 02:46:12,320 SO I'M JUST PUTTING IT OUT THERE 4696 02:46:12,320 --> 02:46:13,220 TO SAY THESE ARE SOME OF THE 4697 02:46:13,220 --> 02:46:14,422 THINGS YOU MIGHT NEED TO THINK 4698 02:46:14,422 --> 02:46:14,622 ABOUT. 4699 02:46:14,622 --> 02:46:18,359 I AM NOT SURE ON ONE SIDE OF 4700 02:46:18,359 --> 02:46:21,195 YOUR QUESTION -- ENGAGEMENT IS 4701 02:46:21,195 --> 02:46:22,597 GOOD BUT NOT IN ALL 4702 02:46:22,597 --> 02:46:23,564 CIRCUMSTANCES AND YOU NEED TO 4703 02:46:23,564 --> 02:46:25,633 THINK CAREFULLY WHY YOU'RE 4704 02:46:25,633 --> 02:46:27,335 ENGAGING, WHAT THE ISSUE IS, AND 4705 02:46:27,335 --> 02:46:28,235 WHAT IS THE APPROPRIATE WAY IN 4706 02:46:28,235 --> 02:46:29,337 WHICH YOU CAN ENGAGE. 4707 02:46:29,337 --> 02:46:30,972 AND SOME OF THOSE WILL REQUIRE 4708 02:46:30,972 --> 02:46:33,007 SOME QUITE SCIENTIFIC METHOD IN 4709 02:46:33,007 --> 02:46:35,876 OUR SETTING WE HAVE USED -- 4710 02:46:35,876 --> 02:46:37,378 CONSULTATIONS QUITE A LOT, FOR 4711 02:46:37,378 --> 02:46:39,246 SOME OF THE REALLY COMPLEX 4712 02:46:39,246 --> 02:46:42,083 TOPICS AND WE FOUND IT REALLY 4713 02:46:42,083 --> 02:46:42,316 USEFUL. 4714 02:46:42,316 --> 02:46:43,584 >> I'LL JUST ADD, I'LL MAYBE 4715 02:46:43,584 --> 02:46:48,055 BRING THIS BACK TO WHERE ANNETTE 4716 02:46:48,055 --> 02:46:49,790 BROUGHT US IN TALKING ABOUT THE 4717 02:46:49,790 --> 02:46:52,960 076 TRIALS, FOR EXAMPLE. 4718 02:46:52,960 --> 02:46:53,961 SO ONE CHALLENGE AT THE TIME 4719 02:46:53,961 --> 02:46:57,965 MIGHT HAVE BEEN WHY DON'T YOU -- 4720 02:46:57,965 --> 02:47:00,067 WE COULD TALK ABOUT TWO "YOU" 4721 02:47:00,067 --> 02:47:01,702 IS, JUST MAKE SURE THAT ALL THE 4722 02:47:01,702 --> 02:47:04,772 WOMEN WHO MAY BENEFIT OUTSIDE OF 4723 02:47:04,772 --> 02:47:06,941 THE UNITED STATES HAVE ACCESS TO 4724 02:47:06,941 --> 02:47:10,544 THE FULL REGIMEN. 4725 02:47:10,544 --> 02:47:12,079 AND LET'S DEVOTE ALL OF OUR 4726 02:47:12,079 --> 02:47:13,147 ATTENTION TO THAT. 4727 02:47:13,147 --> 02:47:13,481 RIGHT? 4728 02:47:13,481 --> 02:47:15,983 THAT COULD HAVE BEEN AN 4729 02:47:15,983 --> 02:47:19,020 ALTERNATIVE PATH, BUT BECAUSE WE 4730 02:47:19,020 --> 02:47:24,091 LIVE IN A NON-IDEAL SETTING, 4731 02:47:24,091 --> 02:47:27,895 THAT WAS NOT FEASIBLE, SO -- BUT 4732 02:47:27,895 --> 02:47:31,832 THIS BRINGS UP THE QUESTION OF 4733 02:47:31,832 --> 02:47:32,900 HOW OUGHT PUBLIC HEALTH 4734 02:47:32,900 --> 02:47:34,068 RESEARCHERS IN PARTICULAR THINK 4735 02:47:34,068 --> 02:47:34,869 ABOUT THE SORT OF TENSIONS THEY 4736 02:47:34,869 --> 02:47:38,673 MAY EXPERIENCE OF I WANT TO DO 4737 02:47:38,673 --> 02:47:40,007 SOMETHING THAT BENEFITS THE 4738 02:47:40,007 --> 02:47:42,610 LARGER POPULATION, I KNOW THAT 4739 02:47:42,610 --> 02:47:44,445 IN THE PROCESS I'M GOING TO 4740 02:47:44,445 --> 02:47:45,980 ENCOUNTER HUMANITARIAN NEED, BUT 4741 02:47:45,980 --> 02:47:48,582 I'M NOT NECESSARILY THERE TO 4742 02:47:48,582 --> 02:47:51,185 ADDRESS THE HUMANITARIAN NEED, 4743 02:47:51,185 --> 02:47:52,753 AND THE TENSION THAT THEY MAY 4744 02:47:52,753 --> 02:47:54,789 FEEL ABOUT WANTING TO MAKE A 4745 02:47:54,789 --> 02:47:56,891 DIFFERENCE IN THE FUTURE VERSUS 4746 02:47:56,891 --> 02:47:58,959 IN REALTIME, JUST TO SAY THAT 4747 02:47:58,959 --> 02:48:00,494 THERE ARE, YOU KNOW -- THERE ARE 4748 02:48:00,494 --> 02:48:02,997 A LOT OF THINGS GOING ON IN 4749 02:48:02,997 --> 02:48:04,732 TERMS OF WHETHER WE MAKE A 4750 02:48:04,732 --> 02:48:06,500 DECISION TO FUND OR SUPPORT 4751 02:48:06,500 --> 02:48:08,703 PARTICULAR RESEARCH INITIATIVES, 4752 02:48:08,703 --> 02:48:10,738 AND AS YOU, I THINK VERY 4753 02:48:10,738 --> 02:48:13,808 APPROPRIATELY SAID, RIGHT, THERE 4754 02:48:13,808 --> 02:48:17,745 ARE SOME CIRCUMSTANCES WHERE 4755 02:48:17,745 --> 02:48:18,412 COMMUNITY COLLABORATION, 4756 02:48:18,412 --> 02:48:23,651 PARTICIPATION, ENGAGEMENT, CAN 4757 02:48:23,651 --> 02:48:26,721 FACILITATE A GOOD LINEUP BETWEEN 4758 02:48:26,721 --> 02:48:27,922 THE NEEDS OF THE COMMUNITY AND 4759 02:48:27,922 --> 02:48:31,192 WHAT THE RESEARCHERS WANT TO 4760 02:48:31,192 --> 02:48:32,193 ACCOMPLISH, AND TOGETHER, 4761 02:48:32,193 --> 02:48:34,361 CONTRIBUTE TO SOMETHING THAT 4762 02:48:34,361 --> 02:48:36,230 WILL HELP FUTURE PATIENTS OR THE 4763 02:48:36,230 --> 02:48:37,865 LARGER COMMUNITY. 4764 02:48:37,865 --> 02:48:39,300 AND IT'S SORT OF THE BIGGER 4765 02:48:39,300 --> 02:48:40,835 QUESTION OF, YOU KNOW, DO WE DO 4766 02:48:40,835 --> 02:48:42,403 RESEARCH OR DO WE DO SOMETHING 4767 02:48:42,403 --> 02:48:44,672 ELSE OR DO WE DO RESEARCH THAT'S 4768 02:48:44,672 --> 02:48:46,107 A PARTICULAR DESIGN VERSUS 4769 02:48:46,107 --> 02:48:47,074 ANOTHER WHEN YOU'RE THINKING 4770 02:48:47,074 --> 02:48:49,443 ABOUT FEASIBILITY AND EFFICIENCY 4771 02:48:49,443 --> 02:48:51,445 AND ALL OF THOSE THINGS. 4772 02:48:51,445 --> 02:48:52,413 >> YEP. 4773 02:48:52,413 --> 02:48:54,048 >> AND I THINK WE'RE AT TIME. 4774 02:48:54,048 --> 02:48:55,816 I'M SO SORRY, DORCAS, BUT THANK 4775 02:48:55,816 --> 02:48:58,753 YOU AGAIN FOR JOINING US. 4776 02:48:58,753 --> 02:48:58,953 AND -- 4777 02:48:58,953 --> 02:48:59,286 THANK YOU. 4778 02:48:59,286 --> 02:49:01,989 LOOK FORWARD TO HEARING FROM 4779 02:49:01,989 --> 02:49:03,090 YOU AGAIN. 4780 02:49:03,090 --> 02:49:03,624 THANKS A LOT. 4781 02:49:03,624 --> 02:49:09,997 THANK YOU SO MUCH!