1 00:00:12,446 --> 00:00:16,450 In the session today, I have, 2 00:00:17,284 --> 00:00:21,555 basically brought up the themes, and one is kind of, 3 00:00:22,356 --> 00:00:24,569 identify the range of communities, publics 4 00:00:24,569 --> 00:00:25,993 and engagement approaches. 5 00:00:26,693 --> 00:00:28,195 Some of the practical and ethical 6 00:00:28,195 --> 00:00:29,696 implications of what communities 7 00:00:31,164 --> 00:00:33,204 and also consider some of the areas 8 00:00:33,204 --> 00:00:35,302 that we need to think about when we 9 00:00:35,302 --> 00:00:37,762 are planning and implementing community 10 00:00:37,762 --> 00:00:39,907 and public engagement strategies. 11 00:00:40,140 --> 00:00:41,942 And we'll start with a brief feedback. 12 00:00:41,942 --> 00:00:44,945 I already received the feedback, so I'll summarize 13 00:00:44,945 --> 00:00:47,679 some of the areas that were coming, in that 14 00:00:47,679 --> 00:00:48,315 feedback. 15 00:00:48,715 --> 00:00:51,368 There are four areas that I hope to cover within this 16 00:00:51,368 --> 00:00:51,818 session. 17 00:00:52,753 --> 00:00:55,185 One is very briefly touch on why engagement in 18 00:00:55,185 --> 00:00:55,555 health 19 00:00:55,555 --> 00:00:57,224 research is important. 20 00:00:57,224 --> 00:01:00,227 And then, a little bit of the, 21 00:01:00,460 --> 00:01:03,530 deep dive into, the different ways 22 00:01:03,530 --> 00:01:05,752 in which communities can be engaged 23 00:01:05,752 --> 00:01:08,101 and the goals for those engagements. 24 00:01:09,169 --> 00:01:11,271 But again, contextualizing these 25 00:01:11,271 --> 00:01:13,824 because engagement is very context 26 00:01:13,824 --> 00:01:14,574 specific. 27 00:01:14,574 --> 00:01:17,244 So paying attention to the context. 28 00:01:17,244 --> 00:01:20,247 And then I'll talk a little bit about representation 29 00:01:20,580 --> 00:01:22,968 and some thoughts on some of the limits of 30 00:01:22,968 --> 00:01:23,650 engagement. 31 00:01:25,552 --> 00:01:28,555 A lot of work that I'm going to draw on 32 00:01:28,789 --> 00:01:30,805 is, colleagues that have been working 33 00:01:30,805 --> 00:01:33,093 in the field of white men for many years. 34 00:01:33,293 --> 00:01:35,762 So I'd really like to recognize that 35 00:01:35,762 --> 00:01:37,851 and draw heavily on the institution 36 00:01:37,851 --> 00:01:38,865 where I'm based. 37 00:01:39,199 --> 00:01:41,687 The camera work, plus research program 38 00:01:41,687 --> 00:01:42,669 that has been, 39 00:01:44,304 --> 00:01:46,719 implementing engagement as implementing or 40 00:01:46,719 --> 00:01:49,076 undertaking a government for many years. 41 00:01:49,076 --> 00:01:50,811 And so a lot of my experience 42 00:01:50,811 --> 00:01:54,052 will be drawn on that, but also informed by other 43 00:01:54,052 --> 00:01:54,648 contexts 44 00:01:54,648 --> 00:01:56,602 in which we have work and colleagues 45 00:01:56,602 --> 00:01:58,285 that, from different settings. 46 00:01:59,920 --> 00:02:01,855 So wide engagement. 47 00:02:01,855 --> 00:02:03,423 What sounds, 48 00:02:05,025 --> 00:02:07,863 counter-intuitive because you've just come from a session 49 00:02:07,863 --> 00:02:08,161 where 50 00:02:08,161 --> 00:02:12,027 what's been discussed, why engagement in both research 51 00:02:12,027 --> 00:02:12,599 matters 52 00:02:12,933 --> 00:02:17,771 and you reflect on the video, that was shared earlier 53 00:02:17,771 --> 00:02:20,377 and I hope you all managed to view 54 00:02:20,377 --> 00:02:22,676 it is, around 15, 11 minutes. 55 00:02:22,676 --> 00:02:24,044 Video. 56 00:02:24,044 --> 00:02:26,580 And you colleagues Datacom video. 57 00:02:26,580 --> 00:02:28,815 This is a video that was taken. 58 00:02:28,815 --> 00:02:31,478 It's a very, if you look at the map, 59 00:02:31,478 --> 00:02:33,253 it's really very early. 60 00:02:34,021 --> 00:02:35,978 People I researchers just thinking, 61 00:02:35,978 --> 00:02:37,991 how do we bring the community voice 62 00:02:38,291 --> 00:02:39,793 into the research institution? 63 00:02:39,793 --> 00:02:44,031 So, it's not like, experts who took the video 64 00:02:44,564 --> 00:02:47,980 and it is of community members, representatives or community 65 00:02:47,980 --> 00:02:48,435 members 66 00:02:48,902 --> 00:02:53,674 in their home environment having a conversation about what 67 00:02:53,674 --> 00:02:55,761 they thought the work of the camera 68 00:02:55,761 --> 00:02:57,611 contrast research program was, 69 00:02:58,145 --> 00:03:00,881 and their views about how 70 00:03:00,881 --> 00:03:03,884 that work has had impact on their lives. 71 00:03:04,284 --> 00:03:06,353 This was 2005. 72 00:03:06,353 --> 00:03:08,121 A background for that. 73 00:03:08,121 --> 00:03:10,557 At the time of taking this video. 74 00:03:10,557 --> 00:03:13,467 The program had been in the coastal part 75 00:03:13,467 --> 00:03:15,796 of Kenya for the last 15 years. 76 00:03:16,196 --> 00:03:18,665 Throughout, for every reset that were 77 00:03:18,665 --> 00:03:19,533 undertaking. 78 00:03:19,900 --> 00:03:22,949 There was careful consideration or talk with the community 79 00:03:22,949 --> 00:03:23,370 leaders 80 00:03:23,370 --> 00:03:26,673 to get ideas of how to get to communities. 81 00:03:26,673 --> 00:03:28,341 Often that involved communities. 82 00:03:28,341 --> 00:03:31,078 So as far as researchers were concerned, 83 00:03:31,078 --> 00:03:33,805 they thought they were doing a pretty good job with a gated 84 00:03:33,805 --> 00:03:34,314 community. 85 00:03:34,815 --> 00:03:36,825 But this video was really powerful in 86 00:03:36,825 --> 00:03:39,052 showing that perhaps they were engaging, 87 00:03:39,052 --> 00:03:42,789 but were not really listening, to the views from the community. 88 00:03:42,789 --> 00:03:45,759 Or they were doing engagement as researchers wanted. 89 00:03:45,759 --> 00:03:47,600 The goals were more for them rather 90 00:03:47,600 --> 00:03:49,863 than what the communities really expected. 91 00:03:50,464 --> 00:03:52,632 So I had a couple questions, 92 00:03:54,000 --> 00:03:55,302 accompanying 93 00:03:55,302 --> 00:03:58,059 the video, and one of it was attention 94 00:03:58,059 --> 00:03:59,873 was, from the community, 95 00:04:00,574 --> 00:04:03,577 that were, that were coming from the video, 96 00:04:03,844 --> 00:04:07,065 from listening to the video and how engagement might have 97 00:04:07,065 --> 00:04:07,347 seen 98 00:04:07,347 --> 00:04:10,784 the community in this context and how it might assist 99 00:04:10,784 --> 00:04:12,954 researchers or even research institutions 100 00:04:12,954 --> 00:04:13,854 in this context. 101 00:04:14,454 --> 00:04:17,457 Like I said, Holly very, 102 00:04:17,457 --> 00:04:20,460 graciously sends to me the feedback, 103 00:04:20,861 --> 00:04:22,696 and I'm very happy to see that 104 00:04:22,696 --> 00:04:26,375 many of you all talked of very similar thing and very 105 00:04:26,375 --> 00:04:27,000 briefly, 106 00:04:27,000 --> 00:04:29,329 just about some of the things that we, 107 00:04:29,329 --> 00:04:30,003 I imagine, 108 00:04:31,037 --> 00:04:34,274 listening through, to hear many rumors, that 109 00:04:34,741 --> 00:04:37,506 that community members had about research, 110 00:04:37,506 --> 00:04:39,546 about the work of the program. 111 00:04:39,846 --> 00:04:42,449 And often these were linked with things 112 00:04:42,449 --> 00:04:44,384 like symbols like this logo, 113 00:04:45,318 --> 00:04:49,689 versus research procedures, like the amount of blood, 114 00:04:49,689 --> 00:04:53,260 the follow up in homes, the motorbikes, the vehicles, 115 00:04:54,761 --> 00:04:58,098 and the vision or the view of research. 116 00:04:58,098 --> 00:05:00,733 How they saw the research institution is is 117 00:05:00,733 --> 00:05:01,101 very, 118 00:05:03,036 --> 00:05:05,539 very well resourced institution 119 00:05:05,539 --> 00:05:08,341 and ranking where all the money comes from. 120 00:05:08,341 --> 00:05:10,703 So there was a lot that was linked to my, 121 00:05:10,703 --> 00:05:12,546 there was this an appreciation. 122 00:05:12,546 --> 00:05:15,949 And sometimes, I would say of appreciation 123 00:05:16,383 --> 00:05:19,152 for the work of the institution of Cambridge. 124 00:05:19,152 --> 00:05:22,222 It was often been described as a health care provider. 125 00:05:22,989 --> 00:05:25,280 And very rarely was it been discussed 126 00:05:25,280 --> 00:05:27,260 as a health research institute. 127 00:05:27,661 --> 00:05:30,230 And they really valued the expertise. 128 00:05:30,230 --> 00:05:33,266 I think sometimes they even exaggerated 129 00:05:33,266 --> 00:05:34,901 how much, a disease. 130 00:05:34,901 --> 00:05:38,838 But it has decreased as a result of the work of the institution. 131 00:05:39,139 --> 00:05:42,075 I think exaggerated because obviously we know 132 00:05:42,075 --> 00:05:44,644 that was not the case when we looked at the numbers 133 00:05:44,644 --> 00:05:46,666 and the mortality and morbidity cases 134 00:05:46,666 --> 00:05:47,814 that were coming in. 135 00:05:48,048 --> 00:05:48,782 So when they talk 136 00:05:48,782 --> 00:05:51,965 about 95% reduction in malaria, we know that was not always the 137 00:05:51,965 --> 00:05:52,319 truth, 138 00:05:52,519 --> 00:05:53,753 but that's how they viewed it. 139 00:05:55,188 --> 00:05:58,758 We talked about the differences in terms of the level 140 00:05:58,758 --> 00:06:01,090 and quality of care that is been provided 141 00:06:01,090 --> 00:06:02,796 by the Public Health Ministry 142 00:06:03,096 --> 00:06:05,709 when compared with when they are received 143 00:06:05,709 --> 00:06:08,068 by what we call the country doctors, 144 00:06:08,602 --> 00:06:11,071 and also what was in that many things. 145 00:06:11,071 --> 00:06:12,505 But also what was emergent. 146 00:06:12,505 --> 00:06:14,390 Interesting for us is to recognize 147 00:06:14,390 --> 00:06:16,109 that even our own staff didn't 148 00:06:16,109 --> 00:06:18,422 seem to understand what the institution 149 00:06:18,422 --> 00:06:20,380 does, and were also contributing 150 00:06:20,614 --> 00:06:22,966 for the misinformation and the rumors that were 151 00:06:22,966 --> 00:06:23,617 circulating. 152 00:06:25,185 --> 00:06:28,188 Now, looking at the responses on how it gets, 153 00:06:29,089 --> 00:06:32,117 in these communities, some of the things were about 154 00:06:32,117 --> 00:06:32,592 clarity 155 00:06:32,592 --> 00:06:36,296 about what what research is, what the institution is about, 156 00:06:36,296 --> 00:06:38,638 what the program is all about, clarity 157 00:06:38,638 --> 00:06:40,734 about these procedures that form, 158 00:06:42,135 --> 00:06:44,271 the roles of different stakeholders. 159 00:06:44,271 --> 00:06:46,439 And what role did they play? 160 00:06:46,439 --> 00:06:49,142 So when you've got doctors in the ward, 161 00:06:50,110 --> 00:06:51,177 communities may not 162 00:06:51,177 --> 00:06:53,407 always understand when it is research 163 00:06:53,407 --> 00:06:55,215 and when it is clinical care. 164 00:06:55,415 --> 00:06:58,694 So understanding the roles and what each stakeholder is 165 00:06:58,694 --> 00:06:59,052 doing 166 00:06:59,452 --> 00:07:02,455 would perhaps help clarify some of the areas. 167 00:07:03,189 --> 00:07:05,458 The other area that your judgment would help 168 00:07:05,458 --> 00:07:07,431 was articulate, provide an opportunity 169 00:07:07,431 --> 00:07:09,195 for communities to try to collect 170 00:07:09,195 --> 00:07:11,459 their needs and their priorities and see 171 00:07:11,459 --> 00:07:13,667 whether or how this could be taken up, 172 00:07:14,067 --> 00:07:16,102 but either the research institution or 173 00:07:16,102 --> 00:07:18,405 by other stakeholders who do provide those 174 00:07:19,572 --> 00:07:21,985 services and then perhaps contributed 175 00:07:21,985 --> 00:07:22,442 trauma 176 00:07:22,442 --> 00:07:24,887 against community about health priority 177 00:07:24,887 --> 00:07:26,579 health needs of themselves 178 00:07:26,780 --> 00:07:29,783 and to support health research and what role it plays, 179 00:07:30,150 --> 00:07:32,580 what came out as some of the ways 180 00:07:32,580 --> 00:07:34,421 in which a judgment skin 181 00:07:34,421 --> 00:07:37,536 perceived to be such as institutions 182 00:07:37,536 --> 00:07:39,959 is, it could help, research 183 00:07:39,959 --> 00:07:42,456 institutions, find better ways to interact 184 00:07:42,456 --> 00:07:43,763 and inform community. 185 00:07:44,798 --> 00:07:48,401 And perhaps, in so doing, open themselves up 186 00:07:48,401 --> 00:07:51,764 to being part of the community rather than community as a 187 00:07:51,764 --> 00:07:52,472 researcher. 188 00:07:52,472 --> 00:07:57,544 So these, come together as a community of research 189 00:07:57,777 --> 00:08:00,724 that in encompasses both researchers and 190 00:08:00,724 --> 00:08:01,681 communities. 191 00:08:02,749 --> 00:08:04,804 If I get comment with communities 192 00:08:04,804 --> 00:08:07,420 and participants to address issues around 193 00:08:07,620 --> 00:08:11,528 specific research questions, but what about the institution 194 00:08:11,528 --> 00:08:12,058 itself? 195 00:08:12,459 --> 00:08:15,526 I talked about the importance of also considering staff 196 00:08:15,526 --> 00:08:16,196 engagement, 197 00:08:16,196 --> 00:08:18,664 not simply community, but, the stuff 198 00:08:18,664 --> 00:08:21,201 that I interacted that we work with. 199 00:08:21,801 --> 00:08:23,103 Those are real. 200 00:08:23,103 --> 00:08:26,039 Valued gatekeepers in the community. 201 00:08:26,039 --> 00:08:28,145 Information that they share is taken 202 00:08:28,145 --> 00:08:30,543 very seriously, and it is highly valued. 203 00:08:30,810 --> 00:08:33,896 So therefore, having a program of work 204 00:08:33,896 --> 00:08:35,682 around tough judgment 205 00:08:36,483 --> 00:08:38,607 and then, of course, thinking about long 206 00:08:38,607 --> 00:08:40,253 term investment in engagement, 207 00:08:40,553 --> 00:08:44,196 not simply as a one off event that is going to be undertaken 208 00:08:44,196 --> 00:08:44,924 for a year. 209 00:08:44,924 --> 00:08:47,427 And everything is is all settled 210 00:08:47,427 --> 00:08:50,332 by thinking carefully about a program of work, 211 00:08:50,332 --> 00:08:50,964 including 212 00:08:51,264 --> 00:08:53,443 ensuring these appropriate skills 213 00:08:53,443 --> 00:08:54,367 for judgment. 214 00:08:54,367 --> 00:08:57,137 I pause in case there's any question. 215 00:08:57,137 --> 00:08:58,204 Please do we? 216 00:08:58,204 --> 00:09:00,809 I know there are many things that you learned from that 217 00:09:00,809 --> 00:09:01,141 video. 218 00:09:01,141 --> 00:09:03,710 So that is a background to why we then, 219 00:09:04,778 --> 00:09:06,546 decided to 220 00:09:06,546 --> 00:09:08,927 to come up with a judgment positive 221 00:09:08,927 --> 00:09:10,083 for the program. 222 00:09:10,784 --> 00:09:12,552 And that's a quick recap. 223 00:09:12,552 --> 00:09:16,656 It's not just us, but really globally, community engagement 224 00:09:16,656 --> 00:09:17,490 is promoted 225 00:09:17,824 --> 00:09:20,827 and many funders, institutions have developed, 226 00:09:21,761 --> 00:09:24,597 fundings teams, there website 227 00:09:24,597 --> 00:09:27,734 that are dedicated to community and public engagement. 228 00:09:27,734 --> 00:09:31,371 There's a lot of material out on how you can engage. 229 00:09:31,671 --> 00:09:34,340 You can engage what to think about engagement. 230 00:09:34,340 --> 00:09:36,383 And so what I'm going to be doing 231 00:09:36,383 --> 00:09:39,045 the next few, slides is simply summarizing 232 00:09:39,045 --> 00:09:42,515 some of the information that is already, quite, 233 00:09:43,683 --> 00:09:45,952 clear, accessible. 234 00:09:45,952 --> 00:09:48,288 And one way of how we think about community 235 00:09:48,288 --> 00:09:51,458 and public engagement in areas that are always contested. 236 00:09:51,958 --> 00:09:53,026 One is obvious. 237 00:09:53,026 --> 00:09:55,462 Why do we need to gauge? 238 00:09:55,462 --> 00:09:57,630 And I think now this is a moot point. 239 00:09:57,630 --> 00:09:58,398 Moot point. 240 00:09:58,398 --> 00:10:01,304 But, many years ago, that used to be, 241 00:10:01,304 --> 00:10:03,503 quite of some conversation. 242 00:10:04,070 --> 00:10:05,930 And then these, of course, questions 243 00:10:05,930 --> 00:10:07,273 about whom do you engage? 244 00:10:07,474 --> 00:10:09,309 Because communities are different. 245 00:10:09,309 --> 00:10:11,432 What is a community when it comes to 246 00:10:11,432 --> 00:10:12,612 representativeness? 247 00:10:12,612 --> 00:10:14,214 There are questions about that. 248 00:10:14,214 --> 00:10:16,015 And then how do you engage. 249 00:10:16,015 --> 00:10:18,454 And oftentimes you know, that a catchment is 250 00:10:18,454 --> 00:10:19,118 implemented 251 00:10:19,118 --> 00:10:21,708 pragmatically, often is not very careful 252 00:10:21,708 --> 00:10:22,355 thinking. 253 00:10:22,722 --> 00:10:25,358 Often people encounter problems in the field 254 00:10:25,358 --> 00:10:26,795 when they are collecting the data, 255 00:10:26,795 --> 00:10:28,528 when they are recruiting a participants, 256 00:10:28,928 --> 00:10:32,098 and perhaps only then they think these are steps we. 257 00:10:32,098 --> 00:10:33,566 We need to have a community. 258 00:10:35,702 --> 00:10:38,100 And we are hoping that through these, 259 00:10:38,100 --> 00:10:39,072 conversations, 260 00:10:39,072 --> 00:10:42,314 we can challenge that and say that engagement needs to be very 261 00:10:42,314 --> 00:10:42,575 much 262 00:10:42,575 --> 00:10:45,979 an integral part of the entire research system. 263 00:10:47,547 --> 00:10:50,083 So why engage communities? 264 00:10:50,083 --> 00:10:52,894 Often to both, you know, to talk about that 265 00:10:52,894 --> 00:10:53,286 many. 266 00:10:53,853 --> 00:10:57,223 But, at a broader level, you can, 267 00:10:57,991 --> 00:11:00,073 you can group them to broad categories, 268 00:11:00,073 --> 00:11:00,393 these 269 00:11:00,393 --> 00:11:02,250 what we call intrinsic value obligation 270 00:11:02,250 --> 00:11:04,297 that it is about is the right thing to do. 271 00:11:05,198 --> 00:11:09,396 Even if it didn't contribute to anything, instrumental like 272 00:11:09,396 --> 00:11:10,036 anything 273 00:11:10,036 --> 00:11:12,699 like increment in terms of recruitment 274 00:11:12,699 --> 00:11:14,240 or acceptance of you. 275 00:11:14,240 --> 00:11:16,438 So the fact that you are in a position 276 00:11:16,438 --> 00:11:18,578 and I talk about you as a researcher 277 00:11:18,578 --> 00:11:20,077 in this instance, but a component 278 00:11:20,077 --> 00:11:21,848 is that sometimes research has to come 279 00:11:21,848 --> 00:11:24,362 from the very community where research is being 280 00:11:24,362 --> 00:11:24,951 conducted. 281 00:11:24,951 --> 00:11:27,453 Sometimes we might where the research, 282 00:11:27,453 --> 00:11:30,690 but too much and forget that it is important to engage 283 00:11:30,690 --> 00:11:33,166 the very populations that we are involve in our 284 00:11:33,166 --> 00:11:33,693 research. 285 00:11:33,993 --> 00:11:36,963 So the engagement itself is a good thing. 286 00:11:37,463 --> 00:11:38,331 It's part of being 287 00:11:38,331 --> 00:11:40,386 you might as part of explaining yourself 288 00:11:40,386 --> 00:11:42,235 to whoever you're interacting with. 289 00:11:42,735 --> 00:11:45,748 And then this instrumental value and the instrumental value, the 290 00:11:45,748 --> 00:11:46,172 easiest, 291 00:11:46,172 --> 00:11:48,374 I think, for many researchers to, 292 00:11:48,374 --> 00:11:49,576 to figure it out, 293 00:11:50,343 --> 00:11:54,707 and often is because a, that is a need to undertake a 294 00:11:54,707 --> 00:11:55,448 research 295 00:11:55,448 --> 00:11:59,189 project ethically and therefore consider the acceptability of 296 00:11:59,189 --> 00:11:59,986 the research 297 00:11:59,986 --> 00:12:03,222 procedures, information that could perhaps 298 00:12:03,723 --> 00:12:06,225 feed into the research design and so on. 299 00:12:06,225 --> 00:12:09,495 Consent processes, considering what would be the processes 300 00:12:09,495 --> 00:12:12,031 that would be appropriate to contexts, 301 00:12:12,031 --> 00:12:14,701 but also in health policy and practice. 302 00:12:15,134 --> 00:12:17,616 It also comes up in terms of making sure 303 00:12:17,616 --> 00:12:19,539 that, when policies are being, 304 00:12:20,673 --> 00:12:21,608 formulated, we are 305 00:12:21,608 --> 00:12:24,644 taking account of community views, that, 306 00:12:25,612 --> 00:12:28,881 healthcare providers, research as well. 307 00:12:28,881 --> 00:12:32,018 What in health policy systems research, 308 00:12:32,018 --> 00:12:33,902 the respective for the are responsive 309 00:12:33,902 --> 00:12:35,888 if they are considering health systems 310 00:12:35,888 --> 00:12:37,657 and how to be equitable. 311 00:12:37,657 --> 00:12:40,223 We are considering patient satisfaction 312 00:12:40,223 --> 00:12:42,328 and so on and focus in the next 313 00:12:42,328 --> 00:12:42,895 few slides. 314 00:12:42,895 --> 00:12:45,932 Not so much on health care, but on health research. 315 00:12:47,667 --> 00:12:49,235 Other thing, and this I think also came 316 00:12:49,235 --> 00:12:52,705 in the previous session, is how then what is a community? 317 00:12:52,705 --> 00:12:55,608 And then many 318 00:12:55,608 --> 00:12:57,491 publications on what communities are 319 00:12:57,491 --> 00:12:59,112 and how they might be defined. 320 00:12:59,112 --> 00:12:59,545 Generally. 321 00:12:59,545 --> 00:13:02,195 It is an agreement that community could be 322 00:13:02,195 --> 00:13:04,150 based on where somebody lives, 323 00:13:04,150 --> 00:13:07,513 a geography or which could be inserted by 324 00:13:07,513 --> 00:13:08,087 goals. 325 00:13:08,087 --> 00:13:09,906 It could be by shared experiences, 326 00:13:09,906 --> 00:13:11,991 it could be by disease, by conditions. 327 00:13:11,991 --> 00:13:14,656 And so, the something that is bringing 328 00:13:14,656 --> 00:13:16,129 only people together 329 00:13:16,129 --> 00:13:18,707 into a common area and that is what forms 330 00:13:18,707 --> 00:13:19,399 community. 331 00:13:19,399 --> 00:13:21,768 And these communities could be quite, 332 00:13:22,769 --> 00:13:25,971 the bonds between them could be quite strong or could be very 333 00:13:25,971 --> 00:13:26,339 loose. 334 00:13:26,339 --> 00:13:29,375 They could just come together for a specific function. 335 00:13:29,375 --> 00:13:32,912 And then after everybody goes on their own lives, 336 00:13:33,112 --> 00:13:36,115 or they it could be bounded for long periods of time. 337 00:13:36,315 --> 00:13:38,425 So whenever we think about membership 338 00:13:38,425 --> 00:13:39,452 in the community, 339 00:13:39,752 --> 00:13:41,521 some of which could be by choice, 340 00:13:41,521 --> 00:13:43,985 and often you hear of especially social 341 00:13:43,985 --> 00:13:44,490 groups, 342 00:13:45,325 --> 00:13:47,454 it could be based on income settings, 343 00:13:47,454 --> 00:13:49,929 it could be based on conditions and so on. 344 00:13:50,229 --> 00:13:54,033 But also at the, characteristics that are linked to these. 345 00:13:54,033 --> 00:13:56,362 It could be by age, ethnicity, illness 346 00:13:56,362 --> 00:13:57,036 and so on. 347 00:13:58,037 --> 00:14:01,441 So these are very loose ways of defining community. 348 00:14:01,808 --> 00:14:04,096 And the reason why this is important 349 00:14:04,096 --> 00:14:06,512 is because we always need to reflect. 350 00:14:06,512 --> 00:14:08,090 Whenever you talk about community, 351 00:14:08,090 --> 00:14:09,482 to whom are you referring to? 352 00:14:10,683 --> 00:14:11,250 Because 353 00:14:11,250 --> 00:14:13,940 individuals belong to many different 354 00:14:13,940 --> 00:14:16,556 communities and even for yourself. 355 00:14:16,556 --> 00:14:20,226 If you thought for a moment how many groupings 356 00:14:20,493 --> 00:14:23,227 you call yourself a member, you might find 357 00:14:23,227 --> 00:14:24,464 there are so many, 358 00:14:25,298 --> 00:14:28,201 and that give some kind of check. 359 00:14:28,201 --> 00:14:29,769 When we think of communities, it's 360 00:14:29,769 --> 00:14:32,122 not just one amorphous grouping, even 361 00:14:32,122 --> 00:14:33,139 geographically, 362 00:14:33,740 --> 00:14:36,843 but that the individuals might not always see themselves 363 00:14:37,276 --> 00:14:40,680 as have been defined by others in that community. 364 00:14:40,680 --> 00:14:42,851 So when researchers go and define 365 00:14:42,851 --> 00:14:45,351 a community, individuals who are been 366 00:14:45,351 --> 00:14:47,070 put in that definition of community 367 00:14:47,070 --> 00:14:48,888 might not necessarily see themselves 368 00:14:49,155 --> 00:14:50,490 as part of that community. 369 00:14:50,490 --> 00:14:53,493 It's always important to take note of that. 370 00:14:54,093 --> 00:14:55,862 So accepting this fuzziness 371 00:14:55,862 --> 00:14:58,998 on what a community engagement is 372 00:14:58,998 --> 00:15:02,001 and how do we go ahead and engage 373 00:15:02,001 --> 00:15:04,797 with the communities, let's talk about is not clear 374 00:15:04,797 --> 00:15:05,071 cut. 375 00:15:06,472 --> 00:15:06,773 How do 376 00:15:06,773 --> 00:15:09,876 people engage with them and who speaks on behalf 377 00:15:10,376 --> 00:15:13,379 or represents communities? 378 00:15:14,213 --> 00:15:15,481 But before we do that, 379 00:15:15,481 --> 00:15:17,617 I think we need to reflect a little bit on 380 00:15:17,617 --> 00:15:18,684 what is engagements. 381 00:15:18,684 --> 00:15:20,785 And United Nations and many other 382 00:15:20,785 --> 00:15:23,523 documents have defined what is engagement. 383 00:15:24,824 --> 00:15:27,860 In do and document is it is strategic process 384 00:15:27,860 --> 00:15:29,428 of involving local populations 385 00:15:29,428 --> 00:15:33,299 in all aspects of decision making and implementation, that 386 00:15:33,299 --> 00:15:33,633 it's 387 00:15:33,633 --> 00:15:35,751 one of the broadest definitions of what 388 00:15:35,751 --> 00:15:37,870 you can think of community engagement. 389 00:15:38,304 --> 00:15:41,374 There are other publications that have also further defined 390 00:15:41,374 --> 00:15:43,654 and differentiated between community 391 00:15:43,654 --> 00:15:45,111 and public engagement. 392 00:15:46,112 --> 00:15:48,181 In common, we say 393 00:15:48,181 --> 00:15:50,627 we define public engagement is a process 394 00:15:50,627 --> 00:15:52,585 that provides people with trust 395 00:15:52,585 --> 00:15:54,985 what information and key policy decisions 396 00:15:54,985 --> 00:15:55,688 and receive 397 00:15:55,688 --> 00:15:57,934 their input and integrate it into decision 398 00:15:57,934 --> 00:15:59,325 making and social action, 399 00:16:00,393 --> 00:16:01,861 and then further 400 00:16:01,861 --> 00:16:04,368 distinguish it from community engagement 401 00:16:04,368 --> 00:16:06,499 and say that community engagement 402 00:16:06,499 --> 00:16:09,151 focuses on specific communities involved 403 00:16:09,151 --> 00:16:11,671 in particular research or activities. 404 00:16:12,104 --> 00:16:13,539 I think sometimes it's good 405 00:16:13,539 --> 00:16:16,396 to differentiate these because the mechanisms for how 406 00:16:16,396 --> 00:16:17,043 to mitigate 407 00:16:17,443 --> 00:16:20,613 people, and public food differ. 408 00:16:22,915 --> 00:16:25,918 But what does exactement mean? 409 00:16:26,686 --> 00:16:28,988 From the definition that you see here, 410 00:16:28,988 --> 00:16:32,625 they may not specifically be how you might engage. 411 00:16:32,992 --> 00:16:36,863 And that is where a host from all approaches 412 00:16:36,863 --> 00:16:39,832 of a catchment and comes to form. 413 00:16:39,832 --> 00:16:42,047 And so we say it is a spectrum of ways 414 00:16:42,047 --> 00:16:44,437 of involving or working with each other. 415 00:16:44,871 --> 00:16:47,461 And it can range from information sharing, 416 00:16:47,461 --> 00:16:48,941 from creating awareness 417 00:16:49,375 --> 00:16:51,342 to deeper levels of consultations 418 00:16:51,342 --> 00:16:53,846 to active participation, decision making, 419 00:16:54,146 --> 00:16:57,350 to being involved in the actual implementation of the research. 420 00:16:58,517 --> 00:17:01,821 Nowadays you hear a lot about co-opting 421 00:17:01,821 --> 00:17:05,691 community members into research to be part of the research team. 422 00:17:06,192 --> 00:17:08,694 So there's a whole level of engagement, 423 00:17:09,962 --> 00:17:11,430 full spectrum over settlement. 424 00:17:11,430 --> 00:17:13,550 And so it is not one thing I think this is 425 00:17:13,550 --> 00:17:15,568 really important to think of engagement 426 00:17:15,568 --> 00:17:19,389 as a spectrum of things that needs to be done in all of 427 00:17:19,389 --> 00:17:19,805 them. 428 00:17:19,805 --> 00:17:21,607 We need to consider the setting, 429 00:17:21,607 --> 00:17:25,173 which is the catchment about, and where is it going to be 430 00:17:25,173 --> 00:17:25,611 based? 431 00:17:25,978 --> 00:17:28,881 Is it about activities in a health facility? 432 00:17:28,881 --> 00:17:32,202 Is it about how households ought to be involved in health 433 00:17:32,202 --> 00:17:32,785 research? 434 00:17:33,119 --> 00:17:34,787 Is it about schools? 435 00:17:34,787 --> 00:17:36,622 There's a whole lot of areas. 436 00:17:36,622 --> 00:17:38,795 Also, we need to consider how much 437 00:17:38,795 --> 00:17:39,625 information, 438 00:17:40,760 --> 00:17:43,763 what is the content of big and powerful? 439 00:17:43,996 --> 00:17:46,599 What are the approaches that would suit 440 00:17:46,599 --> 00:17:48,668 the content of the engagement, 441 00:17:49,201 --> 00:17:52,021 which also leads to how much interaction 442 00:17:52,021 --> 00:17:53,572 and the power sharing 443 00:17:54,240 --> 00:17:57,174 is required for the level of engagement 444 00:17:57,174 --> 00:17:58,377 that is needed. 445 00:17:58,778 --> 00:18:01,147 And that's a little bit in the next few slides. 446 00:18:03,516 --> 00:18:05,184 So in thinking about 447 00:18:05,184 --> 00:18:09,188 sample complicated, there are three main areas 448 00:18:09,455 --> 00:18:11,723 that, would take you through the next 449 00:18:11,723 --> 00:18:12,458 few slides. 450 00:18:13,593 --> 00:18:16,562 The first one is a good and a quick 451 00:18:17,830 --> 00:18:21,434 reflection of the previous slide that I talked about the goals 452 00:18:21,901 --> 00:18:23,854 and the approaches and activities 453 00:18:23,854 --> 00:18:25,571 that might meet those goals. 454 00:18:25,771 --> 00:18:29,175 That is, how do you engage and then whom do you engage? 455 00:18:29,408 --> 00:18:33,855 You bring the researcher and then a little bit not, but a 456 00:18:33,855 --> 00:18:34,947 presentation. 457 00:18:35,548 --> 00:18:37,833 So how do we educate the community, 458 00:18:37,833 --> 00:18:38,551 the public 459 00:18:40,453 --> 00:18:42,888 again, remember the good, 460 00:18:42,888 --> 00:18:44,690 the intrinsic and instrumental that. 461 00:18:44,690 --> 00:18:49,161 So it is always really important to have an idea of what you 462 00:18:49,462 --> 00:18:52,465 why do you want to get. 463 00:18:52,932 --> 00:18:56,023 It's touching points because that might determine 464 00:18:56,023 --> 00:18:56,402 whom. 465 00:18:56,402 --> 00:18:58,471 Then you need to engage and how. 466 00:18:58,471 --> 00:19:01,726 Then you need to gauge and therefore the depth of that 467 00:19:01,726 --> 00:19:02,208 action. 468 00:19:04,310 --> 00:19:05,611 And as we are thinking 469 00:19:05,611 --> 00:19:07,605 about this, we normally talk about 470 00:19:07,605 --> 00:19:09,482 a whole spectrum of engagement, 471 00:19:09,482 --> 00:19:13,052 from wide engagement to narrow 472 00:19:13,052 --> 00:19:17,145 and deeper catchment, where why that government is 473 00:19:17,145 --> 00:19:18,290 about getting 474 00:19:18,591 --> 00:19:21,350 the greatest outreach, information 475 00:19:21,350 --> 00:19:22,161 going up. 476 00:19:22,161 --> 00:19:25,164 As many people as possible. 477 00:19:26,999 --> 00:19:28,234 It is therefore likely 478 00:19:28,234 --> 00:19:31,237 to be less participatory, 479 00:19:31,871 --> 00:19:34,874 perhaps less opportunities for direct feedback. 480 00:19:35,775 --> 00:19:40,111 And it often tends to be about raising awareness about your 481 00:19:40,111 --> 00:19:40,846 research, 482 00:19:40,846 --> 00:19:43,916 about the institution, about an activity, 483 00:19:43,916 --> 00:19:46,352 or about health, anything. 484 00:19:46,352 --> 00:19:47,853 So it is likely to reach 485 00:19:47,853 --> 00:19:51,102 as many people as possible, but perhaps with very little 486 00:19:51,102 --> 00:19:51,624 minimum, 487 00:19:52,124 --> 00:19:54,432 either one on one or live or interaction 488 00:19:54,432 --> 00:19:55,528 or feedback loops. 489 00:19:56,495 --> 00:19:59,732 And then it can range all the way to more directed 490 00:19:59,732 --> 00:20:02,735 outreach where it is more participative. 491 00:20:03,335 --> 00:20:05,271 You're getting direct feedback. 492 00:20:05,271 --> 00:20:05,971 Perhaps there's, 493 00:20:08,174 --> 00:20:10,476 several iterations of feedback 494 00:20:10,476 --> 00:20:13,479 and there's opportunities for mutual learning. 495 00:20:14,180 --> 00:20:17,850 And always it's important for us, to, 496 00:20:18,451 --> 00:20:20,920 remember that your judgment is moving 497 00:20:20,920 --> 00:20:23,656 beyond this depth to the brain of reach. 498 00:20:23,656 --> 00:20:26,659 It's not enough simply to reach for the mass, 499 00:20:27,226 --> 00:20:29,862 but also consider, 500 00:20:29,862 --> 00:20:33,001 the value of their judgment, how much feedback you are 501 00:20:33,001 --> 00:20:33,466 getting 502 00:20:33,466 --> 00:20:35,833 and how much you are learning, and perhaps 503 00:20:35,833 --> 00:20:37,636 changing a lot of your research 504 00:20:37,636 --> 00:20:40,694 policies, activities, what you do as a result of 505 00:20:40,694 --> 00:20:41,140 these, 506 00:20:42,007 --> 00:20:45,010 engagement? 507 00:20:45,211 --> 00:20:47,546 Often times not always. 508 00:20:47,546 --> 00:20:50,549 It's advisable to do some formative research, 509 00:20:51,050 --> 00:20:53,819 if that can inform on, 510 00:20:53,819 --> 00:20:56,655 judgment strategy, think about what the goals are, 511 00:20:56,655 --> 00:20:59,104 what activities will take you to where 512 00:20:59,104 --> 00:21:00,392 and how about what? 513 00:21:00,793 --> 00:21:03,028 We found it very useful data. 514 00:21:03,028 --> 00:21:05,798 Video was part of our formative work, 515 00:21:05,798 --> 00:21:08,797 and we have since this was way back in 2000, we 516 00:21:08,797 --> 00:21:09,435 published 517 00:21:09,435 --> 00:21:11,816 quite a lot on what we are doing then 518 00:21:11,816 --> 00:21:13,939 and in setting up the catchment. 519 00:21:14,306 --> 00:21:17,914 And generally there was positive descriptions of Cambridge from 520 00:21:17,914 --> 00:21:18,544 that video 521 00:21:18,978 --> 00:21:21,119 and little understanding of reason, 522 00:21:21,119 --> 00:21:23,382 and that really helped us figure out 523 00:21:23,382 --> 00:21:24,917 several things. One is 524 00:21:25,951 --> 00:21:26,886 not simply 525 00:21:26,886 --> 00:21:29,812 creating a program where we educate people 526 00:21:29,812 --> 00:21:31,624 because we knew that was, 527 00:21:32,358 --> 00:21:35,361 a knowledge deficit model, which doesn't go far, 528 00:21:35,895 --> 00:21:38,515 but rather think about how we are interacting with the 529 00:21:38,515 --> 00:21:39,098 communities 530 00:21:39,098 --> 00:21:41,361 and whether we are part of community 531 00:21:41,361 --> 00:21:43,435 or we are being seen as separate 532 00:21:43,435 --> 00:21:48,340 for community and create of, opportunities and fora 533 00:21:48,574 --> 00:21:51,432 where we become part of the community 534 00:21:51,432 --> 00:21:54,213 and even as a part of the community 535 00:21:54,213 --> 00:21:57,530 that accompanies that, I would, number, 536 00:21:57,530 --> 00:21:58,551 I think of, 537 00:21:59,618 --> 00:22:03,155 60% of our staff come from within the community. 538 00:22:03,155 --> 00:22:05,090 But the moment, 539 00:22:05,090 --> 00:22:08,194 they are employed by the institution, 540 00:22:08,194 --> 00:22:10,429 there's a difference in how 541 00:22:10,429 --> 00:22:13,241 they are viewed by the community and also how they view the 542 00:22:13,241 --> 00:22:13,766 community. 543 00:22:15,301 --> 00:22:17,436 So some of the goals of commitment 544 00:22:17,436 --> 00:22:21,574 and what I'll be doing next, slide talk about at home 545 00:22:22,208 --> 00:22:25,010 and then suggest some of the populations 546 00:22:25,010 --> 00:22:27,813 or communities that could be considered 547 00:22:28,214 --> 00:22:31,584 and some of the activities and what that is, is why does it 548 00:22:33,252 --> 00:22:33,786 so some 549 00:22:33,786 --> 00:22:36,958 of the goals of engagement could be about creating 550 00:22:36,958 --> 00:22:37,656 awareness, 551 00:22:37,656 --> 00:22:40,172 about a program, about a research study 552 00:22:40,172 --> 00:22:41,527 about institutional. 553 00:22:41,860 --> 00:22:44,641 It's purely providing information, 554 00:22:44,641 --> 00:22:46,031 for populations. 555 00:22:46,932 --> 00:22:49,635 And so, the target 556 00:22:49,635 --> 00:22:52,104 or the community could be the general community 557 00:22:52,104 --> 00:22:55,107 or the population where you would be recruiting. 558 00:22:55,374 --> 00:22:57,536 The participants from or the public, 559 00:22:57,536 --> 00:22:58,377 depending on, 560 00:22:59,178 --> 00:23:01,580 what the messages 561 00:23:01,580 --> 00:23:03,749 and the activities again, vary 562 00:23:03,749 --> 00:23:06,652 according to geo geographic zones. 563 00:23:06,652 --> 00:23:09,755 I'm sure the activities that would be done in U.S, 564 00:23:09,755 --> 00:23:11,957 that would be done in Europe, that would be done 565 00:23:11,957 --> 00:23:14,793 even in some parts of Africa would be quite different. 566 00:23:14,793 --> 00:23:16,580 These are just some of the things 567 00:23:16,580 --> 00:23:18,097 that people might consider, 568 00:23:18,631 --> 00:23:20,611 having public meetings in community 569 00:23:20,611 --> 00:23:22,534 where that is really appreciated, 570 00:23:22,801 --> 00:23:26,305 having, town hall meetings where that is really appreciated 571 00:23:26,672 --> 00:23:29,508 in many of our communities will be a place 572 00:23:29,508 --> 00:23:32,478 they really value coming to that we call them borough. 573 00:23:32,478 --> 00:23:35,180 That's coming together and having a day 574 00:23:35,180 --> 00:23:37,883 where, researchers present their work, 575 00:23:38,117 --> 00:23:42,221 healthcare, staff come and talk about health, 576 00:23:42,221 --> 00:23:44,416 you know, health information, that 577 00:23:44,416 --> 00:23:47,192 administratively does come and talk about, 578 00:23:48,127 --> 00:23:49,495 government policies and so on. 579 00:23:49,495 --> 00:23:52,698 So that is a normal practice that is done in the community. 580 00:23:53,032 --> 00:23:56,498 And researchers could build on that to talk about specific 581 00:23:56,498 --> 00:23:57,036 research 582 00:23:57,670 --> 00:24:00,000 areas or specific programs of work 583 00:24:00,000 --> 00:24:02,741 prep your program open days up and days 584 00:24:02,741 --> 00:24:04,913 is where communities could come to the 585 00:24:04,913 --> 00:24:07,313 research institution and open up the door 586 00:24:07,313 --> 00:24:09,928 so that they get to know what happens in 587 00:24:09,928 --> 00:24:10,582 research. 588 00:24:11,050 --> 00:24:13,952 Exhibitions are also quite, 589 00:24:13,952 --> 00:24:15,120 common. 590 00:24:15,120 --> 00:24:17,690 We have what we call a magnet theater. 591 00:24:17,690 --> 00:24:18,891 It's well published. 592 00:24:18,891 --> 00:24:19,992 Please read on it. 593 00:24:19,992 --> 00:24:22,995 It's a very attractive way of putting, 594 00:24:23,662 --> 00:24:24,797 clubs together. 595 00:24:24,797 --> 00:24:26,792 And they they contribute to their 596 00:24:26,792 --> 00:24:27,700 conversations. 597 00:24:27,700 --> 00:24:30,803 What we found really useful is to have 598 00:24:30,803 --> 00:24:34,006 very simple, clear messages, not too much information. 599 00:24:34,273 --> 00:24:37,443 So if you want to speak about a specific study, 600 00:24:37,710 --> 00:24:41,118 you cannot go in as much detail as you often do when you're 601 00:24:41,118 --> 00:24:41,580 giving. 602 00:24:41,580 --> 00:24:43,849 Consider when you are seeking closing. 603 00:24:43,849 --> 00:24:45,915 What we found and we've documented 604 00:24:45,915 --> 00:24:47,252 these is very simple. 605 00:24:47,486 --> 00:24:51,957 Clearly cities that to emphasize too much information, people 606 00:24:52,224 --> 00:24:55,312 zone in and out of, you know, the activity 607 00:24:55,312 --> 00:24:56,929 and the conversation. 608 00:24:57,162 --> 00:24:59,713 And so these, linking of information 609 00:24:59,713 --> 00:25:02,334 and sometimes that can be understood 610 00:25:02,334 --> 00:25:04,561 quite differently from what you initially 611 00:25:04,561 --> 00:25:05,104 intended. 612 00:25:06,405 --> 00:25:09,074 And because there is very minimal, 613 00:25:09,074 --> 00:25:12,465 opportunity for interaction, there's less one on one 614 00:25:12,465 --> 00:25:13,379 interactions. 615 00:25:13,645 --> 00:25:16,415 We call this part of the wider engagement. 616 00:25:16,415 --> 00:25:19,418 And then you might, we want you to seek support 617 00:25:19,418 --> 00:25:21,476 from important, community leaders, 618 00:25:21,476 --> 00:25:23,655 committed gatekeepers for research. 619 00:25:23,989 --> 00:25:25,557 That program of work. 620 00:25:25,557 --> 00:25:27,211 And then you have to think carefully 621 00:25:27,211 --> 00:25:28,360 who are the gatekeepers, 622 00:25:28,360 --> 00:25:32,097 who are whose opinions matter on whether or not, 623 00:25:33,699 --> 00:25:37,336 my work will be accepted, whose views would 624 00:25:37,536 --> 00:25:40,259 perhaps influence whether or not communities 625 00:25:40,259 --> 00:25:40,939 accept me. 626 00:25:41,440 --> 00:25:44,443 Because it's the government. 627 00:25:45,210 --> 00:25:47,446 Process of entering into our community. 628 00:25:47,446 --> 00:25:48,947 In our case, 629 00:25:48,947 --> 00:25:50,892 we have provincial administration 630 00:25:50,892 --> 00:25:52,718 who are very, key gatekeepers. 631 00:25:53,385 --> 00:25:56,216 They also have, groups and committees 632 00:25:56,216 --> 00:25:57,823 that they meet with. 633 00:25:58,457 --> 00:26:01,627 If it is within a hospital set up, 634 00:26:01,627 --> 00:26:04,122 you might want to consider took you to the Minister of 635 00:26:04,122 --> 00:26:04,630 Health to, 636 00:26:05,230 --> 00:26:08,233 if your project involves policymakers, 637 00:26:08,434 --> 00:26:11,303 you might want to consider, talking to them. 638 00:26:12,337 --> 00:26:12,871 Right from 639 00:26:12,871 --> 00:26:15,399 national level, all the way to the local 640 00:26:15,399 --> 00:26:15,841 level. 641 00:26:15,841 --> 00:26:18,844 We have special groups, like at the, 642 00:26:19,545 --> 00:26:21,939 primary care level, we have what we call 643 00:26:21,939 --> 00:26:23,315 dispensary committees. 644 00:26:23,582 --> 00:26:25,280 And these are really the gatekeepers 645 00:26:25,280 --> 00:26:27,119 for any activities that are happening. 646 00:26:27,419 --> 00:26:28,921 They promote accountable. 647 00:26:28,921 --> 00:26:32,801 And so those would be important, gatekeepers often activities 648 00:26:32,801 --> 00:26:33,692 would involve 649 00:26:33,692 --> 00:26:36,212 a lot of meetings, workshops, reports, 650 00:26:36,212 --> 00:26:38,864 emails, conversations, calls and so on. 651 00:26:39,131 --> 00:26:42,905 This is likely to be deeper, but depends very much on the 652 00:26:42,905 --> 00:26:43,368 extent 653 00:26:43,368 --> 00:26:45,991 to which their decision has got an influence on the 654 00:26:45,991 --> 00:26:46,505 activity. 655 00:26:47,673 --> 00:26:50,676 There are things that you cannot really continue until you get, 656 00:26:51,076 --> 00:26:53,745 formal. 657 00:26:53,745 --> 00:26:55,080 Formal permission. 658 00:26:55,080 --> 00:26:57,755 And so the get skipping kit can be a little bit tricky 659 00:26:57,755 --> 00:26:58,250 sometimes 660 00:26:59,418 --> 00:27:02,421 when, when you have gotten, approval, 661 00:27:04,256 --> 00:27:07,426 the third floor is where you are actively 662 00:27:07,426 --> 00:27:10,678 seeking opinions, views to feed into your research 663 00:27:10,678 --> 00:27:11,263 project. 664 00:27:11,263 --> 00:27:12,865 And this could be about procedures. 665 00:27:12,865 --> 00:27:14,466 It could be about the research this time. 666 00:27:14,466 --> 00:27:15,667 It could be about how this study 667 00:27:15,667 --> 00:27:18,211 is going to be accepted in the community, 668 00:27:18,211 --> 00:27:19,638 the consent processes. 669 00:27:20,105 --> 00:27:22,792 And here you are likely, therefore, to consider a smaller 670 00:27:22,792 --> 00:27:23,075 group 671 00:27:23,075 --> 00:27:25,177 so you can have deeper conversations. 672 00:27:25,177 --> 00:27:28,180 You can actually get and solicit feedback. 673 00:27:28,647 --> 00:27:31,683 And perhaps you might have repeat meetings. 674 00:27:32,718 --> 00:27:33,519 Either with the, 675 00:27:33,519 --> 00:27:35,958 with the, with the potential population, 676 00:27:35,958 --> 00:27:37,422 if it's own conditions, 677 00:27:37,422 --> 00:27:39,392 you might want to consider patients 678 00:27:39,392 --> 00:27:41,193 or those with lived conditions. 679 00:27:42,628 --> 00:27:45,105 Often it might involve participatory 680 00:27:45,105 --> 00:27:45,931 activities, 681 00:27:46,231 --> 00:27:50,102 depending on how much feedback you are soliciting. 682 00:27:51,837 --> 00:27:54,473 And sometimes it might consider 683 00:27:54,473 --> 00:27:57,248 that you might consider deliberative consultations or 684 00:27:57,248 --> 00:27:57,876 engagements 685 00:27:58,143 --> 00:28:01,726 where you want decision points to be made on whether to proceed 686 00:28:01,726 --> 00:28:02,180 or not. 687 00:28:03,649 --> 00:28:05,984 This obviously will have a deeper level of 688 00:28:05,984 --> 00:28:06,652 engagement. 689 00:28:06,885 --> 00:28:10,122 It can range from moderate, to deeper. 690 00:28:10,455 --> 00:28:13,669 And what I provide there is an example of some of 691 00:28:13,669 --> 00:28:14,259 the ways 692 00:28:14,259 --> 00:28:16,261 in which we are doing this. 693 00:28:16,261 --> 00:28:18,049 These are groups that we work with 694 00:28:18,049 --> 00:28:19,731 very closely called the company 695 00:28:19,731 --> 00:28:22,642 communities representatives that are elected by community 696 00:28:22,642 --> 00:28:23,101 members. 697 00:28:23,535 --> 00:28:25,470 And we work with them. 698 00:28:25,470 --> 00:28:29,675 Well, we need deeper input about specific studies. 699 00:28:30,008 --> 00:28:33,680 Well, we are actively, soliciting feedback on our 700 00:28:33,680 --> 00:28:34,580 procedures. 701 00:28:34,980 --> 00:28:38,884 The reason why this is the case is because the they would have 702 00:28:39,952 --> 00:28:42,403 had an exposure of what health research 703 00:28:42,403 --> 00:28:42,654 is. 704 00:28:42,654 --> 00:28:45,691 They perhaps have got a better understanding of what, 705 00:28:46,558 --> 00:28:48,814 research procedures and health care, 706 00:28:48,814 --> 00:28:51,196 clinical care or clinical procedures, 707 00:28:51,964 --> 00:28:54,967 and therefore could advise 708 00:28:55,200 --> 00:28:58,219 on what might be appropriate and what might not be 709 00:28:58,219 --> 00:28:59,004 appropriate. 710 00:28:59,738 --> 00:29:02,941 Again, all the time we need to consider 711 00:29:02,941 --> 00:29:05,077 diversity and inclusivity 712 00:29:05,077 --> 00:29:07,792 and that we are not only engaging those 713 00:29:07,792 --> 00:29:10,716 who are leaders, but also, seeking, those 714 00:29:10,716 --> 00:29:13,174 might otherwise not have the opportunity 715 00:29:13,174 --> 00:29:15,387 to contribute to their discussions. 716 00:29:16,088 --> 00:29:17,917 These are far too reach for those 717 00:29:17,917 --> 00:29:19,358 who could be marginalized 718 00:29:19,358 --> 00:29:22,361 by one reason or the other. 719 00:29:22,628 --> 00:29:24,830 And then these, these 720 00:29:24,830 --> 00:29:27,446 we I put it because sometimes we can get 721 00:29:27,446 --> 00:29:28,100 feedback, 722 00:29:29,267 --> 00:29:31,236 and not consider 723 00:29:31,236 --> 00:29:35,273 one, providing an account of how that feedback 724 00:29:35,273 --> 00:29:39,144 has transformed the research that which you are consulting 725 00:29:39,144 --> 00:29:39,611 about. 726 00:29:40,112 --> 00:29:42,748 And, and nowadays, 727 00:29:42,748 --> 00:29:45,111 many funders are making it a requirement 728 00:29:45,111 --> 00:29:46,351 that the like to see 729 00:29:46,818 --> 00:29:49,828 how your project has been transformed is a result of 730 00:29:49,828 --> 00:29:50,522 engagement. 731 00:29:51,289 --> 00:29:54,726 And they would like to see how you inform the communities 732 00:29:55,027 --> 00:29:58,030 the changes that have happened as a result of the engagement. 733 00:29:58,363 --> 00:30:01,900 So this is one way of really being proactive in making sure 734 00:30:01,900 --> 00:30:05,070 that we are paying attention to community voices and views, 735 00:30:05,337 --> 00:30:08,073 and we are taking them on board, and we are transforming the work 736 00:30:08,073 --> 00:30:09,274 that we are doing. 737 00:30:09,274 --> 00:30:12,511 And often these would involve smaller groups of people. 738 00:30:12,811 --> 00:30:16,381 When we are listening and wanting to provide feedback, 739 00:30:16,748 --> 00:30:18,817 sometimes it could be even with 740 00:30:19,785 --> 00:30:21,520 initial consultations we've 741 00:30:21,520 --> 00:30:24,880 got with with research staff who are coming from the 742 00:30:24,880 --> 00:30:25,590 community, 743 00:30:27,025 --> 00:30:29,094 who could provide early feedback 744 00:30:29,094 --> 00:30:31,281 before you then proceed to, to engage 745 00:30:31,281 --> 00:30:32,464 with the community. 746 00:30:32,464 --> 00:30:35,467 I found it very useful, especially if, 747 00:30:36,668 --> 00:30:39,771 the topic of conversation one is complex to 748 00:30:39,771 --> 00:30:44,142 is very morally, socially, ethically complex. 749 00:30:44,976 --> 00:30:47,239 And you want to start getting ideas of 750 00:30:47,239 --> 00:30:49,681 how might community receive my research? 751 00:30:50,115 --> 00:30:53,118 What are some of the areas I need to be aware of? 752 00:30:53,118 --> 00:30:55,187 How do I, 753 00:30:55,187 --> 00:30:57,956 frame some questions that I want to ask? 754 00:30:57,956 --> 00:31:00,845 What are sensitive words that I cannot use in the 755 00:31:00,845 --> 00:31:01,493 community? 756 00:31:01,827 --> 00:31:04,136 Sometimes you might want to talk to people 757 00:31:04,136 --> 00:31:05,731 who workers who are excluded 758 00:31:05,731 --> 00:31:07,868 from the population, community engagement 759 00:31:07,868 --> 00:31:09,901 staff who do have a deep understanding 760 00:31:09,901 --> 00:31:12,086 about that, or even previous research 761 00:31:12,086 --> 00:31:14,506 participants who are featured in studies 762 00:31:14,506 --> 00:31:15,474 because they have a 763 00:31:15,474 --> 00:31:17,968 and some understanding of what is involved in research 764 00:31:17,968 --> 00:31:18,477 and so on. 765 00:31:19,010 --> 00:31:20,679 Often this is quite in-depth. 766 00:31:22,013 --> 00:31:23,582 Investment. 767 00:31:23,582 --> 00:31:26,685 And we should always be careful when it comes to feedback 768 00:31:26,685 --> 00:31:30,822 of research results that by filling back, 769 00:31:31,156 --> 00:31:35,994 while it is desirable and ethically appropriate that 770 00:31:35,994 --> 00:31:38,633 we are not inadvertently also exposing 771 00:31:38,633 --> 00:31:41,133 those who participated in research. 772 00:31:42,267 --> 00:31:45,103 So when we found it, 773 00:31:45,103 --> 00:31:48,106 when people, for example, some of the research on HIV, 774 00:31:48,540 --> 00:31:51,977 on HIV research, we found and, 775 00:31:51,977 --> 00:31:54,189 and more recently on mental health, 776 00:31:54,189 --> 00:31:56,782 we found that we have to be very careful 777 00:31:56,782 --> 00:31:59,982 what kind of information goes to the participants and 778 00:31:59,982 --> 00:32:00,585 what kind 779 00:32:00,585 --> 00:32:02,631 of feedback goes to the general population 780 00:32:02,631 --> 00:32:04,189 where the participants improve. 781 00:32:04,623 --> 00:32:06,342 And so we need to be very careful 782 00:32:06,342 --> 00:32:07,592 where there is feedback 783 00:32:07,592 --> 00:32:10,046 that we are not inadvertently exposing 784 00:32:10,046 --> 00:32:10,562 others. 785 00:32:11,329 --> 00:32:13,408 And finally, this is the last group 786 00:32:13,408 --> 00:32:14,833 that I'm talking about. 787 00:32:15,100 --> 00:32:18,170 It's a lot of attention on co-production of research. 788 00:32:18,170 --> 00:32:20,138 But what does that look like? 789 00:32:20,138 --> 00:32:23,675 And is, research produced and, 790 00:32:23,909 --> 00:32:27,512 examples of where co-production could be considered is where, 791 00:32:28,180 --> 00:32:30,718 these direct implication of the research 792 00:32:30,718 --> 00:32:32,050 to the participants. 793 00:32:32,050 --> 00:32:34,771 It often involves and, and participatory 794 00:32:34,771 --> 00:32:35,587 approaches, 795 00:32:36,288 --> 00:32:39,942 including community based better approaches, option 796 00:32:39,942 --> 00:32:40,659 research, 797 00:32:41,059 --> 00:32:44,062 some of the ways in which communities can be more 798 00:32:44,296 --> 00:32:46,775 actively be involved in the research 799 00:32:46,775 --> 00:32:47,532 ecosystem. 800 00:32:48,466 --> 00:32:48,900 These are 801 00:32:51,603 --> 00:32:55,006 array of community based approaches. 802 00:32:55,607 --> 00:32:58,109 You can read up on them the key features, 803 00:32:58,109 --> 00:32:59,878 that are usually the subject 804 00:32:59,878 --> 00:33:02,689 or the subject of research, become active 805 00:33:02,689 --> 00:33:04,883 researcher and agents of change 806 00:33:05,450 --> 00:33:08,420 and then involved in developing, implementing, 807 00:33:08,420 --> 00:33:10,422 reflecting as part of the research 808 00:33:10,422 --> 00:33:12,424 and knowledge innovation process. 809 00:33:12,691 --> 00:33:14,492 So they are part of the team. 810 00:33:14,492 --> 00:33:18,257 They are still, not researchers but see or they could be 811 00:33:18,257 --> 00:33:19,130 researchers. 812 00:33:19,965 --> 00:33:23,668 But the bring in and the the part of 813 00:33:25,237 --> 00:33:26,771 they bring the views of the community 814 00:33:26,771 --> 00:33:30,141 and be a part of the change that is likely to be happening. 815 00:33:30,408 --> 00:33:33,511 And some documentation is coming through this a more 816 00:33:33,511 --> 00:33:37,197 that we can learn from, the NGO world when it comes to 817 00:33:37,197 --> 00:33:38,016 development 818 00:33:38,016 --> 00:33:41,019 on how communities can be involved 819 00:33:41,453 --> 00:33:44,456 in change processes. 820 00:33:44,723 --> 00:33:46,591 We have this participatory approach. 821 00:33:46,591 --> 00:33:49,561 This we call it the highest level of engagement, 822 00:33:49,794 --> 00:33:53,119 because the sharing of roles of responsibilities and of 823 00:33:53,119 --> 00:33:53,965 deliverables, 824 00:33:54,733 --> 00:33:58,103 depending on how it is set up, which could be very empowering. 825 00:33:59,571 --> 00:34:00,272 It could 826 00:34:00,272 --> 00:34:02,987 lead to communities taking up change 827 00:34:02,987 --> 00:34:05,477 and implementing and influencing 828 00:34:05,477 --> 00:34:08,880 relevant policies and changes that need to be done. 829 00:34:10,282 --> 00:34:13,051 That is one of the case books that I've shown here 830 00:34:13,051 --> 00:34:16,388 on participatory action research and health, systems. 831 00:34:16,388 --> 00:34:20,225 And it's got an array of methods that one could, drop. 832 00:34:22,627 --> 00:34:24,162 I suppose you could say 833 00:34:24,162 --> 00:34:27,332 just had numbers of private gateman calls at bingo, 834 00:34:27,332 --> 00:34:30,302 but perhaps there are many more that you could think of. 835 00:34:31,336 --> 00:34:33,271 And feel free to add that. 836 00:34:33,271 --> 00:34:35,073 So let's 837 00:34:35,073 --> 00:34:37,383 in the next few slides and talk a little bit about 838 00:34:37,383 --> 00:34:38,076 power sharing. 839 00:34:39,844 --> 00:34:41,379 And again, 840 00:34:41,379 --> 00:34:44,349 we see engagement must be more than a one way. 841 00:34:44,349 --> 00:34:47,352 It must be more than simply speaking to people. 842 00:34:47,619 --> 00:34:50,922 It has to have mutuality need 843 00:34:50,922 --> 00:34:53,825 of learning, of listening or feedback. 844 00:34:53,825 --> 00:34:55,944 It's not enough to simply collect 845 00:34:55,944 --> 00:34:57,228 information and go. 846 00:34:57,729 --> 00:34:59,598 And nobody knows what you do. That, 847 00:35:01,132 --> 00:35:02,300 this ladder of 848 00:35:02,300 --> 00:35:06,237 citizen participation is widely used in engagement to get a 849 00:35:06,237 --> 00:35:06,838 critique 850 00:35:06,838 --> 00:35:08,735 of what is happening with engagement 851 00:35:08,735 --> 00:35:09,841 and where we are at, 852 00:35:10,742 --> 00:35:12,962 recognizing that it was developed 853 00:35:12,962 --> 00:35:14,913 many years ago, decades ago, 854 00:35:15,580 --> 00:35:18,783 within a very specific context on social projects. 855 00:35:18,783 --> 00:35:21,374 But still quite applicable to research 856 00:35:21,374 --> 00:35:23,488 and to many other disciplines. 857 00:35:24,723 --> 00:35:26,958 And within it's, unstable. 858 00:35:26,958 --> 00:35:30,228 But the levels of our judgment information, 859 00:35:30,495 --> 00:35:33,498 which is widely relation in which, 860 00:35:33,832 --> 00:35:36,835 this is in the context of social projects, 861 00:35:37,402 --> 00:35:40,294 and about governments delivering information for use 862 00:35:40,294 --> 00:35:40,905 by citizen 863 00:35:40,905 --> 00:35:43,568 consultation, which tends to be two way 864 00:35:43,568 --> 00:35:45,343 and active participation, 865 00:35:46,144 --> 00:35:48,446 which is based on partnership 866 00:35:48,446 --> 00:35:50,514 and which citizens actively engage 867 00:35:50,514 --> 00:35:52,217 in the policymaking process 868 00:35:52,817 --> 00:35:55,569 and the commons is the role of of citizens 869 00:35:55,569 --> 00:35:56,421 in proposing 870 00:35:57,022 --> 00:35:59,624 policy options and shaping the policy dialog. 871 00:35:59,624 --> 00:36:01,893 You could change this due to research. 872 00:36:01,893 --> 00:36:06,131 And like I said, Colin, provided a nice typology. 873 00:36:06,431 --> 00:36:09,667 Gennaro also provided a nice typology 874 00:36:09,667 --> 00:36:12,603 of public engagement mechanisms to serve some purpose that you 875 00:36:12,603 --> 00:36:13,171 could read. 876 00:36:14,305 --> 00:36:16,841 Matthew, what I think is happening 877 00:36:16,841 --> 00:36:20,450 within other research and the five goals, just talk 878 00:36:20,450 --> 00:36:20,945 about, 879 00:36:22,480 --> 00:36:25,517 we need to be very careful at the lower ladder. 880 00:36:25,817 --> 00:36:27,650 Our catchment is not about therapy 881 00:36:27,650 --> 00:36:28,620 and manipulation. 882 00:36:28,620 --> 00:36:30,415 And they do describe what that happened 883 00:36:30,415 --> 00:36:31,289 in many condition. 884 00:36:31,289 --> 00:36:34,225 Is that about but that 885 00:36:34,225 --> 00:36:37,062 region in that at some point at the lowest level, 886 00:36:37,062 --> 00:36:38,847 all that we are doing is informing, 887 00:36:38,847 --> 00:36:40,632 but then we can go all the way up. 888 00:36:41,066 --> 00:36:44,199 What I've realized so far, most of our investment 889 00:36:44,199 --> 00:36:44,903 activities 890 00:36:44,903 --> 00:36:48,373 hardly ever get dedicated public citizen control. 891 00:36:48,773 --> 00:36:51,776 Many of them end up at partnership. 892 00:36:51,976 --> 00:36:55,694 These potential, for example, for community based certain 893 00:36:55,694 --> 00:36:56,281 research 894 00:36:56,281 --> 00:36:59,717 to lead up to delegated power, citizen control. 895 00:37:00,151 --> 00:37:01,953 Perhaps there's some examples of that. 896 00:37:01,953 --> 00:37:04,322 If there are not that many in research, 897 00:37:04,322 --> 00:37:08,026 there are many in development, not so much in health research. 898 00:37:08,326 --> 00:37:10,428 That is something perhaps to improve. 899 00:37:10,428 --> 00:37:13,898 And the current focus on co-production of research, 900 00:37:13,898 --> 00:37:17,869 perhaps, is aiming to shift the power dynamics. 901 00:37:18,603 --> 00:37:20,339 There are some arguments on whether 902 00:37:20,339 --> 00:37:22,173 that is a good thing or a bad thing. 903 00:37:23,074 --> 00:37:24,209 These are middle ground. 904 00:37:24,209 --> 00:37:27,812 I think many of us, advocate for more middle ground. 905 00:37:28,913 --> 00:37:29,614 And what I've 906 00:37:29,614 --> 00:37:31,978 just listed there is some of the ways 907 00:37:31,978 --> 00:37:32,617 in which, 908 00:37:32,617 --> 00:37:35,620 a summary of what I've just talked about, 909 00:37:36,387 --> 00:37:39,372 going through all the segment approaches 910 00:37:39,372 --> 00:37:40,492 and the goals. 911 00:37:40,492 --> 00:37:43,939 But what becomes very clear is that it's 912 00:37:43,939 --> 00:37:45,663 not it's not likely 913 00:37:45,663 --> 00:37:48,800 to be that it is one engagement activity 914 00:37:48,800 --> 00:37:51,870 that covers all areas. 915 00:37:51,870 --> 00:37:53,905 Instead, 916 00:37:53,905 --> 00:37:55,640 many times you'll end up engaging 917 00:37:55,640 --> 00:37:59,043 multiple communities using different approaches. 918 00:37:59,310 --> 00:38:02,313 You might have various goals for each of those. 919 00:38:02,514 --> 00:38:06,317 And so engagement is not one thing. 920 00:38:06,317 --> 00:38:07,852 That is all. 921 00:38:07,852 --> 00:38:11,089 Can you need to consider all these multiple areas 922 00:38:11,089 --> 00:38:12,991 that can define what you are doing. 923 00:38:12,991 --> 00:38:14,771 You engage when someone says, I'm 924 00:38:14,771 --> 00:38:16,928 getting communities, I never understand 925 00:38:16,928 --> 00:38:17,896 thanks to this. 926 00:38:17,896 --> 00:38:20,121 But when you say I'm engaged, but this is 927 00:38:20,121 --> 00:38:22,400 what I'm doing, this is why I'm doing it. 928 00:38:22,400 --> 00:38:24,702 This is, am I getting it? 929 00:38:24,702 --> 00:38:26,851 In fact, makes a better understanding 930 00:38:26,851 --> 00:38:27,839 of what exactly? 931 00:38:27,839 --> 00:38:30,875 But you're getting communities and stakeholders 932 00:38:30,875 --> 00:38:33,278 in in our program, 933 00:38:33,278 --> 00:38:37,025 we have had a whole, array of activities 934 00:38:37,025 --> 00:38:38,149 that we do. 935 00:38:38,149 --> 00:38:39,350 No engagement. 936 00:38:39,350 --> 00:38:41,953 We are getting communities, we are getting schools. 937 00:38:41,953 --> 00:38:45,519 We are getting all staff, stakeholders, policymakers, 938 00:38:45,519 --> 00:38:45,990 media. 939 00:38:45,990 --> 00:38:47,635 There's a whole array of engagement 940 00:38:47,635 --> 00:38:49,327 that are going on at the same time. 941 00:38:49,794 --> 00:38:52,779 And in all of them, we try to think, 942 00:38:52,779 --> 00:38:55,433 why are we engaging this group? 943 00:38:55,433 --> 00:38:58,436 What is the end product? 944 00:38:58,670 --> 00:39:01,439 And the goals really help us, 945 00:39:01,439 --> 00:39:04,142 figure out who is it actually including? 946 00:39:04,142 --> 00:39:05,376 Who are the immediate people 947 00:39:05,376 --> 00:39:07,073 we need to include, who are tools 948 00:39:07,073 --> 00:39:08,513 that would wish to include. 949 00:39:08,513 --> 00:39:10,467 But perhaps limitation of resources 950 00:39:10,467 --> 00:39:11,416 might not allow. 951 00:39:11,416 --> 00:39:14,652 Over time, it becomes a very useful way 952 00:39:14,652 --> 00:39:17,755 of mapping legitimate strategy. 953 00:39:17,755 --> 00:39:20,225 And in order to compromise, 954 00:39:20,225 --> 00:39:22,662 relationship building is absolutely 955 00:39:22,662 --> 00:39:23,428 important. 956 00:39:24,395 --> 00:39:27,699 We aim to achieve all we aim for equity. 957 00:39:27,699 --> 00:39:31,236 But we do recognize these, obviously not very easy. 958 00:39:31,836 --> 00:39:35,340 And the equity could be in terms of representation. 959 00:39:35,707 --> 00:39:39,282 Equity could also be in terms of the freedom by which people 960 00:39:39,282 --> 00:39:39,877 feel free 961 00:39:40,411 --> 00:39:43,214 to want to voice their opinions, 962 00:39:43,214 --> 00:39:46,217 and they are listened and attended to. 963 00:39:47,218 --> 00:39:49,120 But that is an engagement. 964 00:39:49,120 --> 00:39:51,600 Oftentimes we end up not being able to 965 00:39:51,600 --> 00:39:52,056 engage 966 00:39:52,056 --> 00:39:54,503 everybody in the community where we are 967 00:39:54,503 --> 00:39:56,761 based in Kilifi, our catchment area 968 00:39:56,761 --> 00:39:58,980 of communities, 300,000 people, there's 969 00:39:58,980 --> 00:40:01,199 no way we could ever reach all of them 970 00:40:01,199 --> 00:40:02,433 within one time. 971 00:40:02,433 --> 00:40:04,525 And so we have to think about community 972 00:40:04,525 --> 00:40:05,436 representatives. 973 00:40:05,837 --> 00:40:08,673 That is those whom we need to, 974 00:40:08,673 --> 00:40:11,467 to engage with more regularly and in thinking about 975 00:40:11,467 --> 00:40:12,343 representation. 976 00:40:12,844 --> 00:40:16,425 These, we, we think about those who speak 977 00:40:16,425 --> 00:40:18,783 on behalf of our community 978 00:40:19,917 --> 00:40:20,551 or those 979 00:40:20,551 --> 00:40:22,531 that we are we think they are 980 00:40:22,531 --> 00:40:23,554 representative 981 00:40:23,554 --> 00:40:26,732 because they have very similar characteristics to the 982 00:40:26,732 --> 00:40:27,392 community. 983 00:40:27,692 --> 00:40:31,012 And therefore, the views they bring are likely to be 984 00:40:31,012 --> 00:40:31,396 those 985 00:40:31,396 --> 00:40:34,399 that we are likely to get from the community. 986 00:40:35,466 --> 00:40:38,503 I have no, 987 00:40:38,503 --> 00:40:40,705 inference for either you, 988 00:40:40,705 --> 00:40:43,403 anyone doing a judgment and wanting to involve 989 00:40:43,403 --> 00:40:44,342 representatives 990 00:40:44,342 --> 00:40:47,912 have got to work out what is appropriate for them 991 00:40:49,080 --> 00:40:52,250 or what is appropriate for that community. 992 00:40:52,250 --> 00:40:55,975 In our case, a quick reflection on our past 993 00:40:55,975 --> 00:40:56,754 history. 994 00:40:57,221 --> 00:41:02,126 We initially elected black to the community leaders 995 00:41:02,126 --> 00:41:05,501 thinking tools would be to speak on behalf of community, and 996 00:41:05,501 --> 00:41:06,064 therefore 997 00:41:06,064 --> 00:41:07,592 they would be accepted in the community, 998 00:41:07,592 --> 00:41:08,166 and therefore, 999 00:41:08,166 --> 00:41:10,935 they could give us a community opinion. 1000 00:41:10,935 --> 00:41:13,680 When we went back and did an evaluation of that 1001 00:41:13,680 --> 00:41:14,205 process, 1002 00:41:14,572 --> 00:41:16,274 it was completely rejected. 1003 00:41:16,274 --> 00:41:17,608 We were told as much. 1004 00:41:17,608 --> 00:41:19,719 If these people, the community leaders, 1005 00:41:19,719 --> 00:41:21,612 these are very specific functions, 1006 00:41:21,612 --> 00:41:22,814 why they are leaders. 1007 00:41:22,814 --> 00:41:25,660 But when it comes to research, we need to think of another 1008 00:41:25,660 --> 00:41:26,150 mechanism 1009 00:41:26,517 --> 00:41:29,067 and therefore our mechanism of electing 1010 00:41:29,067 --> 00:41:31,356 community, of of community leaders 1011 00:41:31,356 --> 00:41:33,092 being elected by the community came 1012 00:41:33,092 --> 00:41:35,226 from the views, by the commits themselves. 1013 00:41:36,427 --> 00:41:37,028 Not many 1014 00:41:37,028 --> 00:41:40,064 people will have resources the time to do that. 1015 00:41:40,064 --> 00:41:42,867 But you need to be aware, whichever way of representation, 1016 00:41:42,867 --> 00:41:46,875 you need to be aware of some of the considerations that you need 1017 00:41:46,875 --> 00:41:47,438 to have. 1018 00:41:47,438 --> 00:41:50,508 Council who is selecting whose voices, 1019 00:41:51,109 --> 00:41:54,112 represented, the most vulnerable. 1020 00:41:54,679 --> 00:41:58,249 However, you're defining who's had the least vocal 1021 00:41:58,716 --> 00:42:01,269 and what approaches are you making for 1022 00:42:01,269 --> 00:42:03,688 those that don't even speak at all, 1023 00:42:03,955 --> 00:42:06,958 don't come for meetings at all, or don't have a voice? 1024 00:42:06,958 --> 00:42:08,292 Their views. 1025 00:42:08,292 --> 00:42:11,295 What extra measures need to be in place? 1026 00:42:11,863 --> 00:42:14,490 Also clarity of roles and responsibilities 1027 00:42:14,490 --> 00:42:15,867 and what is expected? 1028 00:42:17,268 --> 00:42:19,294 A balance of individual motivation 1029 00:42:19,294 --> 00:42:20,605 and fair composition. 1030 00:42:21,239 --> 00:42:23,983 There's an attraction to be involved in this, 1031 00:42:23,983 --> 00:42:24,776 composition. 1032 00:42:24,776 --> 00:42:26,911 Been in provided. 1033 00:42:26,911 --> 00:42:29,580 And that is a good thing, but also need to be aware 1034 00:42:29,580 --> 00:42:31,426 of the dynamics that that can cause 1035 00:42:31,426 --> 00:42:32,850 and how this is discussed. 1036 00:42:34,152 --> 00:42:36,207 Some of the challenges related to 1037 00:42:36,207 --> 00:42:36,954 information 1038 00:42:36,954 --> 00:42:40,191 and resource asymmetries with the stuff that are getting 1039 00:42:40,458 --> 00:42:44,762 and whether such as themselves can pull some challenges. 1040 00:42:45,129 --> 00:42:48,438 And then, of course, for rich and marginalized populations, 1041 00:42:48,438 --> 00:42:49,167 how are they 1042 00:42:49,167 --> 00:42:51,360 represented and engaged and building 1043 00:42:51,360 --> 00:42:53,371 lasting relationships over time? 1044 00:42:53,771 --> 00:42:57,308 And we talk about when founded a trust, 1045 00:42:57,308 --> 00:43:00,311 not simply brand. So. 1046 00:43:01,179 --> 00:43:04,048 So I am now moving through 1047 00:43:04,048 --> 00:43:05,882 challenges, some of the challenges 1048 00:43:05,882 --> 00:43:07,285 and limits of engagement. 1049 00:43:07,652 --> 00:43:09,320 One is there are always tensions 1050 00:43:09,320 --> 00:43:12,757 between providing health care and successful research. 1051 00:43:12,757 --> 00:43:15,393 We need to be aware of this, 1052 00:43:15,393 --> 00:43:17,575 permission from community leaders 1053 00:43:17,575 --> 00:43:19,030 to undertake research 1054 00:43:19,030 --> 00:43:21,217 and community consent is not the same 1055 00:43:21,217 --> 00:43:23,167 as individual consent and so on. 1056 00:43:23,468 --> 00:43:25,803 At each one of these, there are always tension 1057 00:43:25,803 --> 00:43:27,778 and I think in the previous session 1058 00:43:27,778 --> 00:43:28,906 you already started 1059 00:43:28,906 --> 00:43:30,441 talking about some of these tensions, 1060 00:43:30,441 --> 00:43:31,976 so I'm not going too much into them. 1061 00:43:33,111 --> 00:43:36,113 We need to be cognizant of the context, 1062 00:43:36,681 --> 00:43:39,684 you know, working within health systems. 1063 00:43:40,151 --> 00:43:42,153 We might be working within systems. 1064 00:43:42,153 --> 00:43:44,691 So community input data is not valued or 1065 00:43:44,691 --> 00:43:45,389 essential. 1066 00:43:45,389 --> 00:43:47,539 So we need to figure out which systems 1067 00:43:47,539 --> 00:43:49,293 we are working on and how best 1068 00:43:49,293 --> 00:43:51,946 we can enhance the judgment that ought to be 1069 00:43:51,946 --> 00:43:52,730 taking place 1070 00:43:54,198 --> 00:43:55,366 also within communities. 1071 00:43:55,366 --> 00:43:57,768 Awareness of rights and response. 1072 00:43:57,768 --> 00:44:00,571 What I've talked about representation. 1073 00:44:00,571 --> 00:44:02,469 We also need to be aware of the wider 1074 00:44:02,469 --> 00:44:04,675 social, political and cultural environment 1075 00:44:04,675 --> 00:44:08,887 in which we are operating in some of the, settings where 1076 00:44:08,887 --> 00:44:09,714 we go out, 1077 00:44:09,714 --> 00:44:11,993 you might find that women and men 1078 00:44:11,993 --> 00:44:13,651 do not interact at all, 1079 00:44:14,185 --> 00:44:17,688 so your judgment activities need to take account of that. 1080 00:44:18,089 --> 00:44:21,092 It might require that, your, 1081 00:44:23,327 --> 00:44:25,763 organizing engagement activities 1082 00:44:25,763 --> 00:44:27,807 and different days at different times 1083 00:44:27,807 --> 00:44:29,133 or in different venues, 1084 00:44:29,133 --> 00:44:32,835 depending on the context and the cultural issues around 1085 00:44:32,835 --> 00:44:33,104 it. 1086 00:44:33,104 --> 00:44:35,540 Also, who speaks in meetings matters. 1087 00:44:35,540 --> 00:44:39,369 So what else does engagement can we do to enhance the voices 1088 00:44:39,369 --> 00:44:39,944 of those 1089 00:44:39,944 --> 00:44:43,915 that are not able to speak because of cultural, but, 1090 00:44:45,016 --> 00:44:45,750 there's 1091 00:44:45,750 --> 00:44:47,693 some limits of engagement and your rights 1092 00:44:47,693 --> 00:44:49,020 to speak for some of these. 1093 00:44:49,420 --> 00:44:52,671 And then the last thing to say is that it may not resolve all 1094 00:44:52,671 --> 00:44:53,257 historical 1095 00:44:53,958 --> 00:44:57,161 injustices, and inequities. 1096 00:44:57,161 --> 00:44:59,797 So those are some of the limits of engagement.