1 00:00:01,500 --> 00:00:08,350 So welcome to this first St Cross Special seminar of the term today. 2 00:00:08,350 --> 00:00:14,160 We've got Maureen Kelley is professor of bioethics and welcome senior investigator at the 3 00:00:14,160 --> 00:00:21,000 wellcome centre for humanities here at Oxford. before she gets started. 4 00:00:21,000 --> 00:00:25,590 Just a quick note on the format for those that might be unfamiliar. 5 00:00:25,590 --> 00:00:33,090 So Maureen is going to speak for roughly half a little bit longer than we have our discussion. 6 00:00:33,090 --> 00:00:39,630 When you ask a question, if you can either raise your hand and my preferences slightly, 7 00:00:39,630 --> 00:00:44,220 that you raise your hand and then you can come in and ask your question and keep it a little bit more like a discussion. 8 00:00:44,220 --> 00:00:47,940 But you're also welcome to use the chair or the Q&A function. 9 00:00:47,940 --> 00:00:52,920 I think the operating. Yeah. So if you want to do that, you can also do that. 10 00:00:52,920 --> 00:01:03,690 And I will endeavour to to read out your questions like, well, today we're going to talk to us about fighting diseases of poverty through research, 11 00:01:03,690 --> 00:01:10,070 didley dilemmas, moral distress and misplaced responsibilities to take away my. 12 00:01:10,070 --> 00:01:19,220 Thanks so much and thanks, everyone, for joining us. I'm really sorry we can't be together in person, hopefully soon, 13 00:01:19,220 --> 00:01:24,710 but I really appreciate the invitation to speak during the series and I look 14 00:01:24,710 --> 00:01:37,900 forward to having some discussion about some of the questions that I'll raise. So this this talk is sparked by a project that just finished up. 15 00:01:37,900 --> 00:01:47,630 It was a five year empirical research ethics project across four countries, three international research sites. 16 00:01:47,630 --> 00:01:51,080 And so it's split into two when I'm doing this. 17 00:01:51,080 --> 00:02:00,890 And I'll I'll give you enough of the enough highlights and some substantive content from the empirical findings of this research ethics project. 18 00:02:00,890 --> 00:02:05,390 And I'll say more about the methods and in the project in a moment. 19 00:02:05,390 --> 00:02:11,030 So we'll spend roughly half the time giving you enough from the participants in this study to 20 00:02:11,030 --> 00:02:18,200 give you a sense of the ethical challenges in context and then in part to the second half, 21 00:02:18,200 --> 00:02:28,580 hopefully leading to a kind of continuation and discussion. I'll share some normative reflections, stepping back from what we found empirically, 22 00:02:28,580 --> 00:02:34,790 some of the dilemmas facing a particular frontline researchers and reflect on how the kinds of 23 00:02:34,790 --> 00:02:40,940 questions this raises for how we think about ethical obligations in international research. 24 00:02:40,940 --> 00:02:48,830 So it has these two parts and roughly equal time to both do have a lot of content, because I know this is a mixed audience. 25 00:02:48,830 --> 00:02:56,390 Some of it I'll go through more quickly. And I'm hoping in the recording people can pause and spend more time and linger on certain parts. 26 00:02:56,390 --> 00:02:59,630 So there's more here than then we'll be able to cover. 27 00:02:59,630 --> 00:03:08,330 But again, I'm hoping that we can draw out anything that's of interest and take a deeper dive during discussion on those points. 28 00:03:08,330 --> 00:03:17,330 So before I get started, critically, I'm here on behalf of the of a large and really talented research team. 29 00:03:17,330 --> 00:03:25,700 So in the first half, I'm sharing the findings. This is our outreach team from the study that I'll be referring to. 30 00:03:25,700 --> 00:03:30,500 And they have all contributed fundamentally to to this project. 31 00:03:30,500 --> 00:03:41,090 So where I share quotes and data across the different sites, I'm also including the papers that have now come out where you can go and find out more, 32 00:03:41,090 --> 00:03:46,150 read and understand the data in full context for each of the countries. 33 00:03:46,150 --> 00:03:51,890 So, again, I'll be this is sort of a higher level view of the data across very diverse contexts. 34 00:03:51,890 --> 00:04:00,050 And I want to encourage you to go to the website, which is included here, and that has all of our papers, many of which are still forthcoming. 35 00:04:00,050 --> 00:04:10,430 And it has a number of films that we've created as a way of understanding the research ethics context 36 00:04:10,430 --> 00:04:15,530 through the eyes of frontline researchers and through the eyes of participants and community members. 37 00:04:15,530 --> 00:04:22,220 So there's a lot there that I won't get to, but I very much wanted to acknowledge everybody else on the team. 38 00:04:22,220 --> 00:04:27,080 So to start just by way of a background, it's it's not a surprise. 39 00:04:27,080 --> 00:04:30,770 And I think most of the people joining will appreciate that. 40 00:04:30,770 --> 00:04:35,150 Most of global health research occurs against the backdrop of really severe 41 00:04:35,150 --> 00:04:42,110 intersectional and structural vulnerabilities where the susceptibility of people, 42 00:04:42,110 --> 00:04:42,780 population, 43 00:04:42,780 --> 00:04:51,500 susceptibility to disease and early death are driven by poverty and related structural factors such as political conflict and climate change, 44 00:04:51,500 --> 00:04:58,100 things that are sort of outside the power of individuals to to effect change or to shift. 45 00:04:58,100 --> 00:05:09,000 And yet many of the so-called diseases of poverty come from and stem from these underlying social, political, environmental conditions. 46 00:05:09,000 --> 00:05:18,030 Much of global health research, priority setting continues to be driven by the really comprehensive and valuable global burden of disease, 47 00:05:18,030 --> 00:05:26,910 and this is the these are the twenty 19 numbers, the most recent numbers and the aggregate disease burden in one shot. 48 00:05:26,910 --> 00:05:31,380 So this is quite a powerful set of data. 49 00:05:31,380 --> 00:05:40,530 There have been lots of critiques on the way in which the processes behind priority setting, I'm not going to to get into that. 50 00:05:40,530 --> 00:05:51,180 This is just to provide a bit of background to show really how priority setting is largely driven and to point out that, 51 00:05:51,180 --> 00:05:58,770 again, what's probably obvious, but it's often not stated, which is that if you look at this aggregate map and if you look at any of this specific 52 00:05:58,770 --> 00:06:06,960 disease burdens by about the same areas and red light up over and over again, 53 00:06:06,960 --> 00:06:17,350 so the dominant burden of disease is shouldered by those who often live in poverty and conflict zones, in health systems that are really struggling. 54 00:06:17,350 --> 00:06:21,660 And the fact that the maps look this way is really significant. 55 00:06:21,660 --> 00:06:27,240 I think from the point of view of ethics and social justice and thinking about where, 56 00:06:27,240 --> 00:06:31,860 you know, if you're tracking most of the most significant suffering in the world, 57 00:06:31,860 --> 00:06:45,250 you're also tracking these more sort of structural or at least operating the presence of these really structural, difficult drivers of disease. 58 00:06:45,250 --> 00:06:52,540 And I also want to point out that I very much appreciate and this project in this work is driven 59 00:06:52,540 --> 00:06:58,570 by an appreciation of the need for research to inform every evidence based interventions, 60 00:06:58,570 --> 00:07:04,930 both in humanitarian work and development, work through partnerships with governments. 61 00:07:04,930 --> 00:07:14,560 And this is just one example of a nutrition programme in Bangladesh that was implemented, very expensive one, and was proved to be ineffective. 62 00:07:14,560 --> 00:07:20,770 It wasn't harmful that children weren't worse off than they were before, but they weren't any better off. 63 00:07:20,770 --> 00:07:24,610 And so there are a lot of programmes like this not to not to pick on UNICEF, 64 00:07:24,610 --> 00:07:32,770 but this is there are a lot of other examples where the urgent need to intervene and to to 65 00:07:32,770 --> 00:07:40,960 implement a programme which is very costly in terms of implementation and staff and training. 66 00:07:40,960 --> 00:07:48,310 It's very hard to shift once you've implemented a programme like this and you had a lot of them are remarkably not evidence based. 67 00:07:48,310 --> 00:07:58,240 And it may seem astonishing, but sometimes the need to move quickly obviates makes it difficult to to gather sufficient data. 68 00:07:58,240 --> 00:08:06,280 And so there's an increasing move, an argument that we need to take the time to ensure that large scale development programmes, 69 00:08:06,280 --> 00:08:10,430 large scale humanitarian programmes are better integrated with research. 70 00:08:10,430 --> 00:08:16,810 And so you'll see groups like MSF integrating research within their humanitarian 71 00:08:16,810 --> 00:08:21,670 aid efforts so that there's more communication between data on the ground, 72 00:08:21,670 --> 00:08:28,660 what's needed and what works in context. So this is a really critical role. 73 00:08:28,660 --> 00:08:32,650 There is a really critical role for research in these settings. 74 00:08:32,650 --> 00:08:37,900 That's sort of a starting point, and I'm not challenging that premise, 75 00:08:37,900 --> 00:08:47,800 but I'm going to raise some ethical questions and some limitations of the way in which we currently do this in these settings. 76 00:08:47,800 --> 00:08:55,060 So the fundamental issue is that global health research is occurring in context of structural injustice. 77 00:08:55,060 --> 00:09:02,530 And this is there are a number of definitions out there. This is from Medicine Powers and Ruth Fadden's recent book on structural injustice. 78 00:09:02,530 --> 00:09:09,310 So structural injustices take the form of unfair patterns of advantage and unfair relationships of power, 79 00:09:09,310 --> 00:09:13,990 including subordination, exploitation and social exclusion, 80 00:09:13,990 --> 00:09:16,420 as well as powers and Vaden argue, 81 00:09:16,420 --> 00:09:25,450 human human rights violations and deprivations and well-being that contribute to and grow out of unjust social structural conditions. 82 00:09:25,450 --> 00:09:35,080 So once we recognise that fact, what I'd like to explore today and argue is that there's a real disconnect between this reality, 83 00:09:35,080 --> 00:09:40,810 which people do recognise, and the moral world of frontline researchers. 84 00:09:40,810 --> 00:09:47,410 And that kind of day to day practise of research and how dilemmas of life in poverty 85 00:09:47,410 --> 00:09:53,710 or in political conflict in these other contexts manifest people's felt obligations, 86 00:09:53,710 --> 00:10:04,840 etc. There is a real disconnect here. The other really important thing is to underscore the way in which priority setting still continues to happen. 87 00:10:04,840 --> 00:10:15,760 So I mentioned the global burden of disease and a number of scholars, including Debbie Shridhar and Edinborough, have argued and described, 88 00:10:15,760 --> 00:10:26,680 really mapped the way in which global health priority setting happens and have described the sort of 89 00:10:26,680 --> 00:10:35,560 small number of very influential high profile government agencies or government research institutions, 90 00:10:35,560 --> 00:10:42,850 organisations and public private partnerships that are funding the majority of global health research in the world. 91 00:10:42,850 --> 00:10:52,030 And it's a very small number and they are primarily located in high income countries, although importantly, 92 00:10:52,030 --> 00:11:04,300 there has been a rise in the last decade of of very effective community based country, low income, country driven partnerships. 93 00:11:04,300 --> 00:11:16,000 Nonetheless, they argue that the majority of funding and sort of priority setting is coming from this very small group of powerful institutions. 94 00:11:16,000 --> 00:11:18,370 And they raise a number of questions about this. 95 00:11:18,370 --> 00:11:26,830 So what I want to point out, I'm not going to get into that debate today from Debbie and Chelsea Clinton. 96 00:11:26,830 --> 00:11:34,990 But just to highlight that, one of the things missing is that despite these public private partnerships, 97 00:11:34,990 --> 00:11:43,260 there really is very little attention to including in priority setting for research, these more sort of structural drivers of disease. 98 00:11:43,260 --> 00:11:50,800 So whilst diseases of poverty are being tackled and being tackled very systematically, 99 00:11:50,800 --> 00:11:59,080 there's much less attention on research, engaging these more sort of structural factors. 100 00:11:59,080 --> 00:12:08,110 So to to shift to share new data from our project, we set out to investigate the ethical challenges surrounding everyday research. 101 00:12:08,110 --> 00:12:14,380 So this is sort of after ethics approval happens, studies been approved, what happens in the field, 102 00:12:14,380 --> 00:12:20,620 what happens during a clinical trial or social science study over time in low 103 00:12:20,620 --> 00:12:28,690 resource settings or low resource and politically unstable settings in the study? 104 00:12:28,690 --> 00:12:34,960 In this study, we focussed on maternal and child health just as a way of narrowing our our focus. 105 00:12:34,960 --> 00:12:41,260 And because that was the nature of expertise on the core team and it was a large partnership across 106 00:12:41,260 --> 00:12:49,750 institutions in many of the programmes in partnership with Oxfords international research programmes. 107 00:12:49,750 --> 00:12:58,030 And it wouldn't have been possible if we didn't have really deep and lasting partnerships with the clinical scientists 108 00:12:58,030 --> 00:13:07,000 and leads on these studies that opened up their studies to ethical scrutiny on a day to day basis over up to four years. 109 00:13:07,000 --> 00:13:09,230 So really remarkable. 110 00:13:09,230 --> 00:13:18,330 And they played a really important role in reflecting on thinking about some of the dilemmas that were coming up in their own studies. 111 00:13:18,330 --> 00:13:28,140 Very quickly, the institutions where Camry, Wellcome Trust, which has been operating since 1989, again, 112 00:13:28,140 --> 00:13:37,860 very poor district of Kenya on the eastern coast of Kenya, there for a reason, 113 00:13:37,860 --> 00:13:45,840 right in the midst of a really serious disease burden and severe poverty. 114 00:13:45,840 --> 00:13:55,110 Second partnership with Ari, the Africa Health Research Institute, which is in a similarly rural location in KwaZulu-Natal, 115 00:13:55,110 --> 00:14:04,560 similar socioeconomic political context and really high disease burden, especially HIV. 116 00:14:04,560 --> 00:14:12,210 And the third partner with Ciccolo Malaria Research Unit, which is right on the border of Myanmar and Thailand. 117 00:14:12,210 --> 00:14:18,570 And they have a large number of actually the majority of the population in their malaria. 118 00:14:18,570 --> 00:14:25,620 TB and other research studies are current Burmese migrants. 119 00:14:25,620 --> 00:14:28,200 And obviously now with the situation in Myanmar, 120 00:14:28,200 --> 00:14:35,940 they're they're seeing an influx of people fleeing the border and fleeing Myanmar to come into Thailand, 121 00:14:35,940 --> 00:14:40,590 exacerbated by the border being shut down with with covid. 122 00:14:40,590 --> 00:14:45,160 So we chose this unit in part because of the really trying to understand more of 123 00:14:45,160 --> 00:14:49,470 the political context where the nature of vulnerability was not just poverty, 124 00:14:49,470 --> 00:14:56,130 but also political persecution, lack of recognition by government. 125 00:14:56,130 --> 00:15:02,340 So those are the three sites. And what we did was there there were a range of different research programmes at each 126 00:15:02,340 --> 00:15:08,130 of these sites that we partnered with and by we the team that I just flashed up. 127 00:15:08,130 --> 00:15:14,160 There were local ethicists and social scientists that were embedded in these studies for up to four years on. 128 00:15:14,160 --> 00:15:18,750 The source was two years. The longest is still ongoing. 129 00:15:18,750 --> 00:15:23,790 And some of these were clinical randomised controlled trials. 130 00:15:23,790 --> 00:15:28,530 Some of them were social science studies. Some of them were psychological development studies. 131 00:15:28,530 --> 00:15:31,740 So we deliberately picked a range of different types of research. 132 00:15:31,740 --> 00:15:43,380 So it wasn't just clinical research and the teams were embedded in this sort of day to day work of these research studies. 133 00:15:43,380 --> 00:15:52,500 But we deliberately conducted interviews with we took a kind of 360 degree view of research and talked to participants, 134 00:15:52,500 --> 00:15:59,790 their family members, members of the community and households of those who were involved in research, the researchers themselves. 135 00:15:59,790 --> 00:16:05,670 And these weren't just interviews. We use diaries and other ways of engaging them over time. 136 00:16:05,670 --> 00:16:10,230 So this is a collective snapshot of the data that came in from the three studies, 137 00:16:10,230 --> 00:16:17,650 the qualitative data that I'll be drawing on and sort the quotes that I share with you. 138 00:16:17,650 --> 00:16:26,110 We also conducted participatory visual work as a another way of understanding the experiences of community members, 139 00:16:26,110 --> 00:16:33,640 and I encourage you to go look at the website. We've got two videos posted in another forthcoming, and they're really powerful. 140 00:16:33,640 --> 00:16:41,980 I can't convey. And these quotes that I'll be sharing with you the kind of direct voices of community members and researchers. 141 00:16:41,980 --> 00:16:50,050 So please do have a look at that. So the results I want to share today really barely scratched the surface, to be honest. 142 00:16:50,050 --> 00:16:54,820 It's just a massive amount of data and really interesting a number of ethical themes. 143 00:16:54,820 --> 00:16:58,150 And I'm going to hone in on one thing for the purposes of this talk, 144 00:16:58,150 --> 00:17:04,900 and that's to look at the experience of the frontline researchers in their own sense of 145 00:17:04,900 --> 00:17:10,810 felt obligation toward participants in their and their families in the research context. 146 00:17:10,810 --> 00:17:24,100 And I'm going to underscore their experiences as they related to these deeper structural vulnerabilities are drivers of disease, as I mentioned. 147 00:17:24,100 --> 00:17:30,310 And one of the things that was so powerful in this work was to get to know the front line 148 00:17:30,310 --> 00:17:35,510 researchers and to appreciate that they're really the face and heart of global health research. 149 00:17:35,510 --> 00:17:43,330 And those who get the accolades are the peers and the, you know, the the sort of high visibility researchers. 150 00:17:43,330 --> 00:17:49,480 And there's this quiet army of largely local staff. 151 00:17:49,480 --> 00:17:53,980 They are often on precarious contracts. They go from one study to another. 152 00:17:53,980 --> 00:18:04,210 The recent experience with Yukari demonstrates how devastating it can be when funding is pulled by one of those handful of of global health investors. 153 00:18:04,210 --> 00:18:11,500 And they're just remarkable in what they know, what they do, their skills. 154 00:18:11,500 --> 00:18:19,690 And so really, the most powerful thing that that we came to to learn about is their their experience. 155 00:18:19,690 --> 00:18:26,110 And they're the ones that are bearing witness to the kinds of struggles that participants face outside the study. 156 00:18:26,110 --> 00:18:31,930 And we explicitly wanted to know about the background and people's daily lives, 157 00:18:31,930 --> 00:18:40,300 and we learnt about it directly from participants and community members, but also from the from the researchers themselves. 158 00:18:40,300 --> 00:18:46,390 And part of this was to open up the way that we tend to think about our obligations in research. 159 00:18:46,390 --> 00:18:53,860 Historically, research ethics has really focussed on a fairly narrow conception of what we owe to others in research, 160 00:18:53,860 --> 00:19:04,150 and we deliberately wanted to widen that view through the eyes of those that are working directly with participants and understand 161 00:19:04,150 --> 00:19:13,900 the wider struggles that people are facing and in a way to challenge this narrow conception of responsibility and research. 162 00:19:13,900 --> 00:19:21,900 One of the things we realised is that a lot of front line researchers don't necessarily have the tools or the resources to respond, 163 00:19:21,900 --> 00:19:25,420 but they do have the sort of moral capacity to respond. 164 00:19:25,420 --> 00:19:31,860 They feel very strongly that they need to respond. So I'm going to say much more about that. 165 00:19:31,860 --> 00:19:42,750 So we're witnessing and this is this is from Masad from our one of our team members and really talented photographer, Supercute Neston. 166 00:19:42,750 --> 00:19:56,250 And here she is. She's taking a picture while she actually was out working on a surveillance, a TV surveillance project and day day today. 167 00:19:56,250 --> 00:19:57,860 And they're in their own work there. 168 00:19:57,860 --> 00:20:06,240 They're seeing the burdens in this case, quite literally carried by members of the community and people that are also involved in research studies, 169 00:20:06,240 --> 00:20:13,620 in this case, one of the malaria studies. And so this is from the the Tai team. 170 00:20:13,620 --> 00:20:20,340 But this model of vulnerability was shared across the different sites, 171 00:20:20,340 --> 00:20:30,810 and that is that the what people were facing in their daily lives was brought into the research encounter, not surprisingly. 172 00:20:30,810 --> 00:20:39,870 And yet research ethics really doesn't quite recognise this model of of of structural sources, of vulnerability and research. 173 00:20:39,870 --> 00:20:45,540 So what we found was this intersectional relationship between political vulnerabilities, 174 00:20:45,540 --> 00:20:51,630 economic vulnerabilities, social vulnerability, such as gender based violence and then health vulnerabilities. 175 00:20:51,630 --> 00:20:57,000 And the research is focussed on the latter. Right. The research is focussed on health vulnerabilities. 176 00:20:57,000 --> 00:21:03,900 And there's an awareness that all the rest of this is driving malaria, TB, HIV. 177 00:21:03,900 --> 00:21:13,620 But there is the sense of, well, you know, that's what we're here to do and a kind of frustration that that's not what we're here to do. 178 00:21:13,620 --> 00:21:18,540 The other really important feature of the vulnerabilities witnessed by and 179 00:21:18,540 --> 00:21:24,870 experienced by participants and frontline researchers was what Florencia Luna, 180 00:21:24,870 --> 00:21:34,950 the Argentinean bioethicist, has called vulnerability Cascade's. This was especially true in the Kenyan findings, 181 00:21:34,950 --> 00:21:46,050 where you saw the ways in which families were existing sort of on the precipice and you had these these cascade effects 182 00:21:46,050 --> 00:21:56,850 where one lost job and the family or one illness would tip the scales and reinforce the vulnerability of the entire family. 183 00:21:56,850 --> 00:22:04,230 And you also saw this on an institutional level or or structural level in the health system. 184 00:22:04,230 --> 00:22:08,490 So while we were conducting this study in Kenya, there was a nursing strike. 185 00:22:08,490 --> 00:22:18,120 And this one strike, which is a frequent occurrence in many of the countries where global health research occurs, 186 00:22:18,120 --> 00:22:23,070 about one strike was really devastating and paralysing for the entire health system. 187 00:22:23,070 --> 00:22:28,470 And so in the context of researchers sort of witnessing at these different levels, 188 00:22:28,470 --> 00:22:40,500 these tipping points and cascade effects, where you have reinforcing harms, structural and in nature. 189 00:22:40,500 --> 00:22:46,020 So I want to shift now to what the impact of witnessing these kinds of structural 190 00:22:46,020 --> 00:22:53,040 vulnerabilities and the vulnerability cascades and how this manifested for researchers, 191 00:22:53,040 --> 00:23:02,290 as I mentioned there on the front lines of systemic suffering, what they witnessed on a day to day basis is is really remarkable. 192 00:23:02,290 --> 00:23:11,490 And they often struggle with the disconnect between the narrowness or their perceived narrowness of the study that they're there to collect 193 00:23:11,490 --> 00:23:23,910 data for and and the enormity of the needs of the communities and the participants and the families in which there they become very close to. 194 00:23:23,910 --> 00:23:29,430 So they often witness really heart rending dilemmas, not only in their own in terms of what to do, 195 00:23:29,430 --> 00:23:39,000 whether to respond or not, but dilemmas within families living in poverty or living in a politically unstable situation. 196 00:23:39,000 --> 00:23:47,400 So moral distress. For those of you that don't know the literature you came out of, nursing ethics is roughly knowing the right thing to do, 197 00:23:47,400 --> 00:23:51,120 but being unable to adequately respond to the situation for a variety of reasons. 198 00:23:51,120 --> 00:23:55,710 You don't have the resources, you're not the right person, or you don't have the power to respond to. 199 00:23:55,710 --> 00:24:00,650 All of these things tend to be true for frontline researchers there. 200 00:24:00,650 --> 00:24:11,130 They have a sense of what needs to be done, but what they what they think should be done, but they feel unable to respond adequately. 201 00:24:11,130 --> 00:24:20,760 And just a few quotes from some of the frontline research staff in this case, the first instance was a public engagement officer. 202 00:24:20,760 --> 00:24:24,600 People share their stories and you wonder where I even begin to help them. 203 00:24:24,600 --> 00:24:28,260 What makes it unbearable is the inability to go an extra mile to help them. 204 00:24:28,260 --> 00:24:33,060 It makes you emotional. And one of the researchers said so to them. 205 00:24:33,060 --> 00:24:39,000 Sometimes you can feel that, you know what, I'm hitting the wall, but you just keep on trying and trying and trying. 206 00:24:39,000 --> 00:24:47,220 So that's what it's most sad about, the kids helping them as a challenge. You see, that's why I think that for them it requires patience and time. 207 00:24:47,220 --> 00:24:54,810 One of the remarkable things that came across was the perseverance and the kind of chronic nature of the needs that frontline researchers 208 00:24:54,810 --> 00:25:03,990 face and that they're constantly kind of pulling themselves up the next day after going to their office and crying and then trying again. 209 00:25:03,990 --> 00:25:12,540 It just really remarkable, dogged repeated attempts to to help. 210 00:25:12,540 --> 00:25:23,490 But one of the frustrations and one of our one of our research team members, Boosey, because he called it the Bridge to nowhere in South Africa, 211 00:25:23,490 --> 00:25:32,310 is really widespread expectation that the best response in research is to refer to services. 212 00:25:32,310 --> 00:25:40,470 So rather than trying to respond directly, the study should be set up to refer to existing services, partner in advance, find out who they are. 213 00:25:40,470 --> 00:25:49,920 And this is kind of the model for ancillary care that is care that falls outside of the research remit or focus. 214 00:25:49,920 --> 00:26:00,690 And yet in these health systems, which are fractured, struggling now more than ever with covid, this is often a bridge to nowhere. 215 00:26:00,690 --> 00:26:07,260 So you make a referral for gender based violence or know gender based violence counsellors or services available. 216 00:26:07,260 --> 00:26:17,400 You make a referral for follow up for cancer or for HIV. And the you know, there's one person in the district and they're inundated. 217 00:26:17,400 --> 00:26:27,300 And researchers were often on their own time chasing referrals, following up, worrying about whether a young girl was referred, 218 00:26:27,300 --> 00:26:34,200 whether she was able to to go to the appointment for gender based violence, all kinds of stories like that. 219 00:26:34,200 --> 00:26:47,800 And so this Bridge to Nowhere is a really real and I think serious limitation to the referral care approach to ancillary care. 220 00:26:47,800 --> 00:26:55,150 And there was a lot of distress, again, moral distress amongst the staff related to this, 221 00:26:55,150 --> 00:27:03,160 these challenges and limitations as one of the public engagement officers said and at Ari, 222 00:27:03,160 --> 00:27:07,960 there's nothing as painful as wishing you could do something for the four participants or the community. 223 00:27:07,960 --> 00:27:12,920 But you cannot. We're human. And we heard that again and again. 224 00:27:12,920 --> 00:27:21,610 You know, we're human. This is the human thing to do. And yet they didn't feel that they had the resources to respond or the system in which they 225 00:27:21,610 --> 00:27:27,640 were trying to respond was so broken that they couldn't obtain services for the participants. 226 00:27:27,640 --> 00:27:37,630 The other really important thing that came across, as you see in a second quote, was the really strong community expectations that they respond. 227 00:27:37,630 --> 00:27:45,250 So it was both a personal expectation that this is what I should do human to human, or this is what I should do as a member of this community, 228 00:27:45,250 --> 00:27:51,910 because most front line researchers are from and recruited from those communities because they speak the language. 229 00:27:51,910 --> 00:27:56,170 They know people. They can go out in the villages and conduct research. 230 00:27:56,170 --> 00:27:58,640 So there was this sense of solidarity, 231 00:27:58,640 --> 00:28:09,310 but there was also a community expectation that if you come and you gather information or blood samples or something that's valuable to you, 232 00:28:09,310 --> 00:28:11,740 you ought to give us something in return. 233 00:28:11,740 --> 00:28:22,040 And so this was the other other frustration is that they weren't meeting community expectations in their own communities in my site. 234 00:28:22,040 --> 00:28:22,730 And we have it. 235 00:28:22,730 --> 00:28:32,210 We'll have an entire paper coming out on this idea of Congi Aadhar, which roughly translates to empathy or solidarity or collective empathy. 236 00:28:32,210 --> 00:28:37,390 It's a really complex, interesting, rich cultural norm. 237 00:28:37,390 --> 00:28:48,340 And so this doesn't quite do it justice. But really, it was this idea of connexion of reciprocity between the front line researchers, 238 00:28:48,340 --> 00:28:54,250 especially those who were current Burmese and the participants and families. 239 00:28:54,250 --> 00:29:02,020 So it's one of the frontline health care workers said we also sympathise for them when they say we don't know what to do. 240 00:29:02,020 --> 00:29:07,990 We're helping each other. I'm always here. They always come here and I always look after them. 241 00:29:07,990 --> 00:29:12,640 We have to help them. They also help us. That's what we tell them. 242 00:29:12,640 --> 00:29:18,880 So there was this constant awareness that the benefit had to had to go both ways 243 00:29:18,880 --> 00:29:26,110 and that they were benefiting from gathering data and information on TB malaria. 244 00:29:26,110 --> 00:29:31,300 And they were also they needed to give something back and they needed to give something back immediately. 245 00:29:31,300 --> 00:29:38,890 This idea of a long term benefit, once the data comes out, when some malaria is eradicated, that's not what they're talking about. 246 00:29:38,890 --> 00:29:50,110 What they're talking about is that once when response to the needs today and it was a very, very strong sense amongst the researchers. 247 00:29:50,110 --> 00:29:57,430 There were also a lot of worries, and this was in Masad about the ways in which research and presence of research, 248 00:29:57,430 --> 00:30:03,700 despite bringing benefits of a more sort of long term nature or even direct benefits 249 00:30:03,700 --> 00:30:10,360 of offering clinical care and services might inadvertently exacerbate existing risks, 250 00:30:10,360 --> 00:30:13,110 in this case, political and economic risks. 251 00:30:13,110 --> 00:30:22,870 So this was one of the researchers worrying about travelling across the border and losing a day of wages to come in for research. 252 00:30:22,870 --> 00:30:28,120 And it takes you all day to travel some travel for four hours in one direction. 253 00:30:28,120 --> 00:30:37,960 Multiple modes of transportation tractors ferry across the river walking great distances and, 254 00:30:37,960 --> 00:30:45,280 you know, flooded roads and they've lost, you know, the opportunity to work in the field that day. 255 00:30:45,280 --> 00:30:48,940 They may have to bring their kids with them because they don't have child care. 256 00:30:48,940 --> 00:30:54,100 And at the border, they may be at risk of being caught by the police if they don't have papers. 257 00:30:54,100 --> 00:31:01,480 So we heard this from a lot of the researchers who were really worried about the ways in which research, 258 00:31:01,480 --> 00:31:08,880 despite being beneficial, might exacerbate some of these other risks. 259 00:31:08,880 --> 00:31:13,350 So researchers had a lot of different ways of responding in the moment, 260 00:31:13,350 --> 00:31:20,800 on the day, they often gave cash for four meals and they gave rides to hospital, 261 00:31:20,800 --> 00:31:25,800 that they made phone calls for people, they tried their best to connect them to care. 262 00:31:25,800 --> 00:31:33,960 They're also more each of these institutions, and I should emphasise all of them have robust ethics programmes. 263 00:31:33,960 --> 00:31:38,850 They all have. They've been in these places for two and three decades. 264 00:31:38,850 --> 00:31:45,060 They're very well connected to the communities and to the local governments and district governments. 265 00:31:45,060 --> 00:31:55,890 So they did have plans for assistance. Some had small cash funds that had been pooled by donations from from staff. 266 00:31:55,890 --> 00:31:57,570 They had transportation. 267 00:31:57,570 --> 00:32:08,220 They often use staff vehicles somewhat outside the rules to help families get to an appointment or get home, not be caught on one side of the river. 268 00:32:08,220 --> 00:32:15,900 You know, some staff would house people who were caught by the floods and needed to find a place to stay on the Thai side of the border. 269 00:32:15,900 --> 00:32:20,370 So there were lots and lots of stories of ways in which there was both immediate 270 00:32:20,370 --> 00:32:25,730 assistance and more sort of systemic attempts at the local institutional level, 271 00:32:25,730 --> 00:32:33,390 the research institute, to try to offer or address of some of these needs. 272 00:32:33,390 --> 00:32:38,940 As one researcher in Kenya said, I've helped out many times, sometimes you feel, 273 00:32:38,940 --> 00:32:44,850 what will it harm if I give this mother a thousand shillings, about what harm will it have? 274 00:32:44,850 --> 00:32:49,980 And it's not because I'm so philanthropic, but the feeling that I'm leaving you without any food to eat, 275 00:32:49,980 --> 00:32:53,880 knowing you told me that you have nothing to eat. Sometimes it's human. 276 00:32:53,880 --> 00:33:03,790 You just see yourself, you're going to give it. Camry doesn't allow me to give out money, so I haven't given you this money as Camry stuff, 277 00:33:03,790 --> 00:33:07,690 it's like an offering, like the way you give out offerings in a mosque. 278 00:33:07,690 --> 00:33:13,750 That's how I'm giving you. So it clearly gets in your head that it's not from Carrie, but just a blessing. 279 00:33:13,750 --> 00:33:17,410 I don't have to lie. I give them some money. 280 00:33:17,410 --> 00:33:25,480 And we saw this at all of the sites where there were rules against giving cash, where there were rules against giving aid, 281 00:33:25,480 --> 00:33:31,800 not rules against doing, you know, giving it as an institution, but rather as an individual. 282 00:33:31,800 --> 00:33:38,470 And there are lots of examples of people sort of skirting this by saying to the participants, 283 00:33:38,470 --> 00:33:42,430 this is not coming from Carrie or this is not coming from Ari. 284 00:33:42,430 --> 00:33:47,630 The research institute is coming from me, Kenyan to Kenyan or South African to South Africa. 285 00:33:47,630 --> 00:33:53,400 And I'm giving you this bit bit of money. 286 00:33:53,400 --> 00:34:02,130 The other the other really heartbreaking stories that we heard from researchers were the ways in which on a daily basis almost, 287 00:34:02,130 --> 00:34:11,190 they would witness deadly dilemmas within families in this case from one of our researchers, scholars. 288 00:34:11,190 --> 00:34:16,740 Akao, I'm going to read this out because it was really quite powerful. 289 00:34:16,740 --> 00:34:20,490 Three mothers talked movingly about the harsh reality of having to choose between 290 00:34:20,490 --> 00:34:24,840 earning money to feed all of the children and having to care for the sick child. 291 00:34:24,840 --> 00:34:30,570 And this was the child who was in the research study. One mother described a vicious cycle post discharge. 292 00:34:30,570 --> 00:34:36,940 In essence, she cannot return to her job because of the child's health needs and was then unable to afford the transport costs, 293 00:34:36,940 --> 00:34:40,890 the occupational therapy recommended for her child. In this case, 294 00:34:40,890 --> 00:34:45,270 the main challenge for the mother was with feeding and caring for this child 295 00:34:45,270 --> 00:34:50,580 was not so much the cost or access to food or even access to social support. 296 00:34:50,580 --> 00:34:56,130 But he was very poor. Theodore, something that our interview team also observed on visits to the home. 297 00:34:56,130 --> 00:35:02,850 Her frustration with being unable to feed her child adequately contributed to her feeling feelings of helplessness, 298 00:35:02,850 --> 00:35:10,170 with her disappointment and irritation impacting negatively on her persistence in feeding her child. 299 00:35:10,170 --> 00:35:20,970 And so there were lots of stories within households and within families of these really difficult trade offs of of trying to feed 300 00:35:20,970 --> 00:35:27,930 one child and knowingly not being able to feed the other or enrolling one child in a study and appealing to the researchers. 301 00:35:27,930 --> 00:35:36,110 Could you please enrol my other two children because of the benefits of the research? 302 00:35:36,110 --> 00:35:46,280 So this is just a how is sort of a a whirlwind and snapshot of some of the accounts that we learnt about through the eyes of frontline 303 00:35:46,280 --> 00:35:57,350 researchers and research staff who were directly engaged and in either research or public engagement around research in the community. 304 00:35:57,350 --> 00:36:06,590 And now I want to step back from that a bit and offer some reflections on what this means for how we think about our ethical obligations and research. 305 00:36:06,590 --> 00:36:13,150 And I'm hoping this will carry over to our discussion. So, as I mentioned, 306 00:36:13,150 --> 00:36:21,640 I think a lot of this bears on how we think about ancillary care or duty of care within the research context of 307 00:36:21,640 --> 00:36:29,740 a rich literature on this and really important models of how to think about our obligations within research. 308 00:36:29,740 --> 00:36:37,540 And what we found in the research study was that despite these models, there are a number of really serious limitations, 309 00:36:37,540 --> 00:36:47,020 one of which being the disconnect between the resources available in any given study or research institute. 310 00:36:47,020 --> 00:36:55,060 And the ones that we were partnered with are very, very well resourced research institutes and are probably not representative. 311 00:36:55,060 --> 00:37:06,490 And and even so, there was often just a feeling that the needs were well beyond what could be offered, 312 00:37:06,490 --> 00:37:11,080 except for a pittance within within a given research study. 313 00:37:11,080 --> 00:37:18,820 And yet this deeply felt duty to respond in this deeply felt duty on the part of researchers to do something. 314 00:37:18,820 --> 00:37:26,980 And secondly, there was this bridge to nowhere dilemma that that the needs were vast and the referral to care model, 315 00:37:26,980 --> 00:37:29,890 which is what we currently rely on, 316 00:37:29,890 --> 00:37:39,480 was pretty much meaningless when when research is happening in the health system and social system that is fragile or fractured. 317 00:37:39,480 --> 00:37:46,530 And this resulted in, as I've described, really chronic moral distress of feeling that they they had an obligation, 318 00:37:46,530 --> 00:37:52,350 they knew what the right thing to do was, but they didn't feel that they could respond adequately. 319 00:37:52,350 --> 00:38:02,610 So the inner circle here is kind of are the narrow view of what researchers owe to participants. 320 00:38:02,610 --> 00:38:11,850 And and we have moved beyond that in most research ethics. But this was the starting point, and that is providing essential care for participants, 321 00:38:11,850 --> 00:38:16,830 providing them compensation and reimbursement for their costs in participating in research 322 00:38:16,830 --> 00:38:21,960 and certainly attending to any harms that result from from research side effects, 323 00:38:21,960 --> 00:38:27,390 for example. And we have moved beyond this to recognise that insofar as possible, 324 00:38:27,390 --> 00:38:36,990 a research team should also offer some other benefits, especially for clinical trials, whether that's health care, 325 00:38:36,990 --> 00:38:43,200 basic diagnostic tests or other things that are linked to the research at hand and where the 326 00:38:43,200 --> 00:38:48,900 presence of a research team can perhaps bring up the standard of care around a particular issue, 327 00:38:48,900 --> 00:38:54,150 whether it's childbirth, malaria treatment, et cetera. 328 00:38:54,150 --> 00:38:57,210 But that's that's not always possible. 329 00:38:57,210 --> 00:39:04,320 We don't always have the resources to go to the second level and then to the wider level is is a much broader view. 330 00:39:04,320 --> 00:39:11,880 And I think there have been calls to think seriously about what would it mean for research institutions to take a much wider 331 00:39:11,880 --> 00:39:19,800 view of responsibility to communities where research happens and to address these more sort of systemic institutional issues. 332 00:39:19,800 --> 00:39:25,540 And that's the question I think our data raises. 333 00:39:25,540 --> 00:39:34,360 And so the question obviously is what's what's reasonable to ask of research institutions and individual researchers? 334 00:39:34,360 --> 00:39:42,130 I think our data show that it's quite unreasonable to to continue in the way that we do, 335 00:39:42,130 --> 00:39:50,890 realising the enormous burden that falls on the shoulders primarily of frontline researchers who often live a precarious existence, 336 00:39:50,890 --> 00:39:55,740 moving from one contract to another, hoping that the find the next, you know, 337 00:39:55,740 --> 00:40:01,810 next study will come along in time for them to keep their work going and feed their family. 338 00:40:01,810 --> 00:40:06,730 And they're the ones that are largely responding to immediate needs. 339 00:40:06,730 --> 00:40:11,710 So there's a lot of still, I think despite some centres taking this quite seriously, 340 00:40:11,710 --> 00:40:21,370 there still is a lack of attention to a more systemic approach to these kinds of dilemmas and needs in global health research. 341 00:40:21,370 --> 00:40:30,370 So I do want to point out that work is being done on this. And there are a number of important efforts to try to think about. 342 00:40:30,370 --> 00:40:39,070 How can especially these these institutes that are have a very long term presence and in low resource settings or countries, 343 00:40:39,070 --> 00:40:51,160 how they can partner with local NGOs, governments to try to provide some of these more institutional or social services 344 00:40:51,160 --> 00:40:56,320 or at least contribute to those or to strengthening those institutions. 345 00:40:56,320 --> 00:41:06,890 But again, this is not the dominant. Approach, and it's we still haven't sorted out how to fund a fund this model. 346 00:41:06,890 --> 00:41:11,750 So, again, coming back around to the implications of all of our data, 347 00:41:11,750 --> 00:41:19,310 I think there is this critical moral disconnect between recognising the social value of research from above. 348 00:41:19,310 --> 00:41:21,410 So going back to the global burden of disease, 349 00:41:21,410 --> 00:41:31,460 recognising that there's an important role for research in providing benefit and informing even humanitarian and development interventions, 350 00:41:31,460 --> 00:41:38,480 and yet a disconnect with felt obligation on the ground, the need for an immediate response, 351 00:41:38,480 --> 00:41:47,570 the fact that that response is probably not going to be sustainable from the population or institutional level, it's a really, really hard problem. 352 00:41:47,570 --> 00:41:58,070 I don't have the answer to this at this stage. I'm raising this as a I think, a deep tension in how we think about our obligations in global health. 353 00:41:58,070 --> 00:42:09,110 And so these sources of moral distress close in, so the the view from from below, the strong sense of empathy, the sense of duty, 354 00:42:09,110 --> 00:42:17,780 the sense of connectedness to fellow community members and neighbours is really powerful and I don't think should be ignored. 355 00:42:17,780 --> 00:42:22,340 And yet in research ethics, there's not a lot of attention to the moral emotions. 356 00:42:22,340 --> 00:42:24,260 And that's something that was so pronounced. 357 00:42:24,260 --> 00:42:30,740 And and what we found in talking to researchers over time and getting to know how they how they do their work 358 00:42:30,740 --> 00:42:38,600 and how they feel about their connexions to participants and families and communities and across the board. 359 00:42:38,600 --> 00:42:46,460 We saw an enormous amount of moral distress and it came from these three sources that the awareness 360 00:42:46,460 --> 00:42:52,040 so they were aware that there's a social value to research and that it was a longer term vision, 361 00:42:52,040 --> 00:42:59,270 that it may be downstream, that it was at the population level that was you know, they very much appreciated that. 362 00:42:59,270 --> 00:43:08,390 And yet there was a frustration that it didn't address current suffering and that they didn't have the means to address suffering. 363 00:43:08,390 --> 00:43:16,160 And then there was also distress from from the awareness that intervening, if they do intervene, 364 00:43:16,160 --> 00:43:19,940 even in a small way, they might impact the accuracy of the research results. 365 00:43:19,940 --> 00:43:25,820 So a lot of the researchers were very savvy about, look, if I do this, this is an observational study. 366 00:43:25,820 --> 00:43:35,090 I have now undermined the data. And there is an appreciation that that judgement call in a case by case basis is a really fraught one, 367 00:43:35,090 --> 00:43:39,350 and that every time they make a decision to intervene with a family or a participant, 368 00:43:39,350 --> 00:43:45,050 they may be affecting the data, thereby affecting the social value of the researchers. 369 00:43:45,050 --> 00:43:49,960 Quite an awareness of that challenge and loss is distress due to roles. 370 00:43:49,960 --> 00:43:58,160 So as I've mentioned twice now, that oftentimes the front line researchers lack the power to effect immediate change. 371 00:43:58,160 --> 00:44:07,100 They think they act and they do their best, but they felt that they didn't they weren't necessarily the right person to to effect 372 00:44:07,100 --> 00:44:11,510 a really lasting change or to address what needed to be addressed by the government, 373 00:44:11,510 --> 00:44:16,980 for example. So there was enormous distress around the roles of not feeling as though they were 374 00:44:16,980 --> 00:44:23,720 in they had the power to do what they thought was was necessary and and needed. 375 00:44:23,720 --> 00:44:29,270 And they were witnessing a cycle of unnecessary, what they thought was unnecessary suffering. 376 00:44:29,270 --> 00:44:34,970 And they felt that they didn't have the right tools. And clearly there should be better solutions. 377 00:44:34,970 --> 00:44:42,510 They weren't sure what they were, but this wasn't it. Research was, not it. 378 00:44:42,510 --> 00:44:51,060 So I think that this questioning of the social value of research by researchers on the front line is something that we need to to 379 00:44:51,060 --> 00:45:01,560 pay attention to and and think about the the knowledge that they have and the awareness that they have of these of these tensions. 380 00:45:01,560 --> 00:45:06,540 This researcher from from California said at the end, 381 00:45:06,540 --> 00:45:11,730 you leave the participant and she tells you you haven't eaten anything since yesterday, up till now. 382 00:45:11,730 --> 00:45:16,380 And you're like, OK, mother, I'm leaving. And you switch on your Land Cruiser and leave. 383 00:45:16,380 --> 00:45:24,780 But you feel like, why was I asking these questions yet? I could not have been, even if it's saving the situation today and tomorrow. 384 00:45:24,780 --> 00:45:33,960 And I think that this awareness that researchers are sharing with us and saying, look, there's something wrong with this picture. 385 00:45:33,960 --> 00:45:42,000 You've got to do better in how we respond to these urgent and immediate and very human needs. 386 00:45:42,000 --> 00:45:49,590 So the challenge that I want to to leave you with and hopefully pursue and in discussion 387 00:45:49,590 --> 00:45:54,030 is this question should research contribute to addressing structural injustice, 388 00:45:54,030 --> 00:45:59,670 as I said out at the very beginning? And if so, how can it do so effectively? 389 00:45:59,670 --> 00:46:10,290 And this is a paper from Two Thousand from Sally Bennetta and Peter Singer arguing that we need to see a shift in global health 390 00:46:10,290 --> 00:46:22,470 research towards more attention to these deeper global inequities that chasing after and addressing the diseases of poverty, 391 00:46:22,470 --> 00:46:28,890 while critical and important, needs to go hand in hand with addressing some of the structural drivers of disease. 392 00:46:28,890 --> 00:46:41,730 Otherwise, we'll have this kind of never ending cycle of research without tackling these more sort of tackling these systemic drivers of disease. 393 00:46:41,730 --> 00:46:49,540 And they're therefore not really generating sustainable, lasting solutions to health. 394 00:46:49,540 --> 00:46:57,790 This has been echoed in The Lancet that we need a radical shift from this sort of biomedical view 395 00:46:57,790 --> 00:47:05,830 of global health and more attention to social behaviour and environmental determinants of health. 396 00:47:05,830 --> 00:47:16,540 So the calls are out there. And so this is the first way in which we might address structural drivers of disease and diseases of poverty, 397 00:47:16,540 --> 00:47:23,320 and that is to rethink how we do priority setting and rethink the partnerships that Clinton 398 00:47:23,320 --> 00:47:30,370 and Street are highlighted in their book and their critique of global health governance. 399 00:47:30,370 --> 00:47:38,500 And think about, you know, is there a way to within a malaria programme, malaria eradication programme and research programme, 400 00:47:38,500 --> 00:47:47,410 is there a way to also include funding that is allocated toward these sort of institutional improvements within the health systems? 401 00:47:47,410 --> 00:47:51,070 I think it goes back to the door of of donors. 402 00:47:51,070 --> 00:48:00,790 And so those are you know, these are these would require really sort of systemic changes to how we do global health research funding. 403 00:48:00,790 --> 00:48:06,730 The second is in capacity building and training. And this is already something that a lot of these programmes do. 404 00:48:06,730 --> 00:48:13,630 And it's incredibly valuable. And I didn't want to to skip over this contribution. 405 00:48:13,630 --> 00:48:19,060 The presence of these programmes are raising the level of the standard of care and clinical standard of care. 406 00:48:19,060 --> 00:48:28,420 This is Dr. Richard McGrady, who was the lead on two of our partner studies as a researcher in obstetrics in Masad. 407 00:48:28,420 --> 00:48:40,660 And she regularly offers training programmes on obstetrics and basic skills and childbirth to the local midwives and staff in the community. 408 00:48:40,660 --> 00:48:45,700 This is true and IT area and in Kamryn Clippy as well. 409 00:48:45,700 --> 00:48:52,630 And this is something that can certainly help shift some of the structural drivers of disease that if you're raising the level of care, 410 00:48:52,630 --> 00:48:57,040 raising the skill level, that's certainly an important contribution. 411 00:48:57,040 --> 00:49:02,410 But it's not always done systematically. And and that's something I think we need to look at. 412 00:49:02,410 --> 00:49:12,220 Third is community activism and government partnerships. And again, all three of these programmes have community engagement programmes. 413 00:49:12,220 --> 00:49:17,860 A lot of them are very active in responding to community needs that fall outside of research. 414 00:49:17,860 --> 00:49:23,710 But again, the model does still tend to be individual led efforts. 415 00:49:23,710 --> 00:49:29,470 So researchers often described using their own time to address. 416 00:49:29,470 --> 00:49:33,580 In this case, they witnessed environmental exposure to pesticides. 417 00:49:33,580 --> 00:49:45,180 And one of the researchers has gotten quite active in trying to raise awareness around exposure to to deadly pesticides along the border. 418 00:49:45,180 --> 00:49:54,210 So just to showcase one of the sights and some are you they have tried to take these 419 00:49:54,210 --> 00:50:00,300 more structural challenges and the and the corresponding obligation seriously, 420 00:50:00,300 --> 00:50:09,510 and they're an interesting model to look at. So they've been really active in developing a migrant health insurance scheme, 421 00:50:09,510 --> 00:50:20,260 which is offering and filling an important gap between both the governments of Myanmar and the government of Thailand in migrant health services. 422 00:50:20,260 --> 00:50:23,790 I've mentioned training and I've mentioned activism. 423 00:50:23,790 --> 00:50:33,030 But a lot of these institutions are, I think, offer important models for how we might leverage the presence of long, 424 00:50:33,030 --> 00:50:42,630 long term research programmes and start to tackle some of these more systemic needs in these regions. 425 00:50:42,630 --> 00:50:48,300 So just to end with a critique of this and a challenge for us to think about. 426 00:50:48,300 --> 00:50:54,750 People have argued that research doesn't design isn't designed to do this sort of allocative work, 427 00:50:54,750 --> 00:50:58,680 which should be done by governments and institutions. It's meant to be investigative. 428 00:50:58,680 --> 00:51:04,440 It's meant to generate generalisable knowledge and solve health problems in that way. 429 00:51:04,440 --> 00:51:06,270 And this is stretching. 430 00:51:06,270 --> 00:51:14,850 What I'm proposing would really stretch beyond the ability of research institutions and be an inappropriate use of those resources. 431 00:51:14,850 --> 00:51:19,440 And this is something that we should push governments and public health institutions to do. 432 00:51:19,440 --> 00:51:22,830 And I think that's a really important critique. 433 00:51:22,830 --> 00:51:31,440 But I do think that the exception maybe in these contexts, low resource governments and health systems having a long term presence there, 434 00:51:31,440 --> 00:51:35,730 I think brings with it a certain responsibility and offers opportunities. 435 00:51:35,730 --> 00:51:44,670 So as I've shown, the frontline researchers in particular have an enormous amount of really valuable knowledge about what people need, 436 00:51:44,670 --> 00:51:49,350 what the challenges are, and fine grained context. 437 00:51:49,350 --> 00:51:54,360 And I think we don't always value that knowledge. 438 00:51:54,360 --> 00:52:01,740 And so I think that potentially there should be an exception to to some of these limitations 439 00:52:01,740 --> 00:52:10,410 when we think about research institutes operating in an extremely low resource settings. 440 00:52:10,410 --> 00:52:17,190 So all in there and and hopefully I've raised enough made enough controversial points either in 441 00:52:17,190 --> 00:52:25,530 the data or some of my more suggestive comments to generate some controversy and some questions. 442 00:52:25,530 --> 00:52:32,070 Again, this is we're now just stepping back from from the data and starting to reflect on the implications. 443 00:52:32,070 --> 00:52:38,460 So welcome. Any thoughts, criticisms, worries that you might have? 444 00:52:38,460 --> 00:52:41,016 Thanks very much.