So welcome to this first St Cross Special seminar of the term today.
We've got Maureen Kelley is professor of bioethics and welcome senior investigator at the
wellcome centre for humanities here at Oxford. before she gets started.
Just a quick note on the format for those that might be unfamiliar.
So Maureen is going to speak for roughly half a little bit longer than we have our discussion.
When you ask a question, if you can either raise your hand and my preferences slightly,
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.
But you're also welcome to use the chair or the Q&A function.
I think the operating. Yeah. So if you want to do that, you can also do that.
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,
didley dilemmas, moral distress and misplaced responsibilities to take away my.
Thanks so much and thanks, everyone, for joining us. I'm really sorry we can't be together in person, hopefully soon,
but I really appreciate the invitation to speak during the series and I look
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.
It was a five year empirical research ethics project across four countries, three international research sites.
And so it's split into two when I'm doing this.
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.
And I'll say more about the methods and in the project in a moment.
So we'll spend roughly half the time giving you enough from the participants in this study to
give you a sense of the ethical challenges in context and then in part to the second half,
hopefully leading to a kind of continuation and discussion. I'll share some normative reflections, stepping back from what we found empirically,
some of the dilemmas facing a particular frontline researchers and reflect on how the kinds of
questions this raises for how we think about ethical obligations in international research.
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.
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.
So there's more here than then we'll be able to cover.
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.
So before I get started, critically, I'm here on behalf of the of a large and really talented research team.
So in the first half, I'm sharing the findings. This is our outreach team from the study that I'll be referring to.
And they have all contributed fundamentally to to this project.
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,
read and understand the data in full context for each of the countries.
So, again, I'll be this is sort of a higher level view of the data across very diverse contexts.
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.
And it has a number of films that we've created as a way of understanding the research ethics context
through the eyes of frontline researchers and through the eyes of participants and community members.
So there's a lot there that I won't get to, but I very much wanted to acknowledge everybody else on the team.
So to start just by way of a background, it's it's not a surprise.
And I think most of the people joining will appreciate that.
Most of global health research occurs against the backdrop of really severe
intersectional and structural vulnerabilities where the susceptibility of people,
population,
susceptibility to disease and early death are driven by poverty and related structural factors such as political conflict and climate change,
things that are sort of outside the power of individuals to to effect change or to shift.
And yet many of the so-called diseases of poverty come from and stem from these underlying social, political, environmental conditions.
Much of global health research, priority setting continues to be driven by the really comprehensive and valuable global burden of disease,
and this is the these are the twenty 19 numbers, the most recent numbers and the aggregate disease burden in one shot.
So this is quite a powerful set of data.
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.
This is just to provide a bit of background to show really how priority setting is largely driven and to point out that,
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
disease burdens by about the same areas and red light up over and over again,
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.
And the fact that the maps look this way is really significant.
I think from the point of view of ethics and social justice and thinking about where,
you know, if you're tracking most of the most significant suffering in the world,
you're also tracking these more sort of structural or at least operating the presence of these really structural, difficult drivers of disease.
And I also want to point out that I very much appreciate and this project in this work is driven
by an appreciation of the need for research to inform every evidence based interventions,
both in humanitarian work and development, work through partnerships with governments.
And this is just one example of a nutrition programme in Bangladesh that was implemented, very expensive one, and was proved to be ineffective.
It wasn't harmful that children weren't worse off than they were before, but they weren't any better off.
And so there are a lot of programmes like this not to not to pick on UNICEF,
but this is there are a lot of other examples where the urgent need to intervene and to to
implement a programme which is very costly in terms of implementation and staff and training.
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.
And it may seem astonishing, but sometimes the need to move quickly obviates makes it difficult to to gather sufficient data.
And so there's an increasing move, an argument that we need to take the time to ensure that large scale development programmes,
large scale humanitarian programmes are better integrated with research.
And so you'll see groups like MSF integrating research within their humanitarian
aid efforts so that there's more communication between data on the ground,
what's needed and what works in context. So this is a really critical role.
There is a really critical role for research in these settings.
That's sort of a starting point, and I'm not challenging that premise,
but I'm going to raise some ethical questions and some limitations of the way in which we currently do this in these settings.
So the fundamental issue is that global health research is occurring in context of structural injustice.
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.
So structural injustices take the form of unfair patterns of advantage and unfair relationships of power,
including subordination, exploitation and social exclusion,
as well as powers and Vaden argue,
human human rights violations and deprivations and well-being that contribute to and grow out of unjust social structural conditions.
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,
which people do recognise, and the moral world of frontline researchers.
And that kind of day to day practise of research and how dilemmas of life in poverty
or in political conflict in these other contexts manifest people's felt obligations,
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.
So I mentioned the global burden of disease and a number of scholars, including Debbie Shridhar and Edinborough, have argued and described,
really mapped the way in which global health priority setting happens and have described the sort of
small number of very influential high profile government agencies or government research institutions,
organisations and public private partnerships that are funding the majority of global health research in the world.
And it's a very small number and they are primarily located in high income countries, although importantly,
there has been a rise in the last decade of of very effective community based country, low income, country driven partnerships.
Nonetheless, they argue that the majority of funding and sort of priority setting is coming from this very small group of powerful institutions.
And they raise a number of questions about this.
So what I want to point out, I'm not going to get into that debate today from Debbie and Chelsea Clinton.
But just to highlight that, one of the things missing is that despite these public private partnerships,
there really is very little attention to including in priority setting for research, these more sort of structural drivers of disease.
So whilst diseases of poverty are being tackled and being tackled very systematically,
there's much less attention on research, engaging these more sort of structural factors.
So to to shift to share new data from our project, we set out to investigate the ethical challenges surrounding everyday research.
So this is sort of after ethics approval happens, studies been approved, what happens in the field,
what happens during a clinical trial or social science study over time in low
resource settings or low resource and politically unstable settings in the study?
In this study, we focussed on maternal and child health just as a way of narrowing our our focus.
And because that was the nature of expertise on the core team and it was a large partnership across
institutions in many of the programmes in partnership with Oxfords international research programmes.
And it wouldn't have been possible if we didn't have really deep and lasting partnerships with the clinical scientists
and leads on these studies that opened up their studies to ethical scrutiny on a day to day basis over up to four years.
So really remarkable.
And they played a really important role in reflecting on thinking about some of the dilemmas that were coming up in their own studies.
Very quickly, the institutions where Camry, Wellcome Trust, which has been operating since 1989, again,
very poor district of Kenya on the eastern coast of Kenya, there for a reason,
right in the midst of a really serious disease burden and severe poverty.
Second partnership with Ari, the Africa Health Research Institute, which is in a similarly rural location in KwaZulu-Natal,
similar socioeconomic political context and really high disease burden, especially HIV.
And the third partner with Ciccolo Malaria Research Unit, which is right on the border of Myanmar and Thailand.
And they have a large number of actually the majority of the population in their malaria.
TB and other research studies are current Burmese migrants.
And obviously now with the situation in Myanmar,
they're they're seeing an influx of people fleeing the border and fleeing Myanmar to come into Thailand,
exacerbated by the border being shut down with with covid.
So we chose this unit in part because of the really trying to understand more of
the political context where the nature of vulnerability was not just poverty,
but also political persecution, lack of recognition by government.
So those are the three sites. And what we did was there there were a range of different research programmes at each
of these sites that we partnered with and by we the team that I just flashed up.
There were local ethicists and social scientists that were embedded in these studies for up to four years on.
The source was two years. The longest is still ongoing.
And some of these were clinical randomised controlled trials.
Some of them were social science studies. Some of them were psychological development studies.
So we deliberately picked a range of different types of research.
So it wasn't just clinical research and the teams were embedded in this sort of day to day work of these research studies.
But we deliberately conducted interviews with we took a kind of 360 degree view of research and talked to participants,
their family members, members of the community and households of those who were involved in research, the researchers themselves.
And these weren't just interviews. We use diaries and other ways of engaging them over time.
So this is a collective snapshot of the data that came in from the three studies,
the qualitative data that I'll be drawing on and sort the quotes that I share with you.
We also conducted participatory visual work as a another way of understanding the experiences of community members,
and I encourage you to go look at the website. We've got two videos posted in another forthcoming, and they're really powerful.
I can't convey. And these quotes that I'll be sharing with you the kind of direct voices of community members and researchers.
So please do have a look at that. So the results I want to share today really barely scratched the surface, to be honest.
It's just a massive amount of data and really interesting a number of ethical themes.
And I'm going to hone in on one thing for the purposes of this talk,
and that's to look at the experience of the frontline researchers in their own sense of
felt obligation toward participants in their and their families in the research context.
And I'm going to underscore their experiences as they related to these deeper structural vulnerabilities are drivers of disease, as I mentioned.
And one of the things that was so powerful in this work was to get to know the front line
researchers and to appreciate that they're really the face and heart of global health research.
And those who get the accolades are the peers and the, you know, the the sort of high visibility researchers.
And there's this quiet army of largely local staff.
They are often on precarious contracts. They go from one study to another.
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.
And they're just remarkable in what they know, what they do, their skills.
And so really, the most powerful thing that that we came to to learn about is their their experience.
And they're the ones that are bearing witness to the kinds of struggles that participants face outside the study.
And we explicitly wanted to know about the background and people's daily lives,
and we learnt about it directly from participants and community members, but also from the from the researchers themselves.
And part of this was to open up the way that we tend to think about our obligations in research.
Historically, research ethics has really focussed on a fairly narrow conception of what we owe to others in research,
and we deliberately wanted to widen that view through the eyes of those that are working directly with participants and understand
the wider struggles that people are facing and in a way to challenge this narrow conception of responsibility and research.
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,
but they do have the sort of moral capacity to respond.
They feel very strongly that they need to respond. So I'm going to say much more about that.
So we're witnessing and this is this is from Masad from our one of our team members and really talented photographer, Supercute Neston.
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.
And they're in their own work there.
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,
in this case, one of the malaria studies. And so this is from the the Tai team.
But this model of vulnerability was shared across the different sites,
and that is that the what people were facing in their daily lives was brought into the research encounter, not surprisingly.
And yet research ethics really doesn't quite recognise this model of of of structural sources, of vulnerability and research.
So what we found was this intersectional relationship between political vulnerabilities,
economic vulnerabilities, social vulnerability, such as gender based violence and then health vulnerabilities.
And the research is focussed on the latter. Right. The research is focussed on health vulnerabilities.
And there's an awareness that all the rest of this is driving malaria, TB, HIV.
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.
The other really important feature of the vulnerabilities witnessed by and
experienced by participants and frontline researchers was what Florencia Luna,
the Argentinean bioethicist, has called vulnerability Cascade's. This was especially true in the Kenyan findings,
where you saw the ways in which families were existing sort of on the precipice and you had these these cascade effects
where one lost job and the family or one illness would tip the scales and reinforce the vulnerability of the entire family.
And you also saw this on an institutional level or or structural level in the health system.
So while we were conducting this study in Kenya, there was a nursing strike.
And this one strike, which is a frequent occurrence in many of the countries where global health research occurs,
about one strike was really devastating and paralysing for the entire health system.
And so in the context of researchers sort of witnessing at these different levels,
these tipping points and cascade effects, where you have reinforcing harms, structural and in nature.
So I want to shift now to what the impact of witnessing these kinds of structural
vulnerabilities and the vulnerability cascades and how this manifested for researchers,
as I mentioned there on the front lines of systemic suffering, what they witnessed on a day to day basis is is really remarkable.
And they often struggle with the disconnect between the narrowness or their perceived narrowness of the study that they're there to collect
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.
So they often witness really heart rending dilemmas, not only in their own in terms of what to do,
whether to respond or not, but dilemmas within families living in poverty or living in a politically unstable situation.
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,
but being unable to adequately respond to the situation for a variety of reasons.
You don't have the resources, you're not the right person, or you don't have the power to respond to.
All of these things tend to be true for frontline researchers there.
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.
And just a few quotes from some of the frontline research staff in this case, the first instance was a public engagement officer.
People share their stories and you wonder where I even begin to help them.
What makes it unbearable is the inability to go an extra mile to help them.
It makes you emotional. And one of the researchers said so to them.
Sometimes you can feel that, you know what, I'm hitting the wall, but you just keep on trying and trying and trying.
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.
One of the remarkable things that came across was the perseverance and the kind of chronic nature of the needs that frontline researchers
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.
It just really remarkable, dogged repeated attempts to to help.
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,
is really widespread expectation that the best response in research is to refer to services.
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.
And this is kind of the model for ancillary care that is care that falls outside of the research remit or focus.
And yet in these health systems, which are fractured, struggling now more than ever with covid, this is often a bridge to nowhere.
So you make a referral for gender based violence or know gender based violence counsellors or services available.
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.
And researchers were often on their own time chasing referrals, following up, worrying about whether a young girl was referred,
whether she was able to to go to the appointment for gender based violence, all kinds of stories like that.
And so this Bridge to Nowhere is a really real and I think serious limitation to the referral care approach to ancillary care.
And there was a lot of distress, again, moral distress amongst the staff related to this,
these challenges and limitations as one of the public engagement officers said and at Ari,
there's nothing as painful as wishing you could do something for the four participants or the community.
But you cannot. We're human. And we heard that again and again.
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
were trying to respond was so broken that they couldn't obtain services for the participants.
The other really important thing that came across, as you see in a second quote, was the really strong community expectations that they respond.
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,
because most front line researchers are from and recruited from those communities because they speak the language.
They know people. They can go out in the villages and conduct research.
So there was this sense of solidarity,
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,
you ought to give us something in return.
And so this was the other other frustration is that they weren't meeting community expectations in their own communities in my site.
And we have it.
We'll have an entire paper coming out on this idea of Congi Aadhar, which roughly translates to empathy or solidarity or collective empathy.
It's a really complex, interesting, rich cultural norm.
And so this doesn't quite do it justice. But really, it was this idea of connexion of reciprocity between the front line researchers,
especially those who were current Burmese and the participants and families.
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.
We're helping each other. I'm always here. They always come here and I always look after them.
We have to help them. They also help us. That's what we tell them.
So there was this constant awareness that the benefit had to had to go both ways
and that they were benefiting from gathering data and information on TB malaria.
And they were also they needed to give something back and they needed to give something back immediately.
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.
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.
There were also a lot of worries, and this was in Masad about the ways in which research and presence of research,
despite bringing benefits of a more sort of long term nature or even direct benefits
of offering clinical care and services might inadvertently exacerbate existing risks,
in this case, political and economic risks.
So this was one of the researchers worrying about travelling across the border and losing a day of wages to come in for research.
And it takes you all day to travel some travel for four hours in one direction.
Multiple modes of transportation tractors ferry across the river walking great distances and,
you know, flooded roads and they've lost, you know, the opportunity to work in the field that day.
They may have to bring their kids with them because they don't have child care.
And at the border, they may be at risk of being caught by the police if they don't have papers.
So we heard this from a lot of the researchers who were really worried about the ways in which research,
despite being beneficial, might exacerbate some of these other risks.
So researchers had a lot of different ways of responding in the moment,
on the day, they often gave cash for four meals and they gave rides to hospital,
that they made phone calls for people, they tried their best to connect them to care.
They're also more each of these institutions, and I should emphasise all of them have robust ethics programmes.
They all have. They've been in these places for two and three decades.
They're very well connected to the communities and to the local governments and district governments.
So they did have plans for assistance. Some had small cash funds that had been pooled by donations from from staff.
They had transportation.
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.
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.
So there were lots and lots of stories of ways in which there was both immediate
assistance and more sort of systemic attempts at the local institutional level,
the research institute, to try to offer or address of some of these needs.
As one researcher in Kenya said, I've helped out many times, sometimes you feel,
what will it harm if I give this mother a thousand shillings, about what harm will it have?
And it's not because I'm so philanthropic, but the feeling that I'm leaving you without any food to eat,
knowing you told me that you have nothing to eat. Sometimes it's human.
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,
it's like an offering, like the way you give out offerings in a mosque.
That's how I'm giving you. So it clearly gets in your head that it's not from Carrie, but just a blessing.
I don't have to lie. I give them some money.
And we saw this at all of the sites where there were rules against giving cash, where there were rules against giving aid,
not rules against doing, you know, giving it as an institution, but rather as an individual.
And there are lots of examples of people sort of skirting this by saying to the participants,
this is not coming from Carrie or this is not coming from Ari.
The research institute is coming from me, Kenyan to Kenyan or South African to South Africa.
And I'm giving you this bit bit of money.
The other the other really heartbreaking stories that we heard from researchers were the ways in which on a daily basis almost,
they would witness deadly dilemmas within families in this case from one of our researchers, scholars.
Akao, I'm going to read this out because it was really quite powerful.
Three mothers talked movingly about the harsh reality of having to choose between
earning money to feed all of the children and having to care for the sick child.
And this was the child who was in the research study. One mother described a vicious cycle post discharge.
In essence, she cannot return to her job because of the child's health needs and was then unable to afford the transport costs,
the occupational therapy recommended for her child. In this case,
the main challenge for the mother was with feeding and caring for this child
was not so much the cost or access to food or even access to social support.
But he was very poor. Theodore, something that our interview team also observed on visits to the home.
Her frustration with being unable to feed her child adequately contributed to her feeling feelings of helplessness,
with her disappointment and irritation impacting negatively on her persistence in feeding her child.
And so there were lots of stories within households and within families of these really difficult trade offs of of trying to feed
one child and knowingly not being able to feed the other or enrolling one child in a study and appealing to the researchers.
Could you please enrol my other two children because of the benefits of the research?
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
researchers and research staff who were directly engaged and in either research or public engagement around research in the community.
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.
And I'm hoping this will carry over to our discussion. So, as I mentioned,
I think a lot of this bears on how we think about ancillary care or duty of care within the research context of
a rich literature on this and really important models of how to think about our obligations within research.
And what we found in the research study was that despite these models, there are a number of really serious limitations,
one of which being the disconnect between the resources available in any given study or research institute.
And the ones that we were partnered with are very, very well resourced research institutes and are probably not representative.
And and even so, there was often just a feeling that the needs were well beyond what could be offered,
except for a pittance within within a given research study.
And yet this deeply felt duty to respond in this deeply felt duty on the part of researchers to do something.
And secondly, there was this bridge to nowhere dilemma that that the needs were vast and the referral to care model,
which is what we currently rely on,
was pretty much meaningless when when research is happening in the health system and social system that is fragile or fractured.
And this resulted in, as I've described, really chronic moral distress of feeling that they they had an obligation,
they knew what the right thing to do was, but they didn't feel that they could respond adequately.
So the inner circle here is kind of are the narrow view of what researchers owe to participants.
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,
providing them compensation and reimbursement for their costs in participating in research
and certainly attending to any harms that result from from research side effects,
for example. And we have moved beyond this to recognise that insofar as possible,
a research team should also offer some other benefits, especially for clinical trials, whether that's health care,
basic diagnostic tests or other things that are linked to the research at hand and where the
presence of a research team can perhaps bring up the standard of care around a particular issue,
whether it's childbirth, malaria treatment, et cetera.
But that's that's not always possible.
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.
And I think there have been calls to think seriously about what would it mean for research institutions to take a much wider
view of responsibility to communities where research happens and to address these more sort of systemic institutional issues.
And that's the question I think our data raises.
And so the question obviously is what's what's reasonable to ask of research institutions and individual researchers?
I think our data show that it's quite unreasonable to to continue in the way that we do,
realising the enormous burden that falls on the shoulders primarily of frontline researchers who often live a precarious existence,
moving from one contract to another, hoping that the find the next, you know,
next study will come along in time for them to keep their work going and feed their family.
And they're the ones that are largely responding to immediate needs.
So there's a lot of still, I think despite some centres taking this quite seriously,
there still is a lack of attention to a more systemic approach to these kinds of dilemmas and needs in global health research.
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.
How can especially these these institutes that are have a very long term presence and in low resource settings or countries,
how they can partner with local NGOs, governments to try to provide some of these more institutional or social services
or at least contribute to those or to strengthening those institutions.
But again, this is not the dominant. Approach, and it's we still haven't sorted out how to fund a fund this model.
So, again, coming back around to the implications of all of our data,
I think there is this critical moral disconnect between recognising the social value of research from above.
So going back to the global burden of disease,
recognising that there's an important role for research in providing benefit and informing even humanitarian and development interventions,
and yet a disconnect with felt obligation on the ground, the need for an immediate response,
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.
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.
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,
the sense of connectedness to fellow community members and neighbours is really powerful and I don't think should be ignored.
And yet in research ethics, there's not a lot of attention to the moral emotions.
And that's something that was so pronounced.
And and what we found in talking to researchers over time and getting to know how they how they do their work
and how they feel about their connexions to participants and families and communities and across the board.
We saw an enormous amount of moral distress and it came from these three sources that the awareness
so they were aware that there's a social value to research and that it was a longer term vision,
that it may be downstream, that it was at the population level that was you know, they very much appreciated that.
And yet there was a frustration that it didn't address current suffering and that they didn't have the means to address suffering.
And then there was also distress from from the awareness that intervening, if they do intervene,
even in a small way, they might impact the accuracy of the research results.
So a lot of the researchers were very savvy about, look, if I do this, this is an observational study.
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,
and that every time they make a decision to intervene with a family or a participant,
they may be affecting the data, thereby affecting the social value of the researchers.
Quite an awareness of that challenge and loss is distress due to roles.
So as I've mentioned twice now, that oftentimes the front line researchers lack the power to effect immediate change.
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
a really lasting change or to address what needed to be addressed by the government,
for example. So there was enormous distress around the roles of not feeling as though they were
in they had the power to do what they thought was was necessary and and needed.
And they were witnessing a cycle of unnecessary, what they thought was unnecessary suffering.
And they felt that they didn't have the right tools. And clearly there should be better solutions.
They weren't sure what they were, but this wasn't it. Research was, not it.
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
pay attention to and and think about the the knowledge that they have and the awareness that they have of these of these tensions.
This researcher from from California said at the end,
you leave the participant and she tells you you haven't eaten anything since yesterday, up till now.
And you're like, OK, mother, I'm leaving. And you switch on your Land Cruiser and leave.
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.
And I think that this awareness that researchers are sharing with us and saying, look, there's something wrong with this picture.
You've got to do better in how we respond to these urgent and immediate and very human needs.
So the challenge that I want to to leave you with and hopefully pursue and in discussion
is this question should research contribute to addressing structural injustice,
as I said out at the very beginning? And if so, how can it do so effectively?
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
research towards more attention to these deeper global inequities that chasing after and addressing the diseases of poverty,
while critical and important, needs to go hand in hand with addressing some of the structural drivers of disease.
Otherwise, we'll have this kind of never ending cycle of research without tackling these more sort of tackling these systemic drivers of disease.
And they're therefore not really generating sustainable, lasting solutions to health.
This has been echoed in The Lancet that we need a radical shift from this sort of biomedical view
of global health and more attention to social behaviour and environmental determinants of health.
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,
and that is to rethink how we do priority setting and rethink the partnerships that Clinton
and Street are highlighted in their book and their critique of global health governance.
And think about, you know, is there a way to within a malaria programme, malaria eradication programme and research programme,
is there a way to also include funding that is allocated toward these sort of institutional improvements within the health systems?
I think it goes back to the door of of donors.
And so those are you know, these are these would require really sort of systemic changes to how we do global health research funding.
The second is in capacity building and training. And this is already something that a lot of these programmes do.
And it's incredibly valuable. And I didn't want to to skip over this contribution.
The presence of these programmes are raising the level of the standard of care and clinical standard of care.
This is Dr. Richard McGrady, who was the lead on two of our partner studies as a researcher in obstetrics in Masad.
And she regularly offers training programmes on obstetrics and basic skills and childbirth to the local midwives and staff in the community.
This is true and IT area and in Kamryn Clippy as well.
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,
raising the skill level, that's certainly an important contribution.
But it's not always done systematically. And and that's something I think we need to look at.
Third is community activism and government partnerships. And again, all three of these programmes have community engagement programmes.
A lot of them are very active in responding to community needs that fall outside of research.
But again, the model does still tend to be individual led efforts.
So researchers often described using their own time to address.
In this case, they witnessed environmental exposure to pesticides.
And one of the researchers has gotten quite active in trying to raise awareness around exposure to to deadly pesticides along the border.
So just to showcase one of the sights and some are you they have tried to take these
more structural challenges and the and the corresponding obligation seriously,
and they're an interesting model to look at. So they've been really active in developing a migrant health insurance scheme,
which is offering and filling an important gap between both the governments of Myanmar and the government of Thailand in migrant health services.
I've mentioned training and I've mentioned activism.
But a lot of these institutions are, I think, offer important models for how we might leverage the presence of long,
long term research programmes and start to tackle some of these more systemic needs in these regions.
So just to end with a critique of this and a challenge for us to think about.
People have argued that research doesn't design isn't designed to do this sort of allocative work,
which should be done by governments and institutions. It's meant to be investigative.
It's meant to generate generalisable knowledge and solve health problems in that way.
And this is stretching.
What I'm proposing would really stretch beyond the ability of research institutions and be an inappropriate use of those resources.
And this is something that we should push governments and public health institutions to do.
And I think that's a really important critique.
But I do think that the exception maybe in these contexts, low resource governments and health systems having a long term presence there,
I think brings with it a certain responsibility and offers opportunities.
So as I've shown, the frontline researchers in particular have an enormous amount of really valuable knowledge about what people need,
what the challenges are, and fine grained context.
And I think we don't always value that knowledge.
And so I think that potentially there should be an exception to to some of these limitations
when we think about research institutes operating in an extremely low resource settings.
So all in there and and hopefully I've raised enough made enough controversial points either in
the data or some of my more suggestive comments to generate some controversy and some questions.
Again, this is we're now just stepping back from from the data and starting to reflect on the implications.
So welcome. Any thoughts, criticisms, worries that you might have?
Thanks very much.