National Institute for Health and Care Research
National Institute for Health and Care Research
The 'Leave No One Behind' agenda as it applies to community engagement and involvement in global health research
This episode of the NIHR podcast focuses on community engagement and involvement (CEI) in global health research and the 'Leave No One Behind' agenda.
The podcast is hosted by Erica Nelson, a Post-Doctoral Research Officer at the Institute of Development Studies (IDS). Erica is in conversation with invited experts on how they undertake CEI and what it means to Leave No One Behind in practice.
In this podcast you’ll hear from Rebecca Racheal Apolot, Research Fellow, Department of Health Policy Planning and Management, Makerere University School of Public Health, Uganda; Sabrina Rasheed, Associate Scientist, iccdr’b, Bangladesh; Sana Contractor, public health researcher, practitioner and activist, Centre for Health and Social Justice, India; and Walter Flores, Executive Director, Centre for the Study of Equity and Governance in Health Systems, Guatemala.
NIHR has partnered with the IDS to produce a series of learning resources to support researchers to deliver meaningful, outcomes-based CEI. The full package of resources, including a learning guide on the 'Leave No One Behind' agenda that supports this podcast, is available at: https://www.nihr.ac.uk/researchers/apply-for-funding/how-to-apply-for-global-health-funding/community-engagement-and-involvement.htm.
For more information about NIHR global health research, follow us on Twitter at @NIHRglobal.
Transcript:
https://docs.google.com/document/d/1DDsxZj0a-QIjT3dUfUUnBAI1MOIjTJkL3dwloJInMic/edit?usp=sharing
Welcome to the podcast of the National Institute for Health Research, the NIHR. In this episode we're going to talk about community engagement and involvement (CEI) in global health research, and the 'leave no one behind' agenda. I'm Erica Nelson. I'm a researcher at the Institute of Development Studies, and this podcast is part of an ongoing collaboration with the NIHR to produce a series of learning resources on CEI. The final installation of this series is considering the 'leave no one behind' agenda as it applies to community engagement and involvement in practice. So we thought we'd try something a little different, a little bit conversational, and bring in some invited experts to talk about their own work. The people we brought in to talk to us today are Rebecca Racheal Apolot, who's a research fellow in the Department of Health Policy Planning and Management at the Makerere University School of Public Health in Uganda. We're also going to be talking with Sabrina Rasheed, who's an associate scientist at iccdr'b (International Centre for Diarrhoeal Disease Research) in Bangladesh. We've got Sana Contractor, who's a public health researcher, practitioner and activist affiliated with the Community of Practitioners on Accountability, and Social Action and Health, otherwise known as COPASAH. And we finally have Walter Flores, who's the executive director of the Centre for the Study of Equity and Governance and Health Systems in Guatemala, as well as the global convener of the COPASAH network. So the first thing I want to hear you talk about is language, how you even define or understand what a 'leave no one behind' approach means in the context of community engagement and involvement generally. And as that relates to research specifically, first let's hear from you Sabrina.
Sabrina Rasheed:The way I myself think community engagement in terms of leaving no one behind is the goal of USC(universal health care coverage). So if we really want to think about, you know, covering all the populations that we need to cover for with health programmes, then we need to cover everyone and we can't afford to have someone left behind within the community.
Erica Nelson (HOST):That's really interesting Sabrina. Sana, do you want to come in with your thoughts?
Sana Contractor:To me, it's not so much about who is left behind- it's about why people are left behind. And my... so to me the understanding of leaving no one behind is not about making more aggressive efforts to reach those who have not, for instance, had the benefit of access to services. But to examine why it is that we see inequities in health care, and that need not necessarily be due to the same reasons for everybody. And I think there are certain common processes that result in inequities. And to me, the value of leaving no one behind as a slogan is that it forces us to examine those processes.
Erica Nelson (HOST):OK, I'd like to hear about your experience, Rachel.
Rebecca Racheal Apolot:For me, leaving no one behind - in terms of community engagement - is is to try and make sure that everyone's voice is represented, that everyone's voice irrespective of their social status in in the community, irrespective of their disability, irrespective of their age and irrespective of their gender. But making sure that everyone is... is ideally represented and meaningfully so that their participation actually meets their needs.
Erica Nelson (HOST):And finally, Walter, do you want to share your perspectives grounded as it is in decades of working with indigenous people?
Dr Walter Flores:Yeah. So the"leave no one behind" is generally used under the frame of the development aid. So basically it refers to people, marginalised people. But when we are trying to apply it to research, because research is about knowledge production, I think, leave no one behind is not only about who or what is being left behind, because research about knowledge is what has been reported to me. When we talk about research, we should not not only talk about who is being left behind, but what are we leaving behind? And the what, for me, is indigenous knowledge, indigenous wisdom methods, and also the values and the concerns of people that also actively produce knowledge - but they do not fit into the western model of academic knowledge. So what we are seeing is that we are concerned about the who has been left behind, and we are ignoring what is being left behind. And I think, specifically for research, we should address both.
Erica Nelson (HOST):I think Walter, you raise really important points, not just about who is left behind, but what is being left behind in global health research. And that being meaningfully inclusive of indigenous knowledge and perspectives requires challenging the status quo, of whose knowledge counts. So now I'd like to hear your reflections on what you found to be the biggest challenges of inclusivity that you faced in your work where you really run into some walls? Can you talk about that?
Dr Walter Flores:Yes, so one of the principles that we follow up in our research is that whatever we do about research, we negotiate the terms of the research with the communities, we negotiate what is the purpose of the research, what's going to be the goal, what we're going to do with it. And that's of key importance - I made it a very central part of inclusivity for also engaging in research. But this can only be done, if those population groups are organised, you can only negotiate because they are organised, and they have some level of representation and legitimacy among the people that share that identity, those characteristics. The problem with that is that those being left behind in most cases are the most vulnerable, or people in the most extreme situations. And as a result of their extreme vulnerability they are usually not organized, and they are usually not even seen in in many of the daily lives of communities. So the challenge there is when you are trying to negotiate the terms of the research, with people in extreme vulnerability, that they are not organised, and they may not even be in a situation to negotiate. So my concern, and the concern of my team, is when we are facing extreme unequal power as well, that even if we are aware that you will try to do something we, we can really do much about the extreme a difference in terms of power, the extreme asymmetry.
Sana Contractor:I think I stand at this very, I mean, I feel like... even as I advocate this way of doing research, I struggle with doing research in this way myself. And it's part of how one has been trained and a lot of unlearning, that goes into it. But also as an advocate or an activist, you come in everything with a sort of... with an agenda. And part of research is being open to other agendas and other ideas. And being genuinely curious about the world, which also means acknowledging that where you're coming from, even though you are probably more self aware than other people, but it also means that I find myself confronting my own biases several times. And there is no denying the fact that the location that I individually occupy, in the place where I live, has a lot to do with what kind of research I read, what I have learned from, what I consider respectable, what I consider actual authoritative theory, is is clouded by where I come from and who I am. And I have found myself very often struggling with these harsh truths when they're shown to me.
Erica Nelson (HOST):One of the questions I had as well was how your thinking has changed in terms of working with marginalised vulnerable groups or, you know, the the "left behind" in the context of the pandemic or what, you know, how your thinking has changed about the importance of this type of work over the course of... of witnessing what you know, the impacts of COVID so far, and what new insights do you think you've gained, if any, about community engagement and involvement in global health research?
Rebecca Racheal Apolot:I can only say one thing is that the community has the power. They have the power to change everything. As a researcher, you are literally incapacitated - the people you work with are your most important capital.
Sabrina Rasheed:For ages we have been talking about how people are being left behind and the health systems are not addressing a lot of needs for huge groups of population. And it has to be, you know, the services need to be extended beyond the maternal and child health. This conversation has happened over time, we have talked to the government at different points. But during COVID I think, what what was very clear, you know, when the gaps in the system became absolutely magnified, because suddenly, you know, they are talking about the vaccinating people or providing testing facilities for everyone with symptoms - so how are you going to reach people to tell them?
Dr Walter Flores:First, I see it as a welcome first step, the publication now that we have seen in the past, say, a couple of years, but more importantly, as a result of the COVID pandemic about this question of decolonising knowledge. I think that's a very important step and definitely the pandemic helps that. But my concern is that it is going to stay at that level - yeah, there's gonna be attention, but then nothing changes in terms of the architecture of organisations providing funding. To me, I would say that this is taking off more when we start seeing changes to the architecture of these institutional organisations providing funding, but also changes to the protocols in which we provide the ethics, the ethics of research, because a lot also has to do with the ethical research, which is very much in my view... is very much arranged to protect western researchers, from any issues. But it's not really arranged to include - and to listen to - those populations that have been researched.
Erica Nelson (HOST):So the audience in this seminar, people who are working in like a wide range of geographic contexts, both UK researchers and non-British researchers, but from any number of potential regions that, you know, qualify for this Overseas Development Assistance, and therefore can can apply for funding through the scheme. Researchers with a wide range of disciplines, some who have a depth of experience doing community engagement and involvement in their work and for some for whom it is brand new. So thinking about sort of this like, real spectrum of possibility, what would you say to people who are really new to doing community engagement and involvement in their work - in terms of how they might go about thinking about this question, I'll leave no one behind?
Sabrina Rasheed:I think one of the most critical things is to have enough engagement at the stage of formulating research questions. And I think a lot of people don't do that, because they start thinking about community engagement when they have to do the actual implementation. And often the research question is set way before it even goes into that whole process of an ethics review, so on and so forth. In fact, it's probably probably quite set at the time of writing the proposal. And so nobody wants to tamper with that. But I think people would benefit greatly by really being curious at that stage and trying to find new ways of thinking about... I'm not saying change your research issue completely. But if you are trying to understand access to nutrition and a tribal community in India, for example, try to ensure that your research questions are in line with what with what people's understanding of that issue is, wherever you're doing the study, for instance. And if you are able to do that, it makes the whole process of engagement more fruitful for you, as well as for the community themselves. One important lesson was to be... to understand there are power structures and there are things within the society that by design leaves people behind, so it's not bad or good, you know - it just is. I... especially for health, it's easier to sort of push those boundaries partly because, you know, the public system is there and people don't have a lot of resistance about treating ill people you know... it's probably good and it's understood, and you know it's not a lot of... there's not a lot of pushback. But there might be other places where it might become contentious and problematic but not so much in health.
Erica Nelson (HOST):Do you feel like then the health I mean... and this might be actually specific to both the research and the public health culture in Bangladesh that there is....that's true everywhere?
Sabrina Rasheed:In Bangladesh at least, I didn't find this was an issue yet. But definitely sensitising people, from an outsider's perspective, about what you see in terms of structure that creates barriers for people is very important, always trying to push that boundary, that envelope, and bringing those issues in the forefront of every conversation. So people start thinking that you have to get the communities to start thinking about the existing processes that leave people behind.
Erica Nelson (HOST):Rachel, would you like to add something?
Rebecca Racheal Apolot:Yeah, yeah. So one thing is that, first of all, in anything that you're going to study, you need to completely understand who are the stakeholders involved. And understand who is affected by this problem? And who affects this problem?
Dr Walter Flores:I think we should have a sort of guidance with the question for reflection that researchers should ask themselves, like the ones that we have used in the past that I will mention. Is my research going to change, or is it going to contribute to change the situation? I mean, if you say yes, why? Is it because you're saying so, or is it because the the population group or the community engaged told you so? If you said no, I think it's great, my research is great, but did the community tell you so? Oh, you say, no I haven't asked. OK, so the next step is try to get from the community or the population group what is the views about the research, and once you explain to them what is aiming to achieve, whether they think that it is sufficient for them to engage in this process.
Erica Nelson (HOST):So this has been a really interesting conversation, we could talk on this topic for hours, but we need to wrap things up. So I want to thank Walter, Sana, Sabrina, Rachel, for talking to us today. And to all the people who've contributed to the community engagement and involvement learning programme that we at IDS have developed, together with the NIHR. For those of you listening, if you'd like to learn more about community engagement and involvement, there are a lot of resources on the NIHR website at www.nihr.ac.uk. You can find out more about the NIHR Global Health Research Programme via the Twitter account @NIHRglobal. This has been an episode in the NIHR podcast series. I'm Erica Nelson, thanks for listening.