 Thanks very much and it's great to be here. I'm actually presenting to you today from Oxford because I moved from Kenya where I was living for 27 years, about two years ago, and I'm now based in Oxford. So yeah, nice to have this opportunity to talk with you about strengthening ethical practice at the front line. So in the interactions between researchers and communities and participants, so the front line of global health research. So just as a quick starting point, I think it's really helpful to distinguish between ethics and ethical approval or ethics approval because quite often when we talk about ethics issues, there tends to be a rush to thinking about the systems and structures for reviewing research proposals. But actually I'm interested more broadly in the moral aspects of the production of knowledge for the good for all and that's what we're thinking of today in terms of ethics opportunities and challenges. And in terms of thinking of that broader research ethics, there are many ways to think about it and one way is to go from the ground up really and to think about what are the kinds of ethical issues that I'm encountering or are likely to encounter over the course of doing my research. While I'm doing it, what situations make me really think about whether I'm doing the right thing? And when I have those questions or those worries, what do stakeholders and the literature, the people around me guidance, what do they suggest that I could or we could all do to move in a morally appropriate way forwards? Or we can think in a more top down as it were way of thinking about what are the existing guidance and guidelines out there for ethical research and how do I apply that guidance in practice for my kind of study? So what are the issues and realities in terms of different concepts in the guidance that are likely to be faced on the ground and what does that mean about how I go about my study or respond to a situation? And in both those different ways of thinking about ethics, which of course interrelate with each other, you have to really think about context, it matters. And in global health research, what we're often seeing in conducting international research programs is relatively well resourced research organizations, whether they're based in low resource settings or based in high income countries in the global North, we're often involved involving and conducting research in contexts where there are quite obviously low income families and communities. But huge mixes of course within communities with many much more middle income and with many more opportunities and agency. And we have many different types of household setups, more extended ones, some more isolated. And often we're interacting and engaging with relatively constrained health facilities and systems. So in these kinds of contexts, those can be high morbidity and mortality rates, there can be as I mentioned really constrained health facilities, there can be big differences in norms, values, in access to technological information between researchers and communities. And there can be real differences in access to resources and power. And these types of contexts are precisely what leads to the need for research, but they also contribute to the potential for exploitation of research participants and communities in research processes. And so it's really important to take into account whenever we're engaging with ethical guidance, the context within which we're working and the complexity of those contexts and their specificity in different places. So guidance and engaging with guidelines can be valuable throughout a research project and starting it and continuing it and planning and right through to ending it. But there are so much guidance out there, it can be challenging sometimes to know which guidance to begin with, where do I start? And so one thing which is I think a useful tool for planning and reviewing and thinking about ethical issues in advance or when they come up is this document by Emmanuel and colleagues. And this basically try to bring together lots of different guidance and to highlight and organize the guidance around eight main principles that are listed in the center of this slide here. And these principles I'm sure will be familiar to many of you and the ones that are in red are the ones that were especially added for particular consideration and importance when thinking about doing health related research in developing, as it was called at the time, countries. And this guidance is really helpful because it's familiar to many committee members who review the guidance around each of these eight principles. This document has got a series of benchmarks which really help you think about how do I apply this principle in a different, in a study. And many of the kind of ideas in these benchmarks are relevant across many different types of studies, not only health related clinical research for which this was initially written. But there are still lots of questions in how you apply those particular benchmarks and ideas in terms of how that will really work in context. And you can be still confronted with challenges around how do you balance the different principles or different benchmarks or ideas within each principle. And so there's often still a lot of dilemma and debate even when you have access to quite clear and useful guidance like this. So one way to think about some of the ethical challenges and opportunities might have been to go through each of those principles and to think through what are some of the opportunities and what are some of the challenges there. But I thought that another way that I might just highlight a few in today's session is to go through some key interactions. And basically this is based on thinking about studies, international studies especially in global health are often bringing together many different stakeholders, many people, many different people or actors who have very different interests and agendas. And so this picture on this slide is basically illustrating that although we often have really nice organograms of who's get involved in a particular research activity and we might have some really nice plans of exactly how they're involved, in reality quite often global health research activities function as a kind of really complex machine. You aren't quite sure how it works but there's many different paths all of which are essential to make sure it works well. And there are key interactions that allow and are part of this machinery that's conducting international research. And I'm just going to highlight some of the opportunities and challenges across two of these sets of interactions. So I'm going to start with in terms of interactions between participants and communities. And then I'm going to talk a little bit more about across research teams working in different contexts and think a tiny bit about the broader ethics as well about relations between actors with very different levels of power. So just to highlight some of the opportunities and challenges first in the researcher interactions with participants and communities. Research communities and potential participants can have multiple vulnerabilities and needs in some of the contexts that we work in. But it's also important to recognize that they also of course have agency at the same time. This might be constrained by their vulnerabilities and needs but they have an ability to make choices, have decisions and will be keen to ensure that they gain appropriately from research and in ways that serve their interests and needs. And these might be very different from those of researchers and trialists. And as part of that it's really important to think through very carefully what kind of benefits are being given to vulnerable potential participants and wider communities from the outset. And a really key challenge that's often faced here is a tension or a paradox between what Ballantine has mentioned that if you offer participants too little then there's a potential that they're going to be exploited by being asked to do too much for research organizations and not being adequately compensated. But if you offer too much then there's a possibility that the participation might be unduly induced and so undermining for example individual choice to be involved in research which is a really fundamental ethical principle. And so what we've found with work in many different environments and drawing on the literature is it can be important to balance in all the planning and in the ongoing reflection of the course of research in thinking about what kind of benefits go to individual participants and what's possible to give to wider communities in order to ensure that everybody gains from the kinds of benefits that are brought by studies. So a tool that we've found useful in thinking about benefits and thinking about the ones that go to the participants and those that go to broader communities is this visual here. And what we see is in the middle there we think about the really almost the requirements for actually doing the study for example the drugs that might be given as part of a trial. These might be considered some kind of benefit or the compensation that is essential to give to participants should something go wrong or in order to make sure that it doesn't cost them to be involved in the research. So that all has to happen. But more broadly in thinking about how wide do you go with helping participants with other concerns that they have health needs, broader for example education, water needs, so many needs that one can encounter as relatively well resourced institutions. How much broader you go into this ancillary care and then into even broader benefits you give to wider community members we've found that throughout the study it can be helpful to think about what are the unintended consequences when you're balancing this in terms of the unintended consequences for participants, for their family members, for broader communities, for the health and social systems in which research is being conducted, for the colleagues in science, for other researchers in the future and for actually being able to learn. So what we've done a lot in international research is we've developed tools like this that really help us to weigh up really quite complex dilemmas in working with communities in ways that are fair and appropriate given that paradox that we're often having to work with. It can be crucial throughout the planning and the entire process of research to ensure that's adequate community engagement and input to inform these decisions on benefits and many other things and so community engagement is a really key issue in conducting research and it's promoted hugely for not only that it's the right thing to do itself for people to feel included and respected in studies and so for its intrinsic goals but also including stakeholders and communities it's useful in achieving instrumental goals so in order to achieve something else so about what kind of research might be important to do in the first place, for example, how to design or implement studies more appropriately, how to design as I mentioned even consent processes benefit packages so that they're appropriate in the local contexts and it can be valuable to ensuring increased participation in important studies but community and stakeholder engagement is also extremely complex and contested so we know for example that it can be difficult to know which community should you engage with who represents those communities what should their roles and responsibilities be is that clear how deep are we going in our engagement are we really engaging communities or are we just being quite tokenistic on the other hand how can we do it in ways that's pragmatic with limited research resources etc and underneath what we've seen in a lot of our research on community engagement is that the goals of the community engagement can be quite unclear and given that there are so many potential goals on the left there they can be in intention with one another and so we need to be really careful with community engagement in itself which can sometimes sound like an obvious good that we don't accidentally have perverse and unintended consequences for example just as simplest wasting time or reinforcing unequal relationships within communities or accidentally politicizing with a capital P engagements that are happening already within communities and with stakeholders so some recent research that we've done has highlighted that it's really important with community engagement to focus on building relationships rather than just simple activities and to think about these in the long term and beyond individual studies wherever possible there often needs to be much more careful planning and evaluation of community engagement in itself because it's a form of intervention and it could be having explicit theories of change is helpful and there should be an in terms of engagement maximum benefits to the health services and systems within which research is happening because sometimes there can be an undermining of those systems and services unintentionally and that it's really important and I'll come back to this for frontline research and engagement staff to be really supported by research institutions so those are just some of the opportunities and challenges in terms of the interface with communities and participants and these obviously interface with each other these different interactions in complex ways another really key issue is the kinds of challenges and opportunities of research teams working in different roles and contexts and I just wanted to show you if it's going to work I hope it will a short video here which shows frontline research staff talking about their experiences and their dilemmas over the course of conducting research so this is a video that was produced as an output from some recent international research we've conducted and can someone let me know if you can hear this okay sounds good we can hear some music and it looks like it's playing we are the frontline research staff we are the people who gather data take samples speak with participants and their families carry research messages through public engagement events some of us are senior in our research institution some are not so senior but what makes us similar is that we visit people's homes and sometimes we even land up sharing meals with them often we are working in our own neighborhoods in our own communities we listen to people's stories and struggles with interest concerns and sometimes sadness because these are stories that we know very well we often land up being the first of research in communities and a bridge between researchers and communities we have a lot of knowledge to share and face many challenges many of the challenges we face are to do with what should we do what are our responsibilities in the community these are really often difficult ethical or moral problems for us research is often done in places with a high burden of disease but also where there are many other health social political or environmental challenges there may be a drought happening water shortages protest around a political election or staff strikes in kenya communities who are facing many of these challenges during our research including a huge national nurses strike here in mason along the time yanma border my friends who join research on malaria and pregnancy are also sometimes living in fear of being discovered if they do not have documents the roads and bridges may be blocked or become unavailable because of flooding making it difficult for people to get to a research site which is also where they come to the clinic for care we also see so many difficult journeys frontline staff also often have to cross the river in high waters during rainy season so the biggest ethical challenges facing the frontline staff are around wanting to help people directly when research results may not happen quickly and benefits may not come for many years sometimes i wonder why we are gathering data when what i want to do is to help people directly by providing care or medicine something that is needed today i realize it is important to develop better health interventions but then i wish we could do more now we need more support in responding to ethical challenges in our day-to-day research in our context so that that i've just shown you half of that video but i i hope it highlights um a few uh justice concerns which are really essential to consider in conducting global health research so the first one is is and i've sort of suggested this right from the start is the importance of well-designed research targeting and involving vulnerable populations that's what health research should always or often be about better basically understand people's lives experiences or priorities and to contribute new knowledge better approaches to support and alleviate those vulnerable um those vulnerabilities or elements of them um but we have to really make sure that the research processes and procedures uh are not adding to the burdens for participants families and communities and that their agency is recognized protected and promoted as far as possible and that um especially highlighted in that video is that the frontline staff are the people who are at the interface with vulnerable populations and communities uh and they're often not given enough recognition and support and it's really important that processes are introduced to hear and respond to their voices and concerns and so an approach that we have introduced and and and tested and written about in our studies has been to establish regular ethics reflection sessions for these staff to really allow them to come together as a team with senior staff as well to share the kinds of experiences worries anxieties ethical dilemmas moral um distress that they're facing and think about and share together how this might be handled and what might be done within a research team to alleviate this the situation for frontline staff but also for the people that they're interacting with and that goes back to rethinking about the benefits that are being given for example the way the study's being designed how interactions and engagement is played out so just two last or three last slides now is just to lift it back up to say that I think what we can see in in amongst this sort of complex machinery is that frontline staff are really critical in there um and that there's a broader issue around the ethics of collaborations and partnerships which is really important and there's lots of guidance out there of principles to strengthen this as much as possible and equity including not only with frontline staff but across the global northern and southern partners involved in research has been a major concern remains a major concern there's been lots of initiatives to try to strengthen equity but there remain lots of debates and discussions and it's regularly highlighted there's a crisis in the knowledge production for global health and that the way that it's currently practice has many asymmetries in power and privilege between the global north and south and between those with more power and privilege within the global south and so there's an ongoing work thinking and discussion around how to transform global health to make it more equitable to make it less colonial in the way that it continues to function and there's increasing guidance and thinking around how to do this and that's something that I am involved with with many colleagues that's an initiative that we have funded to try and think about this and come up with practical ideas recommendations as well as to share the voices of others working in this space