Inclusive CEI in health systems research

This is the sixth episode of our series, Spotlight on community engagement and involvement (CEI): Leaving no one behind.

Host, Dr Saumu Lwembe, is joined by NIHR-funded researchers, Dr Munzer Alkhalil, Research Fellow at London School of Economics, and Professor Getnet Tadele, Professor at Addis Ababa University, who share their experiences of conducting CEI as part of their health systems research.

Together, they discuss what is meant by leaving no one behind, the differences between doing CEI in health systems research compared to other types of research, challenges, the impact of CEI on their research, and provide tips for leaving no one behind in CEI. 

Get to know our speakers

Dr. Munzer Alkhalil is a medical doctor and research fellow at LSE IDEAS. He co-founded and led the Idlib Health Directorate in Syria from 2013 to 2020. In addition to his medical and research work, Munzer has played a significant role in community empowerment by supporting the development of local councils, documenting war crimes, and leading advocacy campaigns to protect healthcare in conflict zones. He also co-led the community engagement and involvement strategy for the NIHR-funded Research for Health Systems Strengthening in Syria (R4HSSS). His research focuses on improving health systems and humanitarian business models in conflict settings. 

Professor Getnet Tadele is a distinguished academic whose work bridges the fields of health and social sciences, with a particular focus on global health challenges. His key areas of interest include neglected tropical diseases (NTDs), childhood studies, and sexual and reproductive health. Getnet's global academic engagement has taken him to more than 100 destinations worldwide, where he has participated in teaching, research, examinations, conferences, and workshops. In addition to his academic achievements, Getnet is a dedicated community mobilizer, contributing to the construction of schools and bridges in Ethiopia. He was co-investigator of the NIHR-funded Social Sciences for Severe Stigmatising skin conditions (5S) Foundation.

Dr Saumu Lwembe is an expert in the involvement of people and communities in health and care research. As an assistant director at the NIHR, she has a key role in ensuring that diverse citizens can work in successful partnership with NIHR and with the research projects that NIHR funds, both in the UK and in low and middle income countries. Saumu has significant experience in global public health policy and systems, with a strong focus on narrowing the gap between ambition and action. She holds a Doctor of Public Health degree from the London School of Hygiene and Tropical Medicine.

Please note this episode was recorded in early 2025. The views and opinions expressed in this podcast are those of the host and guests and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.

Transcript

Episode 6 - Inclusive CEI in health systems research

Host: Saumu Lwembe

Guests: Munzer Alkhalil, Getnet Tadele

Saumu Lwembe 00:00

Hello, listeners, my name is Saumu Lwembe. I work for the National Institute for Health and Care Research, an organisation based in the United Kingdom that funds research both in the United Kingdom and globally. Welcome to our podcast series ‘Spotlight on community engagement and involvement: leaving no one behind’, exploring how we involve and engage people and communities in health and care research, with particular focus on those who are most marginalised and vulnerable. 

This is the sixth episode in this series, and we will focus on inclusive community engagement and involvement in health systems research. The aim of this episode is to discuss and explore inclusive engagement of marginalised communities in health systems research and any unique challenges faced and approaches that are used. 

Health systems refer to institutions, facilities, services, and people that deliver health care. These systems can vary greatly by country in terms of organisation, approach and service provision. Health systems research aims to inform health policy, strengthen health systems and improve access to health services. The focus is usually not on one health condition or a specific patient group, but instead, on organisational levels and structures that make up the health and care delivery in a country/region. This may include leadership and governance, financing, health workforce, information systems, quality of care and health service delivery, or health services and impacts of broader determinants of health.

Now, as you can see, it can be debated, therefore, on who the community that should be engaged in this type of research is, and how this may or may not be different to engagement in other types of research.

Today, I'm joined by Dr. Munzer Alkhalil who is an orthopedic surgeon and a co-founder of many quasi-governmental institutions and hospitals in Syria, including the first field hospital established in 2011. 

Dr. Munzer is a research fellow at the London School of Economics. He is also a co-lead on community engagement and involvement on the NIHR Research for Health System Strengthening in Syria, which aims to produce a model on health system strengthening in the context of Northwest Syria, which will be applied in other contexts affected by long and complex conflicts.

My second guest is Professor Getnet Tadele, who is a professor at the Department of Sociology in Addis Ababa University in Ethiopia. Professor has been working on the interface of health and social science for over two decades with a particular focus on neglected tropical diseases, sexual and reproductive health issues, children and youth issues. Professor Getnet Tadele is the co-principal investigator on the NIHR Research on Social Sciences for Severe Stigmatised Skin Conditions delivered across Ethiopia, Sudan, and Rwanda.

From the two of you today, we are keen to tap on your wisdom to understand if there's any challenges involving community perspectives in this type of research. And, most importantly, how can researchers be inclusive in their CEI in health systems research and ensure that no one is left behind.

So to start us off, Dr. Munzer, could you tell us a bit about your research in health systems and how you've worked with communities, especially those who are marginalised or vulnerable?

Munzer Alkhalil 03:28

Well, thank you very much for having me today. So, I used to work for more than a decade in conflict affected area as a medical doctor and head of Idlib Directorate in Syria, and my research focus on improving the humanitarian business model and health systems in complex settings.

During my work I noticed that we have marginalised areas which are conflict affected areas. And within these marginalised areas we have marginalised groups, such as, minorities. And within these marginalised groups we have marginalised individuals such as, people with disability. So, for me, I developed an effective communication plan with stakeholders at different levels; at the level of authorities, local communities and also individuals. 

And to give you an example about that, I had a discussion with people with disabilities in Syria about like their concerns and needs in this area, and they told me that one of their biggest concern, (is) that there is not an official institution to take care about their needs, and you know that they have a lot of needs. So, I published like an article about that, and after that, based on this article, I had a discussion with the local health authority there about this point, and we agreed in this meeting that they are ready to establish a department for people with disability, and from our side we provided the technical support, and after a while Idlib Directorate established a department for people with disability, and within a month this department was able to create another like institution, to take care about people with disabilities, and the number of this organisation reached around 3,000 person within a month. 

So, this is a practical example on how you can benefit from inputs, from direct communication with individuals, or with like community groups, especially marginalised groups, to your research to like shape, your research, and how you can take after that this research is this, like findings and recommendations to a policy level to implementing them. 

So, I think our responsibility as researchers from this area, not just to publish research like in peer reviewed journals, but also to benefit from direct communication with marginalised groups and then to take the findings to the implementation level to like improve the situation.

Saumu Lwembe 06:11

Thank you so much Dr. Alkhalil, and one of the things you mentioned there around working with marginalised communities, and I know in the pre-podcast conversations we had with Professor Getnet, I know this is something that is really close to your heart. So, Professor Getnet, could you tell us a bit about your research as well, your health systems research, and how you've worked with communities, especially those that are marginalised or vulnerable?

Getnet Tadele 06:35

Thank you so much, Saumu. My research has been revolving around mainly three issues, that is, sexual and reproductive health issues, children, childhood studies, neglected tropical diseases, and in all this the focus has been always on marginalised (people), I mean, you know, sex workers, street children, communities in remote rural areas. And it's not only my research, but also even my community engagement work, which is outside of the research, has also focused on underserved rural communities, very remote rural communities, building schools and other facilities.

In the past, particularly since 2019, I've been engaged in [in] an NIHR-funded project known as Social Sciences for Severe Stigmatising Skin Conditions, 5S Foundation. And with this project we [we] trained a number of PhDs, Postdocs, and [and] even supported also Master's students. But, another chunk of this project was public engagement or community engagement, and we did community engagement at three different levels. One at the level of [at the level of] the policy, the national and global policy level engaging policy makers through workshops, policy dialogues, conferences, and all kinds of different engagement strategies. And then at the community level also, we have been doing, you know, community of practice, school-based interventions, training health extension workers and using also diverse communication tools like, you know, theatre, documentaries, film, music, blog articles, all kinds of different, you know, social media, also telegram, Twitter, Facebook. We have been engaging, you know, communities at different levels, particularly to reach those who cannot be reached through this normal communication channels, traditional communication channels or academic interventions. We have been using different, culturally relevant communication tools to engage with the communities, and through that we have tried to address neglect of these communities, neglect of the diseases.

So, we have been working on three diseases: scabies, podoconiosis and mycetoma. Mycetoma was only in Sudan, but scabies and podoconiosis in Rwanda and Ethiopia. So, we have tried to address neglect of these three diseases, neglect of also communities or patients. And, more importantly, I think my work - I need to highlight this - that my work is from a social science perspective. So, health systems or health issues usually are addressed from public health perspective, a typological perspective, but our work has been always [on] from social science lens which makes it a bit unique and innovative in a way that, you know, when you talk about health systems and health research, health intervention, usually it's always from public health perspective, epidemiological perspective or medical perspective, biomedical approach. But, this, our approach has been social science; using social science techniques, social science theories and methods, you know, to do research as well as engage the public, that's what we have been doing. And I think it has really illuminating new insights and new ideas. The approach we use it has been, you know, taken up by the government, and there is so much buy in from the government and the community.

Saumu Lwembe 10:24

Yeah, thank you so much for that, Professor Getnet. I think that's really insightful, and [and] one of the things that when you're speaking I was thinking to myself around the definition of the leaving no one behind, the sustainable development goal of leaving no one behind, and it occurs to me that the work that you've done in terms of making sure that the marginalised communities in the different settings are engaged in research really does fit around that. But, for the interests of our academic audience, could you tell us more, perhaps, what does leave no one behind mean to you, and especially how that differs as well in the different geographical settings that you've [you've] worked in, in the different countries?

Getnet Tadele 11:05

Yeah, thank you so much. Leaving no one behind means mainly actively ensuring that the most marginalised, overlooked vulnerable groups, the poor, have equal access, equal opportunity to health services, to inform health information, to any other opportunities, and they have also equal access to participate in research and policy process.

And, as I told you, my work has always focused on marginalised groups, sex workers, street children, women, children, all these are, you know, somehow marginalised. And in our research also we have addressed refugees. You know, one of our PhDs was working among refugees from Sudan in Gambela region. Another Ms (Masters) student was working with church students, also marginalised group, you know, they - we call them ‘yeqolo temari’ locally - church students. Still, we [we] have been also working with street children and communities with school children. So, we have tried to, at least, you know, address vulnerable and overlooked groups, And, we have also tried to target remote underserved communities with interventions and empowering them to be part of the solution through training local health workers, involving youth through schools.

We have also used inclusive communication tools, you know, so that no one should be left behind. Inclusive, culturally relevant communication tools that really target, you know, different levels of literacy, cultural understanding, such as music, theatre, brochures, posters, documentaries, to reach those who might not engage with formal health structures or academic interventions or other traditional health information communication methods.

Saumu Lwembe 13:12

Thank you so much, Professor Getnet, that [that] was really insightful. I will turn it over to you now, Dr. Munzer Alkhalil. Based on your experience, I think, in undertaking different types of research, do you think there are any differences between doing community engagement and involvement in health systems research compared to other types of research?

Munzer Alkhalil 13:31

Yeah, actually, there are many differences. Research related to health systems should take into consideration the interest of different stakeholders at different levels, including health authorities, community groups and individuals. Having said that, it is very important for any researcher to understand power dynamics in this area. You need to understand who has the decision-making power and who has the non-decision making power; who controls the agenda and also who can influence these decisions. On the other hand, you need to understand different power types, who has the leadership power and interfere in the health system, and who has utilitarian power, and who has normative power. 

So, to be able to produce and write practical recommendations and give an opportunity to this recommendation to be implemented on the ground, it is very important actually to understand these power dynamics. Also, you need to adopt very context-based research approach, and let me give you an example about that. 

There are a lot of frameworks to evaluate health governance in low and middle income countries, however, none of them is suitable to evaluate health governance in conflict settings, because they have three main limitations. The first one, they suppose that there is a legitimate government in place which is not the case in many large conflicts; sometimes we don't have a government, we have something we call it governance without a government. And also, even if we have a government, sometimes the legitimacy of this government is under question, especially if this government is party to the conflict. 

Number two, they suppose that we have one health system, which is also not true, because sometimes we have multipolar health systems.

And number three, they suppose that we know what different rules and responsibilities are for stakeholders, which is again not true. We have, in complex settings, traditional rules and responsibility, so you can't actually bring any framework to be applicable or to apply it in complex settings, for example, when we speak at the health system research level. 

So, two main points. The first point, you need to understand power dynamics, and you need to develop (a) very specific context based approach, and this is not the case for other type of research. For example, if you develop a medicine for like diabetes patients, you can develop this medicine in the UK, and use it probably in Syria or in India, but you can't improve community and engagement strategy in the UK and use it in Syria and [and] India, for example, without huge adaptation to this specific context and without understanding the power dynamics in the area. 

Saumu Lwembe 16:43

Thank you so much, Dr. Munzer, and I think you reflected on something really important there, knowing that a lifting and shifting approach will not always work, knowing that what works in one context will not necessarily work in another, so one has to find the principles in that approach, and then figure out a way how those principles will find expression in the different settings. So, [that, that's really] that's really important, thank you so much for that.

Still based on [on] your work around community engagement and involvement, and of course, [you] you've reflected a lot around the conflict settings, which is quite interesting in that, and [and] I think you've already touched on [on] my next question, but I wondered a little bit more, have you encountered any challenges for including communities, and especially those (that) are marginalised in a, you know, a conflict related setting in your health systems research, and if you have, how have you addressed these?

Munzer Alkhalil 17:37

Yeah, actually, I have faced many challenges regarding the community engagement and involvement approach in my health system research, including power imbalance between international and local partners, and within that, power imbalance between international and local researchers, unfair policies and procedures, and in some cases, lack of ethical considerations when working in conflict settings. So, I'm trying to address some of these challenges by opening transparent discussions with donor, international, national and local stakeholders, including discussions about the localisation and decolonisation of research projects. So, I prefer to name things, sometimes I just tell my colleagues “look, guys, we have very colonial approach here, we need to think more about how we can in reality empower local researchers because they are the most like able people to communicate with marginalised groups in their community”. 

Finally, actually I'm working with local actors in the health field to encourage them to take their part in this discussion. You know some marginalised groups, or even like local authorities and local researchers, because they live in very vulnerable situations for a very long time, they don't believe that they have the capacity and the legitimacy actually to (be) involved in meaningful discussion with international organisations and donors, to speak about their rights [to speak about their rights] in having like an equal partnership with international organisation(s). So, I guess we need to encourage them to take their part in this meaningful discussion.

Saumu Lwembe 19:31

Thank you so much. And [and] capacity strengthening is really something very important for us, and we're very keen on that; I think it's a really important area you raised. Professor Getnet, if I can come back to you, you've talked a lot about using diverse communication tools. I wondered, how do you adopt your involvement and engagement approaches with communities to make sure that the inclusivity in research is obtained?

Getnet Tadele 19:56

As I said earlier, we have ensured inclusivity by using multiple communication strategies that cater or address to different literacy levels and cultural preferences that engages all kinds of, you know, different sectors of the population starting from policy makers all the way down to community level.

Additionally, we [we] are working with school structures to engage children in a way that, you know, they can serve us as change agents. We trained school students, teachers, particularly students, can be used as change agents. They can change also their parents, they can reach out to their parents. We have also trained health extension workers to reach those living in remote areas. And more importantly, we [we] have also created (a) community of practice in order to foster community ownership which allows stakeholders from different sectors to collaborate/share ideas and co-create solutions. We brought together, you know, religious leaders, health extension workers, people from the government, elderly people, women, different local associations, all these were brought together, and we facilitated, you know, how they can collaborate, share ideas and co-create solutions.

So, our training and intervention of all these different stakeholders somehow created (an) inclusive approach in [in] community engagement, and we [and we] have reached so many people through different communication channels

Saumu Lwembe 21:32

Thank you, and just on that element around inclusive approach in community engagement, what difference has that made to your research and the communities you work with?

Getnet Tadele 21:41

Inclusive community engagement has made this impact, first by improving the trust between us and the communities, which has in turn increased participation and health seeking behavior, which has also increased, you know, research uptake. We [we] involved with them early on and continuously, you know, starting from by presenting the proposal for different stakeholders, and that increases, you know, research uptake and involvement and engagement and sustained engagement. In fact, by involving the community in multiple ways which I outlined before by so different [different] ways, we also increase it somehow, you know, the role of the importance of social sciences. You know how social sciences could play a role in [in, in] fighting, in [in] controlling neglected tropical diseases. We also tried to increase awareness, health seeking behavior, knowledge, attitude, and practice, and through that also reduction in stigma, that was our main focus of, you know, 5S Foundation, and we improved awareness and knowledge. 

Our use of participatory approach also has strengthened community capacity and created more sustainable health interventions. For the research, when you talk about from the research angle, inclusive CEI means that we have also designed more relevant community-centered interventions, and generate evidence that is directly applicable to the context in which these diseases occur. It also means that the voice of marginalised groups are heard in policy dialogues and enhance the relevance of our advocacy efforts.

So, in a way, it has really created, you know, mutual trust. What happens in most of the research is that we usually publish in international journals, or we organise, you know, edit workshops, or we often organise also validation workshop at the end of the study. But, with this one, we have tried to engage them from early on and try to get buy in, and that increases uptake of the research as well as ensure the voice of marginalised groups are heard in policy dialogues and advocacy [advocacy] efforts, and it [it] contributed to creation of (a) responsive public health system.

Saumu Lwembe 24:10

Thank you so much. Professor Getnet and Dr. Munzer, we have come to almost the end of our podcast, but before we finish, there is many researchers that are listening to us right now, and I wondered, what advice will you give to others doing health systems research on how to actively involve those that are marginalised and vulnerable, so that no one is left behind? Perhaps we can start with you, Dr. Munzer Alkhalil.

Munzer Alkhalil 24:34

So, my [my] suggestion actually, first of all, to start with like stakeholder analysis and mapping, to understand the environment that you want to interfere in. What are like risk factors around your local partners, who are the marginalised groups and individuals in this context. And here let me just mention (a) very significant point. You know, usually we say, for example, as a general statement, marginalised groups, including minorities, you know. I guess in sometimes, in some context, especially in conflict affected areas, this is not the case all the time, because in some contexts maybe minorities have more power than the majority, because some minorities may be supported from foreign like forces, and so on. And let me give you an example about that. 

In Syria, for example, in the last decade, more than 900,000 people were killed. Most of them are from the majority. 12 million people were forcibly displaced internally and externally, most of them are from the majority. More than 2 million houses were destroyed, most of them are from the majority. In Syria, for example, you have some minorities (that) are vulnerable and marginalised, and some minorities with more power. So, what I want to say here very clearly (is) that you can’t use the same approach in different contexts. You need to understand in reality, on the ground, who are marginalised groups and who are marginalised individuals in this very specific context. 

Number two, I guess you need to invest a lot in creating an equitable partnership with local actors, because at the end of the day local actors are our windows to understand the environment, and also are our windows to communicate with local communities and marginalised groups.

Number three, you need to create a safe space for dialogue between your partners. And actually, I don't think that, for example, sending reports and getting feedback about the community engagement and involvement strategy is enough to say that we are on the right way, because in many conflict and fragile settings people don't feel safe to share their ideas and concerns, and the critiques about the project, or anything else. In many like extreme contexts, people maybe lose their lives, you know, just because they're sharing something on Facebook, for example, from the local authorities. So, there is this like uncertain and [and] fear actually from sharing their ideas. So, you need to invest actually in creating this safe space for people to share their ideas. 

And finally, I guess you need to mention CEI clearly in your research agenda and explain that regularly, because, you know, in many cases, after like working in a project for a while, especially for the like long term projects, we sometimes forget the [the] main objectives of our project, and just involve more in day to day activities. So, you need to mention that regularly, to keep it in your like priority as [as] a project or as a donor. Thank you.

Saumu Lwembe 28:08

Thank you. And Professor Getnet, what are your reflections on this?

Getnet Tadele 28:12

All right, thank you. 

It's good to use, as I say, culturally relevant and diverse communication tools, engage communities through theatre, all kinds of, you know, different techniques, storytelling, to break down barriers and foster participation.

Another issue is, it's good also to build partnerships with local institutions at the [at the] local level, at the grassroots level. It could be schools, churches, community groups, or different, you know, local institutions to ensure sustained engagement. And [and] also with ministries. For instance, in our case from the day one we (were) involved with the Ministry of Health, and because of that we were invited to join (a) Water, Sanitation, Hygiene (WASH) Technical Working Group. I was invited to join the Research Advisory Group on NTDs. I was also recently appointed as champion, NTD champion. That means, I'm not talking about my personal promotion or the personal benefits whatever, I'm talking about through these opportunities, I can influence policies, I can influence, you know, interventions, and I can suggest you know more of, you know, social science perspectives. So, that happened because of, you know, building partnerships with all kinds of national and local institutions, and it's good to do that.

It's also good to train local local leaders, particularly the affected communities. For me, lived experience is more important, you know, lived experience, we need to understand the lived experience of people, and that is more important than any other [any other] knowledge that we gain. And it's from that we can design interventions. So, it's good to train local leaders, local health workers and involve them early on in the process. They are trusted by the community and can help bridge the gap between researchers and vulnerable groups.

Another issue is, it's also good to address stigma proactively, and by using safe spaces and culturally appropriate methods to tackle stigma and misinformation which can be a major barrier to engagement.

And importantly, also, we need to focus more on impact. Output is important, outcome is important, but at the end of the day we need to question why we are doing, instead of focusing only on what we are doing, we need to focus on impact - something that can change. And for that to happen, we need to use all kinds of different methodologies, methods, and particularly if we want to change policies and policymakers. I always use a quote from Maya Angelou, who said that you know “people might forget what you said, people might forget what you did, but people may not forget how you made them feel”. That means we need to take, you know, policymakers to the communities, show them, you know, disfigured legs because of, you know, podoconiosis, or you know, or scabies, or the situation of people anyway, just in whatever circumstances, because of lack of, you know, access to health services, because of weak health systems, we need to show them so that, you know create some kind of uproar, so that change could be driven from that. You know it could [it could] drive changes, policies and interventions and implementations.

Engagements need to influence social and economic circumstances, including people's economic status, gender, where they live, their social relations, because all this affects their vulnerability, experiences associated with any disease. We need also to exploit social science methodology, social science approaches, as much as possible.

So, it's good to be passionate about what we do, I think that's also important.

Saumu Lwembe 31:55

Thank you so much Professor Getnet and Dr. Munzer, I think you've evidenced to us that inclusive CEI in health systems is both possible, but also it adds value to the research. Thank you once more, and a huge thank you from all of us to you too the listener. Please do share, post on X and tune into other episodes in the series which can be found on the NIHR website, or wherever you listen to your podcasts. And please do let us know what you think by sending an email to social.media@nihr.ac.uk. 

Finally, a reminder that the NIHR/Mesh online course entitled, An Introduction and Practical Guide to Community Engagement and Involvement in Global Health Research, is now available and free to all. For more details about this course, please visit the Global Health Training Centre website or visit www.nihr.ac.uk and search for community engagement and involvement. You will find the course in the resources section.

And that's all from us, so thank you very much again for listening, and please do enjoy the rest of your day.