Spotlight on community engagement and involvement (CEI): What mechanisms and structures best support meaningful CEI across multiple countries? Part 1

The second episode in this series, split into two parts, discusses implementation of community engagement and involvement (CEI) across a range of countries and explores the different approaches used across these countries. Host, Doreen Tembo, Global Health Community Engagement and Involvement Lead at the NIHR Coordinating Centre is joined by members of the research team studying Cutaneous Leishmaniasis and intervention programmes to improve patient experience and reduce stigma.

In part 1, the guests describe how CEI is embedded in the project, adapted across these different countries, and mechanisms and structures that best support meaningful CEI across multiple countries.

If you’ve listened to any of our podcast series on community engagement and involvement (CEI), we'd love to hear what you think!

Share your thoughts with our survey: https://docs.google.com/forms/d/e/1FAIpQLSdzm5ZYyCjF7VhVQs4cidrQJR6ck1z5xdVB5_s_xgiLb1UdEg/viewform

Please note these podcasts were recorded in early 2022. 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.

Listen to part 2 here: https://pod.fo/e/1550ad

Transcript

Podcast series: Spotlight on community engagement and involvement (CEI): Improving global health research and outcomes through engaging with local communities

Episode 2 Part 1: What mechanisms and structures best support meaningful CEI across multiple countries?

Speakers: Prof. Thilini Agampodi, Kelemework Tafere Reda, Dr Helen Price, Doreen Tembo, Clarice Mota

Doreen Tembo  00:06

Hello, my name is Doreen Tembo. I work for the UK National Institute for Health and Care Research, also called the NIHR. Welcome to this podcast series which spotlights on community engagement and involvement, really focusing on improving global health research and outcomes through engaging with local communities. Welcome to Part One of this podcast, where we explore what mechanisms and structures best support meaningful CEI across multiple countries. And I'm delighted to be joined by members of the ‘Empowering people with Cutaneous Leishmaniasis Intervention Programmes to improve the patient journey and Reduce Stigma via community Engagement’. The short project title for this is ECLIPSE and this research study is funded by the NIHR Research and Innovation for Global Health Transformation, which we also call the RIGHT Programme. Today I would like to extend a very warm welcome to the Co-lead investigator, Dr. Helen Price, who's a Professor of Parasitology at Keele University here in the UK, and Thilini Agampodi who's a Professor in Social Epidemiology at the Department of Community Medicine in the Faculty of Medicine and Allied Sciences in Rajarata University of Sri Lanka and also to Professor Clarice Mota from Brazil, who is an Associate Professor at the Instituto de Saúde Coletiva UNFBA,in Brazil. And I would also like to welcome Dr Kelemework Tafere Reda Associate Professor of Anthropology, College of Social Sciences and Languages Department of Sociology at Mekelle University in Ethiopia. So a very warm welcome to you all, and thank you for joining us and making this time as well. I'd like us all to get to know each other a little better. So I would like to ask you a question. Starting with um,Helen perhaps, could you describe or paint a picture for our listeners, focusing on your country.

Dr Helen Price  02:14

Okay, so, I live in the United Kingdom in England in a small village called Keele, the United Kingdom. It's an island in the Atlantic Ocean. We're known for talking about the weather. We have very variable weather, we can have all four seasons in one day. It's quite green, because it rains a lot. I don't know what else.

Doreen Tembo  03:40

Being based in the UK, myself, I think that's a very accurate description of the UK, especially the weather, it's supposed to be summer, and I was just sharing with the guests. How it is cold, I have got my cardigan on. And it is rather dark and dreary. So I'm pretty sure that the rest of our guests are going to paint a much brighter hopefully picture of their country. But nevertheless, as Helen says, a very beautiful, if unpredictable, weather wise country. So if we could move on to Clarice.

Clarice Mota  03:16

Hi Doreen, that's very good to paint a picture of Brazil. But it's a very hard task because Brazil is a very large country and diverse not only in terms of culture, but in terms of weather and environment as well. So I live in the state of Bahia, which is in the north east. And now it's raining a lot because we are in the winter. But if I would paint a picture of that part of Brazil, I would paint a bright sunny day at the beach with a clear blue sky. And I think that will be it.

Doreen Tembo  04:05

I am very, very envious Clarice. I think both myself and quite a lot of our listeners will be wanting to head to Brazil right now. Thank you very much, two very contrasting images there. And Thilini, how would you describe Sri Lanka.

Prof.Thilini Agampodi  04:25

Thanks Doreen so Sri Lanka is a very small island compared to what Brazil as Clarice has said. So it's situated just down south to India. And it is known as the pearl of the Indian Ocean because it's a very beautiful country. So we have beautiful coasts around because it's an island. And in the middle of the country, there is the hill town, very beautiful with plains and a very cool climate. It's a tropical country again, and we lot of cultural groups live here, ethnicities, Sinhala, Tamil, Moors, and so on. We live in peace at the moment. So it's a really beautiful country. Affected was affected by COVID. Now going on to a financial crisis. But anyway, people are modest and having agricultural based economy mostly. Yeah. So that's about Sri Lanka. 

Doreen Tembo  05:34

Right, So um, let's hear a bit as well about Ethiopia. But some contrasts so far, and similarities and all of us seeing the beauty despite the different contexts and cultures that we're from. So let's hear a bit about Ethiopia from Kelemework.

Kelemework Tafere Reda  05:56

Thank you very much. First of all, Ethiopia is is a vast country, it is probably two and a half times the size of Germany, I say Germany, because I did my PhD in Germany. Ethiopia has a population of over 100 million, which makes it the second largest in Sub Saharan Africa. It's a very diverse country in terms of ethnicity, culture, and language. We have over 80 ethnic groups, presently in Ethiopia. And the country is also rich in natural resources. For example, Ethiopia is the source of the Blue Nile River, which is the longest in Africa. That is about Ethiopia, in brief.

Doreen Tembo  06:41

So thank you very much. So it's really important then that we bear these scenarios in our mind as we discuss things going forward because community engagement and involvement is quite different. I think depending on the context, and the culture and the systems and the politics, Thilini mentioned the economic situation as well that you're operating in. So um, perhaps I can go back to Helen, could you tell us a bit more about the research.

Dr Helen Price  07:13

ECLIPSE is a four year programme that was awarded funding by NIHR. ECLIPSE stands for empowering people with Cutaneous Leishmaniasis Intervention Programme to improve patient journey and reduce stigma via community education. So very long title. I've worked on leishmaniasis for many years, but as a parasitologist, I work on the parasite rather than the people that it affects. So this was a new venture for me, the other co-lead of the project is Professor Lisa Dikomitis, who is a medical anthropologist, and we have a large team with lots of different disciplines represented. So we have social scientists, parasitologists, dermatologists, psychologists, sociologists, clinicians, so we have a really large team with lots of different types of expertise. And we're working around this disease leishmaniasis. So this is a disease that results from infection with a tiny parasite, and it causes disfiguring skin lesions. And we know a lot about the biomedical aspects of the disease, but very little is known about the wider effects. So what impact does it have on the people who have this condition? Are they stigmatised? Does it have an effect on their ability to, to live in communities? Are they discriminated against? And we don't know very much about awareness of the disease in communities that are affected. So the broad aim of the ECLIPSE programme is to look at the challenges that people have, who have this condition, and then to start to address those challenges by designing and implementing some interventions. So this could include training for healthcare workers, and also to raise awareness of the disease and how it is spread in communities.

Doreen Tembo  09:52

That's such an important project, isn't it? And it's very clear from how you've described it, why it has such an important community engagement and involvement component, and great to hear as well about how interdisciplinary it is in bringing so many different people together, is the condition prevalent across the world? Because there are so many countries in different regions involved in the project?

Dr Helen Price  10:21

Yes, it's found in about 90 countries worldwide. It's very closely associated with extreme poverty. And it tends to be found in marginalised populations. So it's a really neglected disease. Not many people are aware of it. But there are about 2 million new cases of this a year. So it is a it's a big problem.

Doreen Tembo  10:48

No, it is, and it's great that there's this programme of work, tackling it just to ensure that nobody's left behind, as you say, if it's a neglected research area, and condition. So thank you so much for, I think educating all of us in this condition. So I would like to go to the rest of the team to find out how they got involved in the work. Perhaps we can start with Clarice in Brazil.

Clarice Mota  11:19

Yeah, for me, it is very important to be part of ECLIPSE team. I'm an anthropologist, but I work in the Institute of Public Health. And I have never worked with Leishmaniasis before. It's my first time I used to work with sickle cell disease for the past 10 years. So it's an opportunity of learning, even though they are both neglected conditions. So to work with population that are in poverty situations is something that is very important due to this neglection that that Helen mentioned. And for me, it's it's an opportunity also to work with rural communities. Here in Brazil, I had never worked before, with communities that are in rural areas of Bahia. So that's, that's really something that I'm learning many, many things in terms of cultural diversity and way of living. So it's, it's, it's wonderful.

Doreen Tembo  12:32

Excellent, thank you for sharing that Clarice and Thilini?

Prof.Thilini Agampodi  12:36

Yeah Doreen so I am a public health physician practicing fieldwork in the community. So attached to the Department of Community Medicine, we were doing lot of field activities, specifically in Maternal and Child health. So when the country lead got the project, I was very happy to join the project, because specifically, although we were doing public health, CEI was a new approach to us and I was really willing to practice and see, get experienced, to engage with communities. So I joined the project as the qualitative expert. And I really do enjoy the work doing CEI.

Doreen Tembo  13:20

Thank you and of course Thilini mentioning CEI, which a lot of our, our, our listeners will be aware of, that is the abbreviation of course for community engagement and involvement. Thank you for sharing that and perhaps we can hear from the Ethiopian perspective.

Kelemework Tafere Reda  13:41

Yeah, so I am a social anthropologist by profession. And I've had some experiences in qualitative research, ethnographic work, participatory approach, even before the ECLIPSE project came into our place, I mean, there was no vacancy announcement for which I have to apply. A friend of mine actually informed me about this position, so I have to apply. That's how I got into the project. And I've enjoyed being part of the project. And by the way, this is one of the few instances where I work with public health professionals. So it's, it's a learning experience for me.

Doreen Tembo  14:25

Thank you. So now let's, let's find out a bit more about how CEI is embedded in the research programme. So perhaps we could go back to Helen.

Dr Helen Price  14:37

So CEI is incredibly important for the for the project, we've involved the communities at all levels of the of the work. So when we first designed the project, we asked for, we asked for information and advice from local communities. And we have two different types of community groups who've advised us all the way through. So we have community groups at village level. And also we have policy groups at regional level. So we've asked the community groups for advice on how to how to recruit people for the for the study, and also to help us to design methods and documents, and really everything that we're doing in the project, we've, we've asked communities to have input before we do the work. So we've really Co -produced the project with the communities.

Doreen Tembo  15:53

That's excellent. So they've been actively involved in in steering and guiding the work that you're doing, which is which is excellent.

Dr Helen Price  16:01

Yes. And working with three very different countries. We, we thought it would not work to have just one approach, because something that might be acceptable and in context in in Brazil might not work or might not be feasible to do in in Ethiopia, for example. 

Doreen Tembo 16:22

That's true.

Dr Helen Price 16:24

So we have to design the work around the communities rather than just going in and asking everyone the same questions. It really wouldn't work.

Doreen Tembo 16:36

That’s true. So the importance there of respecting the local culture and how things work for each of the countries that you're working in. That's I think that's a really key point. Thank you, Helen for sharing that. And perhaps I can, I can now move to Thilini to tell us a bit more about how the community engagement approach that Helen described has benefited the research in your country.

Prof.Thilini Agampodi  17:06

Yeah, exactly as Helen mentioned. So as I mentioned earlier, this was the first study for as the faculty and the department to have this specific approach to CEI community engagement. So from the beginning, what we saw was, so it was boarded in our heads, that we have to work with the community and go by the community. So from the start itself, we started work from the villages, communities. And from the beginning itself, from the designing and beginning itself. We all the team began understanding the context. And we were able to adapt more freely to the contexts because of this approach. Rather than say, in other medical or public health research, we will design everything and go to the community and implementing, so it was quite different. So we were observing first the the people and then designing with them together. And it helps us in every stage of the study, first there was this ethnographic components where the ethnographers went to the communities stayed there. So the community members help them to find places to stay. They helped them to see everything in the villages. So they were very helpful and we were facilitated a lot because of the approach. And CEI made the scientific studies, more culturally sensitive, I would say. So what we gain the conclusions, observations, they had this cultural touch all the time, rather than medical people doing a discussion and coming into conclusions. So that was a great benefit for the research. And it enabled us to respect the voice of people in the villages. And also because we were with the people communities, we were able to identify all sorts of scopes in the villages, or communities. So it was a huge change, compared to other public health research, without using CEI.

Doreen Tembo  19:32

That's, that's fascinating. So really showcasing the importance, would you say of adapting things for the local community so that it's more applicable and adoptable in the long run? 

Prof.Thilini Agampodi 19:48

Yeah, that’s’ right

Doreen Tembo  19:49

Okay. No, that's, that's, that's, that's a really key point as well, I think. And Clarice how did the CEI approach benefit the research in Brazil?

Clarice Mota  19:59

That is very interesting what Thilini said, because it's similar in Brazil, the community, they were not used to this type of approach. Because usually, public health researchers come with everything already planned. And, and they only apply into the communities. And this other way of working in terms of participatory methodologies in terms of including the community, in planning together with them, the research steps that are going to be taken, this is very empowering for the community, because they, we don't want a research that in the end, nothing's going to stay there anymore. So it's four year research, if we don't empower the community, after these four years, they will not know they will not have the tools to continue these actions. So I think the community engagement approach is very empowering, not only to the community, but to us as universities. So we are learning to do things with the community, instead of doing things for them. And this, this is very important because usually, these communities, they were silenced, often, they did not have voices, their voices heard in the process of research. And now I think this is a big change, because they can discuss with us the best ways of approaching even the ethnography. So what is the best way of approaching certain communities, and we're talking about rural communities, they have cultural diversity there, sometimes very different from the manners of urban Brazil, like, like I live in an urban environment. So they have other ways of living, that we need to engage and to respect like Thilini was saying, so I think I think the community engagement methodology can cover many, many things like including the dialogue with the community leaders, but not only the leaders, because usually, we only listen to the community leaders that are often leading historically there, we need in this in this approach, we also need to listen to people that were historically silent and who do not have been encouraged to participate and we need to encourage them to participate. So we have we have community groups, that that we discuss the development of the project, and this this groups that we have Whatsapp group and also present meetings with these groups in every community. We are working for communities here in Bahia. And we also need to include the dialogue with the stakeholders because usually the stakeholders they are not listened to as well by researchers and how can we influence decision making in health politics, if we don't work together as well with stakeholders? So I think is this this multiple voices, the multiple actors that are in the communities and community leaders, the community members that are not in leadership but are also important. And also the stakeholders because we need them to promote benefits for these populations. So we are working through the community advisement groups, we have four community advisement groups. And we have the meetings, we make methodologies in terms of stimulating their voices to be heard, and stimulating more protagonism. Especially for women or for young people that are not participating as well. So these, these are mechanisms that we are developing with them. And I think this is a very important approach to be to be more used in public health research.

Doreen Tembo  24:50

That was fascinating. Thank you very much. Clarice, you mentioned so many points around, bringing in marginalised voices, empowering the community, making sure that whatever interventions or programmes we have are sustainable post the research, and so much more. I just wanted to ask you, you mentioned pro protagonism, could you explain a bit more what you mean by that term?

Clarice Mota  25:16

Well, sometimes in community, you have power relations, that usually certain people are more heard than others. So when we, for example, men are usually more empowered in the communities, not all of them, but most of them. So when we are doing, for example, a meeting, we usually do in a circle, we sit in a circle, and we allow everyone sometimes you'll see a woman, a woman, or even young, young adults that usually don't participate. They're like left behind, and we invite them, no please come to the circle, you need to talk as well. So when we recognise the importance of people, they feel more open to participate. And we can validate their voices as well saying, Well, what you're saying it is important because sometimes, they do not have the scientific discourse. They don't do not have the scientific knowledge to talk about a health problem. But we can validate and say, well, in your words, in your way of saying you do have knowledge, because you have knowledge from the experience you have around this condition. So it's another type of knowledge is not scientific knowledge, but it's local knowledge. And this is a way of stimulating more protagonism in communities.

Doreen Tembo  27:02

That's really important, so that the need to respect different types of knowledge there is so important and again, that issue of bringing in those seldom heard voices and making sure they're included in the process. Thank you so much Clarice and perhaps we can explore what similarities or differences are experienced in the Ethiopian context, Kelemework

Kelemework Tafere Reda  27:27

Community engagement and involvement is first of all about putting people first; it is about participatory development, particularly in the health sector. We actually involve communities in decision making at all levels, starting from planning to implementation as well as monitoring and evaluation. I mean, we don't engage people just because it is fashionable to do so, but rather, because we should try to create a conducive environment for inclusive development. Now, CEI also implies that there is shared responsibility and accountability. Usually in conventional research, local communities are perceived as passive recipients of our intervention, which is wrong, but rather, we should treat local people as development partners, because they have a huge amount of resources to contribute to our project and to the success and sustainability of our project. One such resource is indigenous knowledge or otherwise known as local knowledge. And so we need to positively interact with people in the grassroots without having to involve in some kind of hierarchical relationships. So what we did in Ethiopia was to first establish community advisory groups in different villages with whom we worked very closely, we shared with them our plans, methodologies, and implementation modalities of the project. They also helped us to get their own perspectives and priorities. And honestly CEI was quite a new thing for them, because previous projects adopted more of a top down approach, in which communities were treated as mere suppliers of information to researchers about their own local conditions. So CEI actually changed the trajectory of people's participation, so much so that they now feel more important and showed interest in the project. That's why they now wholeheartedly support the project. That is how we are dealing with the issue of CEI in the Ethiopian context.

Doreen Tembo  29:49

Thank you all so much for your insights into how that has benefited the research. But really, your comments have also demonstrated how it has benefited the communities that you work with. So next would like to explore what mechanisms and structures best support meaningful community engagement and involvement across multiple countries. And I think we've touched on these aspects. But Helen did, did you have insights into perhaps what works when you are in a project such as yours that's looking at multiple countries.

Dr Helen Price  30:25

I think the main point really is that we can't have one approach that fits all countries. So we have to have respect for the differences and the similarities between different sites in different populations. And as Clarice said, to bring in all of all of the people in those communities and not just the ones who are loudest. So we need to bring in people who might not be heard, normally, because their voices are as important as any others. So we have these two different types of groups. So we have the community advisory groups, which we said were at village level, and we also have groups called the communities of practice. So this was based loosely on the communities of practice that we have in the UK for medical research, and that this brings together lots of stakeholders, policymakers, clinicians, academic members of staff, lots of different experts who can also be ambassadors for the project.

Doreen Tembo  31:42

So really co-producing the research with multiple stakeholders and users, end-users and influencers of the research. Thank you, Helen. I think that's really key. That brings us to the end of part one of this podcast, which has been exploring the mechanisms and structures which best support meaningful CEI across multiple countries. Thank you so much, again for joining us and enjoy the rest of your day.