Leaving no one behind and the NIHR/Mesh CEI online course

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

Our host, Heidi Surridge, is joined by authors of the NIHR/Mesh CEI online course, An Introduction and Practical Guide to CEI in Global Health Research - Gill Black, Managing Director and Head of Engaged Research at the Sustainable Livelihoods Foundation, Alun Davies, Senior Programmes Manager at Mesh, The Global Health Network, and Rodrick Sambakunsi, Science Communication and Public Engagement Practitioner at Malawi Liverpool Wellcome Programme. Together they discuss how the course can support research teams and collaborators to achieve inclusive CEI and provide tips for leaving no one behind in CEI. 

Get to know our speakers 

Gill Black has worked in global health for over 25 years and joined the CEI field in 2011. Having lived in South Africa since 2002, her CEI experience is rooted in sub-Saharan Africa. Gill's practice supports action-oriented community based participatory research, often incorporating creative methods including storytelling, photography and mapping approaches. Gill works to advance equitable partnerships between researchers and at-risk communities, to strengthen co-production and policy engagement. Since 2018, her CEI focus has been to inform environmental disaster risk management and better understand the mental health impacts of climate change. Gill is passionate about building capacity for engaged research in low and middle income countries (LMICs). 

Gill is co-lead author on Module 2 and lead author on Module 3 of the course.

Alun Davies leads Mesh, a platform for community engagement with health research. Working with coordinators embedded in African, Asian, Latin American, and Caribbean research institutions, Mesh strengthens engagement practice by sharing skills, knowledge, and resources. A key achievement is establishing a large Kenyan school engagement programme, enabling young people’s insights to shape health research implementation. Al has led several multi-country engagement projects, including a WHO technical working group on Good Participatory Practice for Covid-19 research and conducting rapid research to identify social and behavioural priorities for WHO guidelines on mpox research.

Al is lead author on Module 4 of the course

Rodrick Sambakunsi is a science communication and CEI specialist, with over 15 years of practical experience. For the past 10 years, Rodrick has worked for Malawi Liverpool Wellcome Trust on a number of different roles developing and implementing innovative CEI strategies. More recently, Rodrick has led an implementation of an African-led collaboration of creative engagement practitioners, community groups, experts, and policy makers to promote dialogue and research about vaccines.

Rodrick is lead author on Module 1 of the course. 

Please note this episode was recorded in late 2024. 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 7 - Leaving no one behind: An Introduction and Practical Guide to CEI in Global Health Research online course

Host: Heidi Surridge

Guests: Gill Black, Alun Davies, Rodrick Sambakunsi

Heidi Surridge  00:00

Well, hello listeners! My name is Heidi Surridge, and I work for the National Institute for Health and Care Research, an organisation based in the UK that funds research both in the UK and globally. 

Welcome to our podcast series ‘Spotlight on community engagement and involvement: Leaving no one behind’. We're exploring how we involve and engage people and communities in health and care research, with particular focus on those who are marginalised or vulnerable. This is the last and the concluding episode in this series, and today we will focus on ways in which the new NIHR and Mesh online course, An Introduction and Practical Guide to Community Engagement and Involvement in Global Health Research can support research teams and their partners to achieve inclusive CEI. For access to the course please visit the Global Health Training Centre website or visit www.nihr.ac.uk and search for community engagement and involvement. There you will find the course in the resources section.

So, today I'm delighted to be joined by three of the course authors. I'd like to extend a warm welcome to all three of them. So, firstly, we have Gill Black. Gill is Co-director and Head of Engaged Research at the Sustainable Livelihoods Foundation, Cape Town, South Africa. Hello, Gill!

Gill Black 01:55

Hello! Hello, Heidi.

Heidi Surridge 01:57

And we also have with us today, Rodrick Sambakunsi. Rodrick is a science communication and public engagement practitioner with the Malawi Liverpool Wellcome Programme in Blantyre, Malawi. Welcome, Rodrick!

Rodrick Sambakunsi 02:14

Thank you, Heidi.

Heidi Surridge 02:15

And also, last but by no means least, we have Alun Davies, who is the lead for the Mesh community engagement network, and he's based in Oxford within the UK.

Alun Davies 02:29

Hi!

Heidi Surridge 02:30

So, let's talk inclusive community engagement and involvement and the course. Could you start by telling us a bit about your community engagement and involvement experience and why you became involved as an author of the online course. I'd like to go to Gill first.

Gill Black 02:52

Okay, thanks Heidi, and [and] thanks so much for inviting me to be part of this podcast and [and] to be on together with Al and Rodrick, which is a great honour.

So, I joined the field of community engagement and involvement 14 years ago following a 20 year career as an infectious diseases immunologist. And the background of being a global health scientist, including working in Malawi for 5 years, not only catalysed my transition into community engagement and involvement, but it's also formed a lot of my CEI practice and the way I think about engaged research and transdisciplinary research. So my CEI experience, my community engagement experience, is largely rooted in the South African context. I've been living in South Africa for 25 years and this experience has included a lot of community-based participatory research and action oriented work with marginalised communities and people affected by major health challenges, so I facilitated CEI on a range of topics; tuberculosis, HIV, cardiovascular disease, food security and community safety, for example, and I branched into the health impacts of climate change in 2018. So, I'm currently involved in a research project exploring the mental health impacts of climate change in 4 countries in sub-saharan Africa and I find visual methods to be really effective tools for engaging communities and I've worked with a range of visual methods. And my work with community members is [is] increasingly included policy engagements as [as] a central purpose of the work. 

So, my involvement on the course came about as a result of my Wellcome funded community engagement work and this linked me to Mesh and The Global Health Network and the really great people that were working there. And then a few years ago, Dr. Mary Chambers and I wrote a course on the practice and ethics of community engagement in health science, which is also published on The Global Health Network, and the learning from that has certainly been instrumental in being asked to join this team of authors for [for] the NIHR course, and I co-wrote two [two] modules of [of] the course together with Helen Latchem and Noni Mumba. Thanks.

Heidi Surridge  05:17

Over to Al. Thank you, Gill.

Alun Davies 05:20

Yeah, thanks. Well, I started working in community engagement about, well over 20 years ago, really, with when I was working with the KEMRI Wellcome program in Kenya. I developed an interest in engagement in particular with [with] young people and school children. I established, with a team of [of] other engagement practitioners, we established a [a] schools engagement program that reached out to probably about between 50 and 70 educational institutions across Kenya. 

I then, over the years, got involved in [in] several multi-country research and engagement projects, including some working on engagement with the WHO for a clinical trial. Over those years I've [I've] actually been a big fan of [of] Mesh, and have been a contributor for Mesh over those years of [of] different in [in], you know, different events and [and] different resources on [on] the site, and is, it felt, [felt] natural for me to [to] join in with [with] a group of colleagues who I'd known for quite a long time to [to] co-author this course. It's been a great project and lots of learning for me personally. 

Heidi Surridge 06:47

Thank you Al, and Rodrick.

Rodrick Sambakunsi 06:49

Thank you, Heidi. So for me, equally, my experience spans a period of over 10 years working with different communities in Malawi. So as in the introduction, I work for Malawi Liverpool Wellcome Programme. This is a research institute, so, I lead the team of community engagement practitioners in Malawi developing a strategy of community engagement and involvement to support the research projects that take place in Malawi. And my background is in public health, but also in community development. That gave me a platform then to transition to working with a research institution where community engagement and involvement is very critical. So, we developed a strategy which involved a number of activities which provide an enabling environment for communities and researchers to work together to make sure that communities are also contributing towards the research. 

So, because of my involvement with the networks that Wellcome Trust provided, plus other institutions, I've met a lot of practitioners in community engagement whom I have worked with for some years. And through those connections I became to be introduced to the course that was being developed by NIHR, and I was one of the authors and I authored Module 1 of this important online training program. 

Heidi Surridge  08:38

Thank you, Rodrick, and thank you all. I'd like to pose the next question to Rodrick first. Rodrick, what does leave no one behind in community engagement and involvement mean to you?

Rodrick Sambakunsi 08:54

So, that's a very important question. To me, leaving no one behind in community engagement and involvement just affirms the importance of actively involving the community throughout the research process basically, using participatory approaches, but also working in partnership. Just to make sure that the people that benefit from the research that is being implemented also take part. So if [if] this is well planned, it means the research is going to be implemented in a way that is beneficial to the people that (are) implementing the research, but also the community that we're working with. So basically making sure that everyone should take part in the research. 

Alun Davies 09:52

Yeah, I [I] fully agree with you, Rodrick. Also, I guess from my point of view, if you think about some of the health challenges resulting from infectious diseases and from climate change, and also mental health challenges, they almost always affect have a greater affect or impact on the poorest in society. And also those same people often have the most challenges in having their voices heard in terms of decision making with regards to what research should be prioritised, how that research is done and how the findings might be taken up in policy changes. So to me, the importance of [of] community engagement in terms of inclusion is to make sure to try and attempt to [to] get those voices heard in [in] research decision making.

Gill Black 10:53

Yeah, thanks, I agree very much with all the points that both of you have made Rodrick and Al. I'm going to come in with a slightly different take on it and building on onto your insights, I would add that [that] for me, leaving no one behind in CEI, means to become knowledgeable, not only on the subject matter of your research, but to grow deep knowledge about the places that you're working in. And I know that both of you have done that both in Malawi, Rodrick, and [and] when you're many, many years Al, working and living in Kenya.

So yeah, really growing a deep knowledge about the places that you're working and building relationships with the people that live there. It's about asking community members lots of questions and [and] asking about who you should be working with. It means asking for help essentially, and having an open mind, and listening to the advice that you're given by [by] community members, people who live in the place that you're working in. So it means there's a lot of trust involved in inclusive research and leaving no one behind. It can mean having really difficult conversations. It can mean having to make very hard decisions and being responsive and reflexive to whatever it actually means to bring people into your work and your process. 

So, Rodrick, you mentioned about benefits, and I think part of leaving no one behind is about understanding what the people who become involved in your research need to be able to participate and also finding out from them what will make it possible and beneficial for them to engage in research. And [and] that includes, as Al has said, the approach, the methods and the techniques and the exercises that will be used. 

So, I think for me, leaving no one behind in [in] research is about really owning that mission, which is never a straightforward thing to do. Yeah. So, I think it's just about having a really [a really] open mind and recognizing that it might be quite uncomfortable but absolutely crucially important.

Heidi Surridge  13:07

Thank you, all of you, for the really salient points that you raise. And I'm very much hearing about doing inclusive community engagement is crucial if it's aiming to benefit those that are most in need, and also that we should be working with those local communities and prioritising their knowledge and experience.

I'd like to move on, and perhaps Al first. Given the focus of the podcast series has been on leaving no one behind in community engagement and involvement, how do you think that the course can help researchers and community engagement practitioners do this?

Alun Davies 13:53

I guess you can look at this in [in] two ways. I mean the first way is really really important to consider how we [how we] put the course together and the way you can access it. And in terms of practitioners, we [we] wanted to put it online and put it online for free first of all to make it accessible to as many engagement practitioners working in diverse settings around the world.

We reviewed it with particular attention to ensuring that there was consistent use of terminology, as simple and straightforward language as possible, and using different learning approaches like matching exercises, graphics, videos, to try and make that [that] those principles of engagement accessible to everyone. We're currently looking at ways of [of] potentially translating that into different languages, but that will [that will] take some time to do.

I guess, the second way to look at it is specifically through we try and present a range of [of] approaches to engagement. And I guess this is taking into consideration their context for engagement around the world differ/varies. It kind of [kind of] varies quite [quite] widely across the world, and I guess as engagement practitioners it's really important to try and reach out and use ways which are accessible to a wide range of people. So, for example, in Modules 4 and 5, we [we] describe different approaches like school engagement, deliberative approaches, community drama, online engagement, and [and] that is directly to try and stimulate creativity amongst the learners, to try and think more broadly of how you know how [how] we can devise engagement approaches that will appeal to and enable a wide range of [of] community members and publics and stakeholders to take part in research and participate in [in] decision making.

Heidi Surridge  16:08

And Gill, would you like to come in?

Gill Black 16:11

Yeah, thanks Al for those really interesting points about how and going back to how we actually designed the course in [in] the way that we did and [and] much of my [my] input through the course was [was] drawn from [from] my [my] years of experience at [at] the Sustainable Livelihoods Foundation. 

And one of the things that I've been grappling with recently in terms of [of] inclusion and in terms of leaving no one behind is the [the the] requirement and the importance of including community members in proposal [in proposal] development. And I think this is one of the points that we're all wrestling with in the field of community engagement, because - and this doesn't only lend itself to proposal development - but if you think about [if you think about] a community you know, what do we mean by a community? How big is a community? How many people live in a community? You could be talking about a city, or you could be talking about a very large township, for example, with thousands and thousands of people. 

And so I think, leaving no one behind and inclusive research, it's we talk about these things, but we don't  really know how to be able to meaningfully bring on board people in order for them to really play a pivotal and meaningful role in, for example, in proposal development, because a proposal for science for a scientific research study usually has a lot of jargon, it has a lot of scientific terms, it's usually very long, it's very dense. And so what does it actually mean? What does it really look like to involve community members for example, in proposal writing? And I think that's something that we're still grappling with in the field. I think it's something that there's a lot of research that needs to be done to ask these questions, because it's easy to say we must include community members in proposal development, and we must include community members all the way through a research study, but I don't think yet there's been enough of that really inclusive, deep engagement work being done for us to understand, to gain lessons and [and] to understand experiences and what works and what doesn't work. So it's a very, very exciting field, because it's such an emergent field, and we still have so much to learn. We know what's the right thing to do, and we all agree on what's the right thing to do, but how to do it, I think we have a long way to go there. 

And so, and just to talk about the course and how the course can help practitioners and researchers. So, one of the modules focuses on ethical CEI, and there is actually a section in that module on inclusion, and that section highlights issues around unconscious biases, which I think is a really crucial thing we should all be thinking about. So, what we mean by unconscious bias is how a person thinks can depend on their own identity and their life experience, and so sometimes people have beliefs and views about others that might not be right or reasonable or rational. So this includes, somebody might think better of someone because they're like them, and they can think less of someone because that person's different to them. So, this could be around race, it could be around religion, age, physical ability. And what the course highlights is that encouraging stakeholders to be more aware of their own unconscious biases might influence decision making about who actually gets included in CEI. And I think that's a really important thing, as I said, for us all to be [to be] aware of and to be thinking about. 

And so, as you've mentioned about the course being really interactive Al, and so the ethics module, for example, contains interactive exercises that help users to think about the various factors that could pose barriers to inclusive CEI. And, for example, this video that offers examples in practice. So, it talks about the need to be contextually reflexive about where community engagement activities take place, when they take place, and again to strengthen possibilities for [for] more [for more] inclusive CEI. 

So I think [just] to just one last point about the course is that, and linked to unconscious bias actually, is around power dynamics and this is [this is] raised a lot a number of times in different modules of the course, and who, you know this is a well recognised factor in community engagement and how to get around that is one of the things that the course offers. So, for example, the importance of stakeholder mapping is emphasised in several different places in the course as well and it's explained how really doing a rigorous stakeholder mapping process can help to achieve a more fair [fair] and typical representation, and therefore alleviate power dynamics by really thinking through and mapping out in depth who the crucial partners are - which voices and perspectives - are needed to ensure well-rounded and effective CEI in research and, in fact, the second module of the course which is on justifying CEI, considering stakeholders and engaging policymakers, gives solid practical advice on how to do stakeholder mapping, and also, in addition, provides some really good resources that can help researchers to understand a stakeholder mapping process and how to do one. 

Heidi Surridge  22:20

And I'd like to invite Rodrick.

Rodrick Sambakunsi 22:25

Thank you, Heidi. So, so, just to emphasise the importance of this course, Module 1 and part of Module 2 is talking about the benefits and probably some challenges of community engagement and involvement. And I would [I would] point participants to these two modules to make sure that they immerse themselves to understand how community engagement and involvement is important in health research. 

So, there are quite a number of benefits actually. If done well, community engagement and involvement can support you to identify key stakeholders - those people that you want to take part in research - but also can help in building up relationships. So the relationship is very important, it can enhance trust. The trust is also very important if you want people to take part in research, so the [the] module, especially Module 1 has outlined all the benefits and also help participants on how best they can plan and implement successful community engagement and involvement. 

There are challenges, of course, that participants need to be aware of. So, community engagement and involvement, if [if] it's planned well, implemented well, can require enough resources. So you [you] need to make sure that you put enough resources if you're going to plan and implement an effective community engagement and involvement. It can be challenging because you're trying to include different voices, sometimes it becomes difficult to contain power dynamics within you know the people that are involved.

So, indeed, there are a number of things that people need to be aware of when they're planning and implementing community engagement. I think [I think] most of those things, Gill and Al also, I mean have talked about, so I think I'll stop there. Thank you.

Heidi Surridge  24:38

Well, thank you, Rodrick, thank you, Gill, and thank you Al. I mean, you've brought up so many really important elements that the course can support our practitioners and academics who are conducting research and community engagement and involvement. 

Not least that the course provides you with some of the tools by which you can undertake (CEI), and different approaches for different groups of people depending on who they are and what they find the most accessible, including many creative and participatory approaches. Indeed, we all have to include that reflexivity and be aware of any unconscious bias that we bring to it, and how that will influence the power dynamics, once again, highlighting that importance of prioritising local knowledge and experience. 

Indeed, the benefits and the challenges, and I think something that we've heard in previous podcasts and Rodrick has brought up for us, is that in order to do community engagement and involvement effectively, you need to have those resources, there needs to be that adequate budget in place, and good planning and advanced mapping of all of those who need to be involved will help you do that.

So, we've covered an awful lot, and your passion and personal experience of CEI shines through. I'd like to encourage our listeners to delve into the course and discover for themselves the content. 

My final question though to my podcast attendees today is about your top tips for inclusive community engagement and involvement. So, over to Al first with this one. So, what one key piece of advice would you give to those planning inclusive community engagement and involvement?

Alun Davies 26:52

Yeah, thanks Heidi. I think there's still - despite engagement [being] having been done for a few decades now - there's still a bit of a misconception that engagement is about informing people about research or raising awareness of research so that they can take part in research. But my top tip would be about flipping that round and asking researchers to think about well, how can local knowledge, how can the views of local people be listened to and incorporated into research so that we can improve research? So that's my top tip.

Heidi Surridge 27:33

Thank you, Al. Gill?

Gill Black 27:35

Thanks Al, absolutely. And so thinking about my top tips, so I'm going to be cheeky, and I'm going to actually give two top tips, I hope that's okay. So first of all, I want to circle back to what I said earlier about what it means to leave no one behind. 

So, my [my] one of my main pieces of advice, my first top tip would be to do your groundwork. Get to know the informal or formal groups that are active in the communities where you're working or where you want to work, have meetings with them, grow a network that will open up pathways and linkages to help you find the people you really need to be working with to do inclusive CEI and leave no one behind. 

And linked to this really, my second top tip would be around time, and I always bring this up, and I will continue to do so. Time and time again it’s said that being part of inclusive, of doing inclusive CEI means involving community members right from the start of a research project or programme, but the step before involving people is finding them. It's about identifying who your community partners are bringing them on board and under the principle of leave no one behind it’s especially important to build enough time at the very, very start of your project, to make sure that you are finding the people with lived experience, and people who are interested in working with you, who are available to work with you, and that takes a lot of time on the ground, a lot of meetings, a lot of planning. Heidi, you mentioned the importance of planning, and [and] that's not only on your part as a researcher, but also on the part of your community partners, because, in order to [to] participate in your research project or be involved in your research project, they may have to move their own mountains at home to be able to make that happen. So yes, time, it's always important to recognise proper time investment as a crucial factor in doing really inclusive CEI. So that's my two.

Heidi Surridge 29:44 

Over to Rodrick.

Rodrick Sambakunsi 29:45

So for me, my top tip would be, don't be discouraged. Take the challenge. Don't work in isolation. Start with this course and also know that there are a lot of resources out there, so seek help from people that have been doing this work for so long, and in this course, you find a lot of people that have done this work. Thank you.

Heidi Surridge  30:14

Thank you and a huge thanks to all of my podcast collaborators today - Rodrick, Al and Gill - for your time and your contributions. I think for me, hearing from this, it so much resonates about the underpinning value of CEI relies on those relationships, that building those relationships at multiple levels with different groups and at different times, and using the techniques and methods that are out there, and some of which, as we've said, are on the course. I'd like to highlight that the course has been a global effort. In order to produce it, we included language testers, usability testers, peer reviewers of the content from around the globe. And indeed, we have some authors that aren't here today, so I'd like to extend our gratitude to Helen Latchem, to Noni Mumba, and to Rob Vincent, who are also key members of the course team.

So, a huge thank you from all of us to you, the listener. Please do share, post on X and tune in to the other previous episodes in this series and Series 1 which you can find on our website or wherever you listen to your podcasts. Please do let us know what you think by sending an email to social.media@nihr.ac.uk. 

Finally, one final reminder that the NIHR and Mesh online course, An Introduction and Practical Guide to Community Engagement and Involvement in Global Health Research, is now available and it's free to all. For more details please visit The Global Health Training Centre website or visit www.nihr.ac.uk and search for community engagement and involvement. There you will find the course in the resources section.

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