Spotlight on community engagement and involvement (CEI): NIHR's approach to CEI

This introductory episode focuses on NIHR’s approach to Community Engagement and Involvement (CEI) in the global health research we fund.

Gary Hickey, a Senior Public Involvement Manager hosts this podcast and is joined by fellow NIHR colleagues and Assistant Directors of Global Health Research programmes, Sarah Puddicombe and Mike Rogers. In this podcast you’ll also hear from Vijay Rajkumar, a public contributor who has been involved in the commissioning of research awards.

The guests discuss the importance of embedding meaningful CEI, how CEI is considered in the commissioning of NIHR funded research and provide tips for embedding CEI in global health research.

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.

Transcript

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

Episode 1: NIHR’s approach to CEI

Speakers: Mike Rodgers, Sarah Puddicombe, Gary Hickey, Vijay Rajkumar

Gary Hickey  00:06

So hello, my name is Gary Hickey, and I work for the National Institute for Health and Care Research. And welcome to our podcast series spotlight on community engagement and involvement, improving global health research and outcomes through engaging with local communities. So why are we doing a podcast series? Well the National Institute for Health and Care Research, an organisation based in UK funds research both in the UK and globally. In the global health research we fund, there's an expectation that there'll be community engagement and involvement in the development and the delivery of research. But what does that mean? And what does good community engagement and involvement look like? What's worked well and what hasn't worked well? Well, that's what we want to explore in our podcast series. We'll be talking to community engagement specialists, members of the public and researchers from across the world to explore their experiences and opinions on all things community engagement and involvement. And hopefully, we can all learn and improve from the experiences and opinions of our podcast guests. This is the first podcast in our series and today we'll be exploring the approach to and expectations of the National Institute for Health and Care Research to community engagement and involvement. I'm delighted to be joined by two colleagues from that organisation, Sarah Puddicombe and Mike Rogers. And also joining us today is Vijay Rajkumar, a member of the public from India who has been involved in our research commissioning process. So a very, very warm welcome to you all. And let's begin with some introductions. So, Sarah, would you like to begin, tell us about your role for the National Institute for Health and Care Research?

Sarah Puddicombe  01:50

Thank you, Gary. Yes, of course, I'm one of the Assistant Directors that help deliver the NIHR global health research programmes. And that's a large suite of programmes, of which I'm responsible for the NIHR units, the NIHR groups, and the Global Health Policy and Systems research programmes. And so we manage teams of research managers who help commission, monitor and support the publications and outputs from awards that we fund through those programmes.

Gary Hickey  02:29

Thank you very much, Sarah, and welcome. And Mike over to you tell us about your role.

Mike Rodgers  02:35

Hi Gary. Well, my role is very similar to Sarah's. I'm another assistant director, I lead a team managing two of our global health research schemes. The first one, Research and Innovation for Global Health Transformation or the RIGHT scheme, which is our programmatic funding, and the second is our global health centres. And like Sarah, my team manages the cradle to grave process for these schemes. We commission applications, we award the funding to those people who are successful, and then we monitor the progress of the research.

Gary Hickey  03:08

Thank you very much, Mike and welcome. And Vijay, over to you please tell us about your role in the commissioning process.

Vijay Rajkumar  03:15

I am a member of the college of experts on community engagement. I take a role as a reviewer, as a public reviewer who looks at the engagement, public engagement, engagement of the people who are involved in the research, who are the beneficiaries of the research in the design, development, and the implementation of the research. Thank you, Gary.

Gary Hickey  03:39

Lovely, thank you, Vijay, and welcome. Lovely to have you here. So I'm going to stick with you, Vijay, if you don't mind. Vijay, why do you think community engagement and involvement is important in research?

Vijay Rajkumar  03:53

Research should be a means to an end and should not be an end in itself. So in that process, whether the research is really going to benefit the people that the research covers, whether the research has broader policy and practice implications. These are things which are often not prioritised by researchers. So NIHR has put in a system, a group of people, a College of experts who looks at how, how engaged the communities it works with the research participants are in the design, development and implementation of the process. So, without that the likelihood of the research impacting broader policy and practice is rather limited.

Gary Hickey  04:41

Thank you Vijay. Now, Sarah, I'm going to ask you how important is community engagement and involvement to the National Institute for Health and Care Research?

Sarah Puddicombe  04:53

Well Gary, it's hugely important, and we have a long history of what we call public and patient involvement in our domestic programmes, which we are really keen to expand and develop into the global health research space. So it's a core mandate actually, community engagement and involvement for us for global health research programmes. And it's an underpinning value across all of the research that we fund. And we really want to see meaningful engagement just as Vijay says, and because we know that that meaningful engagement will have real benefits in terms of the applicability of that research and its ability to meet the needs of the individuals that it's targeting in in low income and low resource settings, we've given particular emphasis on trying to make sure that we leave no one behind. And we really emphasise the importance of ensuring engagement with perhaps the more marginalised and most vulnerable populations in those low resource settings, so that we can address and prevent, or reduce then, health inequalities and ensure that we really are going to make a difference to the lives and the health and wellbeing of individuals living in those contexts.

Gary Hickey  06:16

Thank you, Sarah. And thank you, Vijay. So, you've both articulated really well there about the benefits and why we think community engagement and involvement is important in our research, but Sarah, does the National Institute for Health and Care Research practice what it preaches, I mean, how are patients, public and community and engagement and involvement specialists involved in the commissioning process in our organisation.

Sarah Puddicombe  06:42

Okay, well thank you  Gary. Again, we absolutely ensure that our peer review involves community engagement specialists, or people with lived experience in those settings and contexts that can really inform our committees then and their views around the quality of the research, its likelihood to have impact, and the various considerations that need to be taken into account, you know, have safeguarding of those individuals being considered have the power dynamics been taken into account? How are they meaningfully going to engage those communities? And not to have a tokenistic approach or a sort of a tick box exercise. It's really embedding those people from the very start of that, well, what is the priority? How and what is the question we need to address? How best do we address it? And then ensuring that actually their key instigators of that knowledge translation at the end, and helping the dissemination and influencing policy and uptake.

Gary Hickey  07:47

Fantastic, thank you, Sarah. I'm going to turn to Mike now. So, Mike, what are the expectations of the National Institute for Health and Care Research in terms of community engagement and involvement in the proposals and the research that it funds?

Mike Rodgers  08:03

So thanks, Gary, I suppose over the years, we've developed and then refined our thinking around this. Ultimately, what we want is applicants to really very clearly demonstrate how they've appropriately considered, who their stakeholders are, how they've engaged them, also how they've involved them really importantly, in developing their research, and to be able to talk about the changes that will happen as a result of this. And that obviously includes communities.  We want to see communities, really empowered to foster co-production of research across all of our calls. And there are different ways of thinking about this. A useful one I find is the UNICEF minimum standards for community engagement, which encourage things like participation, empowerment, and ownership, inclusion, bi directional communication, adaptability, and localization and building on local capacity. So really, we want to see those in the community who are most affected, being empowered to contribute towards decision making, in researching potential solutions to issues that they've identified affect them. I think it's worth saying that designing and implementing effective and appropriate CEI approaches should be treated as a central concern of all the team members on a project and not just taken as the responsibility of one or two junior people in the team. You know, we've got a list of resources, which hopefully will help facilitate learning for researchers about this, toolkits and guidance documents, and we don't prescribe a standard model. What we want is for applicants to demonstrate an approach that's appropriate and effective in the local context. We want to see people take their time to develop relationships to consider things like transparency and reflection of flexibility. And this is an iterative thing. So it's about really committing to doing this both at an individual level but also at an organisational level from the organisations of those people that are applying. You know, pragmatically we also want to see people think about this in terms of the way that they cost their application, are they including realistic costs for what they're planning to do for CEI? Are they including the right amount of people, the right amount of people's time to do this properly? And it's not just about the application stage either. It's not about a tick box that will impress a committee. Our committees are very, very hot on this, if you don't do do this properly, they probably won't fund you. But we will also keep an eye on what's going on through the life of the project. So this is a cradle to grave thing. So we want this evidence at all stages. And we will monitor how people are getting on with their CEI plans, how they're delivering against them. And that means, again, to reiterate, having appropriate co-applicants or collaborators from the local context, who are community members, and involving them in leading and delivering the CEI activities, rather than just consulting them occasionally. So the team and those that are actively engaged and involved in the programme should really be co-producing and agreeing an appropriate CEI strategy and plan, the training and support to deliver that and then being involved in its delivery. So that's just a flavour, I think of some of our expectations through the process.

Gary Hickey  11:08

Thanks, Mike. So really, there's no off the shelf, one size fits all approach, if I can use two cliches there. And it's very much about people tailoring their approach to their circumstances. That's what I'm hearing from you.

Mike Rodgers  11:25

Yes, the context in which people are working obviously differs from application to application. That's the case in the domestic programmes. But that is massively magnified on our global health activity, where an application from India might be up against an application from, you know, Uganda and Kenya. These places are not the same, the communities are not the same, the way that the health services are accessed is not the same. So the application needs to reflect that. So the CEI and the application critically needs to reflect that and needs to inform the research plan. This is a two way communication between the two things. It's not just hopefully, not just a separate box on an application form, a hoop for people to jump through. And this is why one of the reasons we monitor these projects quite extensively to ensure that they are delivering for the people that they should be delivering for.

Gary Hickey  12:16

Thank you, Mike. I'm just going to ask if Sarah or Vijay want to come in there,or have got anything to add at all to Mike's answer.

Sarah Puddicombe  12:23

Yeah, Mike has absolutely articulated exactly what we're looking for. And I think it's so embedded, that's what we're looking for. It's got to be so integrally embedded, and I think it's critical for the lead applicants and their co-applicants to have that at the front and centre of their thinking. And those those proposals that do and have it embedded, really do see tremendous benefits. And, and we've seen some fantastic learning, actually, that we've, we've experienced through teams. And we share that sort of across the networks of the awards that we hold. And Mike and I and others across NIHR come together regularly to say, what have we learned from perhaps the commissioning process? Where are those gaps? What can we do to strengthen our guidance? How do we provide more resources such as these podcasts, for instance, you know, to help really get to understand what it is, what is the CEI for me in my context? Who are those communities? And how am I going to make it make a real benefit?

Gary Hickey  13:29

Thank you very much, Sarah. I'm going to come on to our final question now. And this is going to be a standard question we're going to ask across in each podcast. And the question is, if you were giving advice to someone looking to embed community engagement and involvement in their research, and both Sarah and Mike have emphasised how important that embedding is, what three tips would you give them? And given we've got three guests on this podcast, I'm going to ask each of you to give me one tip. I'll start with Vijay.  What would be your one tip Vijay?

Vijay Rajkumar  14:02

I think one tip that I would give is to ensure that the research is adequately informed by the local contexts, because the research which may be very good on paper, which may be technically sound, which is not adequately informed by the context has very limited potential of delivering the desired impact. And that means ensuring people who understand the context in all stages of the of the research, including key members of the research team. Thank you, Gary.

Gary Hickey  14:42

Thank you Vijay. Mike, what about your your tip? I'm hoping Vijay hasn't stolen your tip!

Mike Rodgers  14:47

He hasn't but I think Vijay's tip is the absolute critical one. Actually, I agree completely with what he what he just said. The point I'd make is CEI is everyone's responsibility on the project at all stages of the process. It's not a separate activity. It's critical to everything that goes on in the research. So make sure everyone involved in the research understands and appreciates how important CEI is. If there's any cynicism about this, your project isn't going to work. 

Gary Hickey  15:16

Mike, thank you very much. And the final word to Sarah.

Sarah Puddicombe  15:20

Thanks, Gary. I think Vijay, really, really did sort of nail it. I think these trusted two way relationships, but actually, who is that community? Because in global health it's really broad. So it's not just the patients, it's some of the key stakeholders like policymakers, local NGOs. So do really think about who are those stakeholders in that context that I need to engage with? And how can I access those? And through what routes? And how can I make that equitable and give them a sort of an equivalent voice and ownership of the research and decision making?

Gary Hickey  15:58

That's great Sarah thank you. So thank you, Vijay. Thank you, Mike, and thank you, Sarah, for what has been for me a really great discussion. And a huge thank you, from all of us to you, the listener.  Please do share, tweet and tune into other podcasts in the series. And please do let us know what you think by sending an email to social.media@nihr.ac.uk. And that's all from us. So thank you very much again for listening. And please do enjoy the rest of your day.