Engaging and involving disabled people

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

Host Mark Lutton, NIHR Assistant Director for Global Health Programmes is joined by Sweta Pal, Director of CEI for NAMASTE at Sangath, Dr Natasha Fothergill-Misbah, Research Associate at Newcastle University, and Dr Andrew Sentoogo Ssemata, Post-doctoral Scientist at MRC/UVRI & LSHTM Uganda Research Unit. Together, they discuss engaging disabled people in health care research. 

The guests share what is meant by leaving no one behind, challenges of engaging gender groups in their research, the impact of their research on communities and the impact on their research, and provide tips for leaving no one behind in CEI.  

Get to know our speakers

Sweta Pal is a public engagement professional. Her work has spanned youth mental health and early child development focusing on co-developing health promotion programmes which involve individuals with lived experience of a health concern into programme conception, design and implementation. Sweta employs participatory research methodologies to co-create health education programmes targeted at diverse audiences and communicate complex sociocultural subjects through accessible mediums and promote help-seeking. Through Sweta's work, she strives to create a world where all young people are able to thrive and enjoy good mental health without stigma and discrimination.

Andrew Sentoogo Ssemata is a post-doctoral socio-behavioural scientist under
the Disability Research Group (DRG) at the MRC/ UVRI & LSHTM Uganda
Research Unit, Entebbe. Andrew is also a member of the International
Centre for Evidence in Disability (ICED) and a Research fellow in the Department
of Global Health and Development at LSHTM.

Andrew has led on several community engagement initiatives for trials in Malaria,
HIV, menstrual health and disability. Currently, he is a co-researcher on the
NIHR professorship grant to Prof Hannah Kuper that is conducting a cluster randomized trial on improving access to healthcare for disabled people utilizing participatory learning and action for disability (PLA-D) groups in Uganda (2022-2026).

Dr Tash Fothergill-Misbah’s research has focused on Parkinson’s disease and ageing in Africa, stigma and access to healthcare. She is the CEI co-lead for the NIHR Global Health Research Group on Transforming Parkinson’s Care in Africa (TraPCAf), working across 7 countries. Tash has coordinated the grant’s CEI work alongside ‘Parkinson’s Africa’, the grant’s CEI partner. These activities have involved:

•  proposal development workshops 
• advocacy and awareness raising through community engagement and documentary films
• Parkinson’s training workshops
• the establishment of support groups for Parkinson’s
• patient advisory workshops to inform the research process

Mark Lutton is Assistant Director of Global Health programmes at the NIHR Academy. He is responsible for the delivery of NIHR’s Global Health capacity strengthening programmes and personal awards. Prior to joining NIHR, Mark was CEO of an FCDO funded research consortium aiming to strengthen health system resilience in fragile and shock prone settings. He has a background in capacity strengthening, programme management and Monitoring, Evaluation and Learning. Mark holds a BSc in Zoology (University of Edinburgh) and an MSc in Public Health (LSHTM). 

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 4 - Engaging and involving disabled people

Host: Mark Lutton

Guests: Sweta Pal, Natasha Fothergill-Misbah, Andrew Sentoogo Ssemata

Mark Lutton 00:00

Hello to those listening and welcome. My name is Mark Lutton, and I work at 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’, exploring how we involve and engage people and communities in health and care research, with particular focus on those that are most marginalised and vulnerable. 

This is the fourth episode in the series which will focus on engaging and involving people with disabilities. Approximately 1/8th of the world population is disabled and have worse health outcomes than those without disabilities. In this episode we will talk to NIHR-funded researchers and community engagement and involvement leads to discuss their experiences, challenges and advice for engaging these sometimes marginalised groups and individuals.

Our first guest on today's podcast is Sweta Pal, who is the community engagement and involvement lead on the NIHR Global Health Research Unit on Neurodevelopment and Autism in South Asia. Welcome Sweta to the podcast and I would first like to ask you, what does leave no one behind mean to you?

Sweta Pal 01:19

Thanks Mark, I'm very excited to be here today. For me, leave no one behind means ensuring that every voice, particularly those of people who are vulnerable and from marginalised communities is heard and included in the communication.

It's also about creating a space where people feel valued and are given the opportunity to contribute, as well as setting up an environment which offers and enables equitable collaboration. For me, this has both been a principle as well as a practice embedded into every stage of our research process and my passion has definitely been shaped by wanting to improve health literacy, focusing on enabling access to factual evidence-based information for people to make decisions about their health, using a range of public engagement strategies.

Mark Lutton 02:16

Thank you, Sweta, and really looking forward to exploring some of those concepts and principles throughout today's podcast.

Our next guest is Andrew SSemata, who is a post-doctoral scientist working on an NIHR Professorship Award that uses participatory approaches to improve access to healthcare for disabled people in Uganda. Andrew, what's important for you when we talk about leaving no one behind?

Andrew Ssemata 02:39

Thank you, Mark. To me, leaving no one behind equally means that individuals have equal access to opportunities, resources and services regardless of their circumstance or abilities. And ensuring that everyone, regardless of their background, age, religion, or culture or circumstances, or identity or ethnicity, has access to equal opportunities, resources and services to participate in anything. And in [in] terms of research, it's ensuring that all individuals are given equal opportunity to participate in research undertakings, but embodies principles of inclusion and equity and social justice that strive to ensure that we address the disparities that every individual have to bring about full participation in [in] research. Thank you.

Mark Lutton 03:27

Thank you, Andrew. And finally, our [our] last guest today is Tash Fothergill Misbah, who's the community engagement and involvement lead on the NIHR Global Health Research Group on Transforming Parkinson's Care in Africa. Tash, I'll ask you the same question, what does leave no one behind mean to you?

Tash Fothergill-Misbah 03:44

Thanks Mark, and thanks for having me. And I think, echoing both what my colleagues have just said, for me personally, I work with Parkinson's disease and generally older people, and I think older age groups are often left behind and not involved in a lot of research and also policy making decisions often experience the most barriers to accessing health services. So for me, it's ensuring that older people have a voice, a seat at the table, are acknowledged in policy, and therefore have access to the services, opportunities that they need.

And in terms of Parkinson's, it’s a disability that I work with, ensuring that they also are not left behind, often marginalised severely for the, [for the] symptoms that they experience. And I'll look forward to talking a bit more about that as we progress.

Mark Lutton 04:36

Thank you, Tash, and great to hear from a wide range of experiences that we have on [on] the podcast today. I would [I would] really like to hear a little bit more about your research, and I'm sure those listening would [would] too as well. So, Andrew, I would like to hear a little bit more about how you started working with people with disabilities, and what research you're conducting now?

Andrew Ssemata 04:56

I started working with people with disabilities way back in 2013 when I was given an opportunity to work with children who have spina bifida and hydrocephalus,and we were conducting a study which was a community-based intervention to improve on uptake of sexually reproductive health services. And that's the beginning of my journey to participate in disability-related research. And then moving on from there in 2021, I began working on a project which we call The Missing Billion, that focuses on improving access to healthcare for people living with disabilities in Uganda. And in this project we are using participatory approaches, like working collaboratively with people with disabilities and other key stakeholders to prioritise and to implement scalable solutions developed by communities themselves to improve access to healthcare.

Mark Lutton 06:02

Thank you, Andrew, and [and] I'll come to Sweta next. What has your background been, and [and] how have you started working with people with disabilities within your context?

Sweta Pal 06:12

My background is actually in journalism and mass communication. And I began my journey in working with people who have lived experiences of mental health challenges as well as now moving into neurodevelopmental disabilities. This began back in 2016, with an interest to build spaces which enabled us to centre the voices of those who have lived experience of mental health needs into the design and implementation of interventions and mental health promotion programmes.

I work with an organisation called Sangath, which is an Indian nonprofit, and with Sangath I've been able to work on multiple initiatives, including the ‘It's okay to talk’ campaign which aims to enable young people to share their personal lived experiences of mental health with the aim to breakdown stigma around mental health in India, as well as encourage help-seeking.

A more recent programme that I'm currently involved with is the NIHR-funded NAMASTE which focuses on increasing access to community-based detection and care for both autism and intellectual disabilities. And my role within this project is to support creation of community awareness materials and tools which then link families and caregivers back to the services that are being provided in the community.

Mark Lutton 07:37

Thank you, Sweta, and that's really interesting to hear about your experience, particularly in terms of breaking down stigma when it comes to involving those with lived experience within research. I mean, what would you say have been the main challenges in doing that? And how have you addressed those through your work?

Sweta Pal 07:54

That's a big question. So, I'll start with stigma first. Stigma is a very complicated area; there's multiple layers of stigma that we deal with, and again, as I said, I've worked across mental health needs for young people, so I'll respond from my experience in that audience group.

In India particularly, stigma is a real barrier to people being able to access mental health care. This is on top of an existing large service gap, where most people who are experiencing mental health challenges are not able to receive evidence-based care.

But also on top of that, because of widespread stigma, especially around chronic mental health conditions, and to a large extent stigma around neurodevelopmental disabilities as well, we've also seen that even in areas where services are available, these are difficult to access.

In terms of challenges, there've been multiple. I'll first speak about challenges in using participatory research. We found that there are limited guidelines around ensuring participation of marginalised groups, and very often those who are from the most low access backgrounds are left out of the research process. There's also a lot of difficulty in navigating traditional hierarchical structures within say, how programmes are funded and how organisations are set up which become real barriers to being able to promote equitable collaboration when working with lived experience experts.

And the last part around challenges would be on being able to include and speak to historically excluded groups. So groups that do not speak English, do not hold graduation degrees or are from socioeconomic areas which are already highly disadvantaged. So, being able to reach those groups requires a lot of effort and proactive effort from the research teams. I'm just going to speak of one example in relation to autism. For example, we've had participation in qualitative interviews from caregivers about wanting to understand what our needs for information for parents. But navigating stigma is a real value for caregivers themselves. Autism, and having diverse needs, is very often not prioritised in those Indian or South Asian social context, so it is difficult for parents to be able to participate in research of this kind, and therefore even more important for research teams to ensure privacy, confidentiality, and safeguard the interests of participants when including them in research.

Mark Lutton 10:57

Thank you Sweta, and [and] really looking forward to exploring a little bit more about those participatory research methods that you [you] use. But firstly, before we [we] do that, I would [I would] like to go to Tash. Now it would be great Tash to hear a little bit more about your research and how you started working with people with disabilities.

Tash Fothergill-Misbah 11:15

So, I sort of fell into Parkinson's Disease research at a master's level, and then took it through to [to] doctoral and postdoctoral as well where I studied the lived experience of Parkinson's disease in Kenya, and my master's research was in Tanzania. So I've really focused on [on] what it's like to live with Parkinson's disease in East Africa, and that's led into the current NIHR grant that we have now, which is looking across 7 different countries in Africa, so really trying to expand that knowledge about Parkinson's.

I've been really involved with the global Parkinson's community. It's such an exciting and vibrant community of people with lived experience who want to make change happen, and a lot of advocacy work around risk factors for Parkinson's disease and trying to kind of advocate for better care for people with Parkinson's disease, not just in the kind of you know, the continent of Africa and the global South, as it were, but actually across the world. 

And you know, the last medication that was developed was about 50 years ago, and there's been no improvements really since. But in terms of the continent of Africa, where I've done the most work, again coming back to stigma, there is a huge, huge stigma around conditions like Parkinson's disease, with really profound impacts on individuals, families and communities. And the stigma, again, as Sweta said, is [is] multi level with a lot of drivers and facilitators that [that] kind of make that quite a scary thing to experience for people. A lot of associations with [with] witchcraft that can be real challenges for actually reaching people to involve them in [in] the research process. So now I'm also trying to engage with the arts as a kind of co-production tool to tackle stigma in the communities, and I'll be happy to talk about that later in our discussion as well.

Mark Lutton 13:09

That's really interesting Tash and interesting that actually medication for Parkinson's has not [not] progressed over [over] recent years. What Tash have been the main challenges for you in engaging older people in your research, particularly those with Parkinson's, and how have you been able to address that?

Tash Fothergill-Misbah 13:25

So, I think the main challenge that we're experiencing is that people don't know they have Parkinson's, so it's very difficult to do research on people when you actually don't know that they exist or they don't know that they exist. And so one of the things that we're struggling with is we can't access people with Parkinson's from outpatient clinics because they haven't been diagnosed, they're not in the system. Even if we wanted to, the records might [might] not be available to us. And so one of the only ways that we can actually reach these people is by going into the communities. We've got two routes to do this, one is actually through a door-to-door prevalence study. So we're going through a demographic surveillance site, knocking on doors and asking census questions to identify and diagnose people with Parkinson's. 

The other way is to do this community engagement where we're going in and talking to community leaders and explaining what Parkinson's is. And, for example, in Ghana, where I was just the other week, they've done a lot of these engagement activities with local leaders, village elders, explaining what Parkinson's disease is to the communities, and they've actually seen an increase in people referring themselves to the local health services, which is incredible. So we've got these 2 routes of where we can actually find people with Parkinson's. 

So interestingly, from a previous prevalence study in Tanzania, 75% of the people that were identified in the prevalence study didn't know they had Parkinson's, and therefore weren't accessing treatment. And Parkinson's is a degenerative condition, meaning it gets worse over time, so if people aren't treated, their disability is going to progress rapidly, and the stigma associated with it means that people are often shunned from communities, from families. We've heard stories of people being physically locked away in the house and isolated from their families, so there are real severe consequences for people not knowing that they have Parkinson's, and not accessing medication as well.

Mark Lutton 15:21

Thank you, Tash, that's really interesting. And I would like just to pass over now to Andrew to reflect on what are your challenges [in] in your context? Is it similar to those challenges that [that] Tash and Sweta have [have] described, and how have you addressed those?

Andrew Ssemata 15:37

Yeah, thanks, Mark. I think I wouldn't differ far from Sweta and Tash about the things that they face. But I think what I want to talk about is the main challenges in engaging persons with disabilities in [in] a rural setting. So, for example, you find that for many people with disabilities in the rural setting, they find it quite challenging to take part in research or in social events.

And one of the key problems that there's non participation of [of] persons with disabilities in community activities, because many, like Tash said, are locked up, many times they are [they are] afraid, and of course there are negative attitudes and stigma faced by poor disabilities which hinders their participation, and that also hinders them from [from] coming into research studies, but also into social participation.

And these attitudes often stem from misconceptions like lack of awareness about their abilities, about their rights as a person with disabilities, or from key stakeholders in the community, and even their carers or caretakers, and that raises a lot of problems.

The other barrier I also find is that the [the] persons with disabilities often face unfair treatment, and this results into mistrust and unwillingness for persons with disabilities to engage in research, but also in community activities. And whenever this negative perception keeps building up and unfair treatment comes up, it kind of delineates them from what they would normally do.

But some of the solutions that we have found that have been helpful for us to engage many of these people include extensive community sensitisation and community engagement. So, we have made sure that many of our groups are aware of what we want to do. And this awareness helps them to shift their perceptions and foster an inclusive environment. Secondly, we've employed tailored and accessible strategies. For example, working with local [local] communities to ensure that our research interventions are accessible, but also they meet the needs of persons with disabilities. So, we are aiming to ensure that we try and do as many participatory approaches to the kind of research that we're doing, and this really helps to bring about involvement, but also encourages them to take part, because then they own the projects, they own the research, and that keeps them going. 

And finally, sometimes we ensure that whilst we're doing the research, we are conducting massive training. So we train the teachers, for example, in schools, we train the parents, and we ensure that people are aware about inclusion and participation of people with disabilities in research, but also in social participation.

Mark Lutton 18:23

Thank you, Andrew, and interesting to hear that it is [is] about the wider networks, isn't it, and the people who are [are] often within communities who [who] are perhaps carers or parents, as [as] you said, who [who] are supporting those individuals with disabilities to also make sure they're included in research.

It would be great, Andrew, to hear from you about how communities have been impacted by being part of your research. So you talked about how individuals, particularly in rural communities, have become engaged in research where previously they may not have been engaged in research studies. But how has that impacted them and their wellbeing?

Andrew Ssemata 18:59

I think the communities we are working with in Eastern Uganda especially, have really benefited from the research activities that we are doing.

First of all, the groups that we work with in the communities are not just solely for persons with disabilities. The primary focus is for persons with disabilities, however, we ask community members and caretakers to be involved, because they are people on the ground, and the people who take care of the persons with disabilities.

So, the communities have begun to realise and have an awareness of disability and a comprehension of the disability rights, and the challenges that people with disabilities face, and in turn this has related to community backing and promotion of inclusive strategies, especially in the healthcare setting, as well as in education.

The other thing that we see is that many of the people in the communities where we have our activities and our research, these people have a voice now. For example, we have one of the persons with disabilities, who was the leader of the group who never used to speak, but now has been promoted, and is actually part of [of] a local government council and sharing ideas and representing other people with disabilities.

So, there's been a favourable move towards implementing community health programmes as well, because we see that healthcare workers are now interested in people with disabilities. They are actually creating camps and health activities in the communities, targeting people with disabilities in particular.

This process has strengthened community networks bringing together community members, even those without disabilities, leaders at all levels and healthcare workers to collaborate. And this has actually overall improved the healthcare access for the general population, and I think that's very, very remarkable.

Mark Lutton 20:47

Thank you, Andrew, that [that] is remarkable, and I think hearing about that impact that [that] involving communities in your research has is [is] amazing to hear. I mean, Tash, we also had heard earlier that the impact on those undiagnosed living with Parkinson's have had as a result of being involved in your research, you know they have been diagnosed, and they're therefore able to seek support. What long term impact has that had on those individuals and what impact have you seen as a result of your research?

Tash Fothergill-Misbah 21:19

Yeah, it's amazing that we're able to diagnose people with Parkinson's who may have lived with it for 10/15 years and be very, very progressed at this point. And so we're able to [to] give them a diagnosis and support them with access to treatment through charity links as well. So access to medication is quite tricky, so they might not be able to afford or access it, so we're able to support them in that aspect, and this means that they can sort of function again and be part of the communities. 

They are also able to join support groups which exist, or we can establish. So, we've established a handful already in Tanzania, Kenya and Ghana through the research project so they're able to access this community of other people with Parkinson's and their caregivers, who are able to share information, they gain knowledge from healthcare professionals that they might not be able to gain from the health system. And so they're able to go back to their communities, explain what they have - that it's Parkinson's disease, it's not witchcraft, it's not superstitious, it's not supernatural - and build that kind of engagement back into the community, especially once people see that the medication that they're taking is effective in reducing their symptoms. And so I think that camaraderie in that part of the community within the Parkinson's community, as well as integrating them back into their own communities, is really, really valuable.

Mark Lutton 22:34

Thank you, Tash and [and] Sweta from [from] your side, have you seen that impact amongst communities that you work with from involving those within research, does [does] it have a wider impact upon those wider communities?

Sweta Pal 22:45

Thank you, Mark. I think very similar to Tash and Andrew, we've also seen impacts on the community that were sort of offshoot of the research process and not the primary objectives.

For example, we have seen in being able to bring together multiple young people who have lived experiences of mental health needs has, very often, also resulted in groups or sort of informal support groups which are able to help each other being set up. And these were not sort of the intention of the research process in the beginning, however, there has been an increase of such coalitions, networks, even sort of informal support networks which are not well known to research groups as an offshoot of bringing together voices of people with diverse experiences.

I think a powerful tool has been using or leveraging narrative based storytelling in our work. Where we've seen that people who have very different experiences, and especially being able to talk about difficult experiences in a context like India, where stigma is quite high, has helped in people to both relate with the story sharer, provide hope, as well as identify strategies that people can adopt in their own lives. This definitely has had an impact on how we see groups of let's say, mental health support come through and that has definitely increased in the past few years.

Mark Lutton 24:32

Thank you, Sweta. And that's really interesting to hear about the impact in [in] your context as well. I would like to ask you a follow-on question now. So, we've heard about the impact that being involved in research has on communities, but what is the impact of that involvement upon your research? So, have you noticed a change or difference in your research from involving those communities?

Sweta Pal 24:55

Yeah, definitely. While we see a lot of evidence as well as literature that supports involvement of people with lived experience of a health concern, especially people with lived experiences of disabilities right from the beginning of the programme, it's very, very inspiring to see this happen in real life when you are involved in research programme projects.

One of the examples that I would definitely want to share is from the NAMASTE programme, where we employed participatory research with caregivers of children who are living with neurodevelopmental disabilities. The involvement of people from diverse family groups, different types of parenting styles and different sites as well really helped us understand needs for information for families at different time points in the caregiving journey. For example, one of the key concerns that caregivers shared with us was lack of credible information and ability to make critical decisions about your child's care, especially in having access to information in a language that you can access. So most caregivers, for example, spoke about, okay, there's a lot of information about what is autism or what kinds of needs my child has, but these are all in English, and those are usually quite difficult to understand in for, say, someone who's living in rural India with access to a phone within the household.

So, we employed methods of participatory design, but as well as co-design to both understand where and what kind of information needs exist, and then to design with family members products as well as awareness tools that would be helpful for other caregivers who are now discovering, or who are now finding out about the child's needs.

So, I would say, being able to involve people who have experiences into the research process should be just very routine. It sounds like common sense, but it is very, very important to design and involve people who are impacted by a health concern into any intervention design or programme that you're aiming to work on and that only makes it rooted in the community's needs, but also is able to be designed in a way that it can be adopted and used by the community.

Mark Lutton 27:37

Absolutely totally agree that that co-design process is absolutely fundamental to research, and really important, that [that] is the ethos from the very beginning of [of] research studies. I'll come to you now, Tash. How has engaging groups with Parkinson's benefited your research?

Tash Fothergill-Misbah 27:57

So, we've involved people with Parkinson's and their caregivers in the research process, right from the development of our research questions and proposal. We held a few sessions with people from across Africa about what they wanted from research and what they felt was important, and that really helped in kind of narrowing down and designing our research questions to make sure that it was meeting the needs of the people that it was going to benefit in the end.

So, right from the beginning we've involved people, and it's benefited our research process. Now we have patient advisory groups, so people who have been involved in the research are feeding back to us about the process so that we can make it better as we roll out into recruitment into the different sites. So we have 11 sites, so we've phased our recruitment, and we can learn from what we've been doing and improve the process, and crucially, it means that we've been able to involve people who might have been left behind had we not done the engagement work, and we'd only have a picture of those people who have the resources to access health services rather than those who might never end up receiving a diagnosis, and those are the crucial people that we need to involve in research. And, as Sweta said, this community engagement seems so obvious and necessary, otherwise you're just your [your] research is just going to show half a picture, and so involving these communities really gives you that full picture of what it's like to live with Parkinson's disease from a broad socioeconomic spectrum, as well.

Mark Lutton 29:19

And Andrew, in your circumstances have you felt that engaging those [those] individuals with disabilities has allowed you to see that full picture in your research studies?

Andrew Ssemata 29:30

Absolutely. Just like Sweta and Tash mentioned, I think it's very important when you think about things like the co-designing and trying to make research more inclusive, you begin to see that your research begins to unfold greater things that you probably wouldn't pick up if we did the research differently. 

For example, in one of our arms of the study we are using people with disabilities to go ahead and train healthcare workers on disability, and it's phenomenal. You find the healthcare workers appreciate to see and actually understand the lived experience of this person's disabilities in training them on healthcare, and how to handle people with disabilities. And with this, you find that your research begins to create new discoveries that are more relevant, that are applicable and personalised. So you begin to see that people are appreciating, and when you go back to scaling up these interventions they are, [they are] more acceptable, and they are more inclusive because you have involved and engaged the people right from the start, and this co-development just enhances the validity and the relevance of your research, because those who are being affected are directly involved in the real context of your research and they're helping you build on the stones that you're setting up for your research questions. And when that happens, it brings about the knowledge advancement, but also the utility of the research findings in the community for where you work.

Mark Lutton 31:03

Thank you, Andrew, really great to hear about the impact and [and] what impact that does have both on your research, and also to the groups who [who] contribute towards the research.

As a very final question to all of you, I would love to hear what are your top tips? So, for someone maybe who hasn't engaged communities before, how can they go about that to [to] be inclusive and also to ensure they're leaving no one behind, what would your top tips be? So, I'll firstly come to Andrew again.

Andrew Ssemata 31:32

I think to those listening, my top tips would be one, build trust. When you build trust, that's the foundation of meaningful engagement. Secondly, you need to understand the needs of people with disabilities wherever they are, they need to be understood. And once you understand, then you're able to provide reasonable accommodation, you make everything simpler for them, and life just moves on very well, and that brings about empowerment of the communities and also encouraging full participation, especially for many who would be left behind, and many who would not be involved in research in [in] the first place. But when we build that as well, we need to think about continuous feedback. Do you actually create space in your research situation to get that feedback from the community to encourage more people to participate, but also to build on what you're actually learning from them?

Mark Lutton 32:24

Thank you, Andrew, that's really inspirational for people to come away with that message. Sweta, what are your top tips?

Sweta Pal 32:31

Thanks, Mark. I feel like Andrew’s covered a lot of tips, so I'll just add something that I feel very strongly about. I think it's very essential to start by acknowledging that lived experience is expertise and is able to add to the research. There has to be full commitment to involve and listen to the community and not just do it because it's important. So the researcher has to be fully committed in this role.

As someone who's not from a research background, I again also feel that researchers very often speak a different language which is not possible to understand by others, so being able to tailor your materials to the needs of whom you're speaking to and what you're trying to understand, and using the language that is accessible - whether it means using visual aids, using design tools, there are multiple options out there - so leveraging those is key.

And wherever possible, including and involving people with lived experience right from the start, so that they are able to contribute towards setting up the research agenda as well. If that is an option and a possibility that would also be useful in being able to design your research protocol in a way that's accessible to groups who we are trying to engage with.

Mark Lutton 34:01

Thank you, Sweta. A really important message that lived experience is expertise. I think that was a great message for everyone to be able to take away from [from] today.

And over to you Tash, what [what] are your top tips?

Tash Fothergill-Misbah 34:13

Firstly, just echoing Andrew and Sweta's top tips; absolutely important. I think the most important thing is right from the beginning, so it's not an afterthought, it's not something that we should do, you know, halfway through the research, even when you have the research idea, before you have the research idea, think about who you're going to engage and do that engagement right from the start.

I think the other important thing is to cost it appropriately. Don't think that people are just going to do this, you know, without any funding, it really takes a lot of resources so make sure that you're costing your community engagement and involvement within your grant. It is such an important part of it, so make sure that you're reimbursing people appropriately and [and] costing for your [your] engagement activities.

Mark Lutton 34:55

That's a really important message, costing your community engagement (and) involvement activities, that ensures we're being inclusive, equitable and making sure that the funds are available really to have comprehensive community engagement throughout your research studies.

Thank you very much to all our guests today, Sweta, Andrew and Tash, and a huge thank you from all of us to you for joining us. Please do share, post on X, and tune in to other episodes in the series which can be found on our 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, An Introduction and Practical Guide to Community Engagement and Involvement in Global Health Research, is now available and 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. 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.