With a focus on exploring how power can be effectively shared between researchers and members of the community, host Saumu Lwembe (Assistant Director of PPI and engagement at the NIHR co-ordinating centre, CCF) speaks to Professor Richard Lilford of the University of Birmingham and research groups members, Jayashree Parasheril Kunju and Amar Bahadur Timalsina. They discuss their NIHR funded research on Leprosy and Buruli ulcers in India, Nepal and Nigeria and power sharing within 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.
With a focus on exploring how power can be effectively shared between researchers and members of the community, host Saumu Lwembe (Assistant Director of PPI and engagement at the NIHR co-ordinating centre, CCF) speaks to Professor Richard Lilford of the University of Birmingham and research groups members, Jayashree Parasheril Kunju and Amar Bahadur Timalsina. They discuss their NIHR funded research on Leprosy and Buruli ulcers in India, Nepal and Nigeria and power sharing within 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.
Podcast series: Spotlight on community engagement and involvement: Improving global health research and outcomes through engaging with local communities
Episode 4: How can power truly be shared with community members?
SPEAKERS
Amar Timalsina, Saumu Lwembe, Jayashree Kunju, Professor Richard Lilford
Saumu Lwembe 00:06
Hello and welcome to our podcast series on Spotlight on community engagement and involvement. My name is Saumu Lwembe, Assistant Director for Patient, Public and Community Involvement and Engagement at the National Institute for Health and Care Research. I am joined by Professor Richard Lilford and his colleagues Jayashree Kunju from India and Amar Timalsina from Nepal. In today's episode, we will be exploring a rather elusive, challenging, intriguing but very important concept of power sharing. We will use Professor Lilford’s study on transforming the treatment and prevention of leprosy and Buruli ulcers in low and middle income countries as an example of how power can be truly or effectively shared between researchers and community members. Before going any further, may I welcome our guests to introduce themselves. Starting with you, Professor Lilford. Kindly tell us, our listeners about yourself and your involvement or interest in community engagement and involvement.
Professor Richard Lilford 01:04
Thank you very much Saumu. Yes, I'm Professor Richard Lilford. I'm Professor of Public Health Care at the University of Birmingham. Before I was involved in public health, I was a professor of Gynecology and Obstetrics at the University of Leeds so I gradually shifted over to public health. I do a lot of work in the delivery of services, both in this country and other countries abroad. I'm delighted to be the Director of the RIGHT programme on leprosy and Buruli ulcers as you've heard. I'm joined here today by my colleague, Sopna Choudhury, who is the manager for this, this large project, nearly five million pounds.
Saumu Lwembe 01:45
Thank you Prof. Jayashree may I welcome you please to introduce yourself to our listeners today?
Jayashree Kunju 01:50
Hi everyone. I'm Jayashree Kunju from Bangalore, India, a chartered accountant by qualification and someone with a personal experience of leprosy almost four decades ago when I got the disease and I got cured. And ever since then, I've been working actively for spreading information about leprosy, how it's a simple disease of no significance unless, if it's treated on time. I'm so happy to be part of the research with Professor Lilford’s team, so happy to be here.
Saumu Lwembe 02:22
Thank you so much, Jayashree . Amar may I welcome you to introduce yourself to our listeners today.
Amar Timalsina 02:28
Yeah, hi, everyone. Thank you so much for this wonderful opportunity to introduce myself. My name is Amar Timalsina, I am from Nepal. Like Jayashree I myself, is a person who has personal experience of leprosy or nowadays we call Hansen's Disease. I work for IDEA international as the global network coordinator. At the same time, I also support to IDEA Nepal in various ways. By profession, I am teacher and I founded a school of my own, which is in Kathmandu. And it is, I'm so delighted to be part of this research group and joining with Dr. Richard. And I have been involved in many CEI meetings in Nepal, supporting to the community members, and bringing their real voice, ground voice. And so this is really, I'm supporting in both ways. Thank you so much. And I'm so delighted to be part of this wonderful research team.
Saumu Lwembe 03:33
Thank you so much, Amar. Let's go and find out a bit more about your research. So Professor Lilford, tell us more about your research, and particularly how community engagement and involvement, or in short CEI, is embedded within it.
Professor Richard Lilford 03:46
Thank you very much. So when we were preparing this grant, when we've been shortlisted, but not awarded the grant, we travelled out to Nepal, we were joined by colleagues from India and Nigeria. Those are the three countries participating in this, in this, in this application. And we've discovered when we got there, that there was already an extremely well developed network of public representatives who were already advising leprosy care, treatment and management in all the countries. They worked closely with the leprosy missions, who are our partners in all those countries. There's a long tradition going back over for nearly a century of involving people in the decisions about the care that they receive by leprosy missions. And so, so when we found this we realised we didn't need to recruit looking for new public representatives, we already had a network which we could collaborate with. And so that's how we started to build our engagement. And indeed, this idea that representatives to advise on research should also be the representatives who are advising on the topics that are being researched, and on the service delivery of those topics. It makes sense, as I'll say, in my concluding remarks, it makes sense to involve them in the research as well, there are many advantages and no disadvantages to doing so. And also, while we were out there, we were working on forming the shape, the contours of the grant that we are ultimately going to submit. And the public representatives were hugely instrumental and informative in doing that. It was because of them, that we created the biggest emphasis, not on the treatment of, of ulcers, which we do do, but also on the prevention of the sort of rotating door of ulcers clearing up, recurring and the person having to be readmitted. And so much of our work, the bulk of our work, thanks to the input of our community and public representatives is in the community. And it's been an absolutely fascinating journey, we've now got five or six projects running in the communities around the world, which were shaped by those early days, and our public representatives have been at the front, forefront of guiding us through the whole of this process. It has been extremely rewarding and informative process of two -way exchange between the scientists, the local practitioners and the public that we all serve. That's my introduction. Thank you very much.
Saumu Lwembe 06:43
No, thank you. That's really interesting. And something you said there around actually going and finding that this community of practice is already existing. And that's quite strong, isn't it, you know, the whole idea of not going to create new structures, or reinventing the wheel and therefore, you know, avoiding a lot of wastages, which, at times, that's what most researchers do when they're going into a new territory. So really taking that asset based approach in recognising what is already existing in the local community or geographical area that you're going to do that research. I think that is really, that is really powerful. What elements of the CEI are you most proud of? I mean, you've confessed a lot, isn't it around, you know, the infrastructure that was already existed. And how you've actually taken those voices and, you know, informed the design of your research. But what elements of that work are you really proud of?
Professor Richard Lilford 07:39
I think mostly the fact that we've now got such a strong community focus. And more than that, we are concentrating on much more than just the disease itself. People affected by leprosy are often among the poorest of the poor. And they can become further marginalised because of stigma that may exist in their communities. So, we are doing interventions, which don't just aim to improve ulcer care, but actually seek to improve social integration of people in their communities. And also to economically empower because some people with leprosy, they’re often farmers, when they get leprosy, they have to make a trade off between continuing to earn a living, and caring for their ulcers where they need to, to avoid putting too much weight typically on their feet. So to look at economic empowerment as well. So we've ended up doing an intervention which takes care not just of the body, but of the psychology and the social situation. And we are evaluating these by rigorous, as rigorous as we possibly can, trial methods. And we are also looking at the sustainability. So there are many experiments that have been done, funded by leprosy missions and governments around the world, to provide improved social integration and economic development for people affected by leprosy, but invest, but none, none of those have looked to see how enduring the effects were, how sustainable they were. So looking at that, as well. And then the general model of involving people who already advise about service services, that general model that that we advocate, we're also using in our work back here, back here in the UK, where I lead an Applied Research Centre. And we always try when possible, to recruit to as our public advisers people who are concerned with the service in some way who have some experience of the service, and I'll come back at the end the advantages of doing that. Thanks very much.
Saumu Lwembe 09:48
Thank you, again, very, very, very strong areas there that you highlighted, something that caught my attention was the element of economic empowerment, because arguably many times when you talk about power and sharing power, people default into the decisions about the research, and you know how the public voice or community voice is involved in that. But actually, arguably, you could say researchers have the money, right? They're on a payroll, you know, as part of the work and recognising the elements, you've mentioned about in facilitating that economic empowerment, you actually give the communities you work with that economic power, they tend to be stronger by the time you leave out of your engagement with them than they were before you started the work.
Professor Richard Lilford 10:31
Well, it's true that they are that they do get economically empowered. But what I must tell you is this, that we don't pay for the well for the economic empowerment part of the interventions, we don't pay for that from the grant. We've been fortunate that we found collaborators who are already, who were already planning to make investments in that, in those communities. So in Nepal, the intervention, the actual economic empowerment intervention, is funded by the Australian Government. And likewise, in India, the actual interventions that we're evaluating are funded by leprosy mission, and have previously been funded by SIDA, the Swedish aid agency. So. so our role there is in the evaluation of the short term and long term effects of these investments. And of course, people with leprosy are in communities, rural communities, and we are also looking at the spillover effects from the leprosy investment on to other people as well.
Saumu Lwembe 11:45
Yeah, and the opportunity that all that brings in terms of galvanising the resources and the networks that that come within that context. So that's really powerful. Thank you so much. Jayashree, could I come and turn to you, please? And could you tell our listeners, how did you get involved in this project? What interested you? So if you can talk us your journey through? And how you are actually the role you're playing as well, currently?
Jayashree Kunju 12:08
Yeah, thank you so much. So I was very pleasantly surprised when I got this email from Dr Richard and foreign team. And I jumped in right away, because I have believed that the two different worlds that we are, you know, one is the research and the team with the technical expertise, and then there is the people who have been affected and have some experience of the, you know, the experience of the disease and have lived through it. And what I found wonderful about this is that there's a lot of inclusive participation with the team that is working on the project, which involves Doctor Lilford and team. And then there's Amar, myself and a couple of other people who have the personal experience. And there's the sense of, you know, respect, mutual respect for values and strategies, involvement and strategy. And this, there's a lot of action for authentic partnership, I think that is what is, you know, extraordinary, that's what is required. And a lot of times, it's like the research team might have understanding, maybe, to some extent, a limited understanding of the experience of what happens to people, you know, and the involvement that, you know, happens through participation of people like say Amar and myself, that makes the whole project research more say, you know, forceful or, you know, real. And that's what has been exciting. So I've been part of the, I've been involved in the grant development, my name has been added as part of that, and I've been, you know, in that document, part of I've been involved in the document writing of that. And then I'm part of the monthly management and finance committee meetings. I'm very involved in that I, you know, I try to put in wherever I can, and also in the overall Steering Committee, and the Scientific Guidelines Advisory Committee. And I also because of the network that you know, I belong to, as a person affected, we have our own networks, one of them is called the global leprosy champions, from all over the world, people affected by leprosy. So I've been able to help recruit more patient representatives to the team through my links. And I've also been involved in the development and writing of self care guidelines. And I wrote happily, I'm very happy to be involved in writing a blog article for NIHR on my journey from leprosy patient to supporting communities and shaping research. Of course, I was very, very strongly supported by Magdalena. I want to thank her and Sopna is always in the background, the teams from the same team NIHR and also contributed to article published in leprosy review journal, on the experience in receiving and practising self care as a person affected by leprosy, although I'm not someone with any sort of handicap, but I interact on a very regular basis with people who needed self care. And I’ve seen some amazing work in the community. And I think that became a very important input for us to take it forward with regards to how community involvement can help.
Saumu Lwembe 15:21
Thank you very much, again, very, very, very rich information there that came out. And one of the things when you're when you're speaking about something, I picked some elements that one could argue are the ingredients that necessitate power sharing, you know, when you're saying about the inclusive participation, having the mutual respect for values, having the appreciation of people's lived experience. So power sharing isn't that elusive thing actually, there are some, you know, steps if you like that one needs to consider to make sure that it's done in a more meaningful way. So that is really strong. And I was attracted by, you know, the level of activity or involvement at the strategic levels, you know, the, you know, the groups that you mentioned, from being a co-applicant to sitting in the advisory committee. To what extent do you feel your voice, you know, is meaningfully integrated in those strategic groups that you sit? To what extent do you feel you have power to share anything to influence anything, discussions, decisions at that level?
Jayashree Kunju 16:19
So I would say I have more power than I might have used, because it's a very open forum, and Professor Lilford and the entire team is like completely engaging, you know, people like, say, you know, involving you, and reaching out. And so I'm like, completely on the ground, like, you know, with the team. So I think the extent of involvement is, like, tremendous.
Saumu Lwembe 16:40
So that's really great. And before we turn to Amar, I'm really interested to hear from you if, because this, again, this is something that we've really struggled with, or some, you know, researchers have struggled with around really having a meaningful power sharing mechanism at that strategic level versus, a tickbox, we have someone we're sharing power with on books, but actually in practice, it's not happening. So what tips would you give to someone involved at the level that you were on how they can be impactful? How they can have a sense of leverage sense of influence? Or power? If you like, in?
Jayashree Kunju 17:15
Yeah, so I would say it's a it's a two ways, the culture, you know, the first step that sets up, you know, the environment, which, you know, the team here with Professor Lilford is providing, so I think it all starts from there, because power cannot come from, you know, the community. It doesn't it, it might be ideal, but it's not, that's not the way things go. And that's the reason when the empowerment starts happening at the community level then they find the voice. Right. So I think it's a very, I would say, it's, it's like a kind of a give and take, and it has to emanate from, not from the community, because the community comes much later, because they're not naturally empowered.
Saumu Lwembe 18:00
I think you've, you've given a very good insight. And especially, you know, it's one of those I call Twitter moments, one of the things you've mentioned, it's about creating a culture that is conducive to support power sharing. And this is what you say, was quite strong. It's coming across, it's quite strong in this research, that the whole idea of having a grassroots approach really, you know, from the ground up, then it becomes really, almost conducive. And it allows, you know, the community members to be able to have that voice to share the power in that space. So yeah, no, thank you. Amar, I'm very curious to turn to you. How did you get involved with this project? What has your role been? And what have you found in terms of, you know, our discussion topic today in terms of power sharing and your experience within it?
Amar Timalsina 18:51
Yeah, first of all, thank you again, Saumu for this wonderful opportunity. And like Jayashree I also got an email from, from NIHR. And from Dr. Richard and I was so delighted. First I went to through the documents that he provided to me, and I studied all the documents. And, you know, I thought I decided myself that, you know, it was, it was a great opportunity for me to be part of this research. Immediately, I decided myself and I promptly responded. And I'm so happy to be part of this research group. The main reason is as a person affected by Hansen's disease, and I struggled a lot and not only myself many people who have experienced Hansen's disease, of course, they struggled in this way or that way. So, as a lived experience, this is a wonderful opportunity for me to be part of this and contribute to the community, because our community members, truly we want to reach to them. We want their real voices. We want the ground voices. So I think that you know, involving myself like Jayashree so, the real voice of people who have experienced Hansen's disease can be obtained. So in this way, I'm so delighted to be part of this group and to be part of this committee also.
Saumu Lwembe 20:18
Thank you so much. Now, you said something very strong here, which for me adds into my ingredient list around power sharing, you know, when you're saying how you were approached in this project, you received an email and the documents for you to review. So there wasn't any element of coercion. And, you know, the element, the, you know, the element around having an informed choice, from the outset being given the documentation to review. And for you to just make that conscious decision, whether you want to be involved in the project or not, that is powerful. And then oftentimes, it's missed. You come across some research where someone just sent them an email, send someone an email, or just word of mouth, and without sufficient detail of the work. And then people signed up, then later on, they feel shortchanged, and actually feeling why did you give me half truths? So I think that is very powerful. The power of informed choice, the power of making available to you all the documentation about the research project, then you decide as to whether you want to be involved or not, that is really powerful. So I think we had discussions earlier on and there's, you've been active in the project. Could you tell us a little bit more about the kind of work that you've been doing in this project? I think you're facilitating some meetings in Nepal?
Amar Timalsina 21:36
Yeah. Right. Yeah. Yeah. Thank you. Again, I've been facilitating the meetings. In many meetings, I think more than five, six meetings that I attended CEI meetings, and I got a wonderful opportunity to firstly to interpolate to translate as the translator. So, so what I found, our brothers and sisters who have experienced Hansen's Disease and leprosy, they feel so comfortable, to share their, their feelings with us. Right, if you know, they don't feel so much comfortable with others. But while we say that I myself is a person who has experienced leprosy. So if I start saying that saying like that, they come so openly, without any hesitation, and they bring the issues and the ground reality and the issues that they have been facing. So this is very important that our involvement is very important. So I found, you know, this is very important.
Saumu Lwembe 22:39
Thank you, I'll come to you, Professor Lilford. So you can, you know, enlighten us how that community voice has shaped the decisions in the delivery of the research. But Amar, you said something quite strong as well, in terms of the kind of work that you've been involved in outreach, but translation. And it's very important, because the element of power sharing starts with having a common understanding. And that common understanding often enough can get missed out if people are communicated in a different language. So not going there speaking English and assuming people will understand English necessarily, for example, or going there to speak a research speak research language and as much as it's in Nepalese or is in the local dialect, but in a research speak, so you are involved in the translation and making sure that people can actually understand so you're on the same page, that is another of what I call ingredients to power sharing, making sure you are communicating at the same level, so that you are not at cross purposes, would you say Amar?
Amar Timalsina 23:38
And also, I want to add one thing, that IDEA Nepal exists in all seven provinces, Nepal has seven provinces, and IDEA has a very strong network in Nepal. So it has committees in all seven provinces, so that, you know, whether in, in all the provinces, so where CEI meetings are conducted, so our strong involvement, our brothers and sisters, we are we already aware to them, and we invite them to join this meeting. So, like, Professor Richard, he mentioned that it also enhance their capacity also, right. It also enhance their, you know, capacity more, you know, in terms of awareness, and advocacy also.
Saumu Lwembe 24:26
Thank you Amar. Professor Richard, I know you've mentioned this before, but you know, just you know, for if you can remind us again, how the community voice that has come from all the enormous activity that Amar has been doing in Nepal, for example, has shaped the decisions in the delivery of your research.
Professor Richard Lilford 24:43
So you will notice that behind Amar’s head is a poster for the International Association for integration, dignity and economic advancement. And thanks to the voices of people like Amar, and his colleagues, that is precisely what we study, the integration development and economic advancement. In our study, we'll be measuring those things, making formal quantitative measurements of all those constructs, the degree of integration, the degree of economic advancement, as well as the physical condition of people. And that has been the result of the power sharing, if you like, the, the collaboration, sharing of power, decision making influence and responsibility between all of us, and learning from each other as we do so. So I've learned a huge amount from Amar, Jayashree and all their colleagues about not just Leprosy as a disease, I knew quite a lot about that already as a doctor, but about leprosy as a social and psychological phenomenon. And that maybe they've learned just a little bit from, from my team, about some of the design issues in research. So one of the manifestations of that has been the form of the research, which I've described, as you said, but we also published a set of guidelines now, for the management, this time, specifically, of people who are at risk of getting ulcers because they have neuropathy, they can't feel because they can't feel they injure themselves and form ulcers so just as in diabetes, we set up a formal set of guidelines for the care of those which are being promulgated around the world now they've been published in the in the main leprosy journal. And there'll be on display at various conferences that we go to, and have been disseminated to the leprosy missions around the world. And in November, I think it is Sopna, we are all going to go to the Leprosy Congress, the big biannual Leprosy Congress, in Hyderabad, where we will be disseminating some of our early findings, the guidelines, and preparing the grant for the results that are going to come out over the following year after that. So that dissemination we've pre prepared for our dissemination. And a large part of that is through the networks of, of colleagues that not only will we strengthen the supply side of leprosy care, but also the demand side, represented by people who are affected by this disease.
Saumu Lwembe 27:17
Thank you Professor Lilford That's, that's really strong. In terms of, you know, picking on my next point, actually, around the sustainability element of it, you've already talked about some of the results that you know, are emerging or have emerged and will continue to, you know, to unfold because of exactly this, the idea the concept of power sharing, that you have in, you know, going on in your research project. But talking a bit more about the impact, and you know, the long term benefits if you like of this. So, what is the anticipated impact of your research in other areas such as health service delivery, and/or policy decisions?
Professor Richard Lilford 27:57
Well, I think our work is a great model for integrating people already involved in shaping services in the research, which evaluates those services. Our work on the treatment of that for Buruli ulcers we got a big clinical trial running there, which is running in the Anandaban Hospital in Kathmandu, but it's treating patients from the whole country. That is a unique study, tests a method of a sort of artificial scab, a product made from the patient's own blood to promote their healing. That will, if that comes out as a positive result, then it'll affect not just people affected by leprosy, but also people with diabetes, because it's the same kind of ulcer. And if it works in the one condition, it’ll work in the other, it hasn't been trialed properly in either condition before. So we will have the answer to that. But above all, is our work in the community. And we've got, we’ve got projects running, investigating community care, in all three countries. We've got projects on sustainability, and four projects we got two in Nigeria. And they're looking at sustainability of previous attempts to improve the condition and lives for people with Leprosy, and then so all that all that information is being shared, the study designs are being shared, our recruitment, our questionnaires are all being shaped by public involvement. And we look forward very much to disseminating those in due course, through networks of people that we have engaged so far. And of course, I should make this further point of course that, that in research, we, you know, we get a grant and we do research, this is a four year grant, we hope it'll be a four and a half year grant, but then the funding from the agency from NIHR will come to an end and obviously we will try and try and maintain our relationships. But it’s difficult because we will we won’t have the funding anymore, we'll try to get follow on grants, but they can't be guaranteed. But one thing I can be guaranteed is that the people we work with, they're going to continue to be associated with leprosy missions and the hospitals and clinics that they've been working with, that will continue in perpetuity, until the last person with Leprosy in the world has finally been treated. So that's a way of making our legacy more enduring.
Saumu Lwembe 30:25
And that in itself is really powerful in terms of that long term impact of you know, that you leave in the community, to use your own word, the legacy that the project leaves, and quite interesting to hear Jayashree and Amar’s view on this, but some of the feedback we get from the colleagues like you getting involved in these spaces, that is that they feel empowered to actually negotiate power spaces in other projects beyond in other spheres, beyond the research that they're involved in. So for example, in policy decisions in getting very active within the in the civil society sector, do you find you have a similar experience? Is there anything that you've got by you know, for yourself as part of this? Maybe your confidence enhanced that you feel you can go into spaces that probably previously you wouldn't?
Jayashree Kunju 31:18
Yeah, absolutely, I think it was very important to be involved in this project. And the way the process of the project the involvement of you know, Amar, and myself and the rest of us who participated. So I what, how I say it is that, you know, it's like authentic community and academic partnership, right. And it leads to, say, increased accountability, and also equality between us, you know, the two sides, and I think that creates a lot of possibility for us too I'm sure, I'm talking like, you know, some of us will be involved that we take this to our lives, and to the other communities and groups that we’re involved in, and, you know, kind of make us available for such interactive participation. So that's something like, I think it's like achieving better and more acceptable decisions, because people from the community have been involved in the process. So that is the takeaway from this entire experience, it definitely has made me a more involved person.
Saumu Lwembe 32:23
Thank you, Jayashree, how about you, Amar?
Amar Timalsina 32:26
So many parts Jayashree covered, but what I want to add is, since many years, I have been advocating for meaningful and impactful participation of people who have experienced leprosy in all levels, not only that we need to leprosy people who have experienced leprosy, right for this committee. Okay, now, we have to finish not like that, you know, meaningful and impactful participation. So that sense we have got in this project, that sense we have got in this research, and so we are so happy that as Jayashree many times, she mentioned that our voices are strongly heard. And we have that we have sensed that. And so this is very good. And we really appreciate that.
Saumu Lwembe 33:10
Quite encouraging the true testament of leaving no one behind. So, I mean, what I've heard so far, and listeners, you probably will agree with me is that there's been really glorious events that have unfolded around CEI in this project. I wonder though, Professor Lilford, what, if anything, would you have done differently in terms of CEI in your research award?
Professor Richard Lilford 33:35
So I’m sure I haven't been perfect, but I can't particularly think of anything right away. I mean, I think that the involvement of all public representatives in our guidelines has been, it's been worked through very successfully and the guidelines have had a lot of publicity and published. I think that question really is for Jayashree and Amar to answer, was anything I can do better? I certainly like to do that.
Jayashree Kunju 34:01
You made my task tough Dr. Lilford because I find nothing that we could have done different. I think we are, you know, raring to go and we're doing wonderfully well. I find it find it every step there's so much of collaborative communication partnership, and I must place on record, you know, the team that's behind, you know, like, like this extreme level of, you know, like transparent communication. So, I want to put on record like Sopna, Magdalena and the rest of the team have been very cooperatively interactive and transparent in their communication. So, I think we are good.
Saumu Lwembe 34:41
Thank you and Amar do you have any reflections around things like
Amar Timalsina 34:44
Oh, yeah, I also agree with the team, with Jayashree that are you know, that so many good things are happening. So, so I entirely agree and so many support that we get from Sopna, Magdalena so, so I think that you know, we are heading towards the right, right direction. I can say this much yeah.
Saumu Lwembe 35:04
Thank you so much so what I'm hearing from all of you really is that actually, when you get the concept right from the outset, in terms of power sharing, you almost open a structure for yourself where you are able to embed continuous improvements, because you're getting these views and suggestions for change as you get along. So really, there isn't anything that massively, you know, like massively different you would have done because you’re incorporating the changes as you go along because the power is shared, you are able to get that input and that feedback, almost like a continuous loop. Now, I really going on to our my final question, really I’m keen to tap into your wisdom here, you definitely have something you've got it right, it's doing really well for you. But I'm conscious that there are other researchers out there, where they're at the beginning of the journey, or they're quite apprehensive around, you know, letting go of some power spaces with some community members. If you are giving advice for someone looking to embed the CEI in their research, what three tips would you give them?
Jayashree Kunju 36:09
I can give one tip, collaborative power sharing.
Saumu Lwembe 36:13
Collaborative power sharing? Yeah. Listeners, I hope you are tweeting that. Yes. Any other tip?
Professor Richard Lilford 36:18
I'm involved in a lot of grant applications and giving people advice on their grant applications and reading grant applications. And I think the research community, here in the UK, really does tune in to public and patient involvement, it’s been quite a strong theme in the NIHR since its inception, and it's got stronger and stronger over that period of time. I think perhaps some people when they in the early days, were sort of reluctant participants because that they just knew they had to do it in order to get their grant. But I think as people have become more and more familiar with public engagement, so it's they've actually assimilated the ideas of engagement, realised how valuable it is for all the reasons that we've discussed at every stage of the research. To some extent, and I found this in my applied research here in the UK, to some extent, either researchers are leading many other organisations in the extent to which they are committed to the notion of power sharing in their research, where I find that, although we involve lots of, we always try to involve people who are shaping the services in our research, some of those services don't have as much engagement as they should. And so this may be one area where we are ahead of the curve and where we can be a bit on the vanguard and inspire other parts of the health and social care system to copy what we've done in research.
Saumu Lwembe 37:54
Thank you so much. So I'll take that as an invitation dear listeners, if any of you want to know how to embed CEI in research, Professor Lilford has just offered that he's happy to have a conversation with you, to take you through how he's done it. And I suppose the tip I'm getting from here is just do it, you will be happy that you did.
Professor Richard Lilford 38:11
May I just say that, you know, it's not just me it's so it's a whole team that I've got working on the on my Applied Research Centre here. My previous work I did on Leprosy, the work we're currently doing on on work in slums and informal settlements. The work we are trying to do, planning to do in cancer in all of these things, it’s my whole team that has helped always it's quite a big organisational task in, in creating situations and forums where power sharing can really take place. And I must thank my team and in this particular context, particularly Sopna here with me, and also our colleague, as we mentioned a few times and Magdalena Skrybrant who leads across all my research themes on public engagement, I'd like to thank them for their, for their strong support.
Saumu Lwembe 39:00
True testament I think, to the commitment of power sharing to a point of, even in terms of the accolades and the achievements is, you know, you could hear from Professor Lilford here saying, it's not just me, don't just recognise me, recognise everyone, because, you know, I am just a spokesperson of everyone else, but we are here as a team. So thank you so much for that. Well, well, thank you so much, Professor Lilford, Jayashree and Amar for what has really been a great discussion, and a huge thank you to all our listeners. Please do share, tweet and tune in to other podcasts in the series. And please do let us know what you think by sending an email to social.media@nihr.ac.uk. That's social.media@nihr.ac.uk. That's all from us. Enjoy the rest of your day.