Shoba talks about the value of coproduction particularly as a academic GP the importance of coproduction in relation to understanding the needs of diverse communities, shares her experience of research and coproduction in action around the Covid pandemic, how important it is to consider a coproduction in a diverse way!
Okay. Thank you for agreeing to talk to me. Do you want to introduce yourself? Yeah. So my name's Schober Poor devil. I'm an academic GP. Which means I spend some of my time seeing patients at my GP practise But I'm also a researcher at U C L. Um, and that's how I met Nick Hutchinson and the team at the co pro collective because of the work that I'm doing currently looking at increasing participation of ethnic minority communities in health research because that's something that I've really found is lacking. Um, So I've been doing public engagement work and research projects on that, trying to use the coproduction approach and learn more about it And so that's that's where I've come across. It sounds like really interesting and important work. So can I ask you, can you share with me an experience of co production that you've done? Yeah, so I am So when you come into this, I kind of started learning about it last year when I did this public engagement project that I just mentioned. So, um, I was starting to sort of develop ideas for research, and one of my ideas was looking at Covid 90 Vaccine confidence and I think minorities because last year when we were still very much in vaccine rollout, one of the problems that people are facing was the lower uptake in minority communities. So I decided I wanted to research that and find out more about it and see what was like feeding into that problem Um, but I also hadn't done research with those communities really before and all the research I've done up to that point. So I'm based at the health unit at UCL, where we do research on digital health. So we basically make and test websites and apps for conditions like diabetes Um, all kinds of other things. We're doing long covid at the moment as well. Um, and all the research that I've done up to that point was very much with one sector of the population So it tended to be white, well educated, middle class people who had the opportunities to get involved in research and, um had better access to it as well. But I was really interested in Well, how can we do research that better meets the needs of people who are less served by it? and how do we get them involved? How do we encourage them to get involved? How do we support them to get involved? So I knew I had to start from a place of understanding the problem first and understanding the barriers I knew I couldn't just launch into this. Research on the vaccine do not understand how people are feeling about getting involved in research And I knew I wouldn't recruit either if if I didn't understand the issues. So I managed to get some funding from the U. C L Community engagement team who basically provide pots of money to fund projects where you partner up with either with communities directly or with community organisations, charities who work with disadvantaged communities So it could be, I think, minorities. It could be, um, low income families. It could be anyone, really And the idea is that you create a project where there's a two way knowledge exchange, so you learn something from that community and you pass on knowledge or skills to them as well. So I came up with this idea of finding a group from diverse backgrounds, we with whom I could explore the issues around getting involved with research, but in the same way be able to teach your share skills with them, so they could something to take something away from it, too. So I decided to do a photography project We worked with a photographer who is based in Tower Hamlets, and a lot of our participants were based in Tower Hamlets is what's It worked out really well, and we came up with the idea that we would do this series of co production workshops. And I think we did. For in the end, um, where we work together to kind of brainstorm Well, what's going on here? What are the barriers to people getting involved with research? What do we need to do differently to make it easier? What can I take back to my department and my team and the broader university and say, Look, we need to do this from now on, Um, and the way that we kind of facilitated that was various discussions and exercises which Nick and the co protein use a lot in their sessions. We learned a lot from her, but we also used photography as a tool for storytelling and sharing experiences, and just you know, discussion as well. So the members of the group were kind of not talked, but we kind of talked about how to take pictures of things that you care about in your local environment in your local community that tell your story And then we come back and share them at each of the workshops. So we'd have, um, some time looking at the photos talking through them. What did they mean? What were they representing? And then we can move on to talk about, you know, there's harder issues around health experiences, healthcare, health research and having the photo really helped to open up that discussion and for us all to get to know each other And I feel like it really helped with the discussion about the health research because people had already opened up and shared something. And so it was much easier to talk about those difficult things as well. Um, so yeah, we did four workshops over about a month or so We didn't have that much time. And then we did portraits as well, and all the participants with choice, the professional photographer and we did a private view earlier this year where we exhibited some of the photos and did a sort of panel discussion kind of summarising some of the discussions we've had in the group and we video deal. We're going to share it more broadly, Um, so that, I'd say is my main experience of co production I'm now starting to think about how I can build on that project and how I can use it more both in my research and in my public engagement activities as well. So I've just got some more funding to actually develop a podcast based on the photography project. So we're thinking about how we do that, how we can produce that with people, um, from these communities who are well represented in research I'm also doing research. Now. I'm kind of closing my covid vaccine research and moving on to looking at digital exclusion So people who don't have the digital skills to access healthcare access, health information, access, health research and what we can do about that and possibly working with charities and community organisations that help provide digital skills training in the community, um, and working with them. So I'm going to be doing some digital storytelling workshops in a couple of weeks time in new and with a charity there where we're gonna be making short films, basically talking about people's experiences and sharing them. Um, so yeah, so I'm trying to incorporate it as a sort of method in as much of the work as I can, but I think it's really relevant to the people that I work with, and what I like about it the most is the idea that everyone is equal and everyone has something to contribute And I think that's such an important part of working with people who are underrepresented in research, whether it's different minorities or people with disabilities, people with mental health problems. It could be anything I think, one of the things that is difficult for those people getting involved with health researchers. They feel like the researchers The scientists are the ones with the knowledge and the power and and they almost feel like they're not being listened to or they don't have control over where the research is going and what the output is going to be and what the impact is going to be. And so obviously they're not going to want to get involved because they don't have that level of I guess, agency, whatever you want to call it in so many ways you could describe it, I guess. Um, So I think doing more co production work is a great way to tackle that Because if we can show people that know you're really valued in this you're an equal part of this in a way, you know more about this than we do. So we're learning from you. That could be a way of getting more people involved and showing people that we appreciate them Um, and also representing the voices of the people that were researching as well because it should be those voices that were amplifying and representing. It shouldn't be the voices of the researchers, because we get to do that all the time. So, yeah, it's it's something I'm really interested in And I'm hoping to do more of sorry. That was a very long answer. It was great So clearly you have been doing the work that you do for a very long time, and you said that you've only recently kind of dipped your toe into, so we're also interested in exploring and I think this really fits well with what you've said already. Um, so what changes do you think you know, doing co production has made in creating kind of the impact. So did it change the kind of outcome or the look and feel of the project I actually think it had Yeah. So using that photography project is as an example. I think it definitely showed how much we work together as a team So it wasn't. It was never just me. It wasn't showbiz project She was findings. It was always us as a group and us as a team. And this is what we think And this is what we've produced, which I think was really nice. Um, particularly because the topic was underrepresentation. So that was really important for me And I think in terms of impact, it has so much more impact because the photos, the ideas, the discussions, the findings all came from all those members of the group. It wasn't me saying I mean, I may have, like, summarised it and written it up and written case studies, but everything directly came from the participants. So, uh, there was no point where it was kind of just me deciding what the findings were, What we needed to do differently all directly came from them Um and I think that's really important with topics like this with these difficult topics, because the people that you want it to have an impact, those people I want this project to have an impact on is those people in those communities that don't want to get involved in research and I want them to see it and go OK, Those people got involved and had a really good experience and got a lot out of it. Maybe I could do that, too, or they can see the discussions we have and relate to it and go. I feel like that, too I felt like that, too. I've experienced the same barriers. This group understands how I feel This group is trying to do something about it and people can relate to that. Whereas I think if I what we traditionally do in academia is we write scientific papers in journals that no one has access to, and no one reads anyway, and no one understands because it's all in scientific language that's not going to have any impact on the communities that I wanted to have the impact on. It has its place, and it's important alongside the publicly facing stuff But I think we need to do all of it. We can't just do one, because I think if we can't and you just to have the scientific output and the papers, we're going to continue to disengage so many people. People are increasingly going to think we don't care about them and we don't care about what they think and we don't care about having an impact on them I think that's a really dangerous way to go. So I think we need to do more and more accessible, publicly facing stuff. And I think coproduction really helps with that Thank you. So I'm wondering about you personally and professionally. Somewhat value did co production have you personally and professionally? So yeah, this was another reason why I really liked it as an approach So I went to a few different training sessions with Nick and the team about co production and one of the things I really like and I started to do myself and my own teachings copied it is that she always talks about values. And if you look at the copra website and there, I think it's their vision and strategy, which looked at a few types of used in various things I've written as well. It talks about values and how their mission, their strategy, their aims are all rooted in core values, which are all about equality Valuing everyone's contribution. Um, acceptance, diversity, inclusion all of those things. And I think if you work in those areas, you do research in those areas which are run either health issues or populations who were affected by problems with diversity Inclusion. Um being valued being heard. Then you you have to care about those values as well, and those so those personally really appealed to me as values And it's something I get frustrated with in both in the NHS and in health care. In them. Sorry In academia and universities, they're both quite hierarchical, old fashioned institutions where it's like everyone has their position and you have a title and you know you have qualifications and your value is very much based on that on your role, and everyone's contribution is based on that, whereas I think to be able to do the kind of work and the research that I'm doing with undeserved communities. You have to get rid of all of that because no one cares. Really And as I was saying earlier, you can't address those communities as someone who is superior and you know, um, an authority or has more power because that automatically alienates them. So yes, So those were some of the reasons, both personally and professionally, why it appeals to me. So you talked Lots of positives Whether any negatives that you came across, I wouldn't say negatives, but well, challenges Maybe, I guess, have been so obviously, you know, the group dynamic is really important, and you never really know what that's going to be going to look like, particularly if you just go out to recruit from the public. You don't necessarily know who's going to end up taking part in the project. And so, um, how everyone interacts in the group, you kind of need to wait and see how that happens And we we had We were lucky. Actually, we had a really good group and everyone got on really well. Everyone was from slightly different backgrounds, but had things in common or could relate to each other in some way, which really helped Um, there were some members who are, you know, more chatty, louder than others. So at times, you know, how do you manage that dynamic? I guess, because again, it's all about power sharing, equality. You want everyone to have a chance to speak But I think that's true of any kind of group activity that you do. So that's about good facilitation, good team working, good leadership, which are all skills that I need to learn about anyway. Another challenge was sort of keeping sustaining the momentum of the group after the workshops So once we'd finished the workshops, we did the portraits, and then the plan was to exhibit all the photos in an exhibition, but it was kind of mid. It was like second lockdown, maybe, or it was a very difficult time where basically no one would let me into a building. So it took me months and months and months, and I really wanted it to be I initially really wanted it to be in either GPS surgery or a hospital, because I thought this is very relevant to health care it would be really nice to show it, especially like a practise near my own or the hospital where my office is based in. But we could not get in. No one was interested No one else. My email. So it took me months and months and months to get anywhere Um, I eventually managed to just organised the private view U C L campus. After months of badgering people, we never got a public venue to host the images and personal. Unfortunately, it's all online But there was this long period where I was kind of a single handedly working away at finding a venue. But the rest of the group kind of didn't know what was going on. Um, but it was hard because I have multiple projects that I'm working on So one of the things I really struggle with is just kind of keeping people up to date with what I'm doing, keeping people involved, making sure people feel continued to feel valued. And that's something Nick mention in a training session that I went to is it's really important to kind of keep people up to date and feedback about what's going on. So that's something I feel I find quite difficult And I'm trying to learn about ways of doing that. Whether it's about doing like email newsletters or having a website of using social media or some kind of easy way to do that, I'm still kind of figuring it out. Um, but that's that's one of the other challenges that I found It's just, I guess, sustaining The group's sustaining the momentum, keeping everyone involved. So now you're found co production? Could you imagine? Not like So, will you be you're introducing? Could you imagine not producing? Yeah, yeah, I mean, that's a good question, because research is so so There's so much like emphasis on, like traditional conventional methods and how we do things. Coproduction, luckily, is coming into researchers like a new novel method, particularly working with under served communities So it's starting to be recognised. What's starting to be used more? Um, so I think it is something I could use more, but I feel generally with research, you need to use the right method to answer the research questions. So I think it's a particularly good method for engaging people from underserved communities and underserved groups and as I was talking about earlier, giving them more of a voice, giving them more of a platform So I feel like with that kind of qualitative work that I do, it's about understanding people's views, understanding people's experiences. It would work really well, and I mentioned the project I'm doing on digital exclusion. One of the things I want to do is understand people's experiences of that and their experiences of skills training as well So I think it could work really well for that. But I think it sits alongside other methods as well, to collect other kinds of data and maybe to put it all together, um, to answer that the kind of overarching questions. And I think one of the challenges in research, because it's so based in like old fashioned methods, is getting that recognition for co production as well So everything we do has to end in a publication which has to go to a peer reviewed journal, and everyone wants to get into BMJ and the larger and on those kinds of things. And those journals and the people who review those journals may not recognise co production or understand it or understand the value of it. So I think one of the challenges for me will be using it as a method, but getting the recognition for it as well And it being valued so historically qualitative research was not valued as much as quantitative. Just doing interviews and doing focus groups was not recognised and valued. And to this day, the BMJ doesn't publish as much qualitative research as things like big randomised controlled trials or big epidemiological data based studies And this is an even newer and more novel form of qualitative research. So I feel like it's starting to be recognised, but it probably won't yet for another few years. But it takes for people like me, I guess, and you and you know, the copra team to keep doing the work and to keep pushing it forward and to make it be recognised by health researchers as well So, yeah, I think there's some challenges, but it's definitely something I want to keep doing it. Thank you. So you talked about all of those other different types of ways of conducting research? Would you say that co production is equally as valuable as all of those other ways? Yeah, I definitely think it is I mean, I'm I found it really useful for the things that I've described. Um, and I think it has. It's particularly useful for people who are underrepresented or who are difficult to reach, who are not understood as much, um, or people who feel undervalued because it is all about giving them a share of the project a share of the power and feeling valued So I think it works particularly well with particular communities, particular health issues. Um, so I would would I go back to my white well off middle class participants from my digital health research and get them to do co production? Probably not, because I feel like they kind of already have their input in many ways. Um, so I think it has its time in its face, basically So my final question would be Do you have any top tips? And then if you've got any other comments of views that you wanted to put forward, Please do. Yeah, top tips. I think so One of my worries is that it will become, like so many things that will become token mystic, so people would say, Oh, I'm gonna do co production because that person says that it's the right way to go about researching, um, people with HIV or, you know, whatever. And then they do it, but they don't do it well. And then the participants have a negative experience, and they put off over doing it again The findings are particularly helpful or interesting, and then no one's really gained anything. Um, so what I think a top tip would be was try and learn as much about it as you can before doing it, and try and learn good ways of doing it. So I'm really interested in what is good co production I even wanted to do a systematic review on it because I'm so interested in what does that look like? But having spoken to lots of people, everyone's like, Well, we all do it differently, and actually, there are no rules about how to do it. Well, so if you did a review, it would be all over the place because there'd be, like 100 different examples of doing it well, and that's OK, because maybe there are 100 different ways of doing it. Well, excuse me So I think, Look at examples of where it's done well and I always look to to Nick and the team for that. And the work that you guys do with people's voice Media is what I'm really interested in and love going through the website and the case studies that you guys have done because I think that's really interesting. Um, and you don't do it or do it for the right reasons rather than doing it because you think it's the right way to do something Do it because you're curious and you're interested and you want to hear from the people that you're researching. Um, get advice from people who have experience of doing it well, get as much training as you can, um, and yet value the people that take part in it as much as possible. You know, both financially and in terms of skills training If you can offer them that, um, one of the things I would do differently I talked about earlier is is sustaining the group more in keeping people more informed about the progress of the research as well. I've been working out ways of doing that and yes, showing impact as well, and try to work out what the impact is that you need to show. And that's through talking to people, um, and work out the best ways of doing that as well And the best ways of sharing your work and what the impact is. Brilliant. I don't have any further questions if you have any final reflections No, I think I think all your questions are really interesting and really relevant. Actually made me think about about it as well. So yeah, I look forward to reading more You keep me informed about where the project's going. Definitely. I'm going to stop recording me, okay?