Coproduction and research in Wales - the experience of a social enterprise. 

um, I'm Vicky Butler. I'm a co-director of a social business based in Wales working for Wales called car Collaborations. Um, the work that we undertake is creative and participatory research to, um with the aim of furthering social inclusion across Wales. So it's quite varied projects that we work on

Um, the best example of coproduction that we've had was, um, we got grant funding from the drill project and drill stands for, um, disability research on independence, living and learning. And the whole aim of the drill research programme that lasted for three or four years was to enable co-production in a research capacity. Uh, most of the other participants and receivers of the grants were universities working alongside, um um a activist organisations, um, and lots of the other projects had sort of steering groups and information groups to ensure that the research was informed

Um, the difference with our project is that we paid employed, um, lived experience. Researchers delivered a training programme, uh, equivalent to a level three, um, in research methods and social research skills, and undertook co-produced research where, um, we were informed by the young people from start to finish. So the whole research design, the questions that we undertook, who we approached and the design

I wrote the report. But the design of the report we used participatory methods to make sure that all of the each chapter and each section and the words that I used were informed by the researchers that we'd employed. Um, the actual research was looking at, um, transitions to adulthood

So it's called, um, young people and friendships what matters to us. And we were researching why young people, uh, with learning disabilities have higher and higher levels of isolation as they go into adulthood and feel, um, have fewer and fewer friendships and very fractured friendships whilst, uh, non disabled peers have exactly the opposite experience. So we were looking at why there is this, um, social relationships gap and making recommendations on what might change it

So sorry, just making as well. Gosh, that's that. That's really, um, interesting that you you mentioned there that you had paid researchers and people who were working like, um alongside unequal, And I know other people I've spoken to have said they've really struggled with that in terms of, um that having the lived experience, researchers in and they've They've often been told that they can't, uh, have have researchers fully involved in doing interviews and being part of the research process

Did you find there were any barriers with that for you or I wouldn't say barriers to much as challenges. I mean, if you if you use academic language and academic ways of training, then you're going to lose people, you know? But if you use participatory methods to train people and think about the research process is actually about asking questions and asking the right questions at the right time in the right way. So we based on on the training, was based on life experience that everyone has, um, the the huge advantage was having lived experience researchers

They know what to ask. They know what to ask. I'm not a young person, and I've got a background in academia as long as you're on

So you know, young people without that academic training, who had the lived experience of that isolation just going through transition themselves, knew exactly what to ask and how to ask it, and they should be the ones asking it. And I think it's insulting not to pay people. They're doing a job, and it's the idea of particularly young people with learning disabilities

You have endless volunteer opportunities. And the young people I worked with, none of them had had paid employment, and some of them were 24 25 they've been doing volunteering for 60 years. And it's like, When do when does that exploitation stop? So I think it's really important that people are on the research team

And that effort is made from researchers with academic training to work alongside researchers without academic training. Because it's completely possible. It just takes smart thinking and different ways of working

And what do you think the impact of that then was on on the on those that did have the academic training? Well, that was myself and my team. Um, my I mean, I saw myself more as a facilitator than a researcher. I was facilitating a process, so it's really useful to have the whole point of co-production is to bring different areas of expertise together

And so it wasn't about me taking a back step. It was me coming to the foreground, saying, actually, I do have this background and I do have this expertise, but I need your expertise and, um the way we build our team, I mean, we literally, um, did participatory methods with, um, paper chains. And I had different colour paper for the academic researchers on the project

Different colour paper for their lived experience. Researchers and some of the young people also had job coaches, and we had support from an organisation that was had supported some of the young people in transition. We had support from them about how benefits works

Um, best ways of, um, paying people, uh, making sure that there was emotional support as well because it's quite a big thing to go into a job when you haven't had paid employment before to making sure there is emotional support and that all the right things were in place so that, um, all of the team could excel and, um, be completely effective in terms of the jobs roles that we had. Um, the impact on the research was brilliant. The in the insights, particularly when it got to analysis because again the young people know how to analyse it

They were picking up stuff that us as academic researchers wouldn't have known. Yes, it's there, but we wouldn't have known the importance without the their input. Um, the skill of knowing when to ask a question and when to back off, because they've been in the same experience

Um, and also the impact on the research was, I mean, it just made it all more valid because the people that we spoke to, I think it was 76 92. Oh, I can't remember. But we spoke to at least 76 young people across the Gwent region of Wales, um, who were in transition to adulthood, who had a learning disability

And they automatically are going to feel so much freer and identify with lived experience researchers. More than myself and my colleague, we were just other adults coming in saying what may or may not happen, which is what? That's the experience of those young people's lives anyway. So it made a massive difference in terms of the quality and validity of the research

So I'm hearing that the impact on those young people and people involved in that process just being part of that process sounds like it's quite significant in itself. I think there were different. Yeah

I mean the impact for the research that made much better research. There was impact for the, um, lived experience researchers, two of whom have gone on to have other research jobs. Um, we employed a team of eight in Total, and our employment process was based on enthusiasm

So we didn't mind what someone's, um, I I think some of the team had formal qualifications. Some didn't have any. But that wasn't what was important, because if you're going with enthusiasm and will, then that's that's what you that's what you work with

That's what you can want and your staff team. Yeah, that's that's That's great. That's really encouraging

And and, um, and I was going to ask about you know what? What did what did some of the researchers go on and do? But you you've answered that already. I think it's, I mean, to be fair, I think, the level of prejudice facing people with learning disability in the job market and not up to date with the statistics. But it was at one point I'm thinking, about 2012

It was 73% of people adults over the age of 18 with learning disabilities are in paid employment. So I think for some of the researchers, it was actually they were quite angry after the experience because they had paid employment they were able to but actually getting employment afterwards. And that's one of the downsides of research projects that are time, time limited because we, you know, funding changes and comes and goes

But the the additional barriers that places on people with learning disabilities is is hard for any researcher. But I think there's additional barriers there in the job market and and in terms of the actual research itself, Um, what difference has has that then got on to make for not just the people involved in that, but, um, it highlighted. I mean, we had a launch in the SENEDD

And, um, the whole research team, uh, gave a presentation about what was important and why it mattered. The aspects of the research have gone on to have an impact. So, for example, the police and crime Commissioner for Gwent met up with some of the lived experience researchers and myself to talk about issues of bullying and hate crime, and where bullying becomes hate crime particularly in the upper 10 years

And, um, in bullying in community settings, what can be done about it? How can, um, young adults with learning disabilities report hate crime? It's not about being picked on. It's actually in a different level. So we did a lot of work around that

And the, um, the commissioner's office, um, changed their reporting mechanisms, particularly for young people with learning disabilities. Um, we're trying to push for, um, the apprenticeship schemes to change, but that's that's an uphill struggle, because that's, you know, massive amount of policy and strategy. But young people with learning disabilities to get apprenticeships need a certain baseline anyway, in G CS e s

If you go to a special school, you don't get your g CS e s at the same age that you do. If you've gone to a mainstream school, and if you need the g CS e s to do an apprenticeship and you find that style of academic learning difficult, then actually, the very on job learning that you would benefit from is denied access to you. So there there could be all kinds of different ways that, um, we were trying to show through our recruitment process and through our training programme about how to get around those things

But that didn't work so far. Yeah, that's that's hard. Um, and you kind of think Who says those rules should be in place? And what what is the alternative and job? Where's job coaching for people? Where's on on If we can have What's wrong with an informal apprenticeship where, um, young people with learning disabilities can have on job learning in the way that apprenticeships do but to do the job that they going for? Because that would again help access to paid employment and employment is important not just because of the financial exclusion but because of the social relationships so many young adults

Or when you get to 24 25 you get a sense of self value and self-worth from participating within, um, the job market and to just exclude people with rigid rules and recruitment processes. Your average job description is automatically going to exclude some people. It doesn't have to be like that

We can have creative recruitment processes. Yeah, and so this is Has there been any connection back into, um, you know more formal academic Um, routes, I suppose. Has there been an opportunity to influence other other research or other approaches? We had connections

I mean, our steering group included Cardiff University, and we had connections with the School for Social Care Research in Swansea University. Um, I think the difficulty is where you start and how, because it's such a formal education is so related to having what's described as career jobs. That to bypass that is is a really difficult process

And universities are so rigid. So to be a researcher in a university, you've got so many steps that you have to go up that I don't see yet how lived experienced researchers are going to get a look in in university settings, and there might be projects that work next to them. But in terms of having staff and researchers, I think it's an uphill struggle

Some universities are trying, but and researchers in the voluntary sector don't generally have that many links with researchers in the academic settings. Still, and do do you feel then there's a disparity between the research that happens in the academic setting and the kind of research that you're doing. You feel one is valued more than the other or it's I think it's different purposes

I think yes, it is valued more in terms of, um, particularly health research. I think it is a kind of there's this idea of robust and I don't mean qualitative and quantitative. But robust research is done by people with credentials, and it's done in an institution with credentials, and I don't think it really needs to be quite like that

And it's a bit of a misnomer because actually, you can do really robust research by involving people and the The validity, for example, of the research that we undertook was heightened from employing lived experience researchers. And the other problem is any grant programme is really difficult from the start. They all grant funders say they want involvement, but they would make the forms as complicated as possible

They make employment sometimes quite difficult in terms of new staff and how you're going to employ people. Um and it feels a bit it feels like there's lip service paid to involvement and co-production, but actually putting money where the mouth is and actually employing people to enable it to happen in a meaningful way and on an equal footing. I We've still got quite a way to go in some areas

What do you think might help? I think so. I think research in in my area of work in research have changing that criteria for funding programmes, making it much easier to give qualifications on job because it's still so complicated to qualify people, um, and awareness of different learning techniques. People can learn in all kinds of different ways

It doesn't have to be sit down presentation style learning. And I think with, especially when it comes to research, it's one of the most academic areas. It's kind of you you're Yeah, you're already facing an uphill struggle by the very nature of the work, Um, in terms of how it's perceived

And so I think also alternative accepting alternative reports. So we did a written report, and I built the written report with our research team from having, um, I put flip chart on the wall of the main themes that they come up with from analysis, so they so all of the team could see how what we done an analysis could relate to what we were doing in the report, and we just had loads of post its with little bits on, and people would wanted to focus on certain areas. So we then had micro teams working on chapters by moving post its around, and I asked the rest of the team to trust me to type the post its together they would be my subsections, and we wrote it all together in in that format

So really, I just saw myself as stringing words together, and the whole team had done all the work. But we also did a video report because we wanted it to be accessible. We would have liked to have just done a video report or maybe a cartoon

Or but funders still require written reports. Yeah, and I can imagine that's a helpful process to go through, um, in terms of consolidating the learning and and actually drawing out other other things from going through that process of collectively pulling that report together. Um, and and again, I think in other areas of research that that sometimes is missed potentially as part of the and I think dissemination as well

So when we came to have the, um, dissemination event in the Senedd, um the team had already chosen which areas they felt most passionate about so they could work up their own slides and their own, um, presentations. And it was then a matter of sliding, sliding again as being facilitator or sliding the different parts of the presentation together to keep it as so. It's almost like being or keep holding it together so that the, um all of the team presented the bit

And that, to me, is really important. Too often, head researchers take all the limelight and you've got a whole research team behind it, and it's it's not their research, it's ours. Yeah, yeah, absolutely

You've you've mentioned a few times you've used that word facilitative or facilitator or facilitated. And do you see that as an integral part of co-production and and it working in the way that I think it needs to be meted with it doesn't mean not recognising your own expertise, and it doesn't mean holding back it doesn't mean letting everyone else have control. It means putting people together and meeting in the middle, recognising all the strengths that are in the room and when you recognise all the strengths Actually, if we all have gaps in our knowledge, the gaps don't matter because you've got everyone's strengths together

And that is what will make a good copro productive process. And in research, that is what's going to make the most strong, the strongest, um, research data. What? I mean, I'm gonna try another question here, but it might not come out in a way

That's, um, uh make make sense. But what do you think with the, um, conditions if you like, or the the things that that helped the team of researchers and and stuff, Obviously the training and the the the more tangible things. But what else was going on that Oh, I definitely think our partner organisation

So we worked in partnership with, um building bridges in and their support and knowledge and expertise in in terms of the coproduction process. Um, having multi layers of, um, individual support was really important. Um, just as you would if you were in any, you know, in any research team, you would have individual support

Um, I think from our funders actually having the process properly funded and actively putting kind of money where your mouth is in terms of enabling co-production processes. Um, that was without that, then none of it could, You know, we would have been cobbling together on the edges, I think, um, and everyone willing, everyone willing, wanting to be there and do research. And to be honest, research has never been so exciting because it's often seen as quite a dry thing

And it's often seen as dynamic, you know, kind of dusty books and stuff. And we had we had amazing in depth life conversations and the analysis sessions were, um, full of passion and spirit and related to the equalities act and hate crime and, um, particularly the qualities around education and Children and young people's rights and UN c r c. So we got all I mean it really quite that's in depth, but it was so lively

And, um, that's that's really how Co-produced research should be. So people were clearly very engaged. Yeah, completely, completely

And if they chose not to be, then that would be OK as well. So some people weren't quite sure about a certain aspects, and we just would work the team flexibly according to people's strengths. So some people, um, there were a few of the lived experience researchers who didn't really want to be doing the interviews

And we just said, Well, that, you know Well, of course, that's fine. Can you pair up with paired with the interviews in case because it helps to do pair interviews or paired focus groups? Um, and some some, um, some people felt more comfortable than others doing focus groups, so but it's about you working to strength. Some people really enjoyed the analysis, and others were just like, This is what you know

This is deep, and it was like it was again working to team strengths. Hm hm. No, that's that's great

Is there anything else you'd like to add to Vicky before I stop the recording? I can't think of anything else. Um, I can't think of anything else. I think we need to get to co-production beyond seeing it as particularly in my area in research beyond seeing it as academic researchers working next to an organisation

And there's some kind of crossover, but the research is still done by the academics, and there's just a conversation about it. I think we need to get beyond that because to me to do truly copro, productive research. Get in there on the research team

Everyone needs to be a researcher. We need to live experience researchers, and it takes a different way of thinking it. It's otherwise

You're just kind of trying to do the involvement around the edges rather than really getting into what it means to share expertise..

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