Ben talks about the value of coproduction to academia and research, and how culture needs to respond and adapt to include more lived experience.

mhm. So, Ben, um, do you just want to tell me a bit about your experience of co-production? Yeah. I mean, as as part of my PhD. Um, I involved, um, patients and young people in designing the, um the interview questions that I used and, um, I suppose also involved other professionals in, um, in designing the study as well, and spoke to different people about how the study should be designed about the focus of it

Um, you know, about those research materials, And then, um, after that, I've also involved young people in designing a questionnaire for young people around death, anxiety and experiences during covid just again. So they sort of understand from the beginning what the process is, what the questions are, um, how they're involved, make sure information is clear. Um, but I'm really interested in involving people from the beginning of studies from the beginning of research in the planning process, the design process through, if possible in data analysis

And this is something I'm working on with another piece of research at the moment trying to get people involved from the beginning, um, rather than as an add on to a piece of research just to tick boxes, which I think sometimes co-production or PE p. I seems to be so that that's how it feels sometimes in your experience. Yeah, I think it

I think it is. It's It's like here's a piece of research. We'll conduct this research, and by the way, we will, uh, we'll get some people's views on on this and we'll tick that box of P P I or we'll ask some service users, and I think it probably goes more

I think it's probably more comprehensive than that. But from my experience, it is sometimes a bit of an add on, and I think that just that's not valuable. That's not valuable for the research

I think it devalues service users, and I don't particularly like the term service users sometimes, but it devalues people's experiences. It devalues their views, and I just don't think it's particularly helpful for for research as a whole. So what's been the impact on the research that you've done? Do you think on the research that I've conducted or on the stuff that I'm doing at the moment in terms of production? What what do you think has been the impact of working that way

I mean, I think actually working with people and including people, um I think it's made, made my research stronger. It's made my research more valuable. I think it's made the I suppose from an from an academic point of view, it's made the research design, uh, more rigorous

It's made the findings more reliable and more valuable. Um, and it actually gives people a voice, so it gives. It gives those individuals a voice, and it gives them value

And it recognises what they're going through, what they've been through, um, which gives their conditions or their experiences some value and some worth as well. Whereas I think otherwise, I say it just sometimes feel a bit like a tick box exercise. So, um, what I've what I'm trying to do at the moment in in probably just trying to think at least a couple of pieces of research is to actually push to get people included from the beginning and say, Look, let's let's get them along to these meetings Let's ask them about how they would like the research designed and how they would like to to be involved, how they can contribute to, um, analysis of data or collection of data, because I I suppose I can sort of, like, say, from an academic point of view, I can think about the research process

But when I'm conducting research at the moment, I'm just starting some pieces of research. One piece of research is into, um, uh, deaf culture and experience of deaf people, you know, and and and as a hearing person, I haven't got anything any experience of that at all. So it would really limit the the research if I sat down and tried to conduct that research myself unless it was a literature review, In which case you just go and look at the literature and analyse it

Um, but if I'm trying to conduct some primary research, some qualitative qualitative research into the experiences of deaf people during covid, then it's really important, I think, to talk to those people, communicate with those people and include them from the beginning. So I'm working with a with a colleague at the moment, and he's got some really good links to, uh to the deaf community. And I said to him, You know, do you want to approach the You know members of this community and say, Do you want to come to these meetings? Do you want to be involved in this? Do you want to? You know, do you want to be involved in collecting data and signing because I can't sign, which is, you know, a bit embarrassing to start off with, But I can't sign

So if if someone's interviewing or if someone's communicating with someone who's deaf or hard of hearing, it would be really good to actually include people from that community who can communicate clearly, who can actually kind of, if you like, you know, interlock the two or or weave in those the sort of hearing in the deaf community and actually collect more valuable data. And actually give that members of that community say that value and that worth rather than someone like me. He'll just say, Right, Well, I'll just come in and I'll I'll give you some questions because I can't understand you and I'll get out of you

I can, from an academic point of view from A from a, a white middle class hearing person's point of view. Then I'll write it up in you know, in the way that I, I think is best. You actually gives those people some value and say, Look, do you want to be involved from the beginning? Help us design this research

Help us think about what's important to you. Help us to look at how to how to communicate with people, how to analyse information, how to write it up. Um, and I just think that's a really, really valuable process

Rather than saying right well, I'm going to come in and conduct some research. Do you want to look at this questionnaire this list of questions If if you're OK with it, I'll go ahead with it. That's just, you know, that's just such little value in research

I think it's it's hardly worth doing it. So So, yeah, Having those people, as as researchers alongside you, in a sense is, is what will make a big difference. Yeah, and I and I think in that sense it is equally alongside, not like, say, well, I'm an academic and I'm here and I work in a university and you're just in a community group or you're you're kind of like an add on down here somewhere we're all equal

So you know, when we're talking about um, including different people and different bits of research and understanding them. It's not just about reading the literature and saying, Well, I've read the literature. I know what people want It's about saying Well, I've read the literature and I understand it from this point of view, But I don't understand what it's actually like to be in that situation, or I was a student at some point, and I know what it's like to be a student and be in this situation

But now I'm an academic. Now. I'm not a student anymore

And I need need to hear a student's point of view, a point of view. Or I need to hear this person's point of view because hearing it in someone's own words is much more valuable than hearing it sort of 2nd 3rd hand or trying to put yourself in that position. So if you're conducting this research, you could have sent out a questionnaire or you could have sat there and thought, Oh, this is the value of Co-production because this is what it says in the literature, but hopefully it's going to be a lot more valuable for you, hearing and talking to different people and and just hearing our experiences and whether we're frustrated or whether we're annoyed or whether it's going well and to then gather that information together

I think that's a lot more valuable than just sitting in an office somewhere thinking, Well, this is what it could be. Do you think you've been able, been able to impact or influence other people in terms of academia and get them to think differently about how they approach research? I'd like to think that that I've had some impact and I've made people think actually, it would be worth having these voices along at this meeting. But I think that sometimes academia as a discipline

Well, I always say there there's always something I say to students and and in in meetings in front of other academics in front of other people. I think historically, traditionally I think some parts of academia are quite snobby and and it's like, well, you know, we're academics, so we we're sort of trained or we've got qualifications. We know what we're doing

We work in a university or we work in research and this is how it's done. So I think that's one aspect of it. And I think another aspect of it is that there's just there's a there's a better culture now than there used to be

But there's not a real culture all the time of inclusivity. It's still almost a them and us and something which I suppose I've I've picked up from. The co-production meetings I've been to again, from from people who have come along with their own experiences, is that sometimes it works really well

And sometimes it's almost same as though they're an add on. If I go to a meeting and it's, you know, I will, because it's during the day, I'll get paid for it. If they come to a meeting, then sometimes, Oh, we can claim your expenses or, you know, or you come along as a volunteer and and that's not how it should be

We should. We should all be equal because we all bring a voice to the meeting, and that voice is really important wherever it's from, whether it's from a university, whether it's from a community, whether it's from a hospital or a different service, it doesn't matter. And so I think that those are the kind of barriers which I think there are is that sort of snobbery

Sometimes it's the, um it's not seeing people as equals and and I think the hassle and the time that goes along with that. It's like, Well, now I've got to go and find people who are who can come and kind of add to this not sort of like, you know, this is the process and this is what we're going through. It's like now, now I've got to go and find some patients

Or now I've got to go and find people, then sort out the expenses and travel and whatever else they've got to get time off work. And they've got to do this. Um, I'm working on another project at the moment where it seems to be working pretty well

There's somebody, um, a student who's involved in a piece of work. Um, she's really engaged. She's really sort of part of the design process, and that seems to be quite good

It's a small project around mental health, Um, but it doesn't always work like that, and and and I think there are barriers. And I think there are also possible barriers in terms of, uh, in terms of funding and processes again. Sometimes it seems a bit of an add-on

Um, but it's not, you know, it should be an integral part of research rather than Oh, by the way, have you also included these people? Have you consulted these people? And I think until cultures change until, uh, funding changes, Um, and I think until as academics, we we kind of recognise our place in in all the process. It's gonna be a bit difficult to to change, but yeah, I'm hoping that as I go to meetings and keep saying, we need to get people involved at this stage, we need to invite people on to the meetings. Um, things will change

And I've just, um, at one at one piece of work I'm doing at at at the university. I have actually got students who who are invited along to a meeting now to get their voices heard. And I've had a separate meeting with those students beforehand to say, Look, this is what it's about

This is what I want you to hear. This is where I want you. This is where I want you to be involved

Um, so we'll see whether that whether that works or not. I hope so. It sounds really good

Um, what? What do you think the impact has been on people that you have involved in research that you've done? So I think you mentioned something earlier on the advanced care planning, Um, in relation to your PhD That I think. Yeah. I mean, I think things like that have been useful again because, you know, you get people who decide to say, Well, um, and people haven't sort of asked me this before, or people haven't haven't been interested before, So I say, I think it gives them value, and it makes them feel included

Uh, without wanting to be patronising, um, it actually gives them some worth to say. Oh, yeah. Actually, someone is listening to me Someone, you know, someone is there

And I think when I when I spoke to these, uh, to these students that I just mentioned a few minutes ago, that is he said, this is really good. This is this is really valuable. Um, where I've come where I see when I'm thinking about it, where I have come up against the barrier I I wrote at the beginning of the pandemic

I, um, wrote an article with a colleague and with some student nurses to, um to try to get their experience of being called up to the workforce at the beginning of the pandemic. And it's sort of trying to trying to juggle that role as a student, but then all of a sudden, as a as a nurse in the middle of a pandemic and how they felt about it. And, um, on the plus side, it was really good because I just asked students to write down their reflections

At about it was about six or eight students or something put it together into an article. Um, and they said they found it really useful, just just even writing just being asked and and writing down and reflecting on their experiences on their thoughts on their worries. And they found it a really kind of useful process, even though it was kind of, you know, sort of informal

Um, but what I found is nobody wants to publish a co-production article and the feedback I've had from journals is Yeah, this is good, but we want a piece of research and that, and that's what they just keep saying, you know, or there's been so much work around covid. You know, we really kind of, you know, we kind of need a piece of research. And actually, when I when I inquired with one journal, they actually got that

I said, You know, would you be interested in this article? And she got back to me and said, You know, I'm afraid not because we're only interested in primary research and it's like This is a really valuable piece of writing. I'm not saying it's brilliantly written. I'm not saying it's the most amazing piece of work, but I think it's really valuable because it's actually got students voices in it

It's got their thoughts and that they're actually saying, I feel anxious and this is this and and people have said but we don't want that. So if I had gone along as an academic and I'd interviewed them or I'd given them a questionnaire that would have got published, people said to me that would have got you know that would have been published. But with the students cow writing it, They don't want it

And I just think what? You know, you're an academic journal. What? What are you What are you doing? What? You know, you're just completely missing out on on this whole chunk, which I think is is is so much more valuable than this bit of research here. And, uh, but again, it's It's this kind of culture, which is like, Well, this is an academic journal

This is what we do. This is how we're approaching it. And you're just completely devaluing and ignoring all this, all this here, and I don't know whether they realise it or not

But when I've included people in in sort of kind of co-production or actually gone and talked to people, some of them have just been so grateful to be talked to Cos it's like, Oh, this is great, you know? You know, I think this is a really good idea to involve us, or it's a really good idea to do this. Um, but there's just this this kind of blockage somewhere in in some of the systems, and it's like it doesn't work like this or we don't do this or this is how it works. Or this is what we've done in the past

And it I don't know. It just needs to change. Yeah, I hear you

It it it's frustrating, um, to be in that position. Um, and do you think that is, like, historical in terms of how academia works? Um, do you think there's a resistance to wanting to really move into a different space and and actually, is it always appropriate? I don't know. Um, so I I think I suppose, Yeah, going back

Go back a long time. You know, researchers used used to work in their own offices and and that was it. And didn't you know, go out and disseminate information and publish or not published, But, you know, go and conduct a study or go and do something in a lab and and find out what the results are

And I think things have got better, But I think there's still, you know, whether it's and I And I don't think I don't think as academics, we probably sort of, or a lot of people would sit down and say, Oh, yeah, actually, we are. We are a bit snobbish and I don't think it's a a deliberate thing. But when I've been to meetings and said that they surprised the number of academics who said, Yeah, academia is quite snobby

Yeah, you have to write it in a certain way. You have to speak in a certain way. You have to do certain things

There are protocols to follow. Um, so I think there is something probably historical and almost like a bit traditional about it. Uh, and it and it is about box ticking

And if you don't tick those boxes in some ways, then you don't. Yeah, you don't get the funding or you don't You don't do this or you don't do that. You don't get through ethics, but it's something it does sort of feel a bit box a bit box ticky Um, sorry, I can't remember

I can't remember the second part of your question. It it was it was more of a ram. A rambling than a kind of like just to see what spark for you

Yeah, Yeah, but But I do find it frustrating. And sometimes I think you know, if I go to a meeting that it doesn't happen all the time, But I haven't been to a meeting and I said, You know, you know, let's include these people in this work here and I'm thinking if I said something wrong, not because people give me funny looks But it's like I'm the only person who said this, and it's like for I think for some people it's almost as if it people just don't think of it because it's not a kind of first thought that people say, Yeah, let's do this and let's include these people. It's like le let's do this research

But I'm thinking about yeah, what about these people coming in here? Do you find it? Do you find it's easier for you to to influence, given that you've kind of worked your way up through the academic, um, ranks as it were, Um, do people listen to you more? I don't know. Again being rather ST because I've worked in a I worked in academia before. I got my PhD and and I've said to people now who are studying for their PhD s, this is gonna sound awful, But people listen to me now

I've got my PhD now I've now I've got doctor in front of my name, and I don't know what it is, but people listen more. Um, I don't know. I don't know how much people listen

I think possibly it's that I just say it anyway, and I'm not bothered what people think. And I think if no one else is gonna say it, I'm gonna say it because, you know, I've I've interviewed people who are, um, you know, young people who are, um, with an advanced care plan. I've interviewed young people who are, um, really anxious and worried around, you know, death, anxiety and things like that

And I think I I want them to be involved. You know, I think it's important to be involved. I've talked to students who are a bit stressed and don't know what they're doing

Yeah, as other colleagues have as well. Yeah, I want them to be involved in the process. And I think I'm not bothered whether someone else agrees or not

And if I if I'm the only one who sits there and says I think they I think these people should be involved in this process, then I'll be the one to say it and if someone else wants to turn around to me and say no, no, they shouldn't and no one's ever said that yet. But if someone wants to turn around to me and say no, they shouldn't. Then I think, well, that it probably would say more about you than it does about me, but yeah, I I I don't know whether people listen to me more

I think maybe it's just that, um, I think in terms of academia, people might listen or some people might listen to me more because I'm a doctor. Um, whether people listen to me more generally, I don't know. But I think whether people want to listen or not, I still want to say it and and if I'm not, you know, and if I say it at one meeting and then I go and stay at another meeting the next meeting, which I have done a couple of times and and I've said as I said at the last meeting, I think it was really important to do this and then someone's picked up on it and go and goes, Oh yeah, yeah, that's a good idea

So I said at the second meeting. Then someone's picked up on it. I said, Oh, do you want to do that? Then, like, Yeah, I'll do it And then that's fine And and I think I, you know, that's OK and and I'll and I'll keep saying it and I'll and I'll keep doing it And hopefully, uh, you know, I I always say to my students, You know, do this, you can do it, keep doing it and you might change the world and I'm not expected to change the world

But actually, if I can change a bit of something, Um, even if it's just within one organisation or one meeting, if I can get people involved or put my opinion forward, even if I look a bit of an idiot by doing it, I don't mind because their their voice, I think I actually wanna say their voice is probably more valuable than our voices academics, because they're the ones who are going through it experiencing it. We kind of very much generalising we we research it, you know, they you know, and we won't be able to research without their voices. We know we can't research without listening and and understanding other people

That's what research is about. And it's about getting that information and then using that to change this bit of the world or to to advance things and develop things. You can't do that on your own as an academic or as a researcher

You've got to get other people involved not just as a tick box, not just as an add on, but as an integral part of the research process. Otherwise, it isn't valuable. And it, you know, you might as well just be sitting in an office and doing it yourself

Wow. Thank you. Is there anything else you want to add before I stop the recording? No, I don't think so

I mean, I suppose just that I I said no. And then I carried on talking Just that, um, I don't Yeah, I don't know. There are some

There are some really valuable co-production going on, um, in the places I work for and, uh, and elsewhere in the country and and across the world. But I think looking as an academic and and and also as a researcher from the inside out, the structures aren't always in place, and the procedures aren't always in place. And I think those at the top of organisations and funding bodies and everything else do their job

And and And I think part of it is about hierarchies. They do their job, they set the parameters or whatever else, and we have to meet them and we have to make them the best we can. And sometimes wrongly, that isn't including, uh, people with experience

Um, and I think, as I think, come back to one of your earlier points off the top of my head. I can't think of any topic where if people with lived experience aren't able to or don't feel comfortable to talk, I don't think any topic that they shouldn't be involved in, you know, even things like abuse, domestic violence, rape. If people are happy to share their experiences and be involved, I think it's really valuable for them to be involved, because that is how you that's how you actually understand the information

And that's how you change things. Uh, and it's frustrating sometimes that that Oh, this is gonna sound really Dobby as well that people don't think the same as me or but I don't mean it like that. It's really frustrating that people don't see the value in co-production

Um, and it's and it's almost like here's a piece of research and co-production not. Here's a piece of co-produced research because it's because it's almost like coproduction has to be set up because there isn't co-production rather than here's a piece of research and it's just given that it's co-produced, it's co-produced. And in some ways I think the Co-production Group is really valuable

But it shows that there's a problem, because if if if co-production was was just seen as a normal part of research, then we wouldn't need a co-production group. But the fact we actually got a co-production group shows that it's seen as an add on, and it's seen as something something needs to be done about it. So, yeah, well, I think from my point of view, I'll keep pushing where I can and keep talking about it where I can and try and change what I can

Thank you. Thanks, Ben.

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