Okay and are there any messages to researchers?

It’s not about just getting the right processes in place before your research starts, you know, get the funding sure, think about the venue sure, think about the skills that as a researcher you need to do the job sure, do all of that thinking it will still go a different way from time to time so it’s about flexibility and creativity and being an advocate for involvement, we’re still at the point in time where for all it has a very central place now in funding applications and we’re being asked to report on it and being asked to report on it better. We are still are at the sort of forefront of thinking about this. So it’s, it’s not easy and it’s not about doing all the right things up front and then knowing that it will work out. You need to, you need to keep working at it, but that’s what makes it so much fun.

I understand why this is a tricky issue yes, so I get paid to be at those meetings because I get a salary to be there. Our young people elected not to be paid. We gave them the choice and asked them what they thought. We pay, you know, we don’t expect them to be out of pocket at all for coming along to the meetings and participating, but in terms of financially in, working with the young people who’ve been involved in other aspects of service development within the hospital they felt that they wanted to do it for other reasons. So, but you know, I can think of young people that kind of, have really valued having things on their CV, have asked for references, have gone on to do placements elsewhere in the organisation, thinking about their future career. But ultimately what young people, our young people said to us, and echoed something that comes through in the literature, is that they want to do it because they feel they have a responsibility and a right and a duty and they just want to. And to feel like they were paid an hourly rate to do that would maybe demean the reasons why they got involved.

Now I think for me I’m just going to ask that question every time I set up a group and every time you know, at different points during a long scale piece of research, to see which each group want, but it’s a tricky issue

I suppose, the one thing I actually would say is in some way, you know, I guess could it be argued that in not paying the young people an hourly rate to actually turn up and perform the roles that they want to perform, does it mean they’re somehow de-professionalised against the adult researchers that are sat around the table getting a salary? Maybe so. I can see how that could be argued, but I think a professionalised role for young people is, in research, is more than that. It’s about having a voice, it’s about being heard, it’s about having some capital in the decision making process, it’s about making a difference and knowing how they’re making a difference. I don’t just turn up to work because I’m paid; I turn up because I enjoy my job and I hope it makes a difference. So I think young people can feel professionalised within their involvement roles even if they elect or it’s decided that they’re not going to be paid an hourly rate for what they do. But I think that they can be recompensed in different ways but I think you always just need to establish this at the outset with any particular group and make sure you’re asking questions and thinking these kind of things through.

Can it happen? Yes. Should we worry about it? No. I think [laughter]. Yes people do develop skills they develop in their work just as we do in our paid work. It means we have, you know, I have a different view 17 years down the line in my job than I did the day I started. But as long as you’re aware of that and that you kind of understand that about what that person’s bringing into the project. If you want something else then go and find that too. I think this idea of the pure lay voice everyone comes with background experience even if it’s the first time they’ve been involved in health research. Maybe they were a chairman of a company, maybe they were a domestic worker, maybe they were a housewife and they, you know. This idea that there’s somehow this pure layness that people come with, no. So we all come with our experience and as we get more involved in health research we develop our experience and that’s okay.

I think each research question demands a different view and the idea of being wholly representative by bringing individuals or even a group of individuals into a project I think is probably a little bit spurious. I don’t know. I’m a qualitative researcher so you’re asking completely the wrong person about representation I suppose. I think more in terms of experiences and narrative and diversity and distilling the themes from that. So know we didn’t make sure we had X number of men, X number of women, X number of, you know it was more about choice. And, you know, I guess if you think about the right to be involved and we said to, you know, we approached several different groups of young people and whoever wanted to be involved more than welcome. So yeah representation wasn’t an issue for us actually.

We, I guess that side we did want some level of experience of a long term health condition, either personally or through lived experience in another way either a family member or something like that. Did we rigorously kind of ask people about that? Not really we kind of just said look this, these are the kind of experiences we’re wondering if young people have in coming along to the group and they pretty much then self-selected from, from then. So no, I think again if you think about the theory behind why you’re involving people and the concept, you know, and if it is about different voices and the value of different types of knowledge, factual academic knowledge, you know, and lived narrative experience, then you can make sure you get a little bit of whatever you need. And in terms of factual knowledge, you know, when you bring a management group together you don’t bring together the perfect representative management group ever do you? You kind of cobble it together and hope for the best and kind of go with it and bring in different people as you need to. And that’s the scientists. So why would we then put different parameters on young people coming in. So I guess the answer is if it was about did we consider representative samples? No, we didn’t [laughter].

Do you think researchers could benefit from training in how involve?

Yes, yes.

Tell me a bit about that

But are we there yet, I think, you know, those of us that are doing it need to get together and think about the things a little more like conceptualisation like the sort of the architecture around good practice, like how we set out what we want to do and then therefore can measure it a bit better and how to report it. I think we, we need to get some of that agreed or shaped up certainly and then yeah we probably do need to start talking about it a bit more and getting it out there. And, you know, organisations like INVOLVE are brilliant at sort of distilling that kind of activity and disseminating it but we need to do a bit more of it. So yeah I don’t think we’re ready to start running whole sale training programmes to every junior research associate coming through every university. But I guess also what I’ve said about involvement being a dynamic process shaped by the questions you’re wanting to ask, shaped by the people that are coming in that, you know, there isn’t going to be a strict rulebook on, on how to do it, so we probably need case study, lots of case studies and examples and, you know, I think that’s where we’re at the moment.

It’s a long time ago when there wasn’t much written about it and we really had to find our way. So I’d say probably 2002/2003, started to do some research around young people with diabetes. So at first young adults with diabetes, 16-25, commenting on the services they’d received to develop our services within the healthcare trust where I work. And I felt strongly that, you know, that the whole research was qualitative so the subjects were young people, the data was going to be from young people, so I felt really strongly that actually we needed young people in the governance of the research as well. So started very early on and sort of very small steps at first and had two young people on our steering panel. And then working out pretty much for myself how to go about that. INVOLVE was then called I think Consumers in NHS Research or something like that. So there was some early guidance from them which was really helpful. Things like, you know, providing a glossary of research terms which I have to say was useful for the, you know the professionals around the table as well as the young people, you know, so that was a shared document as soon as I created that. And thinking about, you know, a job description for young people too, so that they could come to the table understanding their role.

But again equally it was a very useful document for the professionals to then understand what the young person’s role was, made the professionals have to think more carefully what their role on the steering group was to be able to explain it to young people. So it was, it was a steep learning curve and I’m sure we didn’t do it all right first time round, but that’s where, where I first started thinking about this and then I hope that my practices developed from there. So now in the research project that I’m working in now we have a group of, it’s about 20 young people signed up to the group about eight to ten attend regularly our monthly meetings and they’ve been involved in the planning defining the research questions, designing the research tools. They’re in the warp and weave of the management and governance of the research project. Again I’m sure we’re, you know, not getting it all right, it’s still a very, you know, there’s a lot, a lot to think about and as researchers we’ve still got to get some stuff ironed out and get it right. But I hope my, my vision and the scope of what I’m doing in terms of involving young people has grown over the years, so that’s where I’m at now.

I think it’s about people’s experience of; lived experience of the issues brings a very valuable different view to the academic or researched view of, if the area. So there’s something about enhancing the, the scope and the parameters of what you’re, what you’re studying. So improving the inherent quality so. But to do that your need high quality involvement, so just by having young people part of it your research isn’t going to be suddenly brilliant. So you need to think through the processes but I think at the heart for me that’s, that’s certainly part of it

And then think about why, why we do it so is it because it’s a right it’s a democratic right? Is it because the patient voice is, is different and provides an additional view? Is it, is it about accountability, you know, that by opening up the research process to other groups that we make sure that we are doing it right? So there are many different reasons and I think we need to have that debate a little more so that as individual researchers we can think about these kind of things a bit more. So conceptually I think there are quite a few things we need to get right still or more clear and this idea of involvement being a good thing’ so we have to do it or involvement being something that now to get funding we need to do so we have to do it. Yeah okay but that doesn’t, that’s not going to give us the foundation we need for doing it well and doing it in a considered way. So I think we need discussions around things like, like power and decision making that I’ve kind of talked about already, you know. So how do we ensure that people have a capital, you know, and an influence within the things they’re involved in. Just by inviting them in that’s not going to happen, so how do we envisage the decision making process, how do we envisage responsibility?

You have to think about it as part of the skill mix of, you know, what research question you’re asking what design, what’s going to be the time commitment, you know, what are the skills you need. So I think it would change project to project so. But for me right now, we thought it’s a large scale long-term, you know, five year programme of research so a lot of commitment. So we didn’t for one minute think we could recruit some young people with we wanted young people with some experience of the area we were researching, so long term health conditions. Either, you know, they have a long term health condition or they’re a family member of someone with a long term health condition. So some idea of the area to bring that sort of expertise into the project.

But we didn’t for one minute think that we’d get young people signed up and with us for the full five years of the project so I imagined a very dynamic changing group, was wondering how I was going to, you know, get sort of tasks done when it maybe would be a bit of a flux, a group in flux, maybe more of a consultation group, but kind of didn’t want it to be just consultation. But actually the young people that we recruited have stuck with us. We’re two years in now and it’s, you know, these are young people that have grown with us and the project, you know, as we’ve developed skills in the two years doing this job as have they. And they’ve stuck with us and continued to come. So actually it’s not been the way I imagined it and we have had to think you know, flexibly Okay now we’ve got a consolidated functioning group and that’s really nice. I think what I’m saying is you will approach the people that are right for your research project, but even if you do that imagining one thing, I think invariably it will change and you need to think flexibly about recruitment and skill mix and, you know, all the time now that we’ve got a consolidated group that I have to say is fantastic in terms of getting things, you know, a thread of work going and getting things completed building from one stage to the next, you know I’ve now got a really skilled up bunch of young people. They’re really committee to the project who can stand up and talk about it, you know in, in you know the public, you know in a public forum and it’s amazing.

But equally for me then the questions become do we need, for this next job, do we need some new members, do we need a different vision, do we need a different view or, or will it be okay? And I guess we’ve just, we’ve always kept recruitment open, but haven’t sort of necessarily needed to chase that as much as we thought we would at first. So we have had new members coming in and some people leaving to go off to university and things like that but yes. So I think in terms of approaching people to be involved in your research there are many factors that will influence who you actually end up working with.

What would my message be to young people that are thinking about getting involved?

I think I’ve been inspired as a researcher by the young people I’ve worked with over the last couple of years, their enthusiasm and the ideas that they brought to the research and they’ve certainly helped me to develop as a researcher, so I am very grateful for that. And so if other young people can go out there and do the same for some other stick in the mud researchers kind of maybe like I was, then that would be great. I’ve also seen that the young people I’ve worked with have felt inspired and confident and important. That was a word that was used just recently to one of our young people that attended the external advisory board to describe, you know, what the group had been up to over the past year. And she said, I feel really important! And I said, Well you are and your message is very important. So if you get involved then from working with the young people I’ve worked with it seems that there’s some stuff you can get out of it and you can make a difference. And I think that’s the important thing that you, you need to ask how your involvement is going to make a difference because ultimately that’s what you’re there for.

And my job as part of the management group I’m, I’m responsible for the involvement parts of the project and, and my job I think is to make sure that we are keeping to our values that we, you know, we wanted partnership working, we wanted young people to have some capital and some influence now that doesn’t mean that whatever they say goes, equally it doesn’t mean that whatever the managers say goes, it’s a communication, it’s a working out, you know who, who’s making the final decision on this one and how we’re going to get there what are the decision points to make along the way and who’s responsible for which parts of that. I mean I think that’s true partnership working. I think this idea of creating a protected space by somehow inviting lay people in to a room or into your project somehow creates this bubble of perfect sort of you know, a perfect space for people to be able to suddenly be skilled up and make all these decisions and has the power and, and you know, the confidence to, to be part of the research, you know, a piece of research. That’s, that’s not how it works it’s like any working relationship it’s negotiated as you go on the basis that hopefully a very solid vision of how you want that relationship to work. So yes embedded, part of the management structure working in partnership, having some real capital and influence and being supported again I think that’s another big part of my job supporting them to either develop the skills or think through things to be able to deliver effectively on an end product.

So even when they’re given the sort of the task and told to go away and do it, they don’t go off and work on their own with that. I’m always there and my research team within the project is always there to help them achieve what they want to achieve, but they’re telling us what they want to achieve and you know the end product tends to look, you know, very much how they want it to look. But we’ve supported them. So I think those are my key roles is making sure that involvement happens in the way that we think it should be happening and the way we envisaged it. And to support young people to, to play their role and play that role whatever it is effectively.