Eric: It was great to be able to have that experience of doing sort of what were often very quick projects and then coming onto an academic environment, where the speed of studies, typically the larger studies in particular, was that much slower, and that much more governance and procedures and bureaucracy, if you like, to go through to get things done. And that has impacts and implications for involving people as participants or indeed in the design and conduct of the research.

Ceri: I hope it helps us in the role that we do, that we both come at this from not the traditional university do your PhD, you know, never leave academia’ world, but we’ve come at it from the real world, as it were, and I hope that helps the way we do it. And I certainly think it informs our attitude.

Eric: Yeah, yes I do.

Ceri: And, and our enthusiasm.

Eric: Yes.

Ceri: I think we’re both aware and enthusiastic about this in a way other people may not necessarily be.

I do remember the perspective that I became aware of that people had of the university when I was in that action research role, that role before I came here, and how the people I was working with found the university another world, absolutely alien, and I had a foot in both camps and I was still able then to see just how set apart the university world was and how the language was different and the ways of working were different and the timescales and everything were different. And it did feel very, very apart from an everyday way of doing things. And it’s difficult to keep that when you are working in the university world, but I think it’s important to keep it and try and hold onto that.

Ceri: I think the really big challenge is we, we the research committee says they want public members to contribute their experience to bring a different perspective and they use the word experience. As, and they also would describe their experiences and experience and expertise, that’s another thing, we use the word expertise to describe their experience. And there’s, I think there’s a real challenge in translating that expertise into something which makes a real contribution to the research there’s a, there’s a translation problem so people will talk about their personal experiences and sometimes they’ll be able to make the step to talk about it in a wider context so to draw lessons from that and how that might apply in the research and to de-personalise it. But even if you can do that it’s another step I think to, to turning it into some, some currency, the currency that the research process needs. I don’t know I’ve heard researchers talk about the need for training and people do get trained and they don’t, I’m not sure what difference it makes. I’ve heard people talk about picking people for different tasks but then you’ve got the question of what, how do you select, how do you select people out and are only certain people able to do certain things. And then is it the individual or is it the actual service user, what sort of identity is this person that you want you’re guessing. Is the service user, is it a service user role in which case what are the skills that you need for it and is there a formal recruitment process or is it just that hands on, that first person that authentic experience with all the weaknesses that an ordinary person brings to the process but adds the authenticity is it that that you want. I find, I struggle with all that.

Eric: Yeah a massive challenge of, you know, who are the right people and for what tasks and to what extent should we say, for instance should we say two people be involved through the life course of the project which could be we’re talking academic project.

Ceri: Years.

Eric: Four years for instance the project I’m working on to date so we have had a couple of changes over time. Whereas the whole of the rest of the study team is the same but that’s just an observation. Yes in deeds of, in terms of what characteristics we look for it and how you recruit, you know, should there be some sort of desirable and essential criteria for people.

Ceri: Because everybody else around the table’s been recruited.

Eric: That’s right.

Ceri: The recruiting process that goes on and the training process. and if we were to apply similar approaches to recruiting our public members then do we risk taking away their, the thing which it is that we want them to bring, that authenticity, that other world experience, the very fact that they’re not schooled in all things that we’re schooled in and which means that we forget our personal experiences when we walk through the door as researchers.

Eric: There’s an important aspect that just by being there – there is a patient in the room, you know. They may not say something that records that focus, but that doesn’t mean that others aren’t able to reflect on that in that meeting – There is this sort of, you know – hard to say how that translates into decision making but’s it’s a back of the mind, it’s a subliminal.

Ceri: Well it’s not it’s almost in the front of your mind, all the time that we’re talking about the topic of the study that we’re involved in at the moment, we have somebody who has quite a personal experience and would be affected by this very thing that we’re evaluating sitting right opposite us.

Eric: Yes.

Ceri: So it does keep that right at the front and the back of the mind. And I’ve heard a lot of people say that that just keeps them reminded all the time why we’re doing this research. And then the other thing having someone there is that you can suddenly point and turn to someone – I’ve heard you do exactly this – and say What do you think about that? Should we do this or should we do that?

Eric: Yeah.

Ceri: And that’s an opportunity we wouldn’t have if we hadn’t got one or two people with us in the meeting.

Eric: And also if we are, say, looking for input into particular aspects of the study, now those people who have had that context that background and experience of coming to the meetings and understanding how the project works – when it’s going to happen, the timetable or the methods – now they’ve got that extra information from the from the research side that can, you know, I think that is helpful when it comes to looking over some of the study documents that we might want them to review or input into. There’s also great potential, you know, challenge, which is why we try and share it with the wider [PPI] group as well particularly. You know, for instance information sheets. I know we’ve done that in the past, I had initial input from the two service users on the study but also then shared that with a wider group who can, you know, potentially benefit from not understanding much about the study which is the same position that the average person who receives a questionnaire for instance might be in.

Ceri: I suppose the way we, the support that we have here is crucial to what makes it, makes it happen I was going to say successful but as a successful as it is because I am actually funded to, to have this role and without me it would really struggle because it, researchers in the team some of them will be very interested in doing this but will find it difficult because they won’t have the necessary contacts. And they not just contacts but be familiar with the process for me to go through and then there are some researchers who just don’t see it as a priority anyway.

So for more than one reason it may not happen if there wasn’t me who stands up and says right have you remembered to invite some service users to this meeting and I’ll help you we’ll find the right people we’ll contact them in the right way and then we’ll make sure we’ve got expenses honorariums for them and if necessary arrange accommodation and those sorts of practical things as being crucial. I think it’s also been really important that having, having this group which we have referred to through this because it’s enabled us to build this relationship with people and it makes it much easier for me to be able to recruit people very quickly.

And there are times when someone will say we’ve got to get a bid in ten days’ time and can we have a perspective on this and I can get people together pretty quickly because we have that relationship and because I’ve got the contacts with them because they and me have some level of trust, they have a trust of the department generally now because they’ve good experiences. So, so the support and the culture because all this is supported by the person who heads the team that we’re in that makes a big, big difference. It would be difficult, it would be very difficult if we didn’t have all that

We’ve been talking about researchers all the time there’s another section of the team here at [university name] that makes everything happen which is the administrative team.

Eric: Yes.

Ceri: We would really struggle without them they’re fabulous. And they’re, that attitude their willingness to go the extra mile their caringness that also is invaluable it really makes, makes it work.

Eric: Because the service users that are most involved will speak to them as much as they speak to us.

Ceri: Yes, yes.

Eric: In terms of just checking on arrangements or checking on travel arrangements as we say, payments.

Ceri: I find it interesting that so much of the, the researchers who are involved are female. You go to meetings about public involvement, academic meetings and you get one man and 20 women and is that because the sorts of skills, as we said earlier are they’re softer skills about communication and listening and empathy? Or is it because it’s not actually seen as a core thing and it ends up getting side lined? If there’s more money and it’s seen as having more profile will that bring more men in? The very fact the person who leads our team and champions it here is a woman is that significant? I don’t know. And to be fair actually there is another person who champions it here and he’s a man so now I’m cautious about drawing too many conclusions but. It is, I do wonder if it’s seen as being one of the softer sides of things and therefore has a lower status unfairly.

And actually it’s much more difficult for people to get involved in quantitative research and, and more bench research yes, it’s really difficult because for lots and lots of reasons, I mean to have the level of technical knowledge that you’ll need to have to be able to make an informed contribution, it’s very, very difficult. Whereas qualitative work in Health Services research is much more accessible so for them it’s easy to get involved with. Maybe the sorts of people who come into qualitative research have those sorts of empathetic outlooks anyway. But there certainly appears to be some connection or association I don’t know what it is but yeah.