So but in terms of benefits I think that it; if a researcher goes that way to understand the perspective of the people that are ultimately going to benefit or be affected hopefully by the research, it seriously changes how you think about data and how you, you know consider. I mean I’ve got an MRes student at the moment and she set out to do this work highly informed by psychological educational theories and then she did a pilot interview and she came back and she was just overwhelmed by this person’s, how that person was fighting against the sort of social system, it just wasn’t there for her like, you know it was alienating her and so she then kind of had to rethink her entire. And so it’s related to that obviously speaking to the people that will benefit or not from what you’re doing. Yeah I think also though there’s this balance because if you’re spending a lot of time trying to explain what you’re trying to do and blah blah blah it does take your time off doing the research. So it’s not entirely positive and I think that if people who are involved don’t understand research then they can challenge stuff that, you know, oh for goodness sake, if people had been discussing this for a million years and this is the way it’s done now and you know. So it’s a balance, it really is.

So I didn’t have any sort of teaching experience or anything like that. So they were probably a bit sort of, ah I don’t know, they changed in character. So the first few I tried to be very, very informal and do it like a focus group and then I felt that that wasn’t really working and it needed a bit more structure, a bit more clarity about what it was that we were trying to do. And so then I remember the first time I was more kind of directive I did something that I called like a facilitated debate. So I said, “OK at last meeting there was quite a lot of disagreement about what topic we’re going to choose and I thought today, how about we split into two groups and each group try to think about arguments for a topic, the two most popular topics?” And then they did that and they needed a bit of help with that too in terms of what did I mean about an argument and all this kind of stuff. But then they kind of played it out and they really; afterwards I got quite good feedback on that, that was quite fun. And I think it’s how all of us, you know break down the topics, so why is education important or why is drugs; why is it important not to take drugs you know. And then after that I tried to be more and more directive, not in terms of what we were going to choose but kind of how the discussions were organised and; so more and more break out groups where they kind of talked between each other and then came back to the main group. But it depended on the size, so sometimes we’d just sit around if there was only two there; so three with me, we’d just sit around and talk it through and if it was more, because I tried to be as flexible as possible, and yeah, yeah.

The other thing that I don’t like is this idea that researchers are bad and people who are involved are good because there are definitely lots of nasty researchers and lots of nasty people either side so it just seems like a very strange dichotomy. And I’ve always found that, actually you know, I’m so nervous about talking to the gatekeeper and I’m so nervous about the young people not liking me or not liking what we’re trying to do that there’s certainly, I don’t feel like this nasty researcher that’s sort of making all the decisions and sort of capturing them into this prison of positivist research or whatever. So yeah I found that like some of the involvement conferences can be a bit sort of researcher bashing and that’s certainly not helpful if you want to. It’s like we just did our way and I’m thinking, ‘Well if you want to be taken seriously like you have to understand that, you know it’s a bit like the alternative therapist, you know. Well if your stuff isn’t based on the same kind of framework then you are going to be on the side of it. That’s fine, you can say, “I don’t mind,” that’s absolutely but don’t bash the triallists then do you know what I mean? Like they operate in a different framework from you so it’s a bit of the same anyway yeah.

I mean you haven’t really touched on the kind of impact on scientific quality although you spoke in more general terms about, you know negative consequences or that something. And I think that’s for me, that’s where the biggest problem is for the positivist like methods if you’re, you know, that they have very strict rules etc. etc. and so involving people it really means to be very, very upfront, which is why I think the funders should be doing this mainly primarily and in a proper way. For example funding calls you know are they informed by. Yeah there is a risk that, you know a trial or a systematic review will be contaminated by etc. etc. But, so it is important to do it really, really, really upfront that’s what I’m saying yeah

There is a risk of the quality of the research absolutely both, yeah a threat to internal validity etc. etc. But if it comes before that in a way which is what my project did although they carried through but I kept an eye on there and there were times when they said things and I said, “No look we can’t do that, that would not be good for the systematic review,” and they agreed with it, I had no problem with it. They saw me as the expert on systematic reviewing and they were the experts on sorry I ramble anyway.

And looked after children and care leavers can have sort of can have, have lived really difficult lives and have had, you know difficult experiences. And was hearing any of that, or did you hear any of that, but was any of that kind of emotionally distressing for you?

I was prepared for that. I mean that’s why I wanted to involve this group but I don’t feel that those experiences defined those people. Of course it is sad to hear sad stories but I resist; I resent kind of putting them in a very sort of victim position. I mean these were people who were doing a systematic review and doing other stuff too. There was, you know, they were participating in life and I think it’s very easy that I would; I mean I’m getting quite emotional now talking about that so I suppose there was some kind of emotional consequence about it but, yeah, yeah I think it’s children and young people; young people often, you know and their trouble and all this kind of thing and children are hard work and – And it’s going beyond those kinds of stereotypes and trying to go beyond the, yeah the power relationships there and seeing people for what they are, people. So of course it’s distressing to hear about them having had difficult times but we didn’t focus on that; we didn’t focus on

Yeah I think that’s mainly it, you know I get a little bit; I think it’s a fair enough question but, I am very worried about coming across as someone that, you know, “Oh I was really nice to them,” you know [laughs] or, “It was so difficult to listen to the stories.” No, no it wasn’t like that at all. So that’s what I’m resenting; I think that’s why I’m getting passionate too

But for me it was more, you know what’s your experience of the system. And I think what I found most upsetting were those stories.

Because that’s what the research was related to. So when you looked after having a system kind of provide better for you or, yeh. But again I think, I think I was just very prepared; I just had no illusions, no illusions whatsoever. Yeah if you do this kind of work you sort of have to kind of be a bit matter of fact about it I think yeh. But there was, you know social workers have these kind of debrief sessions and stuff but I think I had them with the young people so our debriefing times if there were big conflicts or something and we sort of worked through them together rather than me kind of, obviously I’d come home and sort of tell my husband, “Oh my god,” but I wouldn’t, you know it’s all anonymised and stuff like that but, you know you still have some emotional things, but I think they were more related to group dynamics and I was trying to move forward and at times really struggling with that.

I think originally it was, and it still actually is, about who owns knowledge, who’s in charge of the knowledge production and therefore biasing it in a certain direction. That, to me is like the core of it so, up until now it’s been politicians and academics and I think that needs to be challenged. And so it’s about the questions that you ask; topics that you choose; problems that you want to solve. In fact I just heard this morning about the Ebola, one of the scientists working on the treatment for Ebola, she was working for a charity in the US and she, you know the drug companies wouldn’t fund that because there’s no commercial market for it but they did receive funding from the military and the state because I suppose in terms of aid and in terms of national security in certain countries, in certain regions it’s important as we are seeing right now. And I think yeah that’s it. Whereas, you know in hard sciences you can get those back kind of funding. I mean we’re talking, in her case, millions and millions of dollars. But in terms of social science and public health and education it’s very hard to get funding that doesn’t subscribe to the kind of perceived order of truth. If you look at children, young people for example, their value is always as future citizens, productive citizens etc. etc. So research looking at what it’s like to be a child here and now isn’t prioritising that framework. So yeah that’s what I where I was coming from.

I think we have to acknowledge that we compete for people and if you’re a young person you can be involved in like football or, you know you can have a job or you can be involved in a research project you know. I just, all this talk about community involvement and, I just think it’s so unrealistic because of the wider frameworks that I just spoke about. So yes for someone who wants to become a doctor it’s very good for them because it looks nice on their application to Oxbridge but, you know and for someone who’s unemployed it might be something to do and a little source of extra income, although you know it’s a bit tricky but yeah a voucher it’s nice. But, you know most people’s desires aren’t in research involvement unless of course, you know it’s seen as a sort of emancipatory thing kind of thing, this is my chance or a rebellion against something and I can see where they’re coming from but, I just think there’s something about being realistic because every time there’s talk about involving people it’s like, “Oh where are we going to find them?” and a lot of anxiety around it because you don’t know.

So this kind of cold calling I did think people do it but it’s a bit, you know. So it does seem a little bit unrealistic I think and it’s the same people coming again and again. I don’t have a problem with it; I’m just thinking about those people like, or about people say, “Oh opportunity for,” well maybe they’re just coming because they feel bad about saying no. I know that my young people definitely said at times that they just came because they felt sorry for me because by then, you know we know each other and they’re thinking, ‘Oh poor [name], nobody’s come to her meetings; well at least we’ll come,’ you know [laughs]. So yeah I think there’s a fair amount of unrealistic kind of talk around it.