I think they can be really useful when it’s a very specific topic or disease. So like say, right, I was researching [people’s experiences], but I’ve never had those experiences. So you know it’s really useful to have someone to advise me on that and someone especially who was in that position, as this woman was, but has now come through the recovery process and can advise us on what it’s like to be doing that. Equally, I’ve never had [name of condition] and I don’t know what it’s like. So those patient reps were really, really useful in that project. But at the minute the project I’m working on, because it’s such a generic area of medicine – they could be you, could be me, and the discussion that we have in a research team quite often is that I’ve got experience of health care, you’ve got experience of health care why, these people who were just randomly advertised for and interviewed and brought in, why is their random health experience any more important than mine or yours or my colleagues’?

You know, we’re all users of the NHS so it’s a tricky one really. I think when it’s disease or topic specific that’s really useful. When I don’t have specific experience of that, but when it’s just generic experience of the NHS, well I’ve got that, everyone’s got that, so it doesn’t really make sense to me in some respects.

What do you see for the future of PPI?

I’m not sure where it’s going to go to be honest because I think it’s going more towards, like I said, I think it’s tipping in a way that I don’t think people anticipated it would have tipped. And it’s – I don’t know. Why hire research teams? Go out and grab a load of patients out of a hospital ward, get them to come and do a research. You know I don’t, in the future, I don’t know how it’s going to go.

Do you think it might burn itself out?

Yeah potentially. Because like things grow in fashion, don’t they? Like impact is a good thing now, isn’t it? Everything’s about impact. Impact within five years of research being published, like demonstrable impact. And like, you know, even ten years ago that wasn’t a big thing. So like fashions wax and wane, so I think it might recede maybe in the future. I don’t know. I’m not sure but I think it is just, I think it’s become like a lorry that they can’t stop and it’s just gaining ever more speed, and no-one seems to be able to put the brakes on it.

Then we had a lay rep and this woman was just supposed to be just a member of the public, to advise on things. And the problem I had with that is that she was and she was quite nice she was quite high up in whatever she did, professional woman, but she did not understand qualitative research at all. So half way through the study I decided that I was going to change my sample So I took it to my PI and my PI was like, Yeah, great and she said, But can you just mention it at the steering meeting? Because I think it’s a change in direction and we need to inform everyone.

And the lay rep could not get her head round the fact that you could do this She just kept coming back to it. “How on earth half way through a study can you change the people that you are talking to? How on earth is this possible?” She just could not get, and it went on for like twenty minutes to half an hour me defending qualitative research essentially. “How on earth can this be possible?” And it just, that for me was one big example of how these people who think we always think they benefit studies but they can equally derail and detract from studies, because then like my PI at the time was a consultant in a hospice, she wasn’t a researcher. She’s been involved in a lot of research but she’s not a researcher, she’s definitely not a qualitative researcher, and she just trusted me. And so that derailed it. Because this woman kept on and on and on, my PI after the event was like, “Can you just talk me through why it’s alright to do this?” whereas before she’d just implicitly trusted me. And so that is an example for me of someone critically misunderstanding the research process because they’re not a researcher and they don’t have any experience of it. They’re being asked to advise on something that they know nothing about and coming in with their opinion is completely wrong. And then it’s actually making my PI question me. I was just furious afterwards, I was furious.

Do you think that there should be training, proper training for patient and public involvement reps?

Depends what they’re doing. So if they are going to go out and do the research yes; if they are going to be used in an advisory capacity, maybe not, because I don’t know what you’d train them on. Like, you know, reviewing documents and stating your opinion in a meeting, you can’t really train someone on that, it’s quite difficult to orchestrate, so it depends on the task I suppose. It really depends on what you want them to do and what their function is as a PPI person.

It’s context specific so it’s each research team depending on what you’re doing with them and what you want them to do. But like the collaborators’ patient rep who reckons that he’s gone out and done some research, it’s really embarrassing because he thinks he’s done some research but he’s not – And then it turned out what had been done is, he’d been given an interview transcript and asked to make comments on it which is all nice and fair enough and you know we might do that with our if we were doing an in-depth interview study and it wasn’t in a trial we might do that, you know, why not? But it’s just they don’t understand what they’re doing and that’s a bit strange really, I think. And when we got to the bottom of it we were like, “Well how did you analyse it? What did you use to analyse it?” And he was like, “Oh well I just made some comments in the margins and…” We didn’t say anything because we didn’t want to embarrass him in front of everyone, but that’s not analysing an interview transcript, that’s just making some comments. So it really depends on what they’re doing with them as to the level of training and guidance they need I think.

I think the thing is now everyone knows that to get a grant you’ve got to involve patients and I think that’s a good thing essentially, because we don’t want it to be like, you know, the old dark days where you’re doing a study, but you never even talk or see a patient. I mean it can’t be like that anymore. We’ve got to move forward, but I feel like the tables are tipping now in terms of like patients as co-apps on bids and patients running the shop. And it’s like these people are not qualified or trained to do it. I just, it’s such a bizarre thing. You know GP surgeries are now asking for patient groups? And it’s like, I don’t know, imagine if you got behind the GP’s desk and said, “Well I’m a patient, I can be a GP now.” It’s like, it’s tipping and it’s just really bizarre to me. And I think as well it’s, in a negative sense, some people because they know to get a grant they’ve got to involve patients, they kind of go and involve patients in a really tick box token way and that’s worse than not involving patients, really, I think.

I think twenty-five pounds an hour to come to a meeting and sit there is not value for money and it’s not value for the tax payers. I don’t really know what I would pay people, but I think that’s like you know they say there’s a difference, an incentive is supposed to be a thank you not an inducement and I think like twenty-five pounds an hour for some of our patient group might be considered an inducement, because I think that’s quite a lot of money really. I mean I don’t earn twenty five pounds an hour, you know; and I know like they are working and they’ve got to take time out of the day, but I think it’s quite a lot of money. And as well the Chairs of the patient group, they get paid more because they get prep time, but I’m not quite sure what they’re prepping. They get twenty five pound an hour to prep things outside of the meeting.

And one of the things that I’ve heard before about PPI is that PPI helps to use public funding in a better way. What do you think about that?

I think if you’re getting someone guiding your research, someone steering it in the right direction, perhaps the direction that you’ve not thought of – because for instance, as I keep saying, you don’t have [specific health experiences] and, you know, to guide you in that way and to correct you when you’re on the wrong path, I think that is a really good use of money. But I mean in my past projects they weren’t paid, I don’t think they were ever paid to come to anything. I’m trying to remember. They were never paid.

I think it’s got to be pitched right. I think twenty-five pounds an hour’s quite a lot. And I think, I’m not saying you know we’ve got to make them work for it, we’ve got to be whipping them, but they do need to be contributing more than just turning up and sitting there with their arms crossed and just not saying anything, because when they’re not saying anything they’re not adding anything.

It’s a nightmare. It’s a complete nightmare because I’ve got to be really careful as to what I say and do. And as well like PPI’s really trendy at the minute and I’m not saying it hasn’t got a place, but it’s not considered very PC if you fundamental you know like, it’s like, “Oh brave new world.” Patients should be like co-applicants on bids actually I do agree with that in some respects, but patients should be co-applicants on bids; patients should be researchers why don’t we just [effing] bring a load of patients to come and sit round my desk? Why did I bother doing a PhD? Do you know what I mean? So it’s like really difficult because these people are quite capable people, but they’ve not had the training, they’ve not worked as a researcher. You know everyone knows that to be a researcher you’ve got to cut your teeth, you’ve got to do at least three degrees: you’ve got to do an under-graduate, masters and PhD. You’ve got to, you know, you cut your teeth in your first research assistantship where you’re closely monitored and evaluated. And then at the opposite end of the spectrum they just want to bring in these people who’ve got nothing to do with anything and let them loose on our study ill patients at the bedside. It’s really difficult for me so I’ve got to kind of be really careful how I manage it.

PPI is held up as this thing, as a shining beacon we must aspire to. It is essentially seen as a hundred percent positive; there is nothing bad about it. You know, that’s what it’s seen as. And it’s like why are we not critiquing the bad things about it? That’s, and I think your research might hopefully draw out some of these things that shows that it’s not always this amazing thing and why are we not critiquing it more, essentially.

I don’t know if it’s about a set of skills because, as I say, in my ideal scenario it’s just people with the disease or the condition so that could be anyone. You know, like I remember when I was doing [a previous study with patient reps who had experience of the condition] study, I went and interviewed a bloke who’d – he was forty-odd, he lived with his mother in this council house on this horrible estate, and like he’d never worked, but he was so insightful and he had so many interesting and articulate things to say. And he could equally be a patient rep. And I think it just depends on the person’s personality and characteristics whether they want to come and contribute or whether they want – you know, it’s not really about set skills, I don’t think.