I think I still see some where they think it is still about checking the patient information and not thinking about acceptability of outcomes. And theres that wonderful example that I’m sure you must have read about, but where some researchers I think it’s something to do with rheumatism and it was a clinical treatment. And they were looking at the outcomes that they should be measuring and they were looking at it very much in terms of functionality. You know, could you use your hands better?’, that sort of thing afterwards. And they took it to a group of patients with that condition, and the patients said, “Theres one question you’re not asking.” And they said, “What’s that?” And they said, “Does it hurt less?” because the pain was the very worst thing for the patients. But, for the researchers, they just wanted to make them better in the sense of functionality, and hadn’t thought about the pain. So I think once you realise about the importance of your research outcomes and making sure that what you’re measuring and what you’re wanting to find out is actually relevant to the patient group. And you have to be doing that very early, don’t you, in the research process? You can’t have that as a, a bolt on extra at the very last minute because it’s always going to be fundamental to your whole design strategy, isn’t it, yeah?

Well, all the things I’ve been involved in they’ve all been meeting your expenses. And I think that’s always been my, my bottom line. That seems absolutely reasonable. Research ethics committees have never paid people for attendance, and I went into it knowing that, and so that was never an issue, and travel and everything was always paid. For the Research for Patient Benefit, they do actually pay a fee for the reviewing. My husband says it works out at less than the minimum wage per hour, but again it’s more about it being a nod in the direction and that’s not been a problem. And then, obviously, the other thing you give is time, but that it is absolutely more than balanced out by the fact that I’ve always really enjoyed doing it, that sometimes it’s actually been exciting in the sense that, with drugs trials you’ve sometimes been at the beginning of something and you’ve thought, ‘Oh something might come of this. And I mean, very often it doesn’t of course, but just the thought of, ‘Wow this is the way they’re working, it’s so exciting, I’m really glad I know about this. So, and I suppose the sort of intellectual challenge of getting your head round various areas of knowledge and that’s particularly true of clinical trials, but it can be true of other sorts of research as well. And I really do love a challenge and I love feeling I haven’t finished learning and theres more to know about. And that would more than outweigh any time that I spent or the time spent is part of the excitement really. And the fact that, you know, that the world is moving on and that there are, you see pieces of research and think, ‘Oh I’m so glad somebody’s realised that really matters.

And has your experience of PPI changed how you feel about yourself?

I think perhaps initially it did because as it developed into something very positive I think I increased my confidence. And I suppose when you’re sitting on committees with people who are leaders in their field. In fact on the ethics committee I was on, the first multi-centre research ethics committee, the statistician there, I mean I had his book at home on my bookshelf. Wow I’m sitting next to a man whose book I use, you know [laughs]. And other, you know, names that I knew. And then finding that I could work with them, so that was very good for, and them listening and taking account. So, I suppose it built up my confidence. And I would say that applying for things like the General Medical Council work, I felt confident to do that because I was used to working with clinicians and well-qualified people, and used to accepting that if I’d done my homework and expressed myself that I would be listened to, and that I should be listened to. So I suppose it’s, I haven’t thought about it like that before, but yes, yeah. Because I haven’t had any negative experiences, you see, so it’s all been positive, so I suppose inevitably, unless I was completely arrogant it would have, it would have fed in to me feeling better about myself wouldn’t it? Yes.

What are the kinds of things that you think demonstrate good use of PPI in planning a research study?

Well very early on I think that’s, that’s the absolute first thing. So, even in terms of, you know, before you really narrow down your aims and objectives you may have a broad, you know, an idea of the broad area that you’re going to look at. So, very early on, and, I suppose, being able to use a range of people as a sounding board. I think sometimes theres a sort of default position to go to the usual suspects. So, obviously I see a lot of diabetes research because of the work I do for Research for Patient Benefit. And it’s very refreshing when they don’t just go to Diabetes UK. Because one of the things about the whole plethora of groups out there is that they do have their own agendas, and they do have their own perspectives embedded in them. And also the people who are involved are a certain sort of person who is interested in their diabetes and wants to control it. And so often the problem is, it’s the people who aren’t interested and don’t want to control it, or haven’t engaged with it that’s a fairer thing to say. And you need to find out a little bit more about why they don’t. And it’s hard to find out why you’re not interested or why you’re not engaging from people who are interested and are engaging.

Yeah and I have to say that that is something that I think is the cause for concern. I talked earlier didn’t I, about the professionalisation of lay members on research ethics committees and getting people who were perhaps very far removed from direct experience of patient care. But, I think, that someone like me, after all these years theres got to be question marks about when I stop being really lay and I become professionalised, if I’m not already myself. And so the things that keep me going, I am aware that I need to be careful, that I don’t lose or haven’t lost what it is I thought I was bringing in the first place. I mean that’s why when I had to leave the ethics committee after eight or ten years I thought that was absolutely right. I think you should refresh membership of all committees like that and you need new people coming along, both clinicians and lay. But, I suppose because through various health problems in our family, we do have a lot of contact with the health service, both primary and secondary and sometimes tertiary care. I think I do still feel that I do bring that awareness of what it’s like on the ground, and I do talk to a lot of people just even people in the street, friends, neighbours about their experiences and I still feel that they help to inform how I see things. But, you know, I mean I am mindful of that loss of freshness and I need to think hard about if what I’m contributing is different now and that’s quite a sad thought really [laughs], you know, giving it up.

Why’s that?

Well because I still enjoy doing it, and I suppose I still feel, well I suppose I must still feel I’m contributing something, but then I am aware that I’m not the best judge of that.

Well, for example, I’ve thought for a long time, that we could do a lot more in general practice waiting rooms in engaging people, that people are often sitting around in there waiting. Theres a few posters, but I think that you could do, if you’re wanting to do some research or you’re wanting to actually talk to people about contributing to a research proposal, that you could have some days, you know, get permission to go into GP waiting rooms, have a little desk with some pamphlets, and just have people who start talking to patients.

People who otherwise would not be in groups, would not respond to an invite on the internet, they may not even be on the internet. So, I suppose, going more to where the people are and being braver about that. Going into schools if you’re wanting to engage with young people, the school gate for perhaps young mothers. But, I think you need to be, I would like to see some, a little bit more inventiveness about reaching out to people who are just in the general community rather than a specific condition related community. You’d have to have the right people to do it, so that you, and maybe that would mean engaging people like myself who are known in the community and would know some of the patients and could say, “Oh I’m at this surgery”, so you weren’t someone coming in from the outside. But I suppose things like that, going to where the people are rather than trying to get the people to come to you. But, and it does worry me about, that whole perspective, which is lost because they’re not, and I don’t mean that critically, but they’re not engaging with the systems weve got in place.

As I said at the time, I was teaching. And what happened in fact was I was supervising a dissertation of a student and she was a nurse, and she was doing a degree in practice nursing, she was topping up her qualifications and I was supervising her. And she wanted to do some qualitative research on why women didn’t go for cervical smears.

And I thought it was a fascinating piece of research, and you had to do it qualitatively, you couldn’t possibly do it any other way. So she prepared her research application, goes off to the ethics committee and comes back in floods in tears because the ethics committee was very dominated by sort of clinicians and they didn’t actually think that qualitative research was worth anything. You know if it wasn’t quantitative, if it wasn’t an RCT [randomised controlled trial], forget it. And I was so cross about this and I thought, ‘Who are these ethics committee? Who do they think they are?’ And at the time I was a member of my local community health council and I went to a meeting the next week and the ethics committee were asking for lay members. So I thought, ‘Right, I’m going to get in there and teach them about qualitative research and why it matters. And that’s how it started, yes.

Brilliant. And so what did that involve you doing at the time?

Well, there was monthly meetings and before the meeting, you would get all the research applications that were going to be looked at that meeting. You would read them through, you would make comments on them and then go to the meeting meeting would be two or three hours, and it was basically going through the process to see whether or not the research application met the ethical standards.

And what was the dynamic like with the other researchers, the other clinicians, the other members of that panel?

Yeah. Yeah, that was interesting, because you think you had to, you had to establish your credentials. I think when I started, and we are going back to sort of about the mid-nineties, I think it was much more you were the token lay person. There was perhaps two or three lay people, but you were there because you had to be, and I suppose once you’d established yourself, I think it was OK, but at first they just thought you were going to talk about the patient information sheets and that was really your job, to see if that was clear enough. But over time they realised that you had other things to add about the quality of the design, about whether the outcomes were actually relevant and that if you were looking at it from a patient perspective, you could see outcomes in a very different way from a clinician. So, I think you had to establish yourself, but having done that then the dynamic was fine, then you became a member of the committee and in fact I became Chair of that committee.