I don’t understand this business about patients. I’m not sure what a patient is. I mean were all a heartbeat and a footstep away from becoming a patient. I recently had an arthroscopy of my knee. That was, that was six, seven weeks ago. Am I still a patient? I know someone who’s perfectly healthy, but they do have medication for blood pressure are they a patient? I mean I’m not quite sure what a patient is actually. I mean [male researcher’s name], top of his profession, a professor there, hes just as much a patient I imagine as I am. I don’t really understand this patient participant. You could be a patient participant, I don’t know your medical history, but I’m sure that you could, you could class at some degree as a patient. I’m not sure where this idea of patient comes from. I prefer lay, I think the lay researcher is, rather than a patient participant.

It’s a tricky one because a lot of researchers feel threatened by it and it’s quite obvious at the [place name] end. They feel that somehow the lay researcher will somehow impinge on their professionalism. Well I don’t think that’s true, I mean you have teaching assistants in school, you have nursing assistants in the hospital, but they don’t impinge in say a qualified nurses job or a surgeon’s job.

I think a lot of it is, it’s a culture change within the academic community and some people have made this culture change and some people haven’t. But I do believe that with the, especially with the Francis report*, I think that’s been a whole nest of hornets kicked over and we have a new paradigm now, which is patients will be involved more in monitoring what a hospital does and by implication, monitoring what research does by working as part of a research team. Not as a patient participant who is fed bits of scraps and is there because they are the token participant. And I believe actually to get a research proposal passed these days you have to have patient participants. That’s why I say it’s not just, oh you have a token participant, you sit there and you say nothing and you can tick the box and everything’s fine. You need to be genuine researcher but you have to choose your patient participants to take part in research very, very carefully because there are people out there who will, quite frankly, disrupt any research team. They have their own agendas and you will destroy in your research team, you really do have to be careful who you recruit to be a patient participant. They need that level of commitment and professionalism.

* The Francis Inquiry into poor patient care at Mid Staffordshire NHS Hospital Trust, which published its final report in 2013. This led to a number of government policies around listening to patients and improving care.

And quite often informally not in the meeting strangely enough, but outside the meeting it, I’m buttonholed by patient researchers and they say, “Well actually we wish we were doing what you were doing.” But having said that I once put forward what we were doing at [city name] and afterwards one of the patient participants got me in the corridor and said, “The trouble with you, Dave, is you’re becoming a professional patient”. And I sort of said, “What do you mean by that?” “You’re a professional patient”.

So that threw me back because I wasn’t quite sure what a professional patient was and am I becoming one? I don’t know. It made me think very hard about what my role was and what I was supposed to be doing.

And what did you come up with? I know you sort of mentioned this earlier on but in terms of you being a professional patient?

I decided that I wasn’t a professional patient. I didn’t understand the term. I was becoming a much more informed patient, a much more informed citizen researcher if you like and I could do the job better because I understand what research was. I had a lot of confidence in how research goes forward. I wasn’t frightened to make my views known in a professional way within the group and if that’s being a professional patient then I don’t know what a professional patient is. I’m not a professional patient. I regard that as an insult.

And I believe actually to get a research proposal passed these days you have to have patient participants. That’s why I say it’s not just, oh you have a token participant, you sit there and you say nothing and you can tick the box and everything’s fine. You need to be a genuine researcher but you have to choose your patient participants to take part in research very, very carefully because there are people out there who will, quite frankly, disrupt any research team. They have their own agendas and you will destroy in your research team, you really do have to be careful who you recruit to be a patient participant. They need that level of commitment and professionalism.

And how do you think researchers can go about finding the right people?

I do think there should be some, as I’ve said, some degree of training, some qualification, if you like, as a citizen researcher either internet-based or perhaps run at universities, and there you have the pool of people who are qualified in a degree to be citizen researchers. And if say this university you have a pool of citizen researchers and I’m at the department and I want to involve patients, then I have a people there I know have been recommended, have been screened, have been trained to a certain degree and are reliable and I can use them, rather than picking someone from the community because, you know, we must have balance here, so well pick this one from community, and they turn out to be a disaster. I’ve actually been Chair of some, of a committee of a group that was running with the PCT before that went down the plughole. And weve had people on there, patient participants on there who quite frankly have been disruptive and it’s been an embarrassment as Chair to have to say to someone, “If you don’t actually stop being disruptive well have to kick you out of the group altogether”. And that’s really, I find that quite distressing. So I do believe patient participants need to be screened and need to be trained.

I’d have liked a struct, I’d have liked a structured introductory course on methodology: what the terms meant, a little bit about how these studies were done and structured, and I don’t think they had any real idea about how to train lay participants up in this method. I got a bit of bone of contention about this. I think lay participants need to be trained and I don’t see why, I know a lot of participants participate at various degrees you get participants who will tell their story and that’s very valuable. But at some level I think you need maybe the citizen researcher who has actually gone through some level of training it might be online, it might be whatever and then form a pool of researchers which you can pick for so you know that, if you are getting a citizen researcher they are trained to a certain level in what research skills are. They’re not starting from blank. And one point which was made to me, especially about presentations, was it’s alright patient participants doing a presentation, but once they become too polished at doing a presentation and too professional then they’re no longer patient participants. And the same argument is if you become too much of a researcher you lose that, I’m not too sure, metaphysical element of being a patient researcher or being a patient you lose something by becoming more expert. Now that’s never really computed with me, I don’t see why becoming good at something should be a bar to going on to actually exploiting the skills that you’ve learned. That seems to me you might as well learn to be an architect and when you pass your degree they said, “Right fair enough you’re now an architect, we don’t want you anymore you’re skilled,” and want somebody with a little bit less training. The whole thing’s nonsense I think so I do think you need to be trained. People who want to go to that level, not everyone does, need to be trained as a citizen researcher if you like.

First of all you must be professional in your dealings with people. Theres no room for the lone wolf, the, somebody with an agenda, a grudge. You’ve got to be professional. You’ve got to be able to work as a member of a team. You’ve got to be prepared to read around your research subject and it’s got to be an on-going learning experience; you can’t expect just to drift along and be spoon fed everything. You need a certain amount of listening skills. You need to know how committees and groups work. What, what, that you go through the Chair, that you don’t interrupt people, that you use language which is moderate and professional at all times. You need to be committed if you commit yourself to something you need to carry it through, you know, apart from obvious, you need to carry it through. You can’t just bottle out half way through because you’ve lost interest. I’m sure theres lots more. I think you have to be, have a certain degree of altruism, yeah that’s about it I would think. I’m sure theres lots more.

When you said, the first one you said was professional what do you mean by you have to be professional?

You have to relate to people in a team as professionals and the certain rules you have. You don’t go talking behind peoples backs; theres certain confidentiality there. When you’re in a meeting you obey the rules of the meeting. You don’t pursue your own agenda and disrupt the meeting. It’s pretty obvious really. You work as part of a team, that’s what professionalism is about. I don’t curse people behind their backs, I don’t spread gossip about the team leader, I don’t undermine the project for my own dubious reasons. I act in a professional way in which I’d expect people to act towards me.

We had our first meeting and I have to say that, quite frankly, we were both, well to drop down to the vernacular, we were gobsmacked because we didn’t understand what was going on. Some of the words they used were quite intimidating.

And we got a hand-out which described the project and it talked about a triple step, triple step wedge theory. And quite frankly I really hadn’t the foggiest idea what they were talking about, so it was extremely intimidating, the first couple of sessions and I thought I was really out of my depth. In fact I’ve invented what I call the Green’s Taxonomy of Patient involvement. I’ve actually done this in a PowerPoint and I present it at times if I’m asked to present about PPI work, I present this. It starts off with utter bewilderment: what am I doing here? I haven’t the foggiest idea! Dear me, I’m out of my depth, you know. Let me out of here. And then slowly begin to acclimatise to what, what’s happening. And then eventually you reach the stage where you understand most of it and you feel, I call it the breakthrough moment when you think, ‘OK I know where I’m at, I know what I can do, I know my limitations, what can I do to push the project forward?’ And that’s really when you start being productive.

And what prevented you from running away after that first meeting?

Pride.

Right.

I don’t like giving up on things. If I commit myself to something I like to see it through unless it’s painful in which case obviously not.

It would make a difference. I would feel, I would feel as a paid employee and I had to do what the, what the hospital wanted me to do as well. But now I’m a free agent and saying what I want to say within reason. I can make what suggestions I can say. I can say things which the members of staff would not want to say and what are they going to do? Sack me? Well yeah right, big deal, no problem.

So you’re not answerable to anybody?

I’m not answerable to anybody.

That’s give you a bit of freedom.

It’s, what is it, responsibility without something or other? Responsibility without accountability yeah, but you have to be careful, you can’t, you have to be professional about it.

How does it feel when you know that, you know you’re at these meetings and everybody else there who isn’t a citizen researcher is being paid for the work that they’d doing and you’re not? You know the professors and the doctors and so on, does have that any impact on you?

Not in the slightest. What I get out of the studies is much more than payment, it’s much more than payment.

And what do you get out of them?

I get a great deal of self-confidence; I get a get a great deal of knowledge; I relate to people; it keeps my brain alive, one of the many things which keeps you living for a long time yeah. It’s a relationship with people, relationship with the study and looking at it and thinking about it and reading around it, yeah that’s the recompense for me; I mean I’m not bothered about the money.

And did you ever think that you would be doing this in your retirement?

No, no. I think my life has completely opened out since I retired. In fact I think this is about the best part of my life actually.

I get a great deal of self-confidence; I get a get a great deal of knowledge; I relate to people; it keeps my brain alive, one of the many things which keeps you living for a long time yeah. It’s a relationship with people, relationship with the study and looking at it and thinking about it and reading around it, yeah that’s the recompense for me; I mean I’m not bothered about the money.

And did you ever think that you would be doing this in your retirement?

No, no. I think my life has completely opened out since I retired. In fact I think this is about the best part of my life actually.

Really?

Yeah.

Why’s that?

Well, I joined, I joined the Air Force at sixteen, became a State Registered Nurse. I’ve never really liked nursing to be perfectly honest with you. Became a teacher. Perfectly honest with you, I’ve never really liked teaching; I couldn’t wait to leave a classroom. I should have been a librarian or an archivist. I’m an introvert so I don’t relate well to groups and people. You know, stick me in an archive filing documents and, you know, shelving books and I’d be perfectly happy. I was in the wrong job. And this has really been something I’ve really liked doing. I felt at home doing it. And I felt people appreciate it as well and it’s lovely to feel appreciated, it really does. If I was paid you wouldn’t get that appreciation, you wouldn’t get that, I don’t wallow in the gratitude but it’s nice for people to think, ‘Well thanks Dave, you’re doing that and that’s a good job well done. And that goes a long way.

And why did you want to be a member at that time?

Because I was bored basically and I do believe I was shuffling along the road to the dusty death and I thought, ‘Well I’d better keep my brain alive, I want to interact with people, so that was basically what I did it for. I’d like to quote some high ethical motives but no it was really just interest for me. That’s what it was about.

And has that motivation been fulfilled since you started?

Oh yes fully, yes I spend about four days a week down there at the hospital doing various bits and pieces: research work, committees and groups and things like that. So yes it’s a big part of my life now and I thoroughly enjoy it, I really do.

I think really you make your own involvement. So far on the project I’ve stood in on, I’ve sat in on patient focus groups; I’ve analysed patient focus groups information, which is extremely difficult. It’s actually is quite, twists your brain quite a lot that trying to do that. I’ve been asked to give lots of presentations about the work I’ve been doing. And that’s been extremely valuable for me because despite being a teacher I can talk to shedloads of children, but talking to adults has been an absolute paralysing fear for me. And the work I’ve done at the hospital and also the work I’ve done here, I’ve got much more confidence now in talking to a whole, whole loads of people. It doesn’t reduce me to a quivering wreck anymore. So I’ve done a lot of presentations about my role, I’ve recruited patients for the project and what else have I done? I’ve read reports, commented on reports, taken part in video presentations. We did a video about patient’s safety where we acted the parts of patients in bed and all the rest of it and done that as well. So it’s been quite, it’s been a quite wide experience, I think.