Yeah, no but I think the key is getting organised because you have to be scheduled. You can’t just say, “Oh right, well I need to find some patients, let’s go downstairs, there’s a clinic downstairs, to find someone.” Get organised, see the value in it, immerse yourself, try it out and think about the benefits; reflect on what it’s doing for the questions in your research as a whole; and think about what it’s also doing for you in terms of understanding where the gaps are. Now, if you think that’s what research is really about, then you have prioritise it and once you’ve prioritised it you’ll find the time.

When did you start to involve patients and members of the public in your work?

Well look I think that’s. I mean when did I start? Probably twenty years ago when I first came to medical school. I decided to be a doctor and a clinician because patients were around and the public were around with diseases and health problems. And, throughout my clinical training I’ve always involved patients, so the idea I didn’t is nonsense. And, if you think about it you have to because how would identify where there’s a clinical issue, where there’s a problem? What makes a difference to a patient? You have to do that with relation to patients. So, I think in some ways, if you’re a clinician, it’s much easier to say you’re involving patients all the time. And so, on Sunday I worked in the out of hours, I saw twenty patients. Twenty patients with twenty different problems, twenty issues, twenty different diagnoses, twenty different anxieties, concerns, information needs.

Some of them were really interesting and would be used potentially going forward. It’s just that what’s happened is there’s been a realisation that there are many researchers who are completely disconnected from the patient focus. And it’s practically impossible to do research if you’re not connected to patients, and near to patients, because you’re going to do something that might be academically interesting. Academically interesting to an academic audience, but of no value to patient care.

Yeah, the key benefits I think is actually, is one of the things is, the project should look better. You know you should be able to say, “We’ve shaped this project with patients in mind.” We’re doing one at the moment which, you know we’ve shown it’s feasible, because in our pilot and with our patients, we’ve worked to make the pilot feasible and pragmatic. It worked. And when we go to the funder for the bigger trial, we’re going, “I thought we’d use all this; and actually we used all this to inform the design.” And it’s really nice when they come back and say, “Well actually it’s exemplary what you’ve done in the PPI section.” And we think, ‘Yeah actually we feel much more confident we can use the NHS’s or the NIHR’s money in a cost effective way to do a trial that’s already shown to be feasible. What we want to show is should we implement it now. And we’ll continue to use the same group throughout the whole trial, and using that group then to think also if you’re going through, ‘Well if this is going to be effective how do we implement, where do we go?’ is another benefit. So, yeah there are benefits in many areas.

Yeah no that’s interesting like, I mean I’m sure there are people out there saying, “You need clinical trials for, to compare patient involvement versus not,” and as an evidence-based medicine person you know, they expect me to say, “Where’s the clinical trial evidence?” But that’s not everything, you have to say is, “We’re not going to do this until we have evidence over effectiveness.” You just can’t run a world like that. Some things are pragmatic, make sense and actually are a good idea. Now, if we’re going to spend hundreds and millions on it then maybe you do need evidence, but the idea that, actually in designing questions, designing research, I might speak to people about what it means to them as opposed to not. Makes a clinical, pragmatic, sensible thing to do and, my experience is it’ll improve your research. Now, if you want to wait till clinical trial evidence appears, you’re probably going to end up with research that doesn’t make much of a difference in the meantime. But if you want to wait that’s OK. I would suggest some things are a sensible thing to do and at the moment it makes sense.

Yeah I think the being paid is a difficult argument because you may end up with a different type of person, and there’s a big argument the whole book for economics was about what happens if you start paying people, you may get selected. I do think you should pay the right expenses at the right time. You should provide the right meeting spaces and lunch for people because they’re giving their time. But actually paying people presents a problem because, then some people might see it as a particular job and then you get three or four of these. I think it’s an altruistic contribution to research in the same way as people participate in clinical trials, they do that without paying, and I think that is actually the ethos of patient participation.