Carl’s research covers many areas, but is mostly about how to improve clinical practice based on evidence. He focuses in particular on making diagnoses more accurate and on non-communicable diseases, including cancer and cardiovascular disease. He said that most of his ideas come from his GP practice and that maintaining this relationship with his patients is incredibly useful for informing what he does. In fact, he said it’s practically impossible to do research if you’re not connected to patients and he felt that it was important that research added value and made a difference to patient care.
Despite working in evidence based medicine, Carl believes it’s important to involve patients without having evidence for the difference it makes because it’s ‘a sensible thing to do’. He said involvement makes research projects more attractive to patients as they are designed with them in mind. He doesn’t think patients who get involved need to be representative of all other patient with the same condition. He said he couldn’t represent all other GPs, so could one patient represent the rest? If researchers are concerned about having representative views, Carl suggested they could conduct a patient survey.
Carl would like patients to get involved in publicising research findings. He said, ‘They should insist that the research is communicated back to them. They should be involved in any summaries or findings… And they should also be actively contributing to what this means.’ He always feeds back to people about how they’ve made a difference in his research and thanks them for their involvement.
As a clinical researcher, Carl feels he has always involved patients. It is different for researchers who have no patient contact.
As a clinical researcher, Carl feels he has always involved patients. It is different for researchers who have no patient contact.
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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.
Good patient involvement has given Carl and the funder confidence that his trial will work and not be a waste of money.
Good patient involvement has given Carl and the funder confidence that his trial will work and not be a waste of money.
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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.
Carl argues some things don’t need trial evidence. Involving patients in research is just good sense.
Carl argues some things don’t need trial evidence. Involving patients in research is just good sense.
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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.
People should never be out of pocket, but Carl worries that paying for their time undermines the ethos of volunteering.
People should never be out of pocket, but Carl worries that paying for their time undermines the ethos of volunteering.
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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.
Doing involvement well means being organised, planning ahead and allowing plenty of time.
Doing involvement well means being organised, planning ahead and allowing plenty of time.
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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.
