Patient and public involvement in research

Introduction: Sophie Petit-Zeman

Patient involvement in research is really all about partnership? It's about working with patients for two reasons. First, to help ensure that we ask the questions that matter to them, and secondly, to ensure that we do research in ways that feel right and so that they want to take part.

We interviewed 38 people about their experiences of PPI

Ben: It's really just to get ordinary laypeople involved from the very beginning, from the from the ground up. Rather than it's all the reports and the, the theories being propounded by scientists or research doctors there needs to be a bit of involvement with human beings at the very beginning, or possibly the people who are poorly. So they can actually put their ‘two penn’orth’ in and say, ‘well actually I don’t think that would actually help me very much it's the quality of life that I'm after, not necessarily the quantity of life’, or whatever the impact of the particular research survey might might be after.

Kath: What I was there to look at is what it looked like from a patient perspective. And imagine myself in the boots of the people taking part for the project, in the project, looking at how it would feel for them. Was it asking the sort of questions that I feel that people in my community that I know would be asking?

Maxine: But it was really interesting because their idea that they developed was that research questions should not just be left to researchers because in the end it was for the benefit of patients all this research, is not for the researchers really though they get pleasure doing it and answering questions. But, but the patient benefit is what research is about.

Peter: Well I think it humanizes it for a start,  it makes it realistic, it keeps it focused. And I think if patients are involved in the research process, and involved properly from start all the way through to finish, then there's a better chance that that research will stay focused on the real problems and the real issues that need to be tackled.

Why take part? What’s it like to be involved?

Sophie Petit-Zeman: Some people get involved in research because they're patients, and they have experience of a specific condition. For other people they get involved not for that reason, but because they're not medical or health professionals and they want to help research stay grounded. And it's really important that we involve them.

Margaret: Giving back for the treatment that I got and of the care that I received, and anything I give and PPI is nothing to what I get back out of being part of it. And that's being very honest. But certainly I just see it as being a partner with researchers and helping to improve treatments and quality of life for other patients coming out of this from the initial bit of what's done in the lab, right through to what it means in changing services and treatment.

Brin: I think when I first got involved with stroke research, as I said earlier, it was because I wanted to improve physically, but that very slowly changed into being involved for my cognitive recovery and my psychological recovery.

Nadeem: And that kind of, sort of tickled my nerves, yeah, in the sense that, you know, I said right ok well that looks interesting. Because yes ok I have been a patient and I'm still a patient, yeah, but I think to contribute to the work that you guys do, yeah,  and be involved in that particular process, I think is quite important.

Dave G: Because I was bored basically and I do believe I was shuffling along the road to a dusty death. And I thought, well I 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.

Sharon: And that I should also add there are times when you will not have, not be in agreement and that you will -, so it's not always great, you know, it's not always satisfying. There are times when you don't agree or when you feel frustrated.

Maggie: It's very seductive, it's, it's very exciting and it's fascinating. But it's also you feel extremely valued. You feel that you are making a difference.