Researchers' experiences of patient & public involvement

Marian

As a researcher we have a long timescale before we get the sort of buzz of, you know, the paper being published. Even longer timescale before we get the actual impact, and we'll probably never know the people on whom we've made an impact. At least by being involved with PPI groups throughout the course, we get a bit of that positive feedback as to what the benefit might be and for me that’s very, it raises my enthusiasm to battle the challenges of getting research funding.

Jim

But you know if your study is well designed which it should be if you’ve got patients and public involved because they should ask; they’ll ask elephant in the room questions and it will mean your design will be better, but then it will get through ethics more easily. So, there's a benefit there; it's not the reason for doing it but it's a side benefit.

Suzanne

I think I was always kind of interested in, you know, in the sort of, I guess a power balance really that I was often going to talk to people on really sensitive issues – you know about their health, about how it affects them personally and everything else. And actually, I sometimes, I personally was kind of questioning is this right sometimes and, you know just working within the system as it was. Obviously, they're giving willingly but actually could they have more of a say in what I was asking and that sort of thing. So, I think that’s kind of why I did.

Sergio

With the involvement of patients, you change the way you express your questions, the way you frame it. You put things into context, into real stories. You see whether what you're doing has any impact in the mind of people who lived through the turmoil of having a disease or having cared for somebody with a severe disease.

Narinder

Well as I said the incentive may be that you're more likely to get a grant, a successful grant if you have that as a very active part of it which is more or less required. But obviously the incentive would be; the main incentive would be that you’ve got a meaningful study which is going to get to the truth of a condition and is going to have the best possible treatment for patients.

Alison

But also, I guess it gives you a sense of confidence that, if you’ve, in terms of interpretation of material and also, you know, writing up an information sheet or a plain English abstract or something, it is your people there to check it out with and you think, 'OK they may not have changed many words, they may just have said it's fine…' but that’s a useful thing, that’s an endorsement.

Sarah A

I think it's this issue of transparency and the issue of where one is meant to be for the public so they should be involved and I do feel the more I've got involved in it I feel like it's not being given a fair crack of the whip actually so, partly I think like well you know, before we debunk it as we claim we will, then we need to at least do it properly.

Chris

The most amazing impact is seeing how; hearing some of our parents talk about their experience of being involved with us. And that’s very moving really because they’ve often been quite disempowered through becoming parents of disabled children and they had significant struggles and hearing them talk in presentations or even on TV recently, you know, about how being involved in research has really helped give them their self-confidence and being, you know, feeling like they make a difference to – for the benefit of other families and, you know, it's amazing.