Patient and public involvement in research
Changing attitudes to involvement over the years
There was general agreement with Dave G that the priority given to patient and public involvement had changed over the last few years. Kath suggested it was a combination of leadership from the top and pressure from individual lay people on the ground that had made the difference. Roger B praised the NHS National Institute for Health Research [NIHR] for helping to spread a culture of user involvement which began in mental health, HIV and cancer research to other fields. Tom and Carolyn pointed out how influential it has been that many research funding organisations now expect to see involvement in grant applications. The role of INVOLVE, the national NHS advisory group for research involvement, was also felt to be important.
The National Institute for Health Research has played an important role in promoting involvement. The UK is now a world leader in the field.
The National Institute for Health Research has played an important role in promoting involvement. The UK is now a world leader in the field.
Oh! The fact that it is so accepted now. I think the work that NIHR [National Institute for Health Research] has done has been, you know, really ground-breaking for the whole patient involvement community internationally. You know, I think there's little question that the UK leads the world, you know, and the work that eleven years ago, twelve years ago, we were doing in cancer is now, in disease suitable ways, replicated in diabetes and stroke and, you know, all the other themed areas, and indeed at the research network level on the ground. I think it's absolutely wonderful. And you know all power to the elbow of people like Dame Sally Davies [Chief Medical Officer] for making it happen.
Derek has seen the number and range of people involved in research improve. In the early days the same few people had to do everything.
Derek has seen the number and range of people involved in research improve. In the early days the same few people had to do everything.
Rosie works with INVOLVE and feels it has been very important in promoting and supporting patient involvement in research.
Rosie works with INVOLVE and feels it has been very important in promoting and supporting patient involvement in research.
And what's good about that is that, you know, so they bring issues and changes mainly these days, changes to the infrastructure, you know, NIHR – changes, there's going to be a new… the latest thing is this academic health sciences network that everywhere is going to have, you know, and how public involvement needs to be part of that and, you know, so there's, so they bring issues but the members can also raise issues and they have work streams . So I've been involved in a working group and they are developing; so they've got a website with lots of guidance on it which is accessible to everyone but this bit of the website is to create a map so that organisations or groups that are specifically interested involvement in research can be on the map and that you can find, you know, so that, so you could find it by your, by health topic or by area.
So it's really a way of trying to link people up better. You know so I've been in a project that's been involved in a project that's developing that bit, the website. So there's actual bits of work and…but you know we have these meetings and people can bring up issues. Effectively it's a way of I suppose people who are professionals or interested in this area, you know, as a quite strong part of their professional life to come together and they're very clear about there has to be a, you know, quite a large number of service users and carers and members of the public more generally, and it's, it's a lovely organisation, it's really friendly, it's really welcoming, it's very interesting and I really enjoy it every part of it, it's great.
It’s been a slow process to overcome a ‘them and us’ culture, but now researchers just expect lay people to be in the room and to have a say.
It’s been a slow process to overcome a ‘them and us’ culture, but now researchers just expect lay people to be in the room and to have a say.
Researchers with little training or experience of involvement can be patronising in meetings. Younger researchers and social scientists seem more open to it.
Researchers with little training or experience of involvement can be patronising in meetings. Younger researchers and social scientists seem more open to it.
Partly that's because more people are trained. Younger generations of researchers coming through seem to feel more open to the benefits, but people who made their careers made their reputations twenty/thirty years ago possibly never had to get involved with us as patients in that kind of relationship when they were building their careers, which is one reason why I feel making some kind of, you know, training and development available to those people can be really helpful. It's not just the younger ones. And people when we did the, an evaluation of the training that I've been talking about, some people pointed that out. Sort of the mid-career or late career people have had to just kind of get on with it without training or support, that they're the ones who are supposed to be ensuring that other younger people and often it's the younger people at earlier stages in their careers who have actually had more training. Or who sometimes get it dumped on them. They've been told, "OK you do the PPI," you know, or, "We'll get the post-doc to do the PPI when we appoint whoever that is." You think, 'Hang on a minute, who's going to lead this and support it and co-ordinate it?' And, you know, maybe needs just more than one novice to, it's a mixed picture out there. I see a lot of quite, I thought that what I would see is quite favourable and good quality responses because the particular field I work most in, which is the psychosocial qualitative kind of studies, those researchers, I think, are often very open to and already involved in PPI and interested in doing more. I think, you know, they want, I think they're converts perhaps a lot more than people on some of the much more kind of hard science end who haven't yet had to have a lot of experience of working in a collaborative way with patients.
These days Tom feels his views are actively asked for and it’s not a tick-box exercise, but ‘there’s still dinosaurs out there’.
These days Tom feels his views are actively asked for and it’s not a tick-box exercise, but ‘there’s still dinosaurs out there’.
Well we have come across that in the past and it still does exist – not just in research but in other areas as, as well. "Do you have patient and public involvement?" "Oh yes, aye I spoke to so and so on the phone," it's ticked off whatever. So yes, there is – I have to say I've been probably fortunate where anything that I've been involved in , my view and my opinion, if I haven't offered it, it has been asked. There were occasions where you felt, way, way back when I first got involved, one or two situations where that could have been, you know, the tick box situation but I always managed to get my, my say in things. And I think it, I think it's now, from my perspective, you can't go to a meeting or anything like that and, and hide because more and more your opinion and your view is being asked for. And it gets to the stage where if, I mean I've been at meetings where I've more or less, for quite a lot of time, everything has been said and, "Oh that's fine oh I agree with that," and during the course of the meeting the Chair has said, "Tom you're very quiet, have you got nothing to say?" So you can't hide, you know which is good because then we're getting away from the, the tick box situation there. But it still does exist in areas – some of my colleagues have experienced it but I've been quite fortunate in that, you know, my opinion has been asked for if I am sitting quietly and drinking my tea.
I mean there's still, with all due respect, there's still dinosaurs out there who think, 'Oh no they shouldn't be involved, you know, we'll tell them what to do and what, what's best for them,' you know. But among the ones who have come out of the dark ages then yes it's very much accepted because a lot of them won't progress or won't proceed with their proposals or their studies or whatever without contacting consumers.
Generally involvement has moved from tokenism to lay people coming up with research ideas – but occasionally researchers can still seem defensive.

Generally involvement has moved from tokenism to lay people coming up with research ideas – but occasionally researchers can still seem defensive.
And what do you think researchers attitudes are towards PPI?
That's a huge spectrum. Some are really thrilled to bits about it now because they've been through the loop and they've seen how it works, and they've got more effective at using people's skills, and that's been tremendous. The other end, some people are still a bit paternalistic, a bit defensive, possessive, all these little nasty adjectives. You know, ‘this is my research and please don't meddle with it’ sort of thing. But I think that the trend is very much away from that now towards involving people in a useful and meaningful way.
When I joined the greatest danger was what we called tokenism where you just felt you were there for the sake of the paperwork. And gradually that has changed enormously from the minimalist role, which would have been – is this summary of the research understandable by lay people? Yes or no? Right up to now where you can actually find research projects where they've got co-applicants, lay applicants, you know, and there's a partnership right from the start where some lay person will say, "Do you know I wish we could look at so and so. Why don't you think of some way of investigating this because all these people are having this problem? Perhaps, you know, you could get a project going." And the idea actually originates, you know, from that level and the researchers think, 'Oh yeah I expect I could do something about that'. And you get this co-operation at the very start. You know, that is what I've argued for, for three years, not only I, others have done it more effectively. But it's great to see the IP involvement moving towards the front end of the project itself.
There is still some tokenism around, but many researchers have realised this isn’t just a fad and now take it seriously.
There is still some tokenism around, but many researchers have realised this isn’t just a fad and now take it seriously.
I mean that's quite interesting to sit on a group where you are actually along with a range of other research expertise looking at patient and public involvement and assessing it and saying, you know, what's weak and what's not. That's all helped. Some people have had to begin to take it seriously who wouldn't have wanted to. I think a lot of people have genuinely felt the benefit of being made to think about – being made to think about I think sounds a bit more confrontational than I mean, but, you know – coming to see things in the way that's different to our perspective that's different, and that they've experienced the value of having input from patients and so they're kind of ready to do it again, or they just feel more confident about doing it.
Researchers need to think about how to include a wider range of people. Payment is one way to support people with different needs.
Researchers need to think about how to include a wider range of people. Payment is one way to support people with different needs.
And it's alright to ask, you know, to ask people, "Can you explain this to me?" People want to help you know but you have to ask and being in the PPI is asking for other people who are not, who can't be there because unfortunately within the PPI you get a lot of people like me, white retired people who've got time and how do we get the voices for the people who are hard to get? They've got to earn a living, they've got to go out there and, and they've got children, they need babysitters and they can't just afford financially. We've got to find a way of getting their voice heard somehow – that's another little bone that I've picked up on. That I'm gnawing on.
And have you any ideas about how to do that?
Well I think, I mean when we have our meetings, they're great meetings if you want to get involved in PPI. We start at eleven o'clock, we have lunch and finish at two o'clock. That's a great work day [laughs]. And they do help us out by giving us fares and we can claim back fares and things like that and they make it quite easy. I don't personally because I've got a bus pass you see, but young people they've got to get there. I think there might be something where they can give some sort of amount of money, which isn't working, I don't know, fifty pounds a day, you know, just, just to so that they can pay someone to look after their children. I don't want it to be, become an industry where it's a factory. But we're going to get the same boring people that retired, people who've got the time and the inclination, we've got to get to people joining PPI who can't do it. We've got to make it, we've got to like we do for the disabled, we enable them by putting slopes there for the wheelchairs and we have now enabled people so that they're in our society more. And we've got to do the same for this with the PPI, we've got, their voice has got to be heard in the medical bits and so the way to enable them is to have some kind of little bursary that when they come to meetings they can do it without financial loss.
And people who are on your group are they all similar to you, that you know you said that usually people are white, retired, you know I don't know if you said middle-class?
I didn't say middle class but [laughs] I don't think I'm middle class, see? A builder, you know, doing, digging the trenches and things you know.
There is less of a tick-box approach than there was, but Helen would still like to see more involvement in designing research.
There is less of a tick-box approach than there was, but Helen would still like to see more involvement in designing research.
Roger B is working to persuade pharmaceutical companies to have more patient involvement in their research.
Roger B is working to persuade pharmaceutical companies to have more patient involvement in their research.
Well, you think it's stopped changing? [Laughs] No it's still changing. Well, I think that the one big change I'd point to is that we are making inroads into the pharmaceutical industry. As a patient community, we are making inroads into pharma research. It's slow, there's a lot of protection there understandably, there are commercial issues about commercial confidence, for example and, you know, we have to learn as patients that we have to be able to respect those sorts of issues when they arise. But, I've done work in the last year with three pharmaceutical companies helping them think their way through how they do, bring patients in alongside the evolution of their research strategies and their actual research studies, and I know that there are other companies as well doing the same thing because within Europe we have a, probably a fairly closed little group of about ten or a dozen of us, all of whom are doing this in little ways with individual companies and we do occasionally meet up and pool our information.
Lay people are now accepted without question – but the more closely involved they are the harder it is to identify what difference they’ve made.
Lay people are now accepted without question – but the more closely involved they are the harder it is to identify what difference they’ve made.
The more subtle and the more difficult things to tease out of that involvement is to try to work out exactly what the impact of patients and carers has been on that world. And it’s a question we’re always asked. I spend a lot of time now visiting research conferences and research meetings and, and talking to professionals and they immediately start to ask, you know, what difference have you made, what is your impact there, and that can be, that can be quite difficult to see really. Because we’re, I guess we are just one now of a group of multi-disciplinary people working on projects and studies, and to actually say which, which change you’ve been responsible for, is not an easy thing to do.
Andrew feels the debate about measuring the impact of involvement has barely moved on in three years, and some researchers still seem to be discovering involvement for the first time.
Andrew feels the debate about measuring the impact of involvement has barely moved on in three years, and some researchers still seem to be discovering involvement for the first time.
People getting involved these days are well-prepared, and researchers are more interested in what they have to say. But Richard worries there is a danger of ‘PPI’ becoming and end in itself.
People getting involved these days are well-prepared, and researchers are more interested in what they have to say. But Richard worries there is a danger of ‘PPI’ becoming and end in itself.
If I were to apply to be a cancer representative on a clinical studies group now, which I did ten years ago, I wouldn't give myself the job if I were interviewing because I actually don't have enough background knowledge. I don't have anywhere near the amount that the people I interview now do. I think too there is more of a focus on outcomes again certainly in cancer, but also in other diseases. There is the knowledge that PPI does work, that it does improve the quality of research, that it does keep the focus on patient benefit. So I think there is more of a focus on outcomes not process. Very few people now tick the box – "Oh we have to run this idea past a patient representative; go outside in the waiting room, form a quick focus group and ask people to say yes or no." I'm not suggesting that ever happened in reality. I was part of one or two focus groups that came pretty close to that though. It is much more serious now, and it's much more focused on having genuine impact. I think the third thing I've found, which I, which worries me, is the issue of PPI as an end in itself. Partly these interviews, I think, are part of that process and it does, it does worry me to a certain extent. There is almost a PPI industry building up and people have PPI strategies, and whilst I understand why that happens, I think it's very important to remember that PPI – patient and public involvement – is a process, it's not an end in itself. And I think there is a danger of it becoming that.
Last reviewed July 2017.