‘Take on board that the paradigm's shifted, it's changed. Citizen researchers are now going to be part of academic life. You may not like it, but get used to it because they are excellent.’ Dave G
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.
Age at interview: 67
Sex: Male
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So alongside your role having changed, what has changed in PPI [patient and public involvement], if anything, over the last eleven years since you've been involved?
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.
Age at interview: 62
Sex: Male
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For me, there is far more involvement, there were a few of us to begin with, there are hundreds, in fact probably thousands of people now actively involved in research across diabetes, stroke, mental health, primary care. And I apologise for the ones I've forgotten and that, mental health, but there are a rich good, great, group. So in those sense I feel that I am, to begin with, too many people like myself had to feel that we had to know everything. We had to feel as if we had to know about how research functioned. We had to know about the landscape of research. Who all the organisations were, from the National Institute for Health Research through to the MRC [Medical Research Council] too, all of those acronyms that exist. We had to know who a lot of the people were because we were trying to change policy, governance, practice and practical involvement. We were trying to change individual light bulbs as well as trying to change the way lighting went on in a room, to changing the way architects plan for buildings and the use of lighting. And sometimes thinking, 'Well are the light bulbs we're using today the light bulbs of tomorrow, so how do you influence government policy and check?' So I think for some of us that was almost too much, and to know too much. The great thing about more people being involved, and what I've seen, it, for me, is I don't need to do as much. You can say, "There's a group there, there's a group there – go and talk to them." When there are calls for us to have our voices in separate ways, the internet has, and social media, are showing us that we can invite more people to the table and change the way involvement is, and I think, so personally for me, I think that sense of, there are more people and I would say that I think we're clearer now about what involvement is.
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.
Age at interview: 55
Sex: Female
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OK so INVOLVE is the national advisory group, public involvement in research so that's not just health research it's health and social care more broadly, and it's now part of the national institute for health research, so it's part of NIHR and their…INVOLVE runs as, so there's a small group of staff who, you know, are paid and it's a director and about, I don't know, there must be about eight or ten of them or something. But basically it's a membership so you apply to become a member, which I did probably eighteen months ago and it's, you know, it's, so they had a round of, they advertised for members, so they wanted to attract some new members. Quite a lot of people applied and you know there's an application and you know recruitment process basically. So, and I was fortunate to be, you know, to become a member and I guess, I mean for me that's really good because it means that you; so and it works so there are two or a couple of meetings a year, maybe three, never remember that, and so it's an all-day thing in London and once a year there's a two day symposium and every other year they have this three day conference that they run which is all about public 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.
Derek commented that now involvement was more accepted people could afford to ‘be a bit more bloody-minded rather than playing the game…I think I and others, because we were fighting for our place, acquiesced perhaps a little too much. But we acquiesced because my fear was if we didn't play the game it would have been so easy to say, "Well we tried that and it didn't work." Because if you're troublesome the doors can easily close.’ Margaret felt it had taken a while to persuade researchers not to see lay people as ‘somebody who's going to hold up their study or put a like a spanner in the works.’ Carolyn thought researchers were getting better at not patronising lay people now they were more used to having them in the room.
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.
Age at interview: 63
Sex: Female
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Researchers and professionals didn't really have an understanding either of what a PPI rep was or what they were meant to do, and that's been a gradual work in process, where now that we're, when we're in a meeting where they're peer reviewing a new clinical trial. Well everyone has a say, sort of the nursing aspect, pharmacy, radiology – there's always now a slot for PPI and so that it's done on an equal basis for what is said to review a protocol and information sheet, and just a trial and why we would support it for a patient or… one of the things that a very wise gentleman in London told me at the very beginning. He said, "One thing you always look at when you're selling with research, for better trial is, what impact does this have on a patient and for a patient." But that's a very basic question and that's really how I've always looked, before looking at other aspects of a clinical trial or any study it's going to happen. Well look what does this mean to the person that these researchers want to do it to? And I just think that's the basis for starting around that table. So there's been a slow process perhaps of professionals thinking, 'Oh there's somebody who’s like public sitting around our table,' but that has gradually just, with experience become something that is a partnership, as opposed to oh them and us, or professionals viewing the PPI rep is somebody who's going to hold up their study or put a like a spanner in the works as opposed to realising that we want good research because it impacts people in the other end.
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.
Age at interview: 69
Sex: Female
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Sometimes, I think I see this less now, but something that used to irritate me was somebody would say something in a meeting, a patient say something in a meeting and somebody would go, "Oh that's fantastic, thank you so much". And it wouldn't be fantastic and if it was like you that said it you think, well that was a perfectly ordinary thing to say or somebody else, no it's not. And it's like they're overdoing it; it's like you've said something so we've got, you know. And actually in the end that can be patronising and I think that's probably some kind of, people never mean to be patronising, do they? But it's like a sort of overreaction to a legitimate patient comment of some kind or suggestion. But it's not necessarily earth shattering; it's a suggestion. I'm not sure if I'm putting this over clearly, but it's like the inverse of this, which might get over more clearly the feeling I'm trying to capture, is when people actually feel in a meeting or just a conversation, actually able to disagree with you or challenge you back on something and say, "I'm not too sure about that," or, you know, "What's your evidence for that?" or, "I have evidence that says something completely other than that," you know. That you're kind of, it's grown up enough to have that kind of discussion. And so if that's the grown-up end of the relationship between us and the researchers then the other one I was attempting to describe is like a more infantile version of, you know, patting you on the head, feeling that you've got to, you know, welcome everything. Well actually you should look at our ideas as critically as we look at yours you know? So that's, but I think I see that, I see that less now. And that possibly is partly down to experience, more experience, more confidence and competence on the part of people doing the involvement.
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.
There were mixed views about the extent to which the research community genuinely valued patient and public involvement or whether it was still – for some – a ‘tick-box’ exercise. Tom, Neil and Carolyn described how attitudes had shifted but how more change was still needed. But there were also welcome signs that researchers had started to anticipate what patients would be worried about, were using less jargon, and were feeling more confident about asking for involvement.
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’.
Age at interview: 68
Sex: Male
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Do you think there's any danger of it being a tick box exercise?
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.
Age at interview: 65
Sex: Male
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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.
Age at interview: 69
Sex: Female
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I think there was more tokenism around when I began than there is now. I suspect there still is some there, but people are much more sophisticated about disguising it. But scepticism is kept well under wraps a lot of the time. Well I don't mind people being sceptical as long as they're open to evidence, you know. But if it's just further, more than scepticism, if it's actually, "I've made my mind up that this is just a piece of political correctness, which I'm not going to…". There is, I think there's still some of that around but I think maybe some point during the 90’s, no, perhaps no in the, let's say in the 2000s some people who thought, "Och this is a fashion and it will just go," have realised actually it's not going to go and that maybe they should take it seriously. And increasingly as funders write into the requirement for funding a research project that there has been some PPI in planning as well as in how our project would, our research proposal would actually pan out if once funded that that has helped because people have had to take the whole notion more seriously. And as more and more patients sit on the funding groups that look at those proposals, you can sometimes see something that claims to be ‘this is our PPI strategy, this is how we've involved patients and this is how we're going to’ and some of it looks really hollow. But if you're able to say, "Actually this isn't for real," you know, “They haven't really thought about this; they haven't really involved people; they think asking one or two people is involvement”, then you can maybe send something back for another go at writing a proposal with some constructive suggestions about how they might actually strengthen the patient and public involvement.
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.
While a lot of change has happened, people felt there were still improvements to be made. As Dave X said, ‘Rome wasn’t built in a day. It’s going to be a long road.’ Dave A commented, for example, ‘There are about something like 2,000 national portfolio trials in health research. So that is a big number, probably a quarter of those have had lay input. It needs to be more.’ People identified plenty of areas where they felt things still needed to improve (see also ‘
The future of involvement’, ‘
Representing a range of views and experiences: diversity’, ‘
The value and impact of patient and public involvement in research’ and ‘
Difficulties and barriers to involvement’). These included: more influence on research priorities and design; widening the range of people involved; improved training; more involvement in pharmaceutical industry research.
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.
Age at interview: 67
Sex: Male
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Oh yes well perhaps when we first started the PPI there was two of us patients and the other patient had been working in the health industry. So I had three specialist nurses for research, and her and just me as the token idiot you know [laughs] who's asking the silly questions. But that was, that's, it's OK, they sort of, you know, pat him on the head, you know, he's still sitting there when you come out trying to write down notes so he remembers or what it is.
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.
Age at interview: 41
Sex: Female
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If you're going to involve the public and patients in research they need to have a stake in designing research rather than being - I think the model at the moment, it's moving slowly away from people being engaged, and told that they're participants, and actually being research subjects or, I don't know, proof readers, or whatever else. I think they are beginning to move from being very peripheral and very tick box, towards being actually properly engaged, which includes training; which includes, you know, meetings that aren't about the research but, brings them together. Which includes being you know, being sent things between meetings to keep the interest and to keep the enthusiasm, which includes being told what they have done. But, maybe we need to move it on a little bit more to – ‘OK so you've been engaged, here are seventy five per cent of the research that we want to do, why don't we sit down together and talk about the other twenty five, and what you think might be important to find out by doing all of these things’. What do you, as PPI participants, co-researchers, what do you want to find out?
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.
Age at interview: 67
Sex: Male
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And so how has your role changed over the years since you started?
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.
Better
understanding of the impact of involvement and more feedback from researchers was another area for improvement. But as Dave A pointed out, the very fact that lay people are now working so closely alongside researchers makes it harder to distinguish what difference they have made individually.
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.
Age at interview: 60
Sex: Male
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Some changes subtle and some more profound I think. I think, I think the profound changes are that now lay people are accepted into that world without question and people the clinicians and the professionals in the cancer world attend meetings and they now expect there to be a patient representative in those meetings.
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.
Age at interview: 64
Sex: Male
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It would be, nice to be able to measure the impact, of PPI. So far, it seems to me this has proved apparently fairly fruitless. There doesn't seem to be much literature which really shows that because there was better PPI here; however, we will want to describe better PPI – this project was better. I think there's a lot of anecdotal evidence that actually is the case and there is certainly some indications that methodologically studies where PPI has been good recruit better, have more reliable outcomes. But I think that's a difficult piece of research in itself to do and I'm not sure it's really been done and I don't, perhaps it has but I haven't seen the evidence. It would be good to be able to see that and I think for some people that probably seems very important that we have that kind of evidence. I'm, what's concerning me more at the moment , and because I've attended the INVOLVE conference, twice now, two cycles running, I've become rather more aware of it. We do seem to be reinventing the wheel constantly, you know, three years ago when I went for the first time to an INVOLVE conference there was quite a lot of hand wringing over the 'we must improve the way in which we demonstrate, that PPI involvement improves outcomes in research'. And yes, we all seem to be committed to that. I then go to the next one two years later and the debate hasn't moved on; there's no more evidence and people seem to be saying exactly the same thing. And actually I did listen to more than one researcher who seemed to be discovering PPI as though it was something new and had just occurred to him or her for the first time. And that was a bit disappointing. I would have expected over a three year period things to have moved on a bit. So, I think we had quite a lot of work to do really.
Although people were mostly very positive about the greater priority now given to patient and public involvement, Richard sounded a note of caution about a ‘PPI industry’ building up, and the need to remember the main aim of making research better for patients.
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.
Age at interview: 54
Sex: Male
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First and foremost, I think, the first thing I've noticed is that people coming into PPI [patient and public involvement], certainly in cancer, but also from what I've seen in other diseases and other areas of PPI work is there is a greater background knowledge that people are bringing with them. It may well simply be that it's the internet which has helped, which certainly makes information far more accessible. There's more of it, of course, and so it's more accessible. You have to use a better filter to actually work out what the sensible stuff is, but also it's available in a range of formats. There are far more patients writing information for other patients; there are far more lay summaries of research proposals and research outcomes, not enough, but far more than there was a decade ago. So I think firstly the people coming into it have a much better, much higher level of background knowledge, and that's very, very true in cancer.
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.
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