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Patient and public involvement in research

Andrew

Age at interview: 64
Brief Outline: Andrew became a lay member on a local research network board after responding to an advertisement in a national newspaper. He thought it would be a good use of his time and the skills he had gained in his career.
Background: Andrew is retired, but he used to work as a teacher before he became assistant director of children’s services. He is married. Ethnic background: White British.

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Andrew answered an advert in a national newspaper looking for lay members to sit on a comprehensive local research network. He had previously been admitted to hospital for what he described as a fairly trivial problem, but caught an infection whilst he was there and became seriously ill. This experience, his interest in the post and a chance to use the skills he had acquired through his career motivated him to apply. The first few meetings he attended were difficult because the other members used a lot of jargon and he said there was a lot of “learning on the job from the first day”. Now he feels more confident and is happy to ask for explanations from the other members, who are very understanding and supportive. 

The types of things Andrew has been doing since he became a lay member, include reviewing research and funding proposals. He has also been involved in developing a PPI strategy for the local research network because they wanted to evaluate the usefulness of their patient and public involvement. They decided to widen the range of people they were talking to by setting up stalls in hospitals, shopping centres and at local events, and speaking to members of the public. He later became the chair of the comprehensive local research network board meetings after being elected by the other members.

Because there are many types of activities to do with PPI, Andrew thinks anyone can get involved, although he thinks they need good training and support. When he started reviewing funding proposals, he was given a mentor, which he found very helpful, and has since mentored other new lay representatives. He thinks this sort of training and support is very important, and even though he has met many researchers who are enthusiastic and willing to do PPI, he feels they could benefit from training and support too. 

Andrew finds PPI interesting and rewarding. He said the main costs of being involved are time and energy. There are some financial costs, but these are always reimbursed, which he thinks is important because it ensures everyone can do PPI. Andrew thinks that working together with researchers and clinicians to improve research is the goal of PPI and that the uniqueness of lay members’ experiences is more important than whether they represent the wider public. He often encourages researchers to do PPI by saying there is “a huge well of enthusiastic altruism out there” and that often people are happy to help out with research because they think it’s important and socially useful.
 

Some researchers treat patient involvement as a tick box exercise, which Andrew thinks defeats its purpose.

Some researchers treat patient involvement as a tick box exercise, which Andrew thinks defeats its purpose.

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I am, however, conscious that in some other areas that I've looked at that yes, for some researchers, patient involvement is a tick box exercise. There's something on the form and, you know, you've got to find, you've got to tick the box because you won't get the money at all if you don't. And if you tick the box, you've got to have found something that'll substantiate that and that's the real worry because then my experience has been that researchers are rushing around finding, retrospectively, some engagement with patients, and that's not terribly helpful and it doesn't address the fundamental question, 'Why would we be doing this research in the first place?' You know, ‘In whose interest is it?’ That's where I think research has got to start. 
 

There are many different ways for people to contribute that suit different skills and interests.

There are many different ways for people to contribute that suit different skills and interests.

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I think it depends entirely on the setting; people do different things. PPI means a whole range of things and I wouldn't want to circumscribe what people's contributions could be in particular settings. Some people, because of their personal experience, are very good at working closely with researchers to develop really good types of research, which will succeed because patients will want to get involved with them. You know, I've read a lot of research proposals in the last two or three years because I'm on one of the funding bodies. It astonishes me at times, the degree to which very good pieces, potentially very good pieces of research are harmed because the expectations by the researchers of patients are utterly unrealistic. And if they had talked to patients, they would have sorted out some of the methodological and practical problems, which they're likely to experience in putting those proposals together. The good ones, of course, have done exactly that, and you can see that patients, for example, are really closely involved and may well become applicants and part of a research team, and that it doesn't just look good, it actually gives one some confidence that the methodology is going to work. And we know, for example, that the biggest reason any particular clinical trial or research project fails is because researchers overestimate the number of people that they're going to be able to recruit and retain. And they do it consistently because they want the money in the first place and they want to be optimistic about their project. It's utterly understandable. 

Patients in those circumstances, particularly patients who understand that disease area, can help to mitigate that. But that's one set of skills that a, you know, a patient might very importantly bring to a particular proposal. The process of reading those and trying to assess, again, you know, the statisticians will take one view, the methodologists will take another view, patients will probably take another view. And I think it's really good that all the funded programmes, I think with NIHR, for example, now include patients as part of the, as part of the funding process. I think that is really important. But it will probably be a different set of skills that those patients involved in that bring than might be used elsewhere, and so on. So, that there are lots of ways in which patients and the public can be involved and they will bring different skills too, which, hopefully, are appropriate for the particular task that's involved.
 

Lay people could design their own training. Andrew has always felt able to learn by asking questions, but would like more feedback about the value of his contribution.

Lay people could design their own training. Andrew has always felt able to learn by asking questions, but would like more feedback about the value of his contribution.

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My inclination at the moment is to think that more needs to be on offer; there needs to be more that is accessible to PPIs at times and places and in ways that they would feel helpful and appropriate, that actually, the only proper way to structure any kind of PPI support and training is to resource PPIs to do it for themselves. You know, to encourage the networking of PPIs and to say, "Right, what do you want? We will provide what you are asking for", rather than, to begin to come up with a, with a curriculum for public and patient involvement. I think there's quite a long way for that particular debate to travel at the present time. But I think it's a live debate; I think people are thinking about it and indeed some of us are sort of encouraging it to happen.

Have you had any training since you started the PPI thing?

Not in any consistent or organised way. However, any request that I've made, for example, to attend INVOLVE conferences or to go to various meetings where you could say there was a training element or developmental element, that's always been accepted and supported. I've had access to people who've been only too happy to give up time and answer my questions, and I've had a, yeah quite a lot, of, well a lot of informal learning of course. What's been lacking might well have been any kind of review and the opportunity to give me feedback on my performance or contribution and anything, and for me to, you know, more formally ask questions and so on. That, that hasn't been there and maybe, maybe that would have been useful given the particular roles that I got involved in. I mean I've asked for a feedback on one or two occasions, but it's been tremendously genuine, sorry, tremendously general and supportive. Actually I don't mind been criticised, you know. I'm quite happy for somebody to say, "Actually, you know, that's not what we were looking for." So, it may be that, you know, alongside training and development the opportunity for review and reflection is also important.
 

Andrew has always felt accepted by professionals, but it’s essential to have more than one person on a committee. They will leave if they feel isolated and threatened.

Andrew has always felt accepted by professionals, but it’s essential to have more than one person on a committee. They will leave if they feel isolated and threatened.

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I mean, if you're thinking about responding to an opportunity to take part in PPI then I would encourage anybody to take a leap, to do it. I mean my own experience has been that I have been very well accepted by the professionals, whether clinicians or academics, who have been very supportive. So, take a leap even though it will be into unchartered waters and the language and the environment maybe really a bit foreign. At the same time, latch onto the support and guidance that is available. I think INVOLVE is a really useful organisation, and networks and particular clinical teams and organisations will almost certainly have their own forms of support. It's worth seeking those out, and indeed having some expectation that whoever you're working with, as part of their contract with you, will be prepared to help and support you and find you independent advice and guidance Because I think what we should never be put in is a situation where you're the lone voice and feel isolated. It's simply good practice that we shouldn’t put patients and members of the public, members of the laity in that kind of situation where they do feel isolated and threatened. Indeed that's a sure way of losing people from situations. But, yeah, put your toe in the water, but also have some expectations about the support that's available.
 

At the first few meetings Andrew felt excluded by the jargon used, even though people were welcoming. It helped that he was not the only lay person.

At the first few meetings Andrew felt excluded by the jargon used, even though people were welcoming. It helped that he was not the only lay person.

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My first meeting, indeed my first two or three meetings of this Board I think largely went over my head. People have said that all professions are conspiracies against the laity and the way in which any of us in our own professional area talk in acronyms and use jargon, is a way in which we automatically [laughs] exclude other people. I did have to get through that. Now I'm reasonably confident and I'm not in the least shy about saying, "What does that mean? I don't understand this." And I would want to be very fair to that Board – they quite deliberately appointed two of us to the Board so that I wasn't isolated and nor was my colleague; we were able to support each other. We did have little natters about, "Well I don't understand any of this; what do they mean?" and while there was, not very much in the way of induction there was plenty of opportunity to ask questions, to get support, to be guided through what I rapidly discovered was really quite sophisticated processes, and transactions that, that this network was involved in and which I needed to begin to understand. People were very pleasant and, and very patient, very happy to listen and to answer questions, so I have absolutely no complaints but it was quite a culture shock coming into that kind of environment.
 

It’s understandable that researchers find it hard to let other people question their plans, but they need to involve people much earlier.

It’s understandable that researchers find it hard to let other people question their plans, but they need to involve people much earlier.

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I can understand why it's not in researchers’ consciousness. If you're, you know, you have a bright idea about research and indeed that you're really committed to it, and all your training and the work that you've done yourself convinces you that this is the next great thing which you can do. The last thing you then want is a whole lot of amateurs coming on and telling you why it's not going to work terribly well or raising questions which you'd actually thought about and sorted in your own mind five years before, and this kind of thing. You know, I mean involving ordinary members of the public, warts and all, must be, at times, enormously inconvenient at the least and really disruptive and annoying. It probably takes an enormous change of mind-set for some academics, some clinicians, to start from a different perspective, which is 'what's this really about?' It's about the patient at the centre. It's about the, the needs of people individually and collectively at the heart of this. That's where I start from, and therefore I need to start by listening to them and finding out what's important. 

I think, so I think that really the answer to the question is that this is huge educational process and it's probably not something that many researchers, particularly in the natural sciences, actually come across until they’re well in to a research career. It may be a bit more familiar in some other areas, but I'm not even sure about that. So, I think, I think that one of the tasks that we really have to do is to work with researchers not just about the mechanism for involving patients, because I get quite a lot of that – I mean I do get, you know, invitations at, at the thirteenth hour of a research proposal to help find some patients to get involved in this because ‘we hadn't thought about it until now’ kind of thing, you know. We need to start, knock that on its head because, I mean if we're spending the best part of a billion pounds a year of public money on research that needs to start from the needs of individuals and the population. Patients and the public to be involved in that dialogue. 
 

It’s dangerous to assume you have a representative view by involving one person. It’s good practice to involve at least two.

It’s dangerous to assume you have a representative view by involving one person. It’s good practice to involve at least two.

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Unless you go in with a particular brief to represent a specific organisation, and clearly some people in PPI are doing just that, I mean, they may be there to represent a particular disease network, for example. With that exception none of us are representative. We all have a unique experience, a unique set of skills, a unique set of motivations for being involved in this. The, one thing that I would hope that we would offer would be, which is in common, would be a shared enthusiasm for the research effort and a shared concern to see it improve and develop and widen. So, beyond that, I think that each of us is different. I think the consequences of that are, well many really.

I get slightly worried, and again I see this when I'm reading research proposals, where researchers have assumed that because they've got one patient involved they have therefore got a representative view. I think that's always dangerous. I mean, I think it gives a researcher a misguided sense of the degree of patient involvement, and I think it puts the patient themselves in a very vulnerable position. 

INVOLVE guidance I think suggests that there should be at least two patients involved in any particular set in an organisation, research project, and whatever. And I think that's absolutely right and, in a sense, the more the merrier. You know, if you've got five patients in a room, you'll probably get ten different opinions in the course of a meeting, which is fine. I mean that's good, it's important to explore the parameters of any particular set of decisions and decision-making. It's then down to the people who are actually making the decisions, to make a decision, but, they need to be hearing, I think, as wide and diverse a set of users possible. So, we, we shouldn't be seen as representative, we simply represent a commitment to openness and accountability, and a conduit, perhaps, to a range of views, which the professionals, because of their education training, sense of purpose, direction, would not necessarily come up with themselves. 
 

There should be open recruitment processes to involve a broad range of people - it’s dangerous to assume you have a representative view by involving one person.

There should be open recruitment processes to involve a broad range of people - it’s dangerous to assume you have a representative view by involving one person.

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I get slightly worried, and again I see this when I'm reading research proposals, where researchers have assumed that because they've got one patient involved they have therefore got a representative view. I think that's always dangerous. I mean, I think it gives a researcher a misguided sense of the degree of patient involvement, and I think it puts the patient themselves in a very vulnerable position. 

INVOLVE guidance I think suggests that there should be at least two patients involved in any particular set in an organisation, research project, and whatever. And I think that's absolutely right and, in a sense, the more the merrier. You know, if you've got five patients in a room, you'll probably get ten different opinions in the course of a meeting, which is fine. I mean that's good, it's important to explore the parameters of any particular set of decisions and decision-making. It's then down to the people who are actually making the decisions, to make a decision, but, they need to be hearing, I think, as wide and diverse a set of users possible. So, we, we shouldn't be seen as representative, we simply represent a commitment to openness and accountability, and a conduit, perhaps, to a range of views, which the professionals, because of their education training, sense of purpose, direction, would not necessarily come up with themselves. 

I think there are a number of consequences that flow from that. One is to do, as I've said, with the whole process of recruitment and development, of PPI representatives and one of the things that we ought to be paying, I think, more attention to is the development and support of anybody that's involved as a PPI representative, as a PPI person and or as a lay member. I think the other side of this, is the training development of researchers themselves, in the use of PPI, and there's actually a lot of joint work, simply around their whole business of development, which could and should go on. And I think should be more proactive and better developed than it is at the moment. There's no shortage in information out there, but I'm not sure how well it's being communicated or how systematic the whole business of researcher development in the area of using PPI is. 
 

People can become professionalised and may stop being useful, but this doesn’t have to happen.

People can become professionalised and may stop being useful, but this doesn’t have to happen.

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I think there are two or three different issues there. One or two people have said to me, "Well of course people become professional PPIs," and you, there is probably a sort of trajectory – you, you start totally ignorant, and naïve, and asking lots of questions about very basic things because you don't understand how research is done, and you don't understand all the acronyms and the , the structures of, of the research community and so on. And you, you play a, you probably play a role there in terms of encouraging the community of researchers to think about what they're saying, the way they're saying it and making things accessible to the wider public. And that's probably very helpful and it is important. As you get more knowledgeable, you begin to slip into the same problems yourself, you know, you use, you know the acronyms, so that you use them. You know the language so you accept it, and you stop questioning it. You may be able to contribute more in terms of knowledge, but you're actually now becoming contaminated by your access and increasing knowledge. And then there may be, well be a point where actually you've become so embedded in the organisations and the ways of doing things that you cease to become useful, and you probably better go on and do something else with your spare time, and volunteer in something entirely different. So, yes, I think there is a kind of trajectory that possibly some of us go on in that respect. 

I don't think it's inevitable, and actually you are probably going to be, constantly refreshed and challenged by the, your communication with and access to new people, new PPI people, who are being recruited, and bring their own understanding and individual contribution. 
 

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.

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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. 
 

Andrew gets impatient with debates about what to call people who get involved, and sees ‘PPI’ as a generally accepted term.

Andrew gets impatient with debates about what to call people who get involved, and sees ‘PPI’ as a generally accepted term.

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I get a little bit impatient about the debate around language here. I will use PPI because it's a generally accepted term. I know that there are objections to it or some people will see it as restrictive or not, not properly comprehensive, that's also fine. Then I think it may be helpful to talk about patient involvement, where we're talking about people from particular disease and areas where they bring that particular perspective to things. I think it can also be helpful to talk about lay involvement where we're not assuming that someone comes with a particular set of health issues themselves, but represents this wider public accountability aspect to anything. But, probably the important thing is to have the debate and then pass quickly on to getting down to business and not getting too tied up over the language.
 

Publicly funded research must start from the needs of patients. Andrew worries that both organisational change and pressure to make money out of research may damage involvement.

Publicly funded research must start from the needs of patients. Andrew worries that both organisational change and pressure to make money out of research may damage involvement.

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So, I think that one of the tasks that we really have to do is to work with researchers not just about the mechanism for involving patients, because I get quite a lot of that – I mean I do get, you know, invitations at, at the thirteenth hour of a research proposal to help find some patients to get involved in this because ‘we hadn’t thought about it until now’ kind of thing, you know. We need to start, knock that on its head because, I mean if we’re spending the best part of a billion pounds a year of public money on research that needs to start from the needs of individuals and the population. Patients and the public to be involved in that dialogue. 

One of the real concerns at the present time is that the advent of academic health science networks and the reorganisation of clinical research networks might actually distance, this whole process from the actual health and social care needs of the population. Now actually, I think lay and patient and public involvement people involved in this can help to allay some of those concerns and can help to get it right. But, at a time of very significant change, and particularly when the research community is being told that the main driver for medical research is actually economic success, there’s, there’s a real concern that, you know, we might actually be taking a step back rather than step forward in terms of patient involvement. So there’s a lot of education to be done, a lot of lobbying and, upping the expectations about the role of patients in research. Otherwise we’ll simply go on supporting research, which may be economically a money-earner, but might actually not meet the needs of the population. I’m not saying that that is happening, but it is a danger that we need to constantly be guarding against, I think.
 

INVOLVE is a great organisation, but there’s a need for more independent patient activists to ask challenging questions about research policy.

INVOLVE is a great organisation, but there’s a need for more independent patient activists to ask challenging questions about research policy.

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INVOLVE is a great organisation I think, the information that comes out from it – publications are good. But, it is enormously reactive, I believe, and I actually think probably that PPI in this area needs something which is rather more proactive, and not sure where that’s coming from. At the moment, by and large, PPI deliberations , at the strategic and national level, are lead from within the organisation, either through the key staff in NIHR, or through INVOLVE. So, well that’s actually quite a, challenge for them I think. You know, lots of very good people with their heart in the right place, but at the end of the day their funders are NIHR and the Department of Health. And the independent charities, I mean look at Cancer Research UK or Age Concern or Age UK – all these other kind of organisations, where, independent leadership might come from. Surprisingly in my view, they’re not, terribly focused, around the research activity. They’re, you know something like Cancer Research UK, yes, it’s entirely wedded to research, but, it funds it, but, it’s not necessarily equipped to ask the key questions about effectiveness, of the way in which, government money and effort is being spent. So perhaps there’s a, there’s a need for active patients to begin to, lobby and become, more in the nature of activists in this area, I don’t know. Certainly been some interesting web based activity recently which shows that some of us are a bit worried but [laughs].
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