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Researchers' experiences of patient & public involvement

Reasons for involving patients and the public in research

In ‘Definition, purpose and values of patient and public involvement’ we described overarching principles of involvement. In this summary we look in more detail at the many different reasons why researchers were involving patients and the public in their work.

At its most basic level this could be because they knew they had to. National policy has increasingly encouraged involvement in research, and the NHS National Institute for Health Research, and some medical research charities and other funders, now require research grant applicants to explain how they have involved people in preparing the application and how they will involve people during the course of the study (or if not, why not). Ethics committees and grant funding panels commonly include lay reviewers – although as Felix commented, ‘I've heard from people that sit on these bodies they don’t have a single proposal that has been turned down based on the quality of the public involvement itself.’ Bernadette also commented that it’s mainly her scientific peers on funding panels that she needs to convince rather than lay representatives. As a basic science researcher it is harder to see where involvement fits.

 

Narinder recognises that funders now require patient involvement in grant applications. But people should take it seriously and not treat it as a ‘tick box thing’.

Narinder recognises that funders now require patient involvement in grant applications. But people should take it seriously and not treat it as a ‘tick box thing’.

Age at interview: 64
Sex: Male
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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 to 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. And so that can, that’s always the. Any researcher who is interested in finding out the truth about a condition, what the real nature of it is. And any researcher, especially a clinical researcher's involvement, and treatments, wants to get the very best treatment for their patients. So I think that if you, if those two things are there then one can't really argue.

…And so I think that, I think grant giving bodies see that as just a sensible way to ensure a high quality research. But there is an element where, you know it is maybe a reaction over the last three or four years to a general movement that patients must have a stronger voice in their treatment; in research, in whatever; in the whole areas of activity the public need to be, have stronger representation. I think this is one of the things about the last five/ten/fifteen years is that there; the voice of the public could be heard is now partly through technology is something which is much more there, much more in evidence.
[Sirens in background]  

So given that it's a requirement for funders…?

Yeah

Is there a danger that some researchers might just do kind of a tick box type?

Well I think that that’s it but I think the funders will probably be aware of that and I think that ; I think that they would often be quite specific in their requirements so there would have to be a panel, often a, you know the advisory panel would consist of three or four patient representatives. So I think it would be difficult for researchers just to get it off as a tick box sort of thing – yes I've done this; I've done that. And I think that, I think that if you have patients on an advisory panel or patients who are representatives, then by, then they may be very vociferous or they may not, so that maybe vary from one to the other. So I think it's, it'll be a bit difficult to just to avoid any significant involvement just by ticking some boxes.
 

Suzanne’s thinking on involvement has moved from doing it to satisfy an ethics committee to seeing it as a way to change the balance of power.

Suzanne’s thinking on involvement has moved from doing it to satisfy an ethics committee to seeing it as a way to change the balance of power.

Age at interview: 40
Sex: Female
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So can you tell me a little bit about how you came initially to involve people?

I think it's an interesting one isn’t it because I think its come much more on the agenda in maybe the last maybe ten years or so. And I think, I think it's been, it's been that kind of like, that sort of question on, you know, an ethics form and I'm sure we've all written these terrible responses to it saying, you know, "Oh yes and I talked to two people and whatever." But I think that kind of started me thinking about it. I think I was always kind of interested in, you know, 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 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. But I think that kind of attracted me I guess to kind of moving into this area because I was, I don’t know, slightly getting more uncomfortable that I was kind of going in and sort of talking to people about really, sometimes really sensitive issues. And 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.
 

Jim suggests your proposal will ‘sail through ethics’ if it has had meaningful patient input.

Jim suggests your proposal will ‘sail through ethics’ if it has had meaningful patient input.

Age at interview: 52
Sex: Male
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So, anything which means you’ve got more work to do could act against it, but equally that’s the cost that it might take a bit longer for each thing that you do and it might, yeah so it might take a bit longer; it might cost a bit more but ultimately, the benefit side of it is hopefully you'll be more successful. 

So, ethical approval, if you involve patients and the public, that’s not the reason for doing it but you'll sail through ethics as long as your study is well designed. 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. So yes, its swings and roundabouts, it really is.
 

Catherine thinks her colleagues only see involvement as important if it helps them get funding. She hopes to persuade them to see it a positive opportunity.

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Catherine thinks her colleagues only see involvement as important if it helps them get funding. She hopes to persuade them to see it a positive opportunity.

Age at interview: 29
Sex: Female
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So far I've met with people to do PPI to write grant applications, but we haven’t got as far as starting the research - although one of the grants has just started and I've got a PPI group together so I'm going to be meeting them from later this month onwards. But until now the only PPI that’s happened has been to write grant applications. So I think my colleagues haven’t had the chance yet to see how it can actually make a difference. So I think once I've started meeting this PPI group regularly throughout the year, I'm hoping that it will be more of “here’s how it can contribute”. Because I haven’t actually spoken really about PPI and what my colleagues think, their attitudes to what it is, so it's probably more hypothetical. This is me just telling you what I think their attitude is which might be unfair, but I think they see it as a box-ticking thing, and I think they think it's important, but only insofar as it's going to be important to get any funding to do it rather than because they think it can actually make a difference. And in fact for the PPI that I'm about to start, for this grant that’s now started, I've had people saying, "Oh just meet a couple of people". So I've put in the structure that we will have four to eight people who will meet three months, every three months. And I've had people say, "You don’t need to meet them that often," or, "Just invite them along to this, just get one or two". So I think they do see it that now we've got the funding we can, they don’t, I think they think we should do the minimum to get away with meeting the requirements of the funder rather than thinking it's an opportunity to do something.
 

Bernadette only started involving people because she had to. She’s unsure how useful it will be for lab research, but will give it a go. Sometimes change only happens if people are pushed into it.

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Bernadette only started involving people because she had to. She’s unsure how useful it will be for lab research, but will give it a go. Sometimes change only happens if people are pushed into it.

Age at interview: 39
Sex: Female
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So definitely, you know, to be honest what got me started is that you have to put it on the application form for funding. So, you know, and like a lot of things, it’s a bit like trying to get more women in higher positions. One of the ways to do that is to have a law or a rule to say that actually, you know, you have to have some women interviewing on interview panels for example. So sometimes you have to do the right thing through a route of being made to do it. Okay, so I think that’s my reasons for doing it. 

I think it’s good for the patients because it’s so frustrating for them. And again I'm thinking mostly about parents of children with these conditions. So you’re confronted with being told you don’t know what’s wrong, you know; “your child has a lifelong condition, but we don’t actually know what it is and there’s lots of complications”. So some of these, so for example, some of these will be associated with [disease name] and some are not. And always thinking that your child may get [disease name] and you don’t know, and it’s just horrible, and I think I want the patients to be, to feel they’re doing as much, the parents to feel that they’ve got an option; there’s something that they can do. I mean, you’re so powerless in front of disease, right? So I think that’s really helpful and really useful to them. 

I still have reservations about how useful it genuinely would be to me or to other researchers to involve patients. And again one of the things, you know, because I've got a basic science project, you know, why would patients’ views of what I study in the lab be useful? …We’ve got a limited amount of money and we need to make sure that’s put to the best use, etc. But we already have a very strict peer review system and therefore any proposal, I'm never going to get any money just because, you know, I sound nice or I'm convincing. No. The only way I’m going to get funding is if my research proposal makes sense to other researchers, to other successful researchers, people who are in, you know, positions of power because they’ve done very successful research. So I feel that that governance, if you want to call it that, is already there and adding a layer of seeing actually patients have to look at that and have an opinion about whether my research makes sense or that’s how we should be spending the money, I don’t think that's right. So yes that’s my difficulty with it.

Can you think of any ways in which you might be convinced otherwise?

Well, you know, if – I need to see the evidence for it, right? I’ll become convinced of it if I can see a project that went through the normal peer review process and had a layer of patient involvement and that made the project better.

I'm genuinely willing to give it a go. I wouldn't, if I felt that this was just a chore and it was not achieving anything I wouldn’t carry on doing it. I’m quite excited about it, and I’ll see what happens next week, you know, in ten days at our meeting, and we’ll see. I think we’ll see, but of course it’s going to be a drain on time.
But researchers we talked to described many other practical and philosophical reasons for involvement, including generating new research ideas; improved participant information; designing better interventions; making research easier and more acceptable for people taking part; more patient-centred data collection and outcomes; enriching data analysis; supporting dissemination of results; and avoiding wasteful or pointless research. (See also ‘Definition, purpose and values of patient and public involvement’ and ‘Researchers’ examples of the value and impact of involvement’).
 

Stuart describes how researchers and clinicians need to understand what outcomes are important to families of children with cerebral palsy and what interventions are acceptable.

Stuart describes how researchers and clinicians need to understand what outcomes are important to families of children with cerebral palsy and what interventions are acceptable.

Age at interview: 59
Sex: Male
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So in other words it’s no good at getting everything right after getting the clinicians to tell people to do the right thing because a lot of the time they aren’t going to do it and we would say that’s partly because we can’t give them the information they need in a way that makes sense to them to let them make the right decisions. Plus of course quite often the decision the clinicians think they should make aren’t right for them but that’s another story. What I’ll use as an example, we are really interested in children with cerebral palsy, one of the things that’s really makes life very difficult is if you have cerebral palsy affecting your legs it can increase the likelihood that your hips will dislocate and if your hips dislocate it’s very difficult to walk and it’s one of the major problems we have. So there’s been a big movement that if you diagnose cerebral palsy early in kids to try to get them to be, to put them to kind of sleep systems that hold the legs in a position that make it less likely we think that the hips will dislocate, that’s the theory, huge enthusiasm amongst many professionals. 

All the research, early research all the early discussion was focused on the question of hip dislocation, well of course the point is who is going to put the kid into the sleep system, it’s their parents. So then if you talk to the families as we’ve done they say yes okay we want to know because of course we care about hip dislocation but, you know, if you’re going to strap a child into something every night what do you actually want to know about. Well the truth is you want to know about pain because you don’t want to hurt your child and you want to know about sleep, does it stop them sleeping. 

And unless you do the research in a way that captures those things how on earth can you have a sensible discussion with the families. And so that’s again a long way of saying the simple thing and the simple thing is that we said when we bid for the CLAHRC that we would involve all these three groups in everything we did from the beginning in deciding what the questions were and shaping the way the questions were done and then in helping us decide what the implications were and how we would help people change. So we’ve been committed from the beginning the big crunch for us was that so when we made this bid we set aside about 10% of the grant for public engagement.
 

Good patient involvement has given Carl and the funder confidence that his trial will work and not be a waste of money.

Good patient involvement has given Carl and the funder confidence that his trial will work and not be a waste of money.

Age at interview: 46
Sex: Male
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Yeah, the key benefits I think is actually, is one of the things is, the project should look better. You know you should be able to say, "We've shaped this project with patients in mind." We're doing one at the moment which, you know we've shown it's feasible, because in our pilot and with our patients, we've worked to make the pilot feasible and pragmatic. It worked. And when we go to the funder for the bigger trial, we're going, "I thought we'd use all this; and actually we used all this to inform the design." And it's really nice when they come back and say, "Well actually it's exemplary what you’ve done in the PPI section." And we think, 'Yeah actually we feel much more confident we can use the NHS's or the NIHR's money in a cost effective way to do a trial that’s already shown to be feasible.' What we want to show is should we implement it now. And we'll continue to use the same group throughout the whole trial, and using that group then to think also if you're going through, 'Well if this is going to be effective how do we implement, where do we go?' is another benefit. So, yeah there are benefits in many areas.
 

Jen’s first experience of patient involvement helped her rescue a study that was failing to recruit. Involving people earlier would have saved 2 years of work.

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Jen’s first experience of patient involvement helped her rescue a study that was failing to recruit. Involving people earlier would have saved 2 years of work.

Age at interview: 29
Sex: Female
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Well that kind of initial participant involvement in the design, not of the experiment but of the study materials, came about after a study which I started running very unsuccessfully during my PhD. We needed to recruit 200 individuals for this study. We were recruiting from a finite number of individuals from a pre-existing dataset. So we sent out 600 invitations and this is back in 2011, 2012. And off the back of the 600 invitations, we received maybe 15/20 responses of which only five were positive, so a horrible positive recruitment rate. So we were racking our brains thinking what could be the problem… 

We were looking at our materials, we were thinking about the study, we were thinking maybe it’s because, you know, the participants we were inviting were older individuals… We thought that maybe people are worried that they are going to feel that we’re going to put pressure on them to, or look down on them for their smoking behaviour. And that’s not the point of the study at all. We’re just interested in defining smoking behaviour; we’re not interested in cessation, at the least in the context of this study, and we’re certainly not going to be judging anyone who comes in. So we thought kind of collectively that that was the issue, but to address it we decided that we were going to hold a focus group with a kind of a small selection of our participant pool. So we invited a number of these participants in to take part in a number of semi-structured one-to-one interviews. So before doing this we collated all of our invitation materials because this was really, this was what turned out to be the crux of the issue…

We asked for their initial responses and then we went through each section of the invitation letter and the information sheet step by step. And the first off-putting side was the title of the study; it was called Smoking Behaviour Study. They thought that made it sound a little bit like a dirty habit so we immediately as a result just retitled it Smoking Study. They said there was far too much information in the invitation letter. Time involvement also sounded too intense….

Other things that were pointed out as being off-putting were the use of this mystery device which again was described in the information sheet but we’d touched on it briefly in the invitation letter and people weren’t looking at the information sheet, so they just immediately, you know, put it to one side and decided they weren’t going to take part on that basis. There was too much text, it wasn’t clear exactly where the study was being run. So anyway, then we were moved onto the newly designed invitation materials. I mean these were a lot clearer, they had pictures of all the equipment we were going to be using which people immediately liked. The invitation letter was minimal. I think we never had more than one or two sentences per paragraph and a maximum of five paragraphs with lots of white space…

So that was really helpful for us. I think coming in from an academic starting point where you’re used to scientific writing and you’re used to writing for journals and not necessarily used to writing for a lay audience, you tend to err on the side of complexity rather than keeping things simple and to the point. And I realised in hindsight there was a lot of unnecessary description and overly complex words…

It was a really helpful experience and I wish that I had run something like this at the beginning of the study because it would have saved me two years’ worth of work.
 

John can’t think of any occasion in his experience where a patient has come up with a new research area but it’s useful if they endorse your ideas. That does not mean to say that he does not hope for such ideas in the future. Time will tell

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John can’t think of any occasion in his experience where a patient has come up with a new research area but it’s useful if they endorse your ideas. That does not mean to say that he does not hope for such ideas in the future. Time will tell

Age at interview: 59
Sex: Male
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With a patient group is, you’re just checking that what you think to be true, is true. The number of novel ideas that patients have generated for me to pursue, well I can’t think of one, and I regard myself as more active in terms of pursuing patients’ views on illness than most of my colleagues. I think that endorsement is a good thing to have… You say, ‘I’ve got this idea for some research’ and the patient says, ‘That’s a great idea’. Then you come up with the next idea and ‘Yeah, that’s a great idea’. There are not many ideas that doctors think are sensible that patients think are stupid, unless the doctor’s stupid.
 

For Tina, participatory action research is the best way to get people involved in defining their own research questions.

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For Tina, participatory action research is the best way to get people involved in defining their own research questions.

Age at interview: 56
Sex: Female
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But the other side of it is why are we doing research? I've always thought that I'm doing research to find something out that I didn’t know before. So if I start from my own knowledge on my own agenda, I'm only going to ask questions about what I know. So and on top of that we miss out the people whose lives are important in it. What do we know then? What have we learnt by doing our research? We've learnt what we know and what other people know about that, but not what the key issues are. So I think there is a massive methodological reason for doing participatory research. I'm not saying we should always do it – I absolutely see the value of randomised trials. I actually think they could do a more participatory approach to setting the question very often, and then we'd say whether we need that or that, and there's been some lovely research done by people who've done participatory research into setting question and changing the randomised control trial focus. But I see the benefit in all sorts of different types of research but, methodologically, I sit with participatory research because I think it is the most challenging form of research that gets below the common rhetoric and gets to things that you didn’t know before, and that’s what I want to do with research. And I also think, the third reason for doing it, it embeds the learning with the people that need to know. So if you have been in that process of researching with people and you are a staff member or a service user or a family member, you’ve been going through that challenging learning process as you’ve been researching. You can't then not know, you can't not know that, and it changes your thoughts and the ways you think about things and your practice. 
 

Involving users when reflecting on the data analysis helped give different perspectives.

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Involving users when reflecting on the data analysis helped give different perspectives.

Age at interview: 42
Sex: Female
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But in essence why I'm drawing on this example is because it mattered to me as principle investigator that it had slipped and I wanted to get it back on track. I think that we kind of reflected on what we hadn’t managed to do and pressed the reset button. So we recruited six people who wanted to get involved in the study and were interested in what we were doing in terms of understanding people's lives using a wellbeing network perspective.  

They got involved in the study and they advised us on various things and they helped us develop interview schedules and they looked at some of the data that was coming out of some of the work and, you know we had a whole series of programme and meetings, etc. And so they guided the study for eighteen months in various ways. And then at the end I thought, you know, 'This data's really complicated and we're really looking at trying to make our way through this data. I think what we need is a lived experience perspective into this.' So what we did is we recruited an external, very experienced researcher who works using their own experience of psychosis in the research process and we commissioned them to do an independent piece of work with the six people that had been involved with us. 

And what they did was interview all 6 of the PPI team about their experience of the project; she interviewed them about their recovery and then each of them read our four data chapters and they talked, as a group, about what they thought was interesting in the data; what it meant to them thinking about their own experiences of psychosis; what they would expect to see in the data, what was missing, what was there, what they thought it meant. It was, we did it quickly so that wasn’t ideal, it would have been much better to have a much longer process, but it was just so valuable. So they did the, they did an element of synthesis. And then the research team at the same time were doing further analysis too, and we put those together – we had a meeting together to discuss that. Their work is in our final report, the lived experience synthesis and I found it incredibly helpful and would definitely recommend doing it again.
 

Community meetings can help researchers think how to disseminate useful messages from their research more effectively.

Community meetings can help researchers think how to disseminate useful messages from their research more effectively.

Age at interview: 50
Sex: Female
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So I think that needs to be made possible for people to have some sort of voice. But it doesn’t replace face to face contact and by being cheaper and more efficient, what it should do is free up some resources to reach people, reach out to people who aren’t necessarily comfortable or able to participate virtually in our activities that we set up. So there is a place for community based meetings which have a very clear purpose, and, you know, those might be focus groups or there might be groups that are already existing that we, if you like, tap into for a particular purpose. So there're loads of groups going on out there for mothers and toddlers, mothers and babies – so what a brilliant opportunity for a researcher to go and talk to that group, you know, for ten minutes at the end or the beginning of their meetings and say, "That's what we've been doing, this is what we found – how does that sound to you? What do you think about it?"  It's not, you could be cynical and say, "Oh it's you know, it's like, it's no more than market research." 

On the other hand I think reflections from people outside academia and outside health services be really helpful in framing messages in such a way that, that they have more impact than in a way that we traditionally present our work. So I think that would be really helpful. And who knows, one or two people might become interested enough to join the platform and become part of more formal participation and involvement groups. It just develops the communities capacity to understand and respond to the importance of health research and health services - you know, maybe value them more, value their health and value preventative measures more. Because that’s, you know, prevention is a really difficult concept for a lot of people, not just minority ethnic groups, where there might be a much more limited history of prevention in health promotion. But, you know, lay understandings of health, you know, lagged behind a little of the scientific knowledge about what can be done to improve health and prevent illness; and promote well-being really. And I think that’s what we're after, helping people to thrive in their communities and their lives where they're comfortable. 
 

Tom argues that setting research questions which matter to patients helps avoid wasteful research.

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Tom argues that setting research questions which matter to patients helps avoid wasteful research.

Age at interview: 54
Sex: Male
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The benefits of it is that the Trust is seen by patient and carers and the people that work in the Trust as being to a greater extent interested in hearing the views of patients and carers but also putting them at the centre of everything that we do clinical work, service organisation and research. One of the Trust’s statements is that it does that, we put patients and carers at the centre of everything that we do. So it’s able to evidence that a little more. And by doing that I think the additional benefits to the Trust is that the quality of research that's carried out is, is greater because of the involvement of patient and carers and the direction that research takes is greater because of that. Or is better because of it.

And do you think research is made better by involvement?

Oh no question about it. There’s good evidence that a great deal of the money is wasted in research estimates made is that it might be as much as 85% of research money is wasted. I’m not sure I believe that. One of the reasons why research money might be wasted is choosing the wrong questions for research. Now if we have limited funds it’s very important that we choose the right questions and those questions must be those that are important to patients carers and family members and so on. So no point in choosing questions which are of no importance to them or there’s little point in choosing those questions or less point in choosing those questions. So yes of course it's, it’s very important.
 

Pharmaceutical companies drive a lot of research investment in new drugs. Involving people helps balance this with patient priorities for research.

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Pharmaceutical companies drive a lot of research investment in new drugs. Involving people helps balance this with patient priorities for research.

Age at interview: 39
Sex: Female
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You want to make sure that you’re putting the limited amount of money to the best use possible. And I think one of things that for me was most convincing about why we should involve patients in research – and I can’t remember who told me was one of these, you know, I had two or three talks maybe three of four – was the fact that, so if we let the drug companies drive a lot of the research then they will obviously be looking things that are most profitable and therefore they're always looking for drug treatments. And actually it’s easy to think that what we need is more drugs, and in some disorders you might not need more drugs. You might need better physiotherapy or better emotional support or whatever. And those things are also all important. And I think if you’re listening to a patient group – but again this is really for a big, you know, people with leukaemia people with diabetes or Alzheimer’s, you know – I think that’s really important to involve them and say, “Well, actually these are the areas that people want to focus on.” And I think it makes sense for the funders to say, “Well does this project fit with what these thousands of people want?” For rare diseases I think it’s a very different question.
Sometimes the reasons were less focused on a specific goal and more just about humanising the research – reminding researchers what matters, and helping them think differently, or ‘keeping their feet on the ground’ as Jim put it. Sergio felt this was especially important for young researchers with little experience of patient contact. For Kristin and others, the main reason was to change the balance of power. However, as Suzanne (and Bernadette above) pointed out, the setting can be important, and it may be more difficult to see how involvement can benefit basic lab science. Several researchers pointed out that you should be clear why you are involving people and what your expectations are (see also ‘Definition, purpose and values of patient and public involvement’ and ‘Measuring impact of involvement’).
 

Kristin wanted to involve children to change the balance of power between researchers and the people they research.

Kristin wanted to involve children to change the balance of power between researchers and the people they research.

Age at interview: 42
Sex: Female
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I think originally it was, and it still actually is, about who owns knowledge, who's in charge of the knowledge production and therefore biasing it in a certain direction. That, to me is like the core of it so, up until now it's been politicians and academics and I think that needs to be challenged. And so it's about the questions that you ask; topics that you choose; problems that you want to solve. In fact I just heard this morning about the Ebola, one of the scientists working on the treatment for Ebola, she was working for a charity in the US and she, you know the drug companies wouldn’t fund that because there's no commercial market for it but they did receive funding from the military and the state because I suppose in terms of aid and in terms of national security in certain countries, in certain regions it's important as we are seeing right now. And I think yeah that’s it. Whereas, you know in hard sciences you can get those back kind of funding. I mean we're talking, in her case, millions and millions of dollars. But in terms of social science and public health and education it's very hard to get funding that doesn’t subscribe to the kind of perceived order of truth. If you look at children, young people for example, their value is always as future citizens, productive citizens etc. etc. So research looking at what it's like to be a child here and now isn’t prioritising that framework. So yeah that’s what I where I was coming from.
 

Sergio thinks involvement can make small differences to how you do research, but more importantly it makes it more accessible and makes researchers aware of what matters to patients

Sergio thinks involvement can make small differences to how you do research, but more importantly it makes it more accessible and makes researchers aware of what matters to patients

Age at interview: 59
Sex: Male
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But as I said it's very unlikely that the difference is made on the actual scientific protocol because that’s not the remit. However, for instance when the Alzheimer's Society monitors come to vet our research, I have trained my PhD students working on that project to talk about their study in a way that people understand rather than pretending to understand the jargon in a five minutes conference talk. This is an incredible bonus. They have to answer questions about, "Sorry what is it that you do?" which is a bonus. The other aspect is that carers may add their own experience about the symptoms that you study from what they witnessed with the people they cared for. This doesn’t change your paradigm as such but it may add layers of understanding of what you're doing. Sometimes it reassures you that what you're doing is worth its while because they say, "Oh yeah this happened to me," and sometimes the way of the different aspects of your research might change according to the enthusiasm or the frowning you receive from them. And most of all it has been a pleasure.

And do you ever feedback to them that, you know, you made a difference to my research when you said this or?

We do, we send the formal forms, but also we develop a personal relationship and so they show interest, real or not, they show interest and we are very happy to share. It's gratifying. But as I say it's very rare that you change your scientific paradigm because that’s not the dynamic of this encounter; you change the scientific paradigm if a professional researcher, a statistician, whoever understands the paradigm and says, "Look its better if you change this." 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.
 

Patient involvement can make you think differently even if the impact is not huge. But Alison sometimes feels under pressure to be more positive about it than she feels. She says ‘about sixty percent I want to do it.’

Patient involvement can make you think differently even if the impact is not huge. But Alison sometimes feels under pressure to be more positive about it than she feels. She says ‘about sixty percent I want to do it.’

Age at interview: 47
Sex: Female
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The benefits – I guess that’s sort of, that broad reality check thing; so nice interesting people and a lot of the benefit comes not so much from the formal discussion about a particular piece of work they're involved in but a more general chat, insight into their life stuff which is maybe outside the direct scope of what we're looking at anyway – puts ideas into your head and you think, 'Mm.' 

And occasionally there have been cases where someone's picked up on something, you go, "Ooh yeah good point I forgot to take account of that in this thing I've just written or..." So yeah there are certainly some examples of those things but not that many to be honest. 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 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. 

Yeah so yeah I think don’t abandon it, that’s for sure for all my reservations.

And how much is it something that you want to do?

Mm about sixty percent I want to do it. The bits of me that don’t want to do it are the kind of, 'Oh god I've got to be polite to people when I’m not in the mood to be’ [laughs] – all that kind of stuff.  And this sense of oh I've got to, there’s a word for it.  When you're sort of smiling and endorsing one way of doing something and inside you're thinking, 'I know this is a waste of time,' or pretending something is true which isn’t, I feel really isn’t true and that’s, I'm giving you very mixed up response here aren’t I? But that, no on balance I think, 'Well kind of, it's a nice thing to do and it might make a bit of a difference but I don’t think it makes that much difference.' But the public message we have to sort of endorse and support is, 'it's terribly valuable and important and makes a massive difference.' So I think that to sort of disjunction between what I think inside and the kind of the public story, I feel uncomfortable with. So that’s one reason for, yeah the reason for my forty percent – oooh don’t make me do it.
 

Suzanne says you ‘forget how institutionalised you get’. Involvement is about more than just improving information leaflets. It can change your approach completely.

Suzanne says you ‘forget how institutionalised you get’. Involvement is about more than just improving information leaflets. It can change your approach completely.

Age at interview: 40
Sex: Female
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I think it depends on what's being researched. I think some things, kind of really early phase laboratory stuff, I think it's harder, would be harder to argue it in terms of funding and, you know other resources as well, personal resource. But I think, you know, anything kind of you know, sort of anything else really I think is kind of fair game to be honest. I think it really does, I think it gives insights that you just wouldn’t and you know, you forget how – I mean I've talked to a lot of people in my career but you kind of, you forget how kind of institutionalised you get as well. And actually you know, you, how you know, you occasionally lose your own real person-ness if you know what I mean? So I think it does add that and it does add the kind of – so it’s a different take on things but also an opportunity to make you think differently as well. So people say, "Oh there's a new insight," but actually it's what you do with that new insight as well, and I think if you're able to do something on the basis of that, then I think, I think that’s, you know, that’s great. And we sort of you know do it on a minor level when, you know, sort of with all the, you know testing questionnaires on people and, you know, information leaflets and stuff because you do perceive things differently but, you know it's taking it one step further for me to, you know think about actually how you approach the study overall as well. You know so there's that – that’s a definite benefit. 
 

Eric and Ceri discuss how just having patients in the room reminds everyone why they’re doing the research, as well as more practical things such as reviewing information leaflets.

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Eric and Ceri discuss how just having patients in the room reminds everyone why they’re doing the research, as well as more practical things such as reviewing information leaflets.

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Eric: There’s an important aspect that just by being there - there is a patient in the room, you know. They may not say something that records that focus, but that doesn’t mean that others aren’t able to reflect on that in that meeting - There is this sort of, you know - hard to say how that translates into decision making but’s it’s a back of the mind, it’s a subliminal.

Ceri: Well it’s not –it’s almost in the front of your mind, all the time that we’re talking about the topic of the study that we’re involved in at the moment, we have somebody who has quite a personal experience and would be affected by this very thing that we’re evaluating sitting right opposite us.

Eric: Yes.

Ceri: So it does keep that right at the front and the back of the mind. And I’ve heard a lot of people say that that just keeps them reminded all the time why we’re doing this research. And then the other thing having someone there is that you can suddenly point and turn to someone - I've heard you do exactly this - and say “What do you think about that? Should we do this or should we do that?”

Eric: Yeah.

Ceri: And that’s an opportunity we wouldn’t have if we hadn’t got one or two people with us in the meeting.

Eric: And also if we are, say, looking for input into particular aspects of the study, now those people who have had that context that background and experience of coming to the meetings and understanding how the project works - when it’s going to happen, the timetable or the methods - now they’ve got that extra information from the from the research side that can, you know, I think that is helpful when it comes to looking over some of the study documents that we might want them to review or input into. There’s also great potential, you know, challenge, which is why we try and share it with the wider [PPI] group as well particularly. You know, for instance information sheets. I know we’ve done that in the past, I had initial input from the two service users on the study but also then shared that with a wider group who can, you know, potentially benefit from not understanding much about the study which is the same position that the average person who receives a questionnaire for instance might be in.
Researchers might also have quite personal reasons for wanting to involve people. These included feeling that it was rewarding, enjoyable and made their work more meaningful and valuable (see also ‘Feelings about involvement and emotional impact’), but also that it was helping them acquire valuable skills for their academic career. Fiona said it was great fun and ’a very rich part of my life’, Sergio found it ‘elating’, and Marian described it as ‘positive reinforcement’. Valerie commented that some of her health economics and statistics colleagues love to come to her PPI group because they ‘really enjoy the contact time’. Alice and Alison described how involving people gave them confidence and reassurance they were going in the right direction.
 

Marian used to get a ‘real buzz’ she got from clinical contact with patients. Involving people in her research gives her some of the same ‘positive reinforcement’.

Marian used to get a ‘real buzz’ she got from clinical contact with patients. Involving people in her research gives her some of the same ‘positive reinforcement’.

Age at interview: 46
Sex: Female
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For me there are more benefits than challenges and I can see, you know, not just in my area, but because I work with grant panels I can see that the benefits that a lot of, you know, that a whole wide range of areas get from it. It's a difficult tightrope to walk because, you know, politically you can't say, "I think this is rubbish," or, "I don’t believe that."  But I mean from my point of view, we do get so much benefit from it. I get so much benefit from it just as I said, you know, for me it's that , you know, we, as a clinician you get a real buzz from having cured somebody you’ve, I don’t know, you’ve delivered a healthy baby where it might have died. You get that kind of buzz every day. As a researcher, our positive reinforcement occurs over a much, much, much longer scale and so I get, I get my tiny bit of that positive reinforcement from my PPI groups. And so, from that point of view, I don’t want to stop doing it because that’s the bit I get, you know, that can sustain me through the year. In fact now I've got two of them it only has to sustain me for six months so that’s good.
 

Involving people ‘makes you feel good about what you do’. Stuart finds it moving, enjoyable and useful.

Involving people ‘makes you feel good about what you do’. Stuart finds it moving, enjoyable and useful.

Age at interview: 59
Sex: Male
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I mean the answer is yeah I would say that, it makes you feel good about what you do. I mean I’m, I've been one of those fortunate people I come to work with a desire to come to work because it’s fun and I enjoy it but like many people I like to feel that what I do is useful and the more engagement I’ve had with members of the public the more A) the more fun it is but also more useful I feel the stuff we do is. Because I believe that we’re actually doing research that may make a difference one way or another and you know, you can’t feel better than that. 

And indeed I have to say that I spoke to you earlier about having had some of the members of our family faculty from, you know, [research unit] spontaneously talking at a, a meeting with trustees from the charity which moved me to tears because of the positive things that they said. And that makes you feel good about your life, yeah.
 

Involving people ‘makes doing the research far more fun’ and ‘makes it all very real and meaningful’.

Involving people ‘makes doing the research far more fun’ and ‘makes it all very real and meaningful’.

Age at interview: 48
Sex: Male
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I think for me, it makes doing the research far more fun. I mean fun's a huge part of the way we go about involving people - you know, people don’t come along to be glum. 

I think families like working with us because we try and make it a convivial environment; we have a good laugh and treat them as experts in their own lives and -

So I think there's a big impact for us, it makes it all very real and meaningful and, like I say, fun. 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.
 

Sarah A feels ‘passionate’ about involvement, but thinks some of her colleagues only view it as something fashionable that’s useful for her CV.

Sarah A feels ‘passionate’ about involvement, but thinks some of her colleagues only view it as something fashionable that’s useful for her CV.

Age at interview: 32
Sex: Female
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I think, I feel like because it's now something that I sort of, I would say I feel passionately about it and yet, not because I think it does automatically lead to better research but, because 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.  It's a hard one. As I said I'm lucky in that being on a Fellowship I have some freedom to kind of pursue things and it's still, it's fashionable enough that it's looked at well, OK carry on with it because it looks good on your CV you know – people like to see that; funders like to see that. I don’t think there is though the kind of support to do as much with it as I would like and to do sort of more thorough stuff with it. 
 

Alice feels involving people can help give you confidence about your research design. It’s also enjoyable and interesting.

Alice feels involving people can help give you confidence about your research design. It’s also enjoyable and interesting.

Age at interview: 26
Sex: Female
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OK so for me I suppose most of the benefit. Well I mentioned briefly a benefit of, you know, if I'm really; if there was something that I'm not sure, I didn’t really know what outcomes to focus on. Having a group of people where you know that they have experience and know what they're talking about. To be able to ask them “what do you think?” And that kind of thing. I think they really added a lot to the research, not every aspect of every project we had going on but where they could add it, they did. It was also, you know, really fun and really nice to be able to actually talk to people and, you know, chat with people and the meetings sometimes were difficult which I'll come on to in the costs. But, mostly it was a much more interesting part of the job rather than just sitting at your desk all the time, on your own and, you know, particularly in terms of having ideas for workshops and conferences – they were fantastic – some great ideas came from that parent group particularly for workshops actually where I would just probably do a presentation, you know. Even though I think that’s where my mind automatically goes, if you’re doing it we'll get PowerPoint out, you know. But they had a different perception or a, you know, a different viewpoint from what we could do. 
 

Involving people is gratifying and Felix feels it keeps him fresh. But he recognises ‘playing the user card’ gives him leverage within the power dynamics of academic life.

Involving people is gratifying and Felix feels it keeps him fresh. But he recognises ‘playing the user card’ gives him leverage within the power dynamics of academic life.

Age at interview: 36
Sex: Male
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But it's an inherently imbalanced relationship between the members of the public. Unless you say, "OK we've got members of the public, we want to generate research questions with them and then carry the process through from beginning to end." So, you know, I understand both, I really understand both sides of the coin and probably for me being in a position where I don’t have power because I'm a, you know, at the bottom of the chain within that academic pyramid. 

It's probably easier for me to feel solidarity with the members of the public, but I think there's also something about the ethos behind it. I think well it just, you know, I generally take a lot of gratification from working with, you know, working with people that are not the academic tribe because I struggle to identify with what that means to be in this academic tribe. So I think it keeps it, you know, for me it keeps it on a really personal level, really fresh and... And but also, you know, I guess and it once, should I ever be in a position of power, I will feel the strain of, you know, the competing interest that you're dealing with and the timelines and all those barriers that have been identified in all these reviews and literatures. It's then harder to do but I would probably make a decision to do it well or not at all if I was in a position of power. But there's another dynamic with that as well and I, you know, I could, you know, very honest about that it, than that gives me almost leverage and I think there's another behaviour we identify, you know, playing the user card. 

You kind of, you know, within those power dynamics, you know, you can be an advocate for the public involvement side and... So I think I probably have engaged in that kind of behaviour which is again, you know, in a way disempowering to the public involvement because it's not really about the facts or the truths or the, you know, the kind of knowledge you want to produce or in fact the project ends, but it's more about the dynamics of power within research projects. And that’s probably, you know, that’s probably a negative behaviour and that might create negative impacts between people and projects and I happily, you know, I happily admit that I've been culpable of that behaviour so.
While many positive reasons for involving people were identified, some researchers were critical of the assumption that it was always a good thing, and described pressure to do it because it was ‘trendy’, ‘fashionable’ and ‘politically correct’. Whilst it may be true that researchers are usually in a more powerful position than patients and the public, researchers can also feel disempowered and vulnerable. A number of our participants were very worried about preserving their anonymity and not being seen to say anything openly critical; a few withdrew their interview from the study, and of course others with more sceptical views may have chosen not to take part at all. 

Anne reflected: ‘PPI is held up as this thing, as a shining beacon we must aspire to. It is essentially seen as a hundred percent positive; there is nothing bad about it… Why are we not critiquing the bad things about it?’

One person said he didn’t need patients to tell him what could be improved, and ‘the only reason I actually have a patient group for those sort of issues is that they are often a better political  weapon than me going to hospital management and saying these things’.
 

Anne feels frustrated that involvement is so ‘trendy’ and you can’t criticise it. To be a good researcher takes years of training.

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Anne feels frustrated that involvement is so ‘trendy’ and you can’t criticise it. To be a good researcher takes years of training.

Age at interview: 32
Sex: Female
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It's a nightmare. It's a complete nightmare because I've got to be really careful as to what I say and do. And as well like PPI's really trendy at the minute and I'm not saying it hasn’t got a place, but it's not considered very PC if you fundamental – you know like, it's like, "Oh brave new world." Patients should be like co-applicants on bids – actually I do agree with that in some respects, but patients should be co-applicants on bids; patients should be researchers – why don’t we just [effing] bring a load of patients to come and sit round my desk? Why did I bother doing a PhD? Do you know what I mean? So it's like really difficult because these people are quite capable people, but they’ve not had the training, they’ve not worked as a researcher. You know everyone knows that to be a researcher you’ve got to cut your teeth, you’ve got to do at least three degrees: you’ve got to do an under-graduate, masters and PhD. You’ve got to, you know, you cut your teeth in your first research assistantship where you're closely monitored and evaluated. And then at the opposite end of the spectrum they just want to bring in these people who've got nothing to do with anything and let them loose on our study – ill patients at the bedside. It's really difficult for me so I've got to kind of be really careful how I manage it.

PPI is held up as this thing, as a shining beacon we must aspire to. It is essentially seen as a hundred percent positive; there is nothing bad about it. You know, that’s what it's seen as. And it's like why are we not critiquing the bad things about it? That’s, and I think your research might hopefully draw out some of these things that shows that it's not always this amazing thing and why are we not critiquing it more, essentially.
In addition to researchers’ own reasons for wanting to involve people, several mentioned reasons why individual patients or members of the public might want to get involved, including enjoyment and satisfaction; learning more about their condition; aiding their recovery; gaining new skills and confidence and improving their employment prospects; and wanting to improve care for people in future. Felix suggested that work they had done locally showed that the benefits of involvement were more about its impact on the individuals involved than on the research. Valerie commented that knowing how individuals benefited from getting involved was something ‘profound and moving’ to her. These are topics are explored in more detail in our Healthtalk website on individuals' - Experiences of patient and public involvement

See also ‘Definition, purpose and values of patient and public involvement’, ‘Researchers’ examples of value and impact of involvement’ and ‘Feelings about involvement and emotional impact’.

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