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Researchers' experiences of patient & public involvement

'Representativeness' and diversity of people who get involved

A common concern in patient and public involvement is about what type of person gets involved, how many of them are involved, and how far they can be said to ‘represent’ other people and patients. Many researchers argued strongly that involvement was not about having a representative sample (see below), but the use of the term ‘patient representative’ is common and can be misleading. For some researchers it remains a worry.

Concerns raised in interviews included making changes to research based on the views of only a minority of atypical people; the idea that a meeting might be dominated by a someone ‘with an axe to grind’ or those who ‘shout the loudest’; and that people who volunteer for research involvement may be more interested and engaged in their own health than a typical research participant might be.

 

How far you need to worry about whether people are ‘representative’ depends on what you’re trying to do – sometimes it’s really important.

How far you need to worry about whether people are ‘representative’ depends on what you’re trying to do – sometimes it’s really important.

Age at interview: 54
Sex: Female
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So the practicalities of putting that into practice are pretty challenging, but it will very much vary according to what it is that you’re trying to do. So if you’re the James Lind Alliance and wanting to involve stakeholders in a priority setting process then you would probably think about representatives from different interested parties. But if you’ve got a very fast deadline and you want some members of the public to take a look at your lay summary to see if it’s okay then you’re probably not going to go to the extent of worrying about if people are representative. So it kind of varies according to context which sounds like a cop out really. But I think it’s important to consider there’s this idea of the usual suspects and whether that’s tokenistic. And I think actually thinking about it that’s why, although when I did the evaluation study it appeared that we got very simplistic research questions about who gets involved, there was a theoretical underpinning that informed that very simple question. So we were able to show that who got involved, they were representative, if you like, of people that lived within a ten mile radius that were available for ten day time meetings and so on. So yeah so again these, you know, the, the ways of putting these complex theories into practice are pretty challenging and not to be dismissed lightly, but not to be ignored either I feel.
 

Diversity of opinion matters so having just one patient involved is ‘dangerous’, argues John.

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Diversity of opinion matters so having just one patient involved is ‘dangerous’, argues John.

Age at interview: 59
Sex: Male
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I think it’s very dangerous to have one patient representative. I think you actually do need three or four from different backgrounds that can offer diversity and checks and balances on each other. Because I think some of them do come out with extreme suggestions and that may or may not be helpful. It may sort of tie the hands of the doctors and nurses round the table, who say, ‘Well, you know, this was the odd view from this individual patient but he’s our only representative and therefore we’re sort of stuck with it’, as opposed to three or four patients who would then offer us checks and balances and diversity of opinion. 

And it is that diversity which is important. If we think that there is a monoculture of opinion out there, then we don’t understand the problem.

And one of the criticisms that’s levelled at involvement is one about representation. And do you think that you need to have a representative set of people who get involved?

Well I think that you can make it so difficult that it doesn’t happen. So I think that you have to be pragmatic. I think the key thing is to have diversity and maybe a combination of gender, ethnic and age. Age is the big one. Making sure that your patient representatives are not all 45-year-old executives, I think is key. So I would say the one big discrimination is age. 

I think the patients are better on the sort of generic issues of saying well, you know, ‘From your perspective with your illness, what do you see as the main problems?’ They will tend to revert to their personal experience and that’s why it’s important to have more than one opinion there because different people will have different experiences. Some patients will put an emphasis on symptoms, some people will put the emphasis on ‘What’s going to happen to me and this illness?’ And other people will be ‘What’s my prognosis?’ Different things matter to different people. 
 

Jen points out that you need the advice of people who reflect the target group of your research.

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Jen points out that you need the advice of people who reflect the target group of your research.

Age at interview: 29
Sex: Female
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I think it’s important to involve individuals across the breadth of your recruitment pool, otherwise you’re going to be limiting yourself to opinions that perhaps are just representative of a sub-group and I don’t think that’s necessarily very healthy. If you’re basing your redesign of materials and methods just on a subset of a population, then that’s probably the population that you’re going to end up recruiting from, and that’s going to introduce some level of bias into your sample, and bias is not good at any time.
The question of how to tap into wider perspectives was a common theme, with mixed views on whether voluntary organisations or patient groups could help. Some felt this could be a useful strategy, but others felt it was more important to hear the lived experience of individuals. In some cases people talked about individuals who get involved going out and canvassing views from a wider group, but as Carl pointed out ‘that would be a lot of work’ to expect from one person.
 

Narinder sums up the benefits of wider consultation through support groups as well as the value of individual perspectives.

Narinder sums up the benefits of wider consultation through support groups as well as the value of individual perspectives.

Age at interview: 64
Sex: Male
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Well I think obviously when I'm talking about representative I meant maybe a patient's spouse and maybe they're representative of the patient. But yes, but you're right. If you have one or two patients on a panel say, an advisory panel for a research study, a clinical research study, then the issue rises how do you know that those two patients are representative and this is just, this is just a general issue. And I think to some extent that if you have a, say a representative from an organisation – so for example say for Alzheimer's disease – somebody from the Alzheimer's disease society, 

They would have been speaking to lots of patients in theory and so they should be able to voice the concerns or the views of lots of patients in theory. But and that’s not the same thing as having a patient themselves obviously. So it may be useful to have both a patient who's actually been through the illness condition in question, plus maybe a representative from a patient organisation who's been speaking to lots and lots of patients and can give a more consensus view because you may have an individual patient who has got very strong views for/against something in the study and that may not be representative of all the patients. And, as I said you may have patients on the panel who lack insight or have communication problems or may have personality problems secondary to the brain, say its brain damage. So there are all these issues which unfortunately are there. And to that extent if you have a representative from a patient organisation provided that representative themselves wasn’t, you know didn’t have major you know, communication or memory or other problems, then that might be one way around it.

Yeah. You said there that you could have; what you said – a person representing a patient organisation.

Yeah

And you said that that’s not the same as having a patient.

Yeah

Why's that not the same?

Well it's because obviously if you have say a representative who's never experienced the illness then obviously they’ve talked to lots of patients who have that illness then they'd get consensus views sort of thing. But I think the patient themselves will have had the, all the distress of the illness and been through traumas; been through treatments; been through diagnoses, investigations and they’ll know exactly the pain and the. And so there's always that balance between the individual who's been through it all and has got quite vivid and often very distressing memories on the one hand; and then on the other hand somebody who's maybe talked to lots and lots of patients and can give you a broader view.
 

In Marian’s experience it is usually easier to get ‘a balanced view’ when you have lots of individuals in the room rather than people representing a support group.

In Marian’s experience it is usually easier to get ‘a balanced view’ when you have lots of individuals in the room rather than people representing a support group.

Age at interview: 46
Sex: Female
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And I come back every year really energised by the meeting but very interestingly, over the four years, the number of, again it's a challenge thinking about the nature – so the number of women who've had the experience who've been attending, has fallen off; whereas the members who continued to attend are the representatives of the voluntary organisations, who've not necessarily had these experiences themselves, but have worked obviously closely with women who have had experiences like that. 

And perhaps that changing balance has led to some of the difficulties. So at the last meeting I had we were discussing one of the research projects and the outputs of one of the research projects and the interpretation of that research project. And I vividly remember we were around an oval table; there was the members on one side of the table and the members on the other side of the table who had opposing political views, you can imagine - caesarean section delivery choice and normal birth – very contentious areas. So one particular group were very keen on caesarean by choice; the other group were very keen on encouraging all women to have normal birth and access to normal birth. 

And so very interesting sort of chairing that I had to do between these opposing views as to how we should interpret the research results. So yeah interestingly difficult to balance those views. And I think actually that – and its one thing that, in terms of PPI that I can't quite decide what's best. There probably isn’t an answer, but it's, when we had a lot of women who'd had the experience themselves, in the room, it was easier almost to get a balanced view than when it's organisational representatives. And I guess that’s a difficulty I have – I sit on a number of grant panels and one of our public members, because I'm on an NIHR panel, that’s what we now call them, is very – she is, her opinion is very firmly that organisational PPI members do not represent the PPI view and that there should always be, for want of a better word, a true public member. And I can see where she's coming from I think. 

On the other hand, as I mentioned some of the work we do with parents who have been bereaved, and we work incredibly closely with SANDS - which is the Stillbirth And Neonatal Death charity – and actually they, as an organisation, I feel do represent the views and they’ve got a vast experience of talking with parents who've been bereaved. I mean in fact one of the SANDS members we work with most closely is herself a bereaved parent, so in many ways she brings both things. Now that type of person is really rare and so I think that’s – and one of the other difficulties of PPI in general, you know, it's voluntary. You mentioned the issue of payment that we do have to think about. But payment is all very well, but if you're in a job it's not just payment, it's you have to take leave from your job and so actually I guess the type of people who can volunteer to help with PPI for projects for grant panels is limited by who is going to be able to get time off work. And I think that’s something that we're going to have to solve with employers if we're going to get PPI, the best PPI we can. And maybe if one can be recognised to take unpaid leave with the balance of the payment to PPI members then maybe that’s one way round I guess. 
 

Eric and Ceri reflect on the challenges of wanting to bring lived experience to the table, yet expecting people to ‘de-personalise’ it and take a wider view.

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Eric and Ceri reflect on the challenges of wanting to bring lived experience to the table, yet expecting people to ‘de-personalise’ it and take a wider view.

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Ceri: I think the really big challenge is we, we the research committee says they want public members to contribute their experience to bring a different perspective and they use the word experience. As, and they also would describe their experiences and experience and expertise, that’s another thing, we use the word expertise to describe their experience. And there’s, I think there’s a real challenge in translating that expertise into something which makes a real contribution to the research there’s a, there’s a translation problem so people will talk about their personal experiences and sometimes they’ll be able to make the step to talk about it in a wider context so to draw lessons from that and how that might apply in the research and to de-personalise it. But even if you can do that it’s another step I think to, to turning it into some, some currency, the currency that the research process needs. I don’t know I’ve heard researchers talk about the need for training and people do get trained and they don’t, I’m not sure what difference it makes. I’ve heard people talk about picking people for different tasks but then you’ve got the question of what, how do you select, how do you select people out and are only certain people able to do certain things. And then is it the individual or is it the actual service user, what sort of identity is this person that you want you’re guessing. Is the service user, is it a service user role in which case what are the skills that you need for it and is there a formal recruitment process or is it just that hands on, that first person that authentic experience with all the weaknesses that an ordinary person brings to the process but adds the authenticity is it that that you want. I find, I struggle with all that.

Eric: Yeah a massive challenge of, you know, who are the right people and for what tasks and to what extent should we say, for instance should we say two people be involved through the life course of the project which could be we’re talking academic project.

Ceri: Years.

Eric: Four years for instance the project I’m working on to date so we have had a couple of changes over time. Whereas the whole of the rest of the study team is the same but that’s just an observation. Yes in deeds of, in terms of what characteristics we look for it and how you recruit, you know, should there be some sort of desirable and essential criteria for people.

Ceri: Because everybody else around the table’s been recruited.

Eric: That’s right.

Ceri: The recruiting process that goes on and the training process. and if we were to apply similar approaches to recruiting our public members then do we risk taking away their, the thing which it is that we want them to bring, that authenticity, that other world experience, the very fact that they’re not schooled in all things that we’re schooled in and which means that we forget our personal experiences when we walk through the door as researchers.
The need to work towards greater diversity in involvement was generally acknowledged by researchers we talked to, and we explore this further below. But at the same time, many argued that diversity was not the same as representativeness, that people who get involved cannot be expected to be ‘representative’ and that looking for a representative PPI sample misses the point. Sarah A said she prefers not to describe people as ‘patient representatives’ for this reason. Adam reflected that, ‘I really have learned a lot from the two people I’ve been working with in detail.’
 

Jo does not get hung up on issues of representation. It’s good to involve lots of people, but anyone’s experience can be valuable.

Jo does not get hung up on issues of representation. It’s good to involve lots of people, but anyone’s experience can be valuable.

Age at interview: 50
Sex: Female
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I don’t, I don’t think, I don’t get too hung about it, I think you can get yourself really tied up in knots worrying about how representative people are. People come with their own lived experience and I think you should value that wherever it’s come from. some people I come across will say I’m only here to represent myself because that’s the only person I can represent, other people come and say no I’m representing other people as well as myself. and I think there’s always an element when you’ve been around, I think what I’m always struck by actually is if you spend time around people, for example my experience of depression we may come from very different walks of life we’ve had very different experiences you know in a kind of working life and our social lives. 

But actually around our illness there’s an awful lot of commonality of experience. You know, and we’ve experienced the same trials and tribulations and issues with accessing therapy and problems with therapy and they may be slightly different because we’re all individuals and experience depression differently but, but actually there’s a lot of, I’m always struck by how common the experiences are. And I think so it really doesn’t matter who you are or where you come from, and you don’t lose that experience. I mean I was an academic at the same time that I was a patient with quite a severe mental illness and I see the two in me in some ways as quite separate because I wouldn’t want to relive that experience of illness and all the issues with, I mean that’s one of the treasons that I got involved was I didn’t want people to experience what I’d experienced. And I think that experience will always stay with me as, as that lived experience and I’m not really sure that it’s particularly covered by who, who I was in terms of being an academic. 

I don’t get hung up on it too much. I think we should value, if people are coming with genuine experiences and we should just value them whatever and not worry too much. You can’t represent every single person, every single past experiences, the same situation differently and everyone interprets the same situation differently so we can only hope to, I think the more people we can involve the better, you know, the biggest spread of people we can involve the better and I think that’s one of the roles of having Patient Involvements Groups they’re the perfect, the perfect people to go out talk to each other and talk to other people and get them involved. But I don’t think we should ever stop trying to involve more and more people but I don’t think we should ever kind of be dismissive of people’s experiences.
 

Alison just doesn’t worry about whether people are ‘representative’ or whether they might become ‘professionalised’. In research about emergency care she feels anyone could get involved.

Alison just doesn’t worry about whether people are ‘representative’ or whether they might become ‘professionalised’. In research about emergency care she feels anyone could get involved.

Age at interview: 47
Sex: Female
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To be honest I don’t get too hung up on that because I just think they're not there to represent other people and they can't you know. And I think particularly when you're dealing with emergency care, because it's, it's sort of everyone and no-one you know. There's, any of us could be carted off in an ambulance today, you never know but – well actually you do get some people who phone ambulances once a week but it's not like people who have been living with COPD for years and know all about medication – it's a different kind of issue.

So to have any kind of almost randomly selected person is as good as any other randomly person I think. And I think if you start to worry about whether people are legitimately speaking on behalf of others then yeah, you just, you get into a very tangled web there. I guess if you were like doing a study of diabetes or something, I don’t know, something that people were living with and you had a, like lay representative who was also secretary of the local branch of Diabetes UK, and was able to say, "Oh I've asked around the Club and they’ve said this, that and the other," that might be useful.

But on the other hand that person. Yeah there's the other debate there isn’t there which is connected, which is about whether people become insiders because they have too much expertise and all the rest of it. And I think that’s a kind of false dichotomy because people are always a little bit of each you know. And just because someone starts to know more about the technicalities of the healthcare system or about the research process and all the rest of it doesn’t actually mean they're no longer living with that long term condition or having that experience as a person, a body. Yeah so that’s one I just don’t worry about really.
 

Catherine isn’t a ‘representative researcher’ so why expect lay people involved in research to be representative?

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Catherine isn’t a ‘representative researcher’ so why expect lay people involved in research to be representative?

Age at interview: 29
Sex: Female
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I don’t think you'd ever expect them to be representative because I'm not a representative researcher, like the GPs that I told you about we've got – how do we know that they're typical GPs being involved? I don’t think you ever - it's not important, as a person who's managing or collaborating with researchers, to be representative. But maybe you want to try and have a range of people, so as I was saying before, I wouldn’t want all well-educated, middle class people – I'd want to think more to try and get a range of different people. So I think – yeah it's important to think about but I think it's a bit of a . You wouldn’t, you're not, like I said you're not using, they're not participants are they? They're collaborating with you to on leading the research then so they're not participants and even if, so I don’t think their representativeness is a valid kind of – well it is valid to talk about but I don’t think it's an important thing to make sure that they're representative . That’s never going to happen if one or two of three or four people…
 

It’s ‘unrealistic and unfair’ to expect individuals to be any more representative than clinicians and researchers. Sabi is worried by tokenistic approaches.

It’s ‘unrealistic and unfair’ to expect individuals to be any more representative than clinicians and researchers. Sabi is worried by tokenistic approaches.

Age at interview: 50
Sex: Female
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I think it'll only work if people believe that their, the involvement of patients and the public will have a positive impact on their study and if they are clear about how that involvement will have an impact. If they have woolly ideas about, well you know, if I've got a couple of people sitting on the steering group they will represent the patient body or carers in general, or the members of the public in general – that’s not going to work because it's too woolly, it's too diffuse. And what a terrible burden to place on these two poor people who are sitting in that room, they can only ever represent themselves, they can only ever talk about their own experience or vicariously about the experience of other people. So putting that burden on them I think is really unrealistic and unfair. I think, you know, researchers have to think that through and you know, yeah the issue of representation is a hugely contested thing, you know, because you know the clinicians and the researchers aren’t representative of any population so why should, why should patient representatives be so…

So that’s my role at the moment really leading, leading PPI and helping other people to think constructively about PPI to avoid this horrible tokenism cycle, you know, where people don’t believe it's going to work. But they have to do it so they do something to ostensibly show that, you know, they are, they are involving patients but it is in a very ineffectual, unhelpful way which leads to no impact, no difference and then that whole idea about PPI actually being the Emperor's new clothes is reinforced. So it's an attitude of mind – needs to be supported by high quality resources and good practical advice. As I say it's about creativity and thinking about your project and how patients can be heard and there might be a myriad of ways in which that can happen.
 

Getting a representative sample for involvement is spurious. Gail says it’s about including different voices and valuing different types of knowledge.

Getting a representative sample for involvement is spurious. Gail says it’s about including different voices and valuing different types of knowledge.

Age at interview: 42
Sex: Female
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I think each research question demands a different view and the idea of being wholly representative by bringing individuals or even a group of individuals into a project I think is probably a little bit spurious. I don’t know. I’m a qualitative researcher so you’re asking completely the wrong person about representation I suppose. I think more in terms of experiences and narrative and diversity and distilling the themes from that. So know we didn’t make sure we had X number of men, X number of women, X number of, you know – it was more about choice. And, you know, I guess if you think about the right to be involved and we said to, you know, we approached several different groups of young people and whoever wanted to be involved more than welcome. So yeah representation wasn’t an issue for us actually. 

We, I guess that side we did want some level of experience of a long term health condition, either personally or through lived experience in another way – either a family member or something like that. Did we rigorously kind of ask people about that? Not really we kind of just said look this, these are the kind of experiences we’re wondering if young people have in coming along to the group and they pretty much then self-selected from, from then. So no, I think again if you think about the theory behind why you’re involving people and the concept, you know, and if it is about different voices and the value of different types of knowledge, factual academic knowledge, you know, and lived narrative experience, then you can make sure you get a little bit of whatever you need. And in terms of factual knowledge, you know, when you bring a management group together you don’t bring together the perfect representative management group ever do you? You kind of cobble it together and hope for the best and kind of go with it and bring in different people as you need to. And that’s the scientists. So why would we then put different parameters on young people coming in. So I guess the answer is if it was about did we consider representative samples? No, we didn’t [laughter].
 

It’s good to involve a range of people but you can’t represent everybody. Sometimes you risk ending up with too many people and it becomes inefficient.

It’s good to involve a range of people but you can’t represent everybody. Sometimes you risk ending up with too many people and it becomes inefficient.

Age at interview: 49
Sex: Male
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And I think probably going back in time that was a little bit what it used to be previously. It was a sort of dumbing down of their role in some ways because they couldn’t be representative, because they didn’t have sufficient knowledge. I think that would be a mistake. Of course you're not going to be able to get everybody. Well the interesting question is, do you apply a sort of methodology to it and you end up having a representative sample of the population that you're interested in to come on the PPI? Now, the advantages of that are of course you end up with better representation; the validity of the whole model works well. The downside, and I've already seen this with the James Lind, is that the process becomes even more protracted and your law of diminishing returns probably comes in. You have to decide how far you want to go to. And I am cautious about that. I think there is a danger of going too far. So, at some stage we have to make this process a bit more efficient. James Lind, for example, can be a set of six/seven meetings of sort of filtering this down, which is great and it's good for learning, but I think there's some places in it where we can compress.
There was some feeling that lack of representativeness is used as an excuse not to do PPI – because you will only ever get a small number of opinions – and that it risks confusing PPI with research, where the need for a representative sample may be essential for some studies. 

Nonetheless, researchers did agree it was important to find ways to broaden the range of people, experiences and opinions feeding into research, and they often acknowledged this was a struggle. Valerie, for example, explained she was ‘squirming a bit’ as she reflected on how far they still had to go in involving a diverse group, and said, ‘I think really we should maybe think about this a bit more.’ Sarah A pointed out that ‘the white, middle class, retired PPI partners that I work with all say that as well. They acknowledge that this is a problem and they really want to do something about it as well.’ 

This is an issue with many dimensions, including the age, social class, ethnicity and educational level of those involved. There was general support for the idea of finding more creative ways to involve people beyond inviting one or two people onto a traditional committee, and recognition that it may be more helpful to see people as ‘seldom heard’ or ‘easily ignored’ rather than ‘hard to reach’, placing the responsibility back with the researcher – as Stuart said, ‘I loathe the phrase - it’s not hard to reach… it’s our problem, not their problem.’ (See also ‘Finding people to involve in research’). 

At the same time, several difficulties were discussed, including time and cost, geographical limitations (particularly working in an area with low ethnic diversity), and wanting to continue to allow people to self-select.
 

In Chris’s area there is little ethnic diversity. They have tried to overcome barriers to involvement, but its ‘imperfect’ and they don’t monitor people’s backgrounds.

In Chris’s area there is little ethnic diversity. They have tried to overcome barriers to involvement, but its ‘imperfect’ and they don’t monitor people’s backgrounds.

Age at interview: 48
Sex: Male
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Well I would think most of those there will be people in certain socio-economic situations who would find it more difficult to know about us and, or for us to know about them, and then depending on what's going on in their lives to actually come and spend time hanging out with us. [place name]’s not got the same ethnic diversity as some other parts of the country so we, you know, would not sort of profess to be, you know, I’m trying to think of the right way of expressing it really, you know. There isn’t the ethnic diversity down here that there would be in some other parts of the country and that is what it is. So, and we're involving. The statistics would estimate that one in twenty children have additional health needs and I think the estimate would be about eleven thousand children in [place name] and we've got a couple of hundred families on our email lists and I would say that about fifty parents a year come to our meetings. And there's a hard core group of ten to fifteen who come to quite a lot of our meetings. 

So to even pretend that those ten to fifteen are representative of eleven thousands families I think would be ridiculous. For me that’s not the representativeness, whilst very important if you're looking at specific research questions that relate to people in very specific circumstances, then it would be really important to seek them out. But to us, this is, you know, this is doing it in a way that enables some families to do it and be involved as partners with us and we acknowledge that that’s not representative and imperfect in some respects. But it really had an impact on what we do and the people that have been involved with us and us so it is what it is. Some might call it tokenistic, I don’t know. It still feels very worthwhile.

Mm

If, as I say, imperfect.

And why do you think some might call what you do tokenistic?

Well just, you know, I was really mirroring your opening question which was about is it representative; are there people that aren’t included because of an obvious question – you might say, "Are you involving certain groups of people?” and, you know, they're the people that have power anyway but I think we do try it to overcome those barriers but . And I think we have enabled a cross-section of people to be involved with us. But we don’t monitor that in any, in any way; we don’t seek to measure the characteristics of the people that come by looking at their deprivation in the area where they live or how much, you know, anything about them in that way really. We don’t monitor ethnic diversity or any of those characteristics. I think we involve them because they're coming to give us time and, you know, we're on a journey together whoever we are.
 

It’s important to try to widen opportunities for involvement, but in the end you can’t make people get involved; it has to be their choice.

It’s important to try to widen opportunities for involvement, but in the end you can’t make people get involved; it has to be their choice.

Age at interview: 26
Sex: Female
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Well to a certain extent you can't choose who comes to you and you are, you are offering an opportunity and people will or will not volunteer so you can try to reach the hard to reach people; you can tell people about it. But really I think possibly a certain type of person wants to get involved in this kind of thing and you can't make people come to you. If it was, if you were collecting data from them you'd have to be a lot more concerned about whether or not you had a representative sample. But I think in a PPI sense you can only offer people the opportunity and it's up to them to get involved. The most of the people who are involved in the PPI I did were white, British, middle class – pretty much ninety nine per cent of people were. And it was really unrepresentative but we are in Devon so most people, that’s the demographic here anyway, it's very, very different to other parts of the country. 

And I really take your point that how can a group of sometimes fewer than ten people make a decision based on for something like that and kind of speak for everybody else. But I don’t know, I kind of feel like because it's not, you know, it's not evidence, you're not collecting data. Not - it doesn’t matter, but you just have to bear it in mind and acknowledge it as a limitation you can't overcome. You know if it was a study you'd, try other things, you know you might keep recruiting until you met the, you know, till you had the numbers that you needed to say it was representative but because that isn’t the case I think there's not a lot you can do about it other than acknowledge it as a limitation of what you are doing.
 

Hayley’s young people’s group see themselves as quite diverse, but they are mainly white. But deliberately targeting people from different ethnic groups might feel tokenistic.

Hayley’s young people’s group see themselves as quite diverse, but they are mainly white. But deliberately targeting people from different ethnic groups might feel tokenistic.

Age at interview: 30
Sex: Female
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I had a question from a researcher actually because I do some training. And as part of our course we did some training with some researchers from outside the centre. I had a question about the diversity in the group and they were saying from the film it looks like the group is very white and there's not that many people from ethnic minorities or other cultures. And I suppose, on reflection, I thought to myself, 'Well yeah actually.' I suppose this is something where young people kind of select themselves and the people who select themselves are mainly from sort of white Welsh, white British background. And when I've spoken to the young people about diversity it's interesting how they say that they're completely, that they feel that they are a very diverse group and I've said, "Alright then how are you diverse?" Just trying to get their idea of diversity and they said, "Oh well so and so's really into this music and is a ‘this type’ of young person, and so and so's not. These young people really like; some of them like to do like exercise and activities; these young people don’t." So they see themselves as diverse in a different way so what we would think of diversity, which I have found really interesting, because I thought, 'Yeah I suppose you are.’ And as a group they don’t, they don’t think, 'Oh we're just young people' – they see each other very differently which I think is something we don’t, maybe as adults, think. 

We would, if you met the group you might think, 'Oh they're not a very diverse group,' and then I can think, 'Oh yeah they are.' And even things like they say, "Oh we're into different things; we're into different types of music; we're into different types of fashion, where we are representative because young people are different on these ways as well." So that’s been interesting.

That’s very interesting because there are sort of sub-cultures that are very important to young people.

To them

That don’t necessarily concern us as adults.

Yeah

Which is really interesting. And in terms of the ethnic diversity, and so I mean have you tried to recruit people from ethnic minority backgrounds in particular or?

Not in particular no. Because we do our recruitment through youth services and it goes out to sort of youth projects and youth development programmes, it's kind of the young people are self-selecting themselves. I think it may be good for us to try maybe to, but I wouldn’t want young people to think that we're recruiting them because they're, because we want to make the group more diverse. And that again can be quite a contentious issue for me because I think if they're interested as young people then they’ll put themselves forward. What I wouldn’t want a young people to feel is we've targeted your group because we want someone from your culture or someone from your ethnic background to be part of the group because then we're more diverse. So yeah I think it's something that maybe we should think about a little bit more.
 

Valerie’s parent group is diverse in some ways but not others. She sometimes feels it’s too convenient to say the aim is not to be representative; researchers could do more targeted recruitment.

Valerie’s parent group is diverse in some ways but not others. She sometimes feels it’s too convenient to say the aim is not to be representative; researchers could do more targeted recruitment.

Age at interview: 39
Sex: Female
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I don’t think you're ever trying to be representative really. I think you're doing, I think if you can offer the opportunity to as many people in the group that you are targeting as is possible, is humanly possible, which in itself can be challenging because using parents as an example, you tend to get very proactive parents that go to groups that are in places where you might access them. So even providing that opportunity to parents is already going down the selective route. But I don’t think you could ever, we don’t argue whether you even need or need to try to be representative. What you're trying to do is give people a voice and as many people as voice as you can and if they don’t for many valid - and trying to take away - You can identify lots of barriers for people and if you can provide for those as best you can. So childcare for example is an immediate barrier isn’t it? A lot of people are at work so we have tried to offer evening meetings, you know. But you can only do what you can do and I certainly think, you know, one person's opinion to throw into the mixing pot of everybody around the table is better than no person's view. Obviously it would be better if you can have more involvement than that but.

…We do go to parent meetings and we do distribute our information around but we probably don’t, you know, we have never, we don’t go, "Right come on we're going to go and target these really low income families who are all single parents and living in this particular area of [place name] where we know this to be an issue," yeah – we don’t do that, yeah [laughs]. And there probably isn’t really a good reason why not other than it's convenient. We have a ready-made sample and, you know, the easy argument is we're not trying to be representative, we're not trying, but it's a convenient argument I would say. And you can make all kinds of comments about who does and doesn’t have the capacity to come to meetings or get involved but we don’t actively try.

…I would say we, in terms of, so, in terms of socio-economic backgrounds I would say we have a reasonable mix.

We have absolutely no mix in terms of ethnic diversity at all - that’s not true, that’s not true. We have one or two families that come to meetings that are not white British and probably a few more that come to the Family Fun Day, not massive, it's not massive. Obviously we check the disability box [laughs]. But yeah you can tell, you can tell by the fact that I'm squirming a bit and I think really we should maybe think about this a bit more.
The question of how far lived experience matters was a common theme. Most researchers we talked to felt it was very important for their projects, perhaps not surprisingly given that most were working on research into specific conditions. They recognised it depended on the kind of insights and perspectives you were looking for. Alison (see above), for example, said for emergency care research, “Any of us could be carted off in an ambulance today, you never know… So to have any kind of almost randomly selected person is as good as any other.’ In some cases such as funding boards or research ethics committees the input will also be more generic than in single research projects.
 

Both patients and members of the public can contribute, depending on the topic. Sarah A is annoyed when people dismiss PPI as ‘just one person’s opinion’, though diversity is important.

Both patients and members of the public can contribute, depending on the topic. Sarah A is annoyed when people dismiss PPI as ‘just one person’s opinion’, though diversity is important.

Age at interview: 32
Sex: Female
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You appoint sort of the person with the appropriate skills and knowledge or interests and I think a lot of what we do is with patients, because we're looking at sort of health services and illness experience. And so it tends to be people who've had that illness or who have experienced that treatment who then come along and, you know, want to talk about it. And, you know, sometimes don’t like the treatment they're given so feel like they want to come and have input into what should be done. 

But as, I think the idea of having ‘just’ a member of the public, I think that is really useful because in the broader sense of, as I said, being able to explain what we're spending the public's money on and have members of the public agree with that, then yes they should be. They don’t have to of had specific sort of experiences and illness, and I think that is important to get a sense of, sort of, the diversity of experience patients can have. You know, there's the classic thing they often, you know, there's perhaps just one PPI member who gets involved and it always really frustrates me when people will, you know, they’ll only budget to have one PPI member on a project and then they’ll say, "But the problem is it's just one person's opinion," and you think, 'Well there was a simple way round that wasn’t there at the start?' - Sort of numerically speaking. 

So I think, you know, yeah I do think there's a role for members of the public and I suppose I could think of a lady who attends our group who hasn’t had a specific condition as such, or a treatment, I don’t think she'd define herself as a patient. But she'd just define herself as well, you know, I am, if you're a member of the public in the UK you use the NHS; you are a patient in some sense and so you can still bring, you know, experience and insights into that. So, yeah.

And the other thing you touched on there was the issue of representativeness.

Mm

What do you think about that in a debate?

I do think that’s an important debate. I think, you know, there's the beyond usual suspects…

Hm mm 

…kind of argument and I think that is important. I think you go to PPI group meetings and it is predominantly kind of white, middle class, retired. So I think there is an issue of how we reach out to the easily ignored sections of the population and service users who might not typically get involved in this kind of work. I suppose having said that, part of me always worries again that it's another way of devaluing the contribution that those people make. I think if you're saying, for example, that I want to talk to a group about their experience of depression, then I think if you get people who talk to you about the experience and you go, "Oh but I'm not going to listen to it because you're not actually my target group." 

In a way that’s your fault, you know, you should have gone out there and tried to recruit to that target. But I also did think you shouldn’t devalue the experiences of anyone if it's, you know, if its experiential knowledge as we say, then their experience is as legitimate whoever they are. So that’s my worry, that’s I think, I get, I worry about that argument, as I say, because I think it can be used to, to devalue what people are saying. But I think, you know, everyone who works in PPI needs to kind of acknowledge that we do have a problem with lack of representation and to think about how it is that we get people involved in PPI because there's obviously a lot of people we're missing, or we're not reaching, or we're putting them off somehow. And I think we should be asking ourselves those questions, definitely. But I suppose what I'd say is that, you know, the white, middle class, retired PPI partners that I work with all say that as well. You know, so they acknowledge that this is a problem and they really want to do something about it as well, so.
 

It’s important to involve a wide range of people who can give useful insights, not just ‘professional patients’, though they have a lot to offer. Representativeness is a red herring.

It’s important to involve a wide range of people who can give useful insights, not just ‘professional patients’, though they have a lot to offer. Representativeness is a red herring.

Age at interview: 59
Sex: Male
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As I was saying I have seen people describe themselves as professional patients, you know, professional public involvement and it doesn’t mean that they were useless but that just that you didn’t want only people like that who have become completely involved. And that can both happen on very formal national committee structures because you get people who bring, you know, considerable expertise from the public but also have great expertise and they’re valuable. It can also happen with some patient organisations where people effectively become professional patient organisation people. and they have a role but what you need is a whole range of different sorts of people, so sometimes what you want is you just want a way of talking to someone who has never had any involvement whereas other times you want someone, you know say for instance we’ve done a lot of work on these very rare conditions called Lysosomal Storage Disorders and the patient organisations are fabulous they know more about Lysosomal Storage Disorders than I do, much, much more and they’re being really, really helpful. But that’s not the only kind of public involvement you want. I mean the one thing I would say is that, slightly controversially, perhaps is that sometimes there’s this debate about representativeness and to be honest I think it’s a red herring, you know, because you’re not trying to run a democratic process of representativeness what you’re trying to do is to try and make sense of research questions that may be helpful in clinical decision making. And for me it’s not about trying to run a democracy in which everybody has a vote I’m trying to work out what’s going to be most helpful in making sense of something so you do research that is then useful and you can get a bit a precious about anything yes.
 

Sarah B explains the importance of direct experience; as a researcher or professional you may try to imagine what something feels like, but until it happens to you, you have no idea.

Sarah B explains the importance of direct experience; as a researcher or professional you may try to imagine what something feels like, but until it happens to you, you have no idea.

Age at interview: 51
Sex: Female
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I rather think it depends on what you’re looking at. Because I suspect that if you're looking other areas of health that there may well be people who have allied experiences or expectations of services that they would like to share and that might be quite valuable, even if they haven’t actually used the service themselves. My experience of personal experience of parenthood tells me that if I was to try and do the same research with people who are not yet parents, they wouldn’t be able to give me the same level of detailed support because they’ve not yet lived as a parent, they don’t know what life is like as a parent. And so I would say, in my circumstances, no, I wouldn’t go there because I think you imagine, as a non-parent, you imagine what it would be like to be a parent. I tried really hard, as a children's nurse, before I had my son, to imagine what it would be like to be a parent of a sick child. I tried really hard to imagine it. Within, you know, within a day, within less than that, within a few hours of having my son, I realised how far away I was in my imagination from the emotional bond I felt with my son. 

I was lucky I felt that emotional bond with my son very, very, early; very quickly within the first few hours, and it doesn’t happen for everyone, but for me it did and I could see straight away just how far away my imagination had been from the reality of being a parent and that emotional bond you feel to your child. And as a consequence I don’t think you can ask people to hypothesise about a situation they’ve never been in because the reality is when you're actually in it, you may respond completely differently. 
 

There is an issue about whether parents or carers can give enough insight. Sarah B would like to see children involved more directly.

There is an issue about whether parents or carers can give enough insight. Sarah B would like to see children involved more directly.

Age at interview: 51
Sex: Female
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If I was doing research with the older age group, then I would want to ask children's views on involving children, and I think that brings in a whole other area of difficulty, you know, predominantly being access to children and getting parental consent and all those. I think one of the biggest challenges for researching with children as partners is about the gate-keepers. It's about the fact that you have to have approval at so many different layers before you can actually give the child the offer of participating. It can be done, however - I mean I went to the research in child health network local meeting down in [place name] and they had a presenter who was talking about children's participation in interviewing candidates for children's nursing - so it's not for research. But it was still really interesting because of the way in which they'd gone about it. Well, some people have used, you know, they’ve captured a video of children talking about their experiences of what they might want from a children's nurse, or children in a video asking questions that they'd like to ask the candidate and then showing that to candidates on an iPad – that type of thing. But in this instance they have actually chosen to involve the children face to face with the candidates. So they had recruited small panels of children who would come in and sit as a panel of three or four kids asking questions of each candidate, and I thought that was fabulous, because it gave those kids a real opportunity to influence, you know, to have a say on the qualities of the people they wanted. And I’d like to see the same kind of thing in a research perspective. I mean within the university here we have a centre for childhood and youth and they have used some young researchers – I haven’t been involved unfortunately – but it's something I would be interested to get more involved in. 

I think it gets easier when you get into the teenage years. I think it's that bit between five and eleven – the primary school years – where the challenge is greatest because it's also where people are most protective, and it's hard to get through the gate-keepers.

I think our local health services, the hospital Trusts, don’t seem to have any particular system for enabling children who use their services to – apart from filling in a piece of paper and putting it in a slot or, you know, tapping a screen to express their views – they don’t have a group of children who they could go to, to discuss ideas. Because actually getting people to do a passive response is not the same thing, you know, it really isn’t the same thing. Whereas at the county council level they’ve got something called the children and young people's partnership shadow board which is constructed of young people, but they are young people, they're not kids. So again I think you have the same sort of issues around how do you engage younger children in a way that’s meaningful for them, and useful, to services or to research? But I think it's quite a challenge.
 

Tina questions why we don’t involve children and people with learning difficulties directly in research, rather than asking their family or professionals. It’s a matter of social justice.

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Tina questions why we don’t involve children and people with learning difficulties directly in research, rather than asking their family or professionals. It’s a matter of social justice.

Age at interview: 56
Sex: Female
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I think the outcome of working in that participatory way is massive and it's massive on a number of levels. And for me, it starts off – there's a social justice element to it, there definitely is. I mean, for years people with learning difficulties were never asked about their own lives and they still aren't very often. So we'd ask their mothers and their fathers or their doctors, but we never asked them and honestly it's their lives – why did we not do that? But actually you can see that perpetuated in other kinds of research. We don’t ask the people, children are the same. I mean it's much better now in the last twenty years. Children – everybody asks children what they think but years before they weren't even asked. So there is a social justice, the voice of people because if your voice is never heard then decisions are made that don’t include your perspective and you become even more alienated. And the inclusive research agenda for people with learning disabilities has been enormously influential I think. But it's not just people with learning difficulties and getting people's voices heard, so there's that whole social justice element of it. If you're not heard you don’t have any power, so it's a kind of power thing.
On the other hand, Anne queried how useful generic lay input is, and Marian wondered whether the public view on funding panels is almost over-represented.
 

Involving people with particular experiences has been useful, but Anne questions what insight members of the public bring compared to any other member of the research team.

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Involving people with particular experiences has been useful, but Anne questions what insight members of the public bring compared to any other member of the research team.

Age at interview: 32
Sex: Female
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I think they can be really useful when it's a very specific topic or disease. So like say, right, I was researching [people’s experiences], but I’ve never had those experiences. So you know it's really useful to have someone to advise me on that and someone especially who was in that position, as this woman was, but has now come through the recovery process and can advise us on what it's like to be doing that. Equally, I've never had [name of condition] and I don’t know what it's like. So those patient reps were really, really useful in that project. But at the minute the project I'm working on, because it's such a generic area of medicine - they could be you, could be me, and the discussion that we have in a research team quite often is that I've got experience of health care, you’ve got experience of health care – why, these people who were just randomly advertised for and interviewed and brought in, why is their random health experience any more important than mine or yours or my colleagues’? 

You know, we're all users of the NHS so it's a tricky one really. I think when it's disease or topic specific that’s really useful. When I don’t have specific experience of that, but when it's just generic experience of the NHS, well I've got that, everyone's got that, so it doesn’t really make sense to me in some respects.
 

Marian is concerned that the lay perspective on grant funding bodies seems almost over-represented.

Marian is concerned that the lay perspective on grant funding bodies seems almost over-represented.

Age at interview: 46
Sex: Female
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I mean in general, I have to say, I am very positive. I quite clearly get very different aspects from it but it's not without its challenges.

…I guess my, perhaps where I struggle with PPI the most is relating to grant applications and sitting on grant panels. So I do sit on several grant panels all of which have PPI members and I think that’s really important. But it is very interesting dynamically around the table. I don’t again, I don’t know whether it's right or not but, the public members, their voices are stronger than the professional members. So if a public member expresses an opinion, and you do have to remember it is always just their opinion. So although there will always be at least two, and probably three public members on the panel, it is only one individual's opinion whereas I guess – so it seems to have more sway. 

Now I guess there are professional people on grant panels who are not afraid to give their opinions and maybe it's just the Boards I've been on. You know maybe there are some that are swayed by different individuals and maybe I'm just being over-sensitive because it's PPI, I don’t know, I don’t know. But I haven’t resolved in my head what the best way to get the best contribution in terms of reviewing applications is.
One point raised by Anne was that researchers and clinicians also have experience of using the NHS, and sometimes of specific conditions. Several researchers pointed out that both professionals and patients have multiple identities, but there was disagreement over how far it was right for researchers to bring in their own experience, or even disclose it. Generally researchers we talked to felt researcher experience should only be shared carefully and should not count as involvement, but sometimes the double insight could prove useful. (See also ‘Feelings about involvement and emotional consequences’).
 

Felix recognises we all wear many hats, but it can be uncomfortable blurring user/researcher boundaries. Credibility to represent others is complex and contested.

Felix recognises we all wear many hats, but it can be uncomfortable blurring user/researcher boundaries. Credibility to represent others is complex and contested.

Age at interview: 36
Sex: Male
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I think there's an issue about identities isn’t it and what kind of hats you wear. You know the principal investigator hat, the service user hat and it's, and I think that’s also an ongoing source of; because, you know, because you are, so you're a service user, what does. You know you're a person that uses services first of all, you know, so that’s one aspect of you as a person. But in this formulaic academic enterprise we kind of put people into slots and give them; and ideally to not make it too complex we want them to wear one hat not plenty of hats so I think it's probably, you know, also informed by my own experience as a service user. But then does that, you know, and then, but that’s always, you know, that’s almost dangerous, you know, to say, also to admit to, you know, as well in a way to not appear to be weak in this really competitive academic environment but - But I also want to entail that to a wider because everyone experiences suffering. You know it's, that’s a universal component so I think it's almost an artificial role expectation that we are creating in these project environments because even the professor or, you know, everyone has experienced some degree of suffering so, you know, that isn’t anything really unique but on the other side that’s a source of the credibility and the knowledge base that we attach to a service user. So it's a really complex mix of things going on there isn’t there of those, you know, competing, conflicting identities. 

And I suppose we then do end up with intellectually reflective people, middle class that mainly do this kind of work and collaborate together which is very much, you know, within the academic paradigm, you know, of what it means to achieve and not to achieve I guess, yeah. I'm not sure if that makes sense but it is very complex about the identities and the mix of them and from what you speak and it goes, you know, it goes into the debate about representativeness doesn’t it? You know, are you then, so you know, are you then allowed to make claims for other people or your peers that also use services? And what's the unique contribution, you know, it's kind of the double bind thing, you know, that means you're a bit, it's a bit too critical what you're saying; it's probably not representative of the wider population because I don’t like what you're saying. 
 

Jim acts as both a lay member and a research manager and has no difficulty ‘switching hats’. Many lay people also bring useful professional and other expertise.

Jim acts as both a lay member and a research manager and has no difficulty ‘switching hats’. Many lay people also bring useful professional and other expertise.

Age at interview: 52
Sex: Male
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Yeah, yeah, yeah it's quite interesting. So, if I think about the NIHR evaluations and studies, you know NETSCC as it's called, Patient and Public Involvement Reference Group, I'm there as a lay member. But it's, it's working on a; it's a research programme and I've got experience of being on the other side of the table and being a research manager. But, in what we do with the reference group I find it very easy to sort of wear my lay hat. So, whilst, and it's the way it works. So, everybody uses a mixture of their lived experience, whatever that happens to be, and their professional background whatever that happens to be. So, for some patients and public who get involved in something they have a professional background in finance or building or something like that, which may have some relevance to what they're doing, and then they have their lived; their health or social care lived experience and the two interact. And then research is something they may or may not know much about but they offer a perspective from their lived experience of understanding what it's like to be on the receiving end of either treatment or research. That’s how that, the lived experience bit works. So, but actually understanding the process with which you're working. So, because I understand what NETSCC does and how to manage and fund research and monitor it and evaluate it, it means that I can, you know I understand what they do and I can then see ways in which. It just, it feels to me, as it's relatively easy to work our way that my lived experience and the way other people's lived experience can make a contribution to that. So, I don’t look at it and think, 'Well if I was managing that how would I manage that differently?' I'd just park that and just say, "Well this is the way they do it and there's no right or wrong way to do any of these things." But I look at it, well that’s the way they’ve chosen to do it so, you know back to my three questions – you know what, as a lay person, could I do; would I have the skills to do it and would it make a difference? And that’s, I find that relatively straight forward to do and I think probably most people do in a way. I don’t get tempted to tell them how to manage a research project. I occasionally get asked a question, "What would you do?" but only if it's a direct question. But I wouldn’t, I wouldn’t have the temerity to suggest that they managed their work in a different way; it's just the way they do it and actually you're then going to become a nuisance if you start telling people how to do their jobs even if you might have a reasonable background to know how to do that, it's just unhelpful. Doesn’t mean that people don’t try to do that from time to time but you know I think. I do find the kind of switching hats relatively straight forward.
 

Sometimes someone who can give both a professional and personal perspective is useful.

Sometimes someone who can give both a professional and personal perspective is useful.

Age at interview: 49
Sex: Male
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One usually, occasionally two. Yeah, difficult. Remember there's some hybrids as well in there. These are interesting individuals where you’ve got somebody who reflects a professional opinion, but it also has been a patient. Some of the studies that we've used, for instance the shoulder one, CSAW shoulder arthroscopy, we had our ethicist who was very important to this placebo study, and also had the same problem, and had his shoulder done by one of the surgeons here. So, he had a dual role. I think it works but I wonder which way they gravitate patient or professional. Should you keep them separate? I don’t know, that’s an conundrum, I don’t think I've got an answer to that, but it's worth thinking about. Is the hybrid individual good? You're tempted to do it because it's very efficient, they can serve two purposes. You lack something, but you gain something as well.

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