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Researchers' experiences of patient & public involvement

Long-term involvement and ‘professionalisation’

A long-running debate is whether people who get involved in research long term lose their fresh ‘outsider’ perspective and become too ‘professionalised’. The worry is that people get so used to the research environment and research jargon that they lose their distance and ability to challenge, and may become too cosy with researchers. But it can also be argued that people who get involved longer term become more effective at challenging, because they gain knowledge, confidence and skills. This is closely linked to the question of providing training for people who get involved (see ‘Training needs for involvement’).

We asked researchers what they thought about this topic. In the accounts of those researchers who were most worried about professionalisation, words such as ‘tamed’, ‘acculturated’, ‘socialised’, ‘schooled’, ‘tainted’, ‘going native’, ‘usual suspect’ and ‘loss of authenticity’ were used to describe the problem. One person talked about some families who get involved in their research becoming ‘expert families’ and commented that ‘I was going to call them “repeat offenders”.’

 

Current PPI practices, such as holding meetings in university settings, may lead people to be socialised into research culture.

Current PPI practices, such as holding meetings in university settings, may lead people to be socialised into research culture.

Age at interview: 50
Sex: Female
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So one of the dangers of the high intensity type PPI is – and by that I mean people who are serving on committees in quite formal roles – is that they become socialised to the world of the healthcare professional and the academic because they come to the University for their meetings and they take part in meetings that are, you know, research and clinical practice focused. So from a socialisation point of view, you know, they will, it's a quite natural thing to do, they will adjust to that world rather than bringing their world and experience into that environment. I think it would be less likely to happen if meetings were held in community settings

Where the researchers and clinicians were guests. But, you know, as you said that’s not practised very often and it's potentially quite intimidating and threatening to researchers and clinicians, which is interesting because that’s exactly what they do, do to patients and members of the public when they ask them to, you know, to come to formal meetings. And so in that environment it's very easy for people to, what used to be called 'going native' in, you know, in the world of anthropology and ethnography; that people adapt to their new environment so well that they start to want to fit in so much that they do not challenge the views of their colleagues in the meeting and they're less likely to be able to convey the lay perspective. And I think that is increased by training that focuses on research, research methods because it professionalises the lay person even though, you know, they might not have any formal, they won't have any, any formal qualifications in that. Although, some training programmes are very keen to equip lay people with research skills to enable them to do research, and I think that is fine as an activity – that is great – you know, I would really support that but they are, they're not patient and public involvement advisors, they become community researchers or lay researchers. But that’s not PPI, and I think it's really important to distinguish between that. 

If you ‘train people up’, as it's called, then you know you are turning them into a version of professional researcher because you are equipping them with that skill, with those skills. I don’t think that’s PPI and so I'm very worried about people whose role it is to be PPI representatives or PPI advisors on those formal research steering groups; should bring with them that other perspective, that independent perspective, their outside perspective and I think that is silenced if people become too professionalised. If they become PPI experts, if they become formally trained in research I don’t think that’s helpful. I think it's a great thing in and of itself to develop individual people and their skills in what they want to do, but it is not PPI. I suppose that’s where I think the dangers are in providing formalised training.
Many could see both sides of the argument and did not feel there was a simple answer.
 

Jo can see the risk that people become ‘professional lay people’, but at the same time said people’s health experiences remain ‘very raw and very real’.

Jo can see the risk that people become ‘professional lay people’, but at the same time said people’s health experiences remain ‘very raw and very real’.

Age at interview: 50
Sex: Female
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Yeah I know I don’t think you do. I can see in some circumstances I think there are some, you know, there are some lay roles which people are kind of formally interviewed for and I think that’s kind of a slightly different process and a different type of involvement and I think having those sort of professional lay people does worry me slightly I mean we don’t tend to do that sort of involvement ours is much more open involvement. But the thing, I can only speak from my own personal experience and from other people I know that I’ve worked with who have also been patients or carers and come into research and I think all of us would say that our, our lived experience remains very raw and very real and actually a part of you that, you know, did the fact that I know how to run an RCT or to do academic research is irrelevant really because, you know, I lived through those experiences and I know what it’s like to live with severe mental health conditions day in day out and to struggle to go to work and to be, so I don’t know I really, really don’t.
 

Ideally it’s good to have a mix of people with involvement experience and people who can bring some fresh perspectives.

Ideally it’s good to have a mix of people with involvement experience and people who can bring some fresh perspectives.

Age at interview: 49
Sex: Male
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Yeah well what do you want? In an ideal place, and I'm just thinking off the top of my head. In an ideal PPI experience you'd have a combination of those individuals. It would be lovely to have the naïve ones, but it would also be nice to have those long in the tooth who have been through it before. And we have some great examples, because it does take a bit of getting used to and some of the more recent projects that we've set up and I've been involved in, we have used similar people. They're so comfortable and familiar with it that it makes it much easier. So they know they’ve got a voice. They know when to speak and when not to speak, as everybody else does. It just works well if you’ve been through it a few times. They’ve seen somebody being patted down a bit if they get a bit over ambitious or dominating. That side of it is very good. They lose their naivety, yes of course, is that a bad thing? I'm not sure. Not if you take away the – remember what you’re after with PPI is to get at something which is relatively raw. If it's totally processed at the end, then I think you're going to lose some, the benefits. So again, a little bit of both. If you can bring new people in all the time and still have established individuals I think that’s the best. I certainly wouldn’t advocate having all people who've been around for a long time, and I certainly wouldn’t advocate having a whole bunch of brand new people because that’s quite ‘hard yards.’
 

Catherine worries that some people may become too expert, but equally they need some training to give them confidence and skills to contribute.

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Catherine worries that some people may become too expert, but equally they need some training to give them confidence and skills to contribute.

Age at interview: 29
Sex: Female
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I think that’s a whole other issue about how much you want to train them. So that lady from the NIHR, who I told you spoke as a PPI person, is obviously very experienced and has been doing it for years, and I think that then becomes something a bit different to the PPI that I envisaged because that’s more of a patient researcher than a regular member of the public. So I think that’s a whole other issue altogether – how well or how expert you want your PPI people to be in PPI. But I think some basic training for all PPI people would be good, not so they become a PPI expert, but just so they can be able to contribute. Because I worry with this PPI that I'm about to start, as soon as they're wanting more in-depth, or they come to some of our research meetings, I'm not sure how much they're going to be able to contribute, which is why I've come up with some definitions and leaflets, and I'm going to meet them first to try and explain things. But I do think it'll be hard for them to actually do anything meaningful, and maybe a bit of training would give them – I'm not sure what that would involve – but give them a bit of confidence and a bit of skills to be able to actually contribute more. 

I think the novel thing you get from PPI people that you don’t have in your research team already is more of a naïve – I don’t mean that negatively – but more of a non-research based point of view of things. So I think they'll question what you're doing because they don’t have the background in academia, which is what I think one of the main things we want from people is to give you their parent point of view or their public/patient point of view. And I think the more involved people become in research and they’ve taken part in lots of different studies and been involved in different grants and they're going to become more from a researchers’ point of view, which we already have experts in that point of view. So I think you want to make sure that they're still coming at it as a member of the public who's different to an academic because otherwise it's, I think they'll become more like the rest of us are. But it's not necessarily, I think it's good if they do know more the ins and outs of things… I mean it would be good for them to have a base of knowledge to know how things work and the constraints that we work within and how, what's a good study design and not, you know, things like that I think would be useful. But I think there must be a point at which they become too expert that they're more like an academically trained researcher than like a member of the public.

And how do you think you would know if they crossed the line into that more expert role?

Well there wouldn’t be one fine line that they either are or they're aren’t, it's a continuum, isn’t it? So the grant that I’ve told you I’m about to start meeting this PPI group – I wouldn’t envisage then using that group for other grants afterwards so it would be, I think, five years and they may well drop out well before five years so that would be the longest. I would say that at the end of that that's, well at the moment, I think that would be that PPI group finished, although they may want to continue and then I guess ethically if you’ve trained someone and they’ve put the time into it and they’ve enjoyed it, then you do have responsibility to keep them involved if they want to so I guess we'll just have to see when the time comes. It's hard. I don’t know, I don’t know if it's a problem or not, I don’t know what other people think really either but it's just, I'm not too sure. 
 

Over time people may lose some of their lay perspective, but Gail thinks it’s not something to worry about.

Over time people may lose some of their lay perspective, but Gail thinks it’s not something to worry about.

Age at interview: 42
Sex: Female
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Can it happen? Yes. Should we worry about it? No. I think [laughter]. Yes people do develop skills they develop in their work just as we do in our paid work. It means we have, you know, I have a different view 17 years down the line in my job than I did the day I started. But as long as you’re aware of that and that you kind of understand that about what that person’s bringing into the project. If you want something else then go and find that too. I think this idea of the pure lay voice – everyone comes with background experience even if it’s the first time they’ve been involved in health research. Maybe they were a chairman of a company, maybe they were a domestic worker, maybe they were a housewife and they, you know. This idea that there’s somehow this pure layness that people come with, no. So we all come with our experience and as we get more involved in health research we develop our experience and that’s okay.
There was disagreement about whether becoming a service user/patient researcher still counts as patient involvement or is something different. Sabi (above) argued it was clearly a different role. Vanessa felt in mental health research it was an important way of involving people – but that they often wanted to be seen as just researchers. Jo was someone who had made this transition – from research career in another field, to patient, to researcher in PPI.
 

Some users involved in Vanessa’s mental health studies want to be seen as just ‘researchers’ and not ‘service user researchers’.

Some users involved in Vanessa’s mental health studies want to be seen as just ‘researchers’ and not ‘service user researchers’.

Age at interview: 42
Sex: Female
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Obviously we all use our experience in everything we do and you can't completely lose any of your identities but essentially there are some people that wear it on their sleeve and other people that don’t. 

And I think within our organisation we have some posts that explicitly say, "You have to be a mental health service user to have this job. We won't be, we can't appoint you if you don’t." And we have had the discussion with some people, not currently people that are working with us but people that have been advising us and various different people that we engage with and finding out from other teams [coughs]. So we've had conversations, we had a day where we brought people with lived experience together that have got substantial roles in terms of research and asked them about some of the challenges. And one of the things they said is that sometimes it's really uncomfortable to have a service user researcher on your name badge: "I just want to be a researcher. I'm the same as everybody else here. I happen to be that too and I'm quite happy to talk about it and use that experience but why should I be singled out as different to the person next to me, they're a researcher." 
 

Jo feels her dual experience as patient and researcher enables her to empathise with both perspectives.

Jo feels her dual experience as patient and researcher enables her to empathise with both perspectives.

Age at interview: 50
Sex: Female
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Thinking about you as somebody who kind of came into this from a patient’s point of view. Did you have to re-think your role or think about when you started your job - did you have to think about who you were? Were you the patient service user researcher or were you researcher researcher or what, do you know what I mean?

No I don’t really think about it at all, I think I’d… I think I deliberately left my previous career behind me and that was in a different field although I still carry all that experience with me and, and that’s really, really useful but I think I’d come into this much more with my patient hat on in a way but I think what’s nice is I do kind of span both of those because I kind of understand where researchers are coming from and I understand what they need and want and what the university needs and wants but I also because I’ve got that lived experience and it not necessarily being good experience I’m feeling that I carry a lot of, of other people’s voices with me as well. 

So I kind of came to it more from that side I think and being very happy to kind of come in at the bottom and just work in that environment to help and support other people. So I think I’ve got an awareness of it but I think it’s my lived experience actually carries me through a lot of the time and actually is really, really helpful if I’m in a workshop or something and other people who may be vulnerable and, and struggling and it really, really helps to be able to share their experiences and not to come in as an, an academic and kind of with that hat on if you like. So I think I suppose I approach it from if you like I kind of approach my work from my experiences as a patient more than I do as an academic.

One of the other patients turned researchers or service user etc. how would you, what’s your preferred term, do you have one?

I don’t have one, I don’t, I don’t really think of it like that to be honest because I was a, I was an academic researcher and a patient all at the same time and I suppose I’ve been, I suppose it’s just which one’s kind of got, got more weight at the time.
While some training was felt to be helpful to ensure people felt able to take part (see ‘Training needs for involvement’), there was also a feeling that researchers needed to change what they do to make it easier for people, rather than expect them to acquire expertise. Developing more creative ways to involve people beyond traditional committee structures is something we also discuss in ‘Finding people to involve in research’.
 

Vanessa wonders whether we can use less jargon and ‘move the academics towards the lay’ as well as helping lay people understand academics.

Vanessa wonders whether we can use less jargon and ‘move the academics towards the lay’ as well as helping lay people understand academics.

Age at interview: 42
Sex: Female
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The other thing is that there was a research paper that came out recently, a little while ago, and it got everybody talking and at an INVOLVE conference there was a big discussion about it I think about this whole, the whole word ‘lay’ and the contribution of lay to research. 

And again I think it is a really, really important discussion to have about when you're asking for people to get involved because they have a lived experience of something in particular. You also want them to come and have, to get involved in your research study. And as soon as they step in the door of a meeting of a research study does the layness sort of start rubbing off them slightly? Do they get closer? Do they start behaving like an academic whatever that is? And how do you keep them pure in their layness but also make sure they're not disempowered in a meeting where people are having their own jargon and talking in this way and - So how do you move the academics towards the lay and the lay towards the academics? 
 

Expecting people to have committee skills and fit in with professional structures limits who will get involved.

Expecting people to have committee skills and fit in with professional structures limits who will get involved.

Age at interview: 40
Sex: Female
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And what about involving hard to reach groups?

Yeah that’s – what are hard to reach groups was the first question that springs to mind. And I think, the yeah, it's sort of, and how you know. I think that again there is this issue around, you know, those who are involved are kind of white, middle class, previously worked in, you know, managerial positions and stuff like that and, I think they’re... I think that’s wrong. I think and you often see that sometimes on adverts for things that you know – must have experience of committee work – and you sit there and think, 'But why?' And I think, I find that quite annoying but then it's sort of thinking. Again that probably taps back onto the; I think I made the point earlier that actually you're trying to involve people in existing systems and existing, you know, very kind of – professional's the wrong word - but you know kind of professional structures and, you know, rather than actually talking to them about how they should be involved, so maybe it's clipping on it a little bit and actually trying to adapt the mechanisms by which you will involve people. And I think that probably puts a lot of people off you know. 
Stuart and Jim argued that there is a place for lots of people with different levels of experience.
 

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.
 

Jim says ‘you have more experienced and less experienced people, not professionalised people - I think it's important to have both’.

Jim says ‘you have more experienced and less experienced people, not professionalised people - I think it's important to have both’.

Age at interview: 52
Sex: Male
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And there is quite a significant issue about who you get involved; how you get them involved and how diverse a population of people who get involved. And there's been a lot of going round and round in circles about people who get involved and stay involved for a long time become professionalised and what does that mean and does make them less lay. And, well if you involve somebody who's got no experience how are they going to add value because they don’t know what they're doing, but then everybody had to start somewhere. So, these arguments are slightly self-defeating, a little bit frustrating and I think you need both. You know there are lots of people who've been involved for a very long time. I know quite a few people who, you know whose; you know lived experience was ten, maybe twenty years ago, but for whom it's fresh. You never forget a significant experience either as a patient or a carer; it never goes away. Your perspective on it, and the way you channel what you’ve learnt from that experience may change, but you don’t lose that perspective; you just gain more experience. So, you have more experienced and less experienced people, not professionalised people really and I think it's important to have both. 
 

Andy originally planned that people would have a fixed term of involvement but that felt too brutal. The PPI group has naturally refreshed itself as new members join and others drop out.

Andy originally planned that people would have a fixed term of involvement but that felt too brutal. The PPI group has naturally refreshed itself as new members join and others drop out.

Age at interview: 49
Sex: Male
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We originally had a rule that said, I think it was people could be a member for two years with a possible extension to three years and actually what happened was two things. One was it didn’t prove to be necessary but also it felt quite brutal because some people had put a lot of time into the group and been on various training and things that we’d offered and stuff and built up a lot of expertise and then said well after two years no matter what you’re, it felt very, very brutal actually. 

So we actually had a discussion within the group about that and decided not to follow that strictly and we have had people naturally moving on and we’ve had people moving in. I also think different people bring new perspectives and new ideas so it can be very easy to get into very doing similar things so I’m very pleased for instance that we’ve got a male carer in the group at the moment, we haven’t had a male, we have female carers in the group we haven’t had a male carers in the group before. And we’ve got a range of people with physical disabilities illnesses that have occurred later in life like strokes, mental health problems and that’s quite an interesting dynamic different people with different conditions and then some people that are carers as well. So I think part of the success of the group is to keep new experiences coming into the group and refreshing ideas and so on.
Andy (above) felt it was not only wasteful but also unfair to limit people’s involvement just because they had developed some expertise. Some may want to move into different involvement roles and find some new project to contribute to. Sarah A found the whole debate around professionalisation frustrating, and thought using words such as ‘tame’ to describe people with long term involvement experience was insulting. There was considerable agreement that just because someone has some training this does not necessarily mean they lose touch with their experiences as a patient or carer. Researchers also saw the need to build trust, continuity and relationships as important, and give people time to grow into the role. Gail made a case for a sense of professionalism as a good thing for young people who get involved.
 

Illness experiences stay with you for a long time. A bit of training is not going to suddenly wipe that out. People with training and experience can challenge more effectively.

Illness experiences stay with you for a long time. A bit of training is not going to suddenly wipe that out. People with training and experience can challenge more effectively.

Age at interview: 49
Sex: Male
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Again I think I don’t particularly agree with it on, on, is it really, I think there’s two issues to it. I think, again I think there's two issues being conflated here one issue is to do with, I work with people who had some very serious health problems, people who’ve suffered from depression and lost their careers and their jobs and their houses and stuff like that. People who’ve had a stroke these are all big events, or people who’ve developed diabetes and they’re going to live with that for the rest of their lives. And one of the things about diabetes is people think of its just diabetes but actually when you realise the consequences of diabetes especially if it’s not, yes and yes it’s for life. So I don’t think the fact that somebody happened to go and do a half day training on research methods wipes that out and in, in a way I'd like to know where all this training is that people are doing which is then socialising them into the, into the culture of research so they lose their layness. I don’t see that that process wipes out that experience and again it’s that experiential knowledge that you’re wanting to access I don’t think that that’s wiped out…

But I think the other, the other issue that really what people are talking about with the professionalisation thing is really something about the fact that do people have a real say, because I think what people worry about is that it becomes tokenistic and if you get somebody involved who goes along with that tokenism that’s, so you’ve got somebody who just turns up to a meeting and they, is it okay do you think it’s alright and they go yes, yes that’s what people are concerned about. That’s not about necessarily, you can get that problem whether people have been involved in research before or not, in fact I think if people don’t know about research when they get involved they’re more likely to be like that because they don’t feel that they are in a good enough position to challenge. Whereas people who’ve done, got some knowledge about research actually will feel more able to say “I’m not quite sure”. I remember being in a brilliant situation where we were very early days in in designing a research project and there was a very big convoluted debate taking place and this patient who had done some training on evidence based medicine said ‘Can you just tell me what the research question is? I’m not clear what the basic research, you know, what's the population, what’s the intervention, what’s the outcome?’ and that was classic. And there was a professor there and looked at him and he said ‘I may be asking a silly question here’ but he said ‘No actually that’s exactly the question that we need to get ourselves back to here, what is the research question’. So I think actually people are more likely to do it because they’ve had that training, I think the issue is that where you create opportunity, where you involve people but you involve people in a very consultative model, that’s when you tend to get the tokenism or its just simply people nodding. But that’s not the person who you involved’s problem, that’s a problem of how you do your patients’ input in public involvement. and I think it’s a different issue but I think people talk, talk about one when they’re talking about another and say this is professionalisation causes this and I don’t think that’s correct.
 

PPI is about building partnerships over time, and supporting and training people to get involved. Wanting everyone to be completely ‘naïve’ is unrealistic and devaluing.

PPI is about building partnerships over time, and supporting and training people to get involved. Wanting everyone to be completely ‘naïve’ is unrealistic and devaluing.

Age at interview: 32
Sex: Female
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Do you think that there needs to be training, support, things like that for patient and public involvement?

I do. But this again, I know this is an issue, this is a potential contentious issue. My, so the kind of debates I've had are people who have this view, for example, that you should have naïve PPI so that the person who is coming is a naïve member of the public who doesn’t have, kind of, that research hat on or those research blinkers or whatever you're kind of assuming research does to people, and who is just giving a, I guess a pure untainted view of what it's like to be the member of the public who suddenly gets the letter about the research trial or who suddenly hears about this research finding and they can give that, just that – that sort of untainted view of just what it's like to experience that. And I understand that and I think that’s valuable. But because I would, I think PPI should be more about a continued involvement and partnership; I think that does need then, training and support. I don’t think you can ask someone to walk off the street and, as I said, comment on an analysis plan and comment on an ethics application. 

So in that case I think we do have an obligation to offer support to them and to teach them, or to offer them opportunities to train if they want them. As I said, it goes back again of course; you know, people would be different I think; people, some people come on and they want to just give their opinion and other people, I think, really want to get more involved. And I personally think that there is a lot of, a lot to gain from having, you know, what get called the ‘expert PPI members’. I don’t like this idea that once you become more expert in PPI suddenly you lose that interest or that passion. So my PPI partner, my collaborator I talked about, her issues, her passion is about carers and things affecting carers, and she's incredibly experienced and knowledgeable about PPI, far more than I am. 

For example, she has huge amounts of experience in doing it and the idea that that taints her, her passion or the sort of, the raw experience of saying, "But this is what it feels like to be that person." I don’t think that’s true at all and I think, I personally think, that kind of devalues the contribution that those people can make who are these amazing people who have this passion, who want to share their experiential knowledge with us, but who also have experience and skills that mean they can do that. I think they're amazing, you know, and it frustrates me sometimes when I see this argument, "well, we'd better not train them because then they’ll, you know, they’ll be too much like us," or something. I don’t know, I find that, I find that strange. But as I said, that’s, I know it's an issue of debate and I'm probably being unfair to people who have the alternate view but it's my interview so I can [laughs].
 

We owe it to people who get involved to help them develop skills. It doesn’t mean they lose their carers’ perspective or their experience becomes less valid.

We owe it to people who get involved to help them develop skills. It doesn’t mean they lose their carers’ perspective or their experience becomes less valid.

Age at interview: 39
Sex: Female
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I think the expertise one is an interesting one but you can see it from both sides obviously. It's a really, there are some arguments that are just focusing on people's complete naïve experiences. I think the way I've started to think about it is that actually the expertise that people gain from being part of PPI is part of what we should be giving them. You know, it should be, it's kind of a one sided relationship, well it's not, I mean that’s the point that parents, parents make to us that they do get something out of it; it's not just about contributing to research, they get something out of being part of it and I think that’s an important part of the whole expertise argument that it, if people want to be involved in a systematic review and you give them some training on that then they get something out of that which is useful to them in terms of confidence, skills, you know, all manner of things. So from a, from a personal development point of view I think, well, you know, it's brilliant, it's fantastic. If somebody wants to develop their knowledge base and, as a result, can participate more in some of the, some of the less accessible areas of research, then I think that’s fantastic. I, again, do see the point that sometimes I know for a fact some of our parents know a whole lot more about certain elements of conditions and, and not just from experience, from the fact they attend a lot of conferences. 

So I think it really depends on what your purpose is, you know, what are you trying to do? I'm trying to involve some parents of disabled children. This person is a parent of a disabled child, he has all of that experience and the fact that she may be, she may have learnt how to, how to do a bit of thematic analysis so that she can be involved more doesn’t take away from that experience any more than, you know, me being a runner takes away from, you know, something else. It just, yeah, so I don’t think we have the right to say to people, "We want you to come and be involved in our research but we don’t you to know anything about it, that’s our domain, no." So yeah there you go, that’s pretty much it [laughs]. That’s pretty much my views on it.
 

Helping young people to feel professional about their involvement is a good thing. ‘It’s about having some capital in the decision-making process.’

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Helping young people to feel professional about their involvement is a good thing. ‘It’s about having some capital in the decision-making process.’

Age at interview: 42
Sex: Female
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I suppose, the one thing I actually would say is in some way, you know, I guess could it be argued that in not paying the young people an hourly rate to actually turn up and perform the roles that they want to perform, does it mean they’re somehow de-professionalised against the adult researchers that are sat around the table getting a salary? Maybe so. I can see how that could be argued, but I think a professionalised role for young people is, in research, is more than that. It’s about having a voice, it’s about being heard, it’s about having some capital in the decision making process, it’s about making a difference and knowing how they’re making a difference. I don’t just turn up to work because I’m paid; I turn up because I enjoy my job and I hope it makes a difference. So I think young people can feel professionalised within their involvement roles even if they elect or it’s decided that they’re not going to be paid an hourly rate for what they do. But I think that they can be recompensed in different ways but I think you always just need to establish this at the outset with any particular group and make sure you're asking questions and thinking these kind of things through.
 

Tina wants to ‘make sure there's a way out for people that leaves them somewhere to go and doesn’t leave them with knowledge and no outlet’.

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Tina wants to ‘make sure there's a way out for people that leaves them somewhere to go and doesn’t leave them with knowledge and no outlet’.

Age at interview: 56
Sex: Female
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So how to take that forward is a really hard thing, because you do produce a great deal of expertise and people with enthusiasm about what they want to do. Others have just had enough by the end of it I have to say – they're so exhausted by the whole process. They go, "I never want to do any more in the whole of my life." But for some people it's become, it's become something. Because they’ve had their ways of thinking challenged, they want to continue challenging ways of thinking. So I think it's a big responsibility which I had under-estimated when I first started, but I'm beginning to be more aware of now and will, in this next project, will be more aware of again - how to make sure there's a way out for people that leaves them somewhere to go and doesn’t leave them with knowledge and no outlet.
For Gail, paying young people was important so they did not feel ‘de-professionalised’ compared to the other researchers. (See also ‘Payment, expenses and funding issues in patient and public involvement’). 

Some researchers drew a distinction between lay representatives appointed (or even employed) by charities or support groups, and those who were involved because of their personal experiences. John was particularly concerned that any conflict of interest should be declared.
 

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. 
 

Some patient advocacy groups represent the interests of industry. John thinks that’s fine, but it needs to be declared and they should not be seen as the voice of all patients.

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Some patient advocacy groups represent the interests of industry. John thinks that’s fine, but it needs to be declared and they should not be seen as the voice of all patients.

Age at interview: 59
Sex: Male
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I do worry as well about professional patients. There are professional patients out there often paid substantial sums of money by industry, which is fine as long as they’re not the only representative and as long as they declare their conflict of interest, which they don’t always. In fact they don’t usually, you have to find out. So I think their conflict of interest of patients is or could be a key issue.

Patient advocacy organisations often have a substantial income from industry. And so yes, they are there to promote the industry agenda. I have to say that industry has produced more innovations in care than government and that I’m, to that extent, on the side of industry. They have an important educational message both for patients and for the profession. But first of all they need to have a declaration of interest and secondly I don’t think they should be treated the same way as other patient advocates. They should be seen as a professional body of patient-advocates as opposed to representative of the more general patient population. So I think they have a role. I’m not saying by any means, I’m not saying ban them or anything like that. I think they need to be seen for what they are. They need to be treated differently from other patient advocates. And we need to ensure that, although they are the voice of a patient advocacy group, they are not necessarily voice of patients.

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