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.

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.

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.

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.

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.

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.

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].

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.