Right okay so I tend to go with the standard NIHR, you know, INVOLVE definition about actively working with members and patients and members of the public and community members as well in the actual doing of the research as opposed to recruiting people to trials as research subjects or engagement as in telling people about the results from research. In terms of the purpose of the of Patient Public Involvement I think they’re probably almost as many purposes for PPI as there are people interested in PPI and certainly I think one of the mistakes that you can make is to assume that everybody is doing PPI for the same reason and I think one of the problems in research teams when you do PPI is that people are probably expecting to get different things out of it and nobody’s really explicitly addressed or explored it with the end result that at the end everybody might feel a bit frustrated because it didn’t quite deliver what everybody expected. I think its fine to have different expectations and different aims for you Patient Public Involvement you just need to be explicit about them. However having said that I think if we’re all pursuing completely different agendas there’s not much common ground so I suppose if there was a common ground to it then it would be that patient Public Involvement will lead to research that’s more likely to lead to health improvement to improve healthcare for people. And I think that is an objective, whatever specific objectives we’ve got that’s something that the academics and the people in the NHS and the patients and members of the public all feel strongly about, certainly within [CLAHRC], but that’s what we’re here to do, we’re here to do research that is more than likely, that’s going to improve healthcare and treatments and so on for people.

I think it’s about people’s experience of; lived experience of the issues brings a very valuable different view to the academic or researched view of, if the area. So there’s something about enhancing the, the scope and the parameters of what you’re, what you’re studying. So improving the inherent quality so. But to do that your need high quality involvement, so just by having young people part of it your research isn’t going to be suddenly brilliant. So you need to think through the processes but I think at the heart for me that’s, that’s certainly part of it

And then think about why, why we do it so is it because it’s a right it’s a democratic right? Is it because the patient voice is, is different and provides an additional view? Is it, is it about accountability, you know, that by opening up the research process to other groups that we make sure that we are doing it right? So there are many different reasons and I think we need to have that debate a little more so that as individual researchers we can think about these kind of things a bit more. So conceptually I think there are quite a few things we need to get right still or more clear and this idea of involvement being a good thing’ so we have to do it or involvement being something that now to get funding we need to do so we have to do it. Yeah okay but that doesn’t, that’s not going to give us the foundation we need for doing it well and doing it in a considered way. So I think we need discussions around things like, like power and decision making that I’ve kind of talked about already, you know. So how do we ensure that people have a capital, you know, and an influence within the things they’re involved in. Just by inviting them in that’s not going to happen, so how do we envisage the decision making process, how do we envisage responsibility?

So for us involvement is about where we’re taking people with a particular expertise, which in our case is living with a mental health problem or supporting somebody who lives with a mental health problem. So they have particular expertise through lived experience of that journey. And involvement to us is involving that expertise and the people with that expertise in research. And that involvement can happen on lots of different levels and so in any project we have to look at what’s appropriate and what kind of roles we can support involvement within. But the essence of it in every role it’s the combination of having lived the life as it were, either in the role of family or in the role as, you know person living with a mental health problem, obviously people call it different things. But it’s that expertise that you’re bringing into a research team, into a research project.

Well as I say if you’re doing clinical research of course you’re always working with patients, you’re always involving them but I guess in my first few research projects I didn’t involve patients in the planning of the research it was essential to have their co-operation to do the research at all because it always involved a similar mixture of clinical assessment neuropsychology and imaging but I think what has changed from my perspective over the last ten to fifteen years is that it’s people have begun to involve patients not just as passive participants, but as people who have something important to contribute to the, to the earlier planning stages and subsequent review stages of research. So by wholehearted I meant involving not just as participants who get scanned or take tests but also as contributors to the, to the process by which research is planned.

Okay and what would you say the purpose of involvement is?

It has a number of purposes I think there are, there are questions which might not have occurred to the researchers but which will occur to the, maybe in the front of the minds of participants so it’s helpful to find out what it is that people with the condition are bothered by, we like to know the answer too, what are the questions that they would like to see answered by research. Then they may spot difficulties with the plan that has been developed and then the, once the research has begun to produce some data they may spot implications which weren’t so obvious to the researchers. So I think at least those three, well at least those three roles can be played by involving patients

I guess it’s easier for somebody like me as research is very clinical because I’m used to trying to please customers really, I’m used to sitting in clinic with people and so PPI is in research a very small step from what I do clinically anyway. I guess that if you’re a bench researcher and your work is potentially very important and very valuable but much further from every day experience, every day clinical contact then, then PPI might, the relevance of PPI might appear less clear and the threat from PPI might be more alarming and because you might be afraid then you’re going to, you aren’t going to be able to pursue your, your particular precious ideas and you might, you may worry that it may be deflected in some other direction which you don’t fancy. Clearly there are, there are kinds of blue skies research which are well worth doing which researchers have a hunch would be useful and which most people aren’t going to have a clue about so in PPI clearly shouldn’t be allowed to rule research entirely I think, you know, it’s you want very wide diversity of kinds of research and kinds of project to be pursued. But nevertheless I would have thought most in the context of the regularity of clinical research projects it would be helpful to have that kind of input.

What for me is the sort of killer question as a lay reviewer is, if you have this condition or a member of your family had this condition would you consent to take part in the study that you’re reviewing? And that’s a fantastic question because it goes right to the very heart of research, because there’s no point in designing a study you can’t recruit people to, and public involvement which about making sure that people do recruit to it. So it’s almost the only question, almost the only question you need ask. It’s always the killer question for me because a study might be phenomenally well designed, the statistics may have been terribly impressive and I can vaguely understand them. But actually, if the study isn’t one that would be attractive to be involved in because either it’s, the practicalities mean that it would be easy to take part as part of your care or, that, you know there are sort of other aspects that make it, you know you think it’s safe; you can see the reason for doing it; it’s relevant to your particular condition. If none of those things are true you’re not going to want to take part.

Yes, yes and we all bring our assumptions to that which also leads to that lack of conceptual clarity about what it is because there are so many things that PPI is to different people which is why it is important to articulate for each project, for each team what is PPI in our project because it could be because people have a right to be involved in their research – end of; in publicly funded research end of, and we don’t need to justify it, we don’t need to demonstrate impact because it is a human right. I pay my taxes, I’m using services, I should be involved. OK that’s a view, you know, and I think that’s perfectly legitimate. How helpful it is I don’t know. But instrumental views would be around you know, you need to involve those who’ll be most affected by the work and who will have experience of using the services in order to improve or ensure that the quality, the relevance, the rigor whatever, of the scientific endeavour is sound. So, you know, that’s a definition, that’s I think, is used by the NIHR and INVOLVE. [Telephone feedback] It’s about quality relevance, utility, best value for money all those sorts of arguments. There’s the democratic argument, the normative argument I’ve already mentioned, and it’s about, you know, the process of the research being overseen, being shaped by the end user if you like or the active citizen in terms of the tax payer.

I mean our project’s really interesting because it came from a parent of a child who has behavioural challenges and that father had had trouble getting an x-ray at the dentist for his child and wrote to us on an email and said, you know, “Is there any research about this?” And I know little more about dentists than going to the dentist myself and feeling anxious about that, so it wasn’t an area we knew anything about but we looked in, we followed our procedures for writing what we call our ‘what’s the evidence’ summaries that appear on our website that are based on things that families have asked us about.

So we looked in the usual sources of high level evidence, the Cochrane library and database of systematic reviews about x-rays and dentists and various words to describe disabled children, children with neurological conditions. And there is a literature out there about, you know, there’s a Cochrane review about whether you should use anaesthetics for taking x-rays in children with challenging behaviour. And we also sent an email to our family faculty and said, you know, “Is this something other families have faced or anything else about oral care and dentistry?” And we got an overwhelming response; you know, families have significant challenges managing children’s teeth either because the, you know, the neuro-disability affects, you know, self-care, tooth brushing or the dentist’s surgery wasn’t accessible or they struggled to get someone who would give the time in an appropriate fashion to enable the oral examination to take place. So it seemed like a massive issue and we wrote our ‘what’s the evidence’ summary and put it on our website and ticked the done box. But then we were approached by some dentists in [place name] who came across it and were really interested in it and that’s led to us having a working group where we have some dental researchers, childhood disability researchers and some parents in the room and that was a really successful meeting lots of sharing of ideas and, you know, building potential research questions from the bottom up.

And do you think there’s lots of things like that happen with PPI, that there’re these things you don’t expect to come out of it?

I think you need to be open to that. I think that, you know, going in that open way is really important you know, because if you knew what you were going to do why are you wasting everybody’s time? I think the reason for engaging with people is because you don’t know stuff and it’s surprising how much we don’t know when you really admit to yourself how much do I really know about this? You know, if we design the study in this way would that really be acceptable and might there be other ways and – I’m always amazed that our, that you know, the parents come back at me with different perceptions and viewpoints and I think it’s probably just because I’m a bit dim. But I think anyone could have that openness and uncertainty about what the right thing to do is.

But you’ve referred a couple of times to having this obligation to do PPI, we have this obligation. Where does the obligation come from?

So a basic one is we’re tax payer funded. So we are a public body doing things on behalf of the public; using public money. And so I think in a, sort of, a social democratic sense, the public should have some access to that, some say in how that’s done. That is probably the primary one for me and I think as well we, I always think, you know, when you’re writing your grant applications or something and you do your bit about how incredibly important this topic is to patients and how, if you do this project, patients will benefit and it will make patients’ lives better and patients’ are going to love this so much. And I think well, if you can’t, then speak to some patients and explain to them the reason it’s important and have them at least agree with that or, you know, offer their opinion, does that mean you’re lying in that grant application? I suppose the alternative view is that you know better than those patients do – what they want. And I think possibly some researchers do think that.

But for me, then it would come back again to kind of transparency and things. I think the obligation is to at least try to communicate these things to patients. They give them the opportunity to become involved. As I say, it’s their money, it’s their healthcare and if we’re going to say that we do research for patient benefit I think a patient should be able to tell you what that benefit is, or agree with you that it’s beneficial, I think. So I suppose that’s what I think.

But you’ve referred a couple of times to having this obligation to do PPI, we have this obligation. Where does the obligation come from?

So a basic one is we’re tax payer funded. So we are a public body doing things on behalf of the public; using public money. And so I think in a, sort of, a social democratic sense, the public should have some access to that, some say in how that’s done. That is probably the primary one for me and I think as well we, I always think, you know, when you’re writing your grant applications or something and you do your bit about how incredibly important this topic is to patients and how, if you do this project, patients will benefit and it will make patients’ lives better and patients’ are going to love this so much. And I think well, if you can’t, then speak to some patients and explain to them the reason it’s important and have them at least agree with that or, you know, offer their opinion, does that mean you’re lying in that grant application? I suppose the alternative view is that you know better than those patients do – what they want. And I think possibly some researchers do think that.

But for me, then it would come back again to kind of transparency and things. I think the obligation is to at least try to communicate these things to patients. They give them the opportunity to become involved. As I say, it’s their money, it’s their healthcare and if we’re going to say that we do research for patient benefit I think a patient should be able to tell you what that benefit is, or agree with you that it’s beneficial, I think. So I suppose that’s what I think.

I feel that public involvement is something a lot closer to actually involvement in the research process. So I think the distinction is there’s engagement which is important but at one level isn’t asking that much of the public whereas involvement is asking for an awful lot more a lot more time commitment and a lot more interface within academic teams and within a programme. So it’s not just reading an article or maybe Tweeting and making a response. It’s actually coming to meetings; it’s commenting on things; it’s getting involved, it’s just a they’re completely different activities.

And the challenge or the interesting thing here is understanding why we, how they relate to each other, making sure that they do. And obviously for academics and for research teams is working out who is best placed to do all of this because it’s been quite a challenge to get us to a point where PPI is really quite substantially embedded now. And people do have to fill in on their form what they’re doing and there is still a sense that some of that is quite tokenistic. And there is great scepticism out there and it is difficult. And I know some people find it quite hard to work out is this going to help me or is this just going to cost me time? Is this just a distraction and it’s time I don’t have, and it’s money that I could spend differently. So the case for PPI is still being made.

And I suppose organisations like us are trying to assist with that by showing through the evidence base why it’s helpful. It’s not just being evangelical and saying it’s important. It’s not only saying it’s important on a human rights basis; you should involve the people because it’s their lives that you’re trying to change. But we’re also trying to show that actually it’s because it will help you and it will deliver better quality research more focused – and we have really seen the benefits and feel that our studies have improved for it.

And there are people who have negative experiences and I think that can, you know, that goes back to I think the more basic thing of, it can be scary because you think, ‘Am I just going to sit here and get told off by this group of patients who think that what I’m doing is rubbish?’ And, you know, I’ve been, I’ve been working on this for nine years now and I don’t want to be told that I don’t understand things. And, you know. And that I think is sometimes dangerous, I think sometimes as a kind of an implicit and sometimes actually explicit kind of storyline in this idea that we need PPI because actually we’re all these kind of you know, robotic, unfeeling people who don’t understand what patients go through. And I think, I wonder sometimes if that’s a little bit of the friction as well, there’s this kind of so what, you know, I’ve spoken to hundreds of patients; I spend all my time, you know, exploring this and exploring the impact on them, and you’re telling me that I don’t know anything about it. And that, you know, I wonder if that’s, but it’s almost a bit of a professional insult and a bit of a personal insult I think as well. So yeah [laughs].

That also means and I think that if you are having a risk of creating lots of negative impacts both on the members of the public but also on yourself as a researcher or a project team, there is a certain responsibility and a risk to consider. And I would say if you’re not fully committed to making that work and a central part of any research, then it’s an unethical choice that you’re doing. So I’m against, I would advocate against any public involvement that hasn’t got a serious and, you know, a very early, also an early stage of planning, collaborative planning on what the values and the expectations are with regard to this project, and also, you know, identifying the areas of impact which you want to have a, you know, an almost a negotiation. So I would say, you know, any research proposal that hasn’t done this before they’ve put in a grant and it should be categorically stopped, you know, by the commissioners and the funders because it is unethical to do bad public involvement.

But I don’t think that there is only one fixed thing that is good PPI and I think there are perfectly valid situations where any level of asking of consultation or is better than nothing. So what we try to do here for what you might call full PPI is to have the whole research kind of, it’s embedded in the research we do so from the generation of the idea all the way through the design. But, yeah I don’t think there’s any one fixed in my mind, there’s no one fixed thing that constitutes good what is PPI. I think what’s really important is that whatever you’re offering people know what you’re offering and what influence they can have. And you know I would have no qualms about emailing our family faculty and saying, Can you read this, it’s written already, does it make sense? And that’s kind of like a really, a fairly kind of old school, if you want to read this information leaflet and tell me if you can read it kind of approach, and that’s fine because if they know that that’s the only influence they’re going to have, to my mind then that’s OK but it’s about, it’s about the horrible phrase, ‘managing expectations. But about what the people are, you’re asking people to put in and what influence they’re going to have and what they’re going to get out of it I think if you’re kind of clear on that with everyone. That’s what it means.

One of the things that you mentioned a couple of times was about qualitative research and PPI and involvement.

Yes, yeah, yeah

And kind of the blurred lines or whatever.

Yeah

Can you talk a little bit about that?

Yeah it’s an interesting one because we’re thinking about this quite a lot lately because a lot of the work I’ve done has been asking people’s views on things. And you know their experience of things and how, you know, and looking at how that might improve their healthcare. And a lot of work hasn’t been like that as well so it’s kind of -But I think the difference is the time to change to something. So, you know I’ve done, you know quite a lot of work in the past, you know, sort of looking at, I don’t know, evaluating services and things like that and – But actually I’m not convinced of whether anything’s happened on the basis of it you know, so it’s kind of that commitment to act which I don’t think is always there. So that was one kind of parallel. So, you know it is kind of asking, you know being open and asking people what they think but also, you know you can’t always promise that something’s going to happen on the basis of it but it’s kind of. And you can’t always do that with involvement as well but it’s sort of giving, I don’t know, it’s the kind of whether you consider involvement being asking for views or whether involvement is involvement in decision making. It ties into all of that again doesn’t it what do you mean by it? You know and obviously, you know qualitative research you know the onus is on the person who you’re talking to and you’re trying to understand how they’re interpreting the world and all of that.

And you are trying to do that I guess with, you know, with PPI as well. But I don’t think somebody goes away and thinks about what it all means and, you know, you know tries to, you know make some recommendations on the basis of it with PPI, so it’s kind of. There’s probably only room for skills for the qualitative skill set within PPI for that reason, but it’s thinking about, you know, how the mind-set I guess is different as well because you’re sort of; you’re very much perhaps focused on a goal if you’re involving somebody so you’re, you know, you’re trying to, I don’t know read about a guideline or something like that whereas, you know, you’ve been much more exploratory in finding, you know broadly trying to find out what people think about something because not a lot’s known about something so. Yeah there’s lots of. It’s an interesting one isn’t it but it’s lots of blurred lines and, you know, I’ve had people say, “Oh you do that for years, you’ve done that for years,” and you think, ‘Actually I don’t,’ or you know, sometimes we review the PPI element of Research for Patient Benefit grants here before like a peer review before it goes out. And you know it’s interesting the amount of qualitative proposals who kind of don’t incorporate any PPI because they think they’ve done it already so, it’s quite, that’s quite interesting.

And so can you tell me a little bit about your experience and involvement. So sort of when you first started involving people and how that came about?

I think for qualitative researcher this is quite a difficult question to answer because, going back to when I did my PhD which is quite a long time ago now it’s in the nineties, because a large part of it was qualitative I was working with people. Even though it wasn’t formally labelled as service user involvement or participation, the very nature of the research actually involved people. And because the topic was to do with disability and in part about what is the nature of disability as a social construct you know it’s quite political. So there’s lots of stuff in there and lots of stuff that was influencing me about sort of disability rights and the whole agenda of nothing about us without us’, which I notice has now been taken up by David Cameron, but I mean that’s, originally it was a disability right so I think, and of course it’s highly relevant. It’s the kind of work that DIPEx does, the user involvement stuff. So no because it was a PhD it wasn’t, it was a very sort of personal thing for me, but during the course of doing that I, as well as sort of talking to people and gathering personal stories and, you know, doing lots of going round spending time with people, I then did kind of feedback to the, or had little meetings with the people whose stories I’d been using and writing up and sort of said, “Well this is how I’ve interpreted what you said and what do you think of this and does this resonate with you?”

So that was, it was part of the research process, integral part of the research process rather than being a separate phase of user involvement. But actually that’s what it was. And this is something that I’ve been aware of ever since that there is this kind of interesting blurring particularly when you’re doing the qualitative work between formal user involvement structures and what is the research process. So that was a long, long time ago. And then I went away and did loads of other types of work and have been back doing university or academic style research for about eight years.

And during that time there has been an increasing emphasis on formally involving service users. And you know the requirements coming out of funders and so on you have to show that you’re doing it. But I have sometimes have anxieties that it’s more of a tick box than anything else.

When did you start to involve patients and members of the public in your work?

Well look I think that’s. I mean when did I start? Probably twenty years ago when I first came to medical school. I decided to be a doctor and a clinician because patients were around and the public were around with diseases and health problems. And, throughout my clinical training I’ve always involved patients, so the idea I didn’t is nonsense. And, if you think about it you have to because how would identify where there’s a clinical issue, where there’s a problem? What makes a difference to a patient? You have to do that with relation to patients. So, I think in some ways, if you’re a clinician, it’s much easier to say you’re involving patients all the time. And so, on Sunday I worked in the out of hours, I saw twenty patients. Twenty patients with twenty different problems, twenty issues, twenty different diagnoses, twenty different anxieties, concerns, information needs.

Some of them were really interesting and would be used potentially going forward. It’s just that what’s happened is there’s been a realisation that there are many researchers who are completely disconnected from the patient focus. And it’s practically impossible to do research if you’re not connected to patients, and near to patients, because you’re going to do something that might be academically interesting. Academically interesting to an academic audience, but of no value to patient care.

So I think PPI is, incorporates being a member say of a funding panel. So you would get members of the public being on specific funding streams like Research for Patient Benefit and they’d sit, and it seems to me that that is a legitimate role as a member of the public and a lay person that doesn’t require experiential knowledge of a particular health condition. And it’s more to do with governance and yeah just, just that person plays a particular role as a non-expert. Whereas I think in other instances it’s really important to get people with first-hand experience. And I think what I’ve found is that sometimes clinicians, for example with the bladder and bowel project, clinicians were only used to interacting with people as patients in the clinic. And so it was a real eye-opener for them to sit in a room and do some PPI with women who were able to talk about the impact on their sex life on going swimming and things that they perhaps might not have revealed in the clinic or that their consultant wouldn’t have considered. So sometimes, you know, it varies according to the purpose of the PPI I think.

When you look at a number of people that we’re working with lived experience that we’re employing that are on our payroll that, and the journey that they come from and some, particularly where I used to, where I worked before there was one person who when we first started, you know I don’t recognise him now from where he started and he’s been on this journey with research and telling his story and building up his skills and building up his confidence and now works full-time. And yeah has come on an amazing journey and it started with somebody saying, “Why don’t you get involved in research?” And skilling people up, skilling him up and building his confidence to speak out and collect interview data and being involved in writing. And that journey is what you hope we can escalate on a much bigger scale.

So it’s not just about the quality of the research that’s changed; it’s also about the fact that you are helping recovery journeys for individuals with mental health problems and their families and providing something else in their life and building up their skill base, etc. and their confidence in doing it. So there are two benefits in this benefits for the individual, benefits for me personally and the team personally because we get an awful lot out of working with this group.

And then obviously our quality of the research as well.

Another great insight from the project was probably for me, an eye-opener, was that most of the impacts are on people rather than on the actual research. So I think that’s something that’s probably mis, not misunderstood, but not known about or taken in, you know, taken in account of you know; this public involvement is about the people so that’s all the people that, you know, all the stakeholders within a research team and the people that you enrol to collaborate with.

So, you know, and that’s the main thing and that’s also where most of the positive and the negative impacts happen. And then the, almost a secondary part is about the actual impact on the actual research and this is based on our review of the literatures. So I think, you know, when, you know, I would tell to anyone who engages in it it’s more about, you know, it’s going to challenge you as a researcher and it’s going to challenge the members of the public because everyone has different values, expectations and impacts that they’re interested in. But it’s primarily about that interaction and this is where you’re creating impacts and not the actual research. So and that’s, you know, so if, if you take that down into numbers, you know, so sixty, impact on research, sixty different impacts on the various phases of the research and it’s a hundred and twenty impacts reported on the actual people involved. So that’s twice, you know, it’s twice as much, twice, oh you know, more important not more important but you’ll create more impact on the people and on the research.

And my research dissertation, I interviewed some children and did some surveys with staff who had been involved with the forum structure, to kind of find out from them what they thought the impacts of involving the children in the forum were from both the children and stakeholders and from the staff’s ideas. So that was really interesting for me because I think for the first time I was thinking about the job in a more sort of, involvement in a more sort of academic way and thinking, ‘OK so everyone thinks that it’s a good idea and people are talking about there are some positives and this is why we do it. But it was interesting for me to kind of look at how people kind of frame involvement in local authority in the first place.

And it’s very much about the agency of the child and the fact that they can have a say. And then when I kind of talked to both the children and the staff actually about, so what did you get out of it at the end, it was very much more framed around the child as a developing child and the fact that this was very good for them because they learned all these skills and knowledge. And of course what I found was a little bit missing from the conversation was what impact they’d sometimes had on policy and on the local services. So people went into it with the best possible intentions but I kind of felt, ooh somewhere here the message has got lost or, there’s been some reasons why they can’t have as much impact which again made me start to think about some of the limitations to the involvement.

Can you tell me what you consider the difference between involvement and engagement?

Well I’d have said a very high level. Engagement is a more of a one way process of researchers engaged with the public to tell them what they’re doing and tell them what the results of what they were doing is, and there isn’t necessarily a lot coming back. There might be comments coming back or questions but actually it’s a, it’s more of a dissemination and a dissemination process, so a raising awareness type of thing. Whereas involvement is actually where you’re working in partnership with patients and the public, so it’s the doing with, or by, patients and the public. But there is a spectrum in-between it so, there is a sort of continuum of involvement which will start with engagement and actually, engagement can very soon become involvement when you then, the one way process starts to become a two way process and then actually it moves quite steadily on from there. But broadly speaking engagement is a sort of giving of information and involvement is a working with and by.

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.

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.”

You know, I think there’s so many instances that I’ve seen reported or I’ve attended conferences where you have, you have patients and carers being involved in data collection and data analysis and the insight that that is yielded. The richness it’s brought to the project, the, you know, fantastic work creative work that individual researchers have been able to facilitate patients and carers to take part in. I think, you know, that’s fantastic but I don’t think that’s PPI. I think that is something else and I think that’s where the conceptual fuzziness is a problem. I can’t probably articulate it well enough to explain very clearly about where the line is between, you know, patient-led, user-led research and PPI. I know that, you know, it used to be user-led research was part of the spectrum, if you like, of PPI. I don’t think that’s right, I don’t think its PPI. PPI is about involvement and engagement.

I think that, you know, especially with, in, in sensitive research areas or where you’re looking at very specific communities like, say the deaf community why wouldn’t you use deaf researchers to be collecting data and be involved in the analysis? You know, people who are working in the margins of society say sex workers you know, how helpful would it be to work with sex workers, develop their skills and involve them in data collection and data analysis. I think that would bring incredible richness. I’m just not sure that those are involvement activities they are methodological issues around who is best placed. So you might have PPI to help you identify that a particular project would probably benefit from researchers who have particular backgrounds who come with particular experience that is shared with the targets, the target sample if you like, the target group. But it’s a methodological issue, it’s not an issue of public engagement, public involvement.