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.

The other thing is leadership in all this who’s leading PPI in England? There’s loads and loads of amazing talented people that work in this area. There’s lots of academics that are committed to it; there’s lots of people that are lived experience experts; there’s PPI experts. I heard recently that the NIHR, through their Breaking Boundaries review, you know are running some events where they’re bringing everybody together that does PPI within NIHR lots of them, lots and lots and lots. There’s loads of expertise out there. So how do we harness all that expertise and have some leadership, have real key leadership and networking around it? Because at the moment there aren’t natural networks that you can join to share your expertise and talk to other people in the field and say, “Oh we’re doing this over here in mental health; what’s happening in diabetes?” I don’t know. I mean I run a charity that’s like to supposedly trying to be an expert in this and I don’t know what’s happening in lots of other fields and that’s a challenge for me, I need to find out.

But there aren’t natural networks that you join and I think that something could be done because it feels that if we’re saying that PPI is really vital to research, it’s a specialism and specialisms need leadership and they need training and they need support and they can’t grow without that. It’s all, it’s here, there, it’s all bits and bobs and its people doing it in their evenings. It’s become to a; it’s a level now where it’s more than that.

So I think the challenge is how do you pick up all of these little decisions and these little things that you do in a study that build up to actually changing the course of a study and identifying that’s because of PPI; because it could well be that somebody else in the study team could have that same bright idea and change it. It’s really, really tricky to unpick it but it feels that we’re in that state that we’ve got to justify it and we need to find ways of showing the difference. And I think the challenge for us, for the whole sector, is doing that across the whole of the research pathway.

So for example, when I was looking at the impact of PPI on this programme so far we’ve got reviews that came out. So obviously a funding proposal goes in and you get peer reviews back and in those reviews, if it’s an NIHR grant, you’ll get, there’s a bit on the form which asks them about the quality of the PPI element of it. So you can take that as evidence, as feedback, of what peer reviews think of your programme and obviously, funding decisions to a degree are influenced by these reviews. So would we have got that grant without our PPI programme? We don’t know. So that then comes back to should you be asking funders to give you that feedback? Can there be a way in which they can impact the fact that you have a score card and PPI is part of that score card. I mean I don’t know, maybe they do but it’s not transparent put it like that. Because we need more of that to show that actually, You scored ten. And three of those points came from PPI. And you had to score ten to get the funding. Ooh well PPI made a difference then things like, little things like that could make, could really help take us forward yeah.

And also if we’re getting to a point, as we do, where we are asking them to use their lived experience in interview situations and sharing that, and hoping that that then helps to create an environment and interaction where somebody else then shares, there’s quite a lot of responsibility going on within that, and that can be very emotionally challenging for both participant and the individual researcher. So having good supervision structures, making sure you’re really explicit with people beforehand that this is what we’re doing and the research that we’re doing is really, really important. So we, we put, we really try and be very careful about how we supervise people, touching base with them really regularly, getting people to write diaries and reflections. People in those roles are using their lived experience in research to go out and collect the interview data. We’re getting people to write careful notes we meet afterwards and we also get people to write careful notes afterwards. But for me I’m responsible for all this so, you know it is draining, it is emotionally draining and I, and I, but I’m very inspired by it and I don’t ever come to work thinking, ‘I wish I wasn’t doing this. I really feel that this is really important work.

And, you know we had, we have what we called a lived experience advisory panel and we had eighteen people in a group the other week and I just sat in this group and thought, ‘These people are so talented and I learn so much from them. They are, they know, not just about lived experience but about research as well; these are really, they, it’s just fantastic to have the opportunity to sit and spend two hours speaking to this group and they’re helping to try and shape this project. And it, you know I just feel a great privilege that we are, we can do this.

The other thing is leadership in all this who’s leading PPI in England? There’s loads and loads of amazing talented people that work in this area. There’s lots of academics that are committed to it; there’s lots of people that are lived experience experts; there’s PPI experts. I heard recently that the NIHR, through their Breaking Boundaries review, you know are running some events where they’re bringing everybody together that does PPI within NIHR lots of them, lots and lots and lots. There’s loads of expertise out there. So how do we harness all that expertise and have some leadership, have real key leadership and networking around it? Because at the moment there aren’t natural networks that you can join to share your expertise and talk to other people in the field and say, “Oh we’re doing this over here in mental health; what’s happening in diabetes?” I don’t know. I mean I run a charity that’s like to supposedly trying to be an expert in this and I don’t know what’s happening in lots of other fields and that’s a challenge for me, I need to find out.

But there aren’t natural networks that you join and I think that something could be done because it feels that if we’re saying that PPI is really vital to research, it’s a specialism and specialisms need leadership and they need training and they need support and they can’t grow without that. It’s all, it’s here, there, it’s all bits and bobs and its people doing it in their evenings.

It’s become to a; it’s a level now where it’s more than that.

I think people will probably talk to you about, you know there’s great concern that the majority of people working in PPI are in quite junior positions, and low pay; maybe on quite flexible contracts, don’t have any job certainty and the people that get involved, the public that start engaging in research projects and take on PPI roles it’s, you know it’s a meeting here, a meeting there. So you are, it’s, you know it’s still at this stage of development and it’s trying to work out. You don’t want to strangle all of that and it’s great that you’ve got all this innovation going on but how do we then take that forward as a whole body of work and as an expertise area and develop it it needs structure and leadership.

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?

So the key in this study is that the moment we get it we wanted to know whether it made any difference being interviewed by a peer researcher or not. So we did a randomised three-arm bit of the study to start with. We had people who were sent a consent form which said you’re going to be interviewed by a researcher, people who were sent a consent form said you’d going to be interviewed by a researcher who’s got a mental health problem, and people who were sent a consent form that said that they were interviewed by a researcher, it wasn’t said they were a person with mental health problems but when they were interviewed the person disclosed they had mental health problems.

And we looked at response rates and we looked at impact on the interview etc. and data and we found nothing. We found it didn’t make a difference and one of the reasons it might not have made a difference is it because it was a structured interview and over the phone the rapport that you build. It could have been the methodology. It could also have been that the people that were the non-peer researchers had kind of been trained to a degree that there wasn’t enough difference between them so we couldn’t tell whether there was any difference between this or not. So basically we decided we were just going to employ peer researchers.

In terms of the resources that you need to do good PPI or to involve people, or the resources that researchers in general need, what do you think they are?

Training. At one level there is, you can read guidance, can’t you? There’s lots of guidance out there but, you kind of need on the job training. You need to be inspired that it can make a difference. It starts in, I don’t know, it’s nurses, OTs, social workers, psychiatrists, social scientists you name it, whoever it is that’s going out and carrying out research. It feels that from the very basic level of doing Masters, you know actually under-graduate under-graduate, Masters, PhDs need to have modules in there that show the value, if you’re doing health disciplines, the value of PPI because I think that actually we’re missing a trick by not training and skilling people up from the very earliest point.

And it’s easy to say, “Oh you know there’s not enough room and I haven’t got, you know in the PhD, you know it’s just too complicated; supervisors trying to make sure you reach the goalposts and don’t add any complications in it and do you really need to collect extra data?” So adding in that sort of layer they might be thinking… But if we’re really thinking about trying to transform research and do best practice around research, and if it’s a funding requirement later down the line, why aren’t we training people to do it at the very, very beginning and making it a requirement at the beginning?’

So in terms of what do people need I think that, you know they. Mentoring, supervision training is really, really important and it’s through that that I think people can become inspired and seeing the real potential, and lots of sceptics are converted as it were, when they get involved in projects where they feel it does make a difference.

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.

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.

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.”

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.