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Researchers' experiences of patient & public involvement

Embedding patient and public involvement in research

Most researchers we talked to agreed that patient and public involvement has become much more established as a way of working over the last few years, but that there is still some way to go before it becomes truly embedded in research culture. People’s perceptions varied about how well rooted it is currently and at what level. Some argued that in their local team it was just ‘the way we do things here’, but the wider department or university might still not be fully on board. Through the interviews a picture emerged of a somewhat piecemeal approach to involvement. Some had found a very different culture when they moved job from one organisation to another, even within the same university. It was also pointed out that the expectation of involvement is better established within the NIHR (National Institute for Health Research) than some other funders – and even within NIHR there seemed to be varying degrees of interest from the different funding streams.

 

At the NIHR INVOLVE conference everyone is keen on involvement. Hayley feels she should promote it to those not already on board and explain how to embed it culturally.

At the NIHR INVOLVE conference everyone is keen on involvement. Hayley feels she should promote it to those not already on board and explain how to embed it culturally.

Age at interview: 30
Sex: Female
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Any other costs to researchers? No. What I kind of think about though is I find that there are, for researchers there are – when I go to INVOLVE conferences and all these conferences, there are a group of researchers who are very, very into involvement and they spend all their time thinking about involvement and research and involvement and undertaking involvement. And then they go to these conferences and they present to everybody else who was already doing that involvement work and everyone's like, "Yes this is what should be happening." What I'm finding more and more difficult and I suppose I took myself out of my comfort zone last year, because I've tended to do presentations and workshops in the INVOLVE conference and in conferences where people are going to be susceptible to what I'm saying; is that actually went to the UK society for behavioural medicine and run a workshop about our research advisory group with a group of researchers who don’t undertake involvement very often and it's a very alien concept to them. 

So I think, thinking about the benefits and the costs I think one of the things we should be trying to do, as those people who are into involvement or involvement co-ordinators, is promoting it to other people outside of the people who already are on-board with us – stop talking to the people who are already converted and try and get it out there a little bit more. But I feel it's that group of researchers who don’t see the benefits and think there's too much costs to warrant the benefits. So yeah I think maybe a bit more of a focus either nationally or we need to think more about how we get it so it's just part of people's practice. Because I think there's a; the majority I would say of researchers, are not doing involvement so.

But interesting that the National Institute for Health Research have put out a consultation and it is closed now but it was called Breaking Boundaries I think. And they asked people to write in about what has been positives about their groups and, again we found that we wanted to put in something a little bit different to maybe what they were asking and I don’t know how this is going to fall into; how they’ll take on our feedback and think OK. Because what we talked a lot about was not about – and maybe people expected us to write a lot about the young people's group and say, "These are the benefits for the young people and these are the benefits for the researchers." Instead we focused very much on how we've set up culturally within the Centre and how we've looked at, not just the individual level needs of the young people and the researchers etc., but also what do we need to do at a research centre level to make sure people are doing public involvement. 

So again it's about setting up those meetings those research ideas meetings – I'm on those meetings. There's also an expectation that all the bids which kind of go in that public involvement is featured in them. Either, or both – you’ve done public involvement in your bid development and how you're going to do in the future – or if there maybe was any public involvement how you're going to do it in the future. And we're trying to get a system where all those bids will go to our research centre manager and they will check that there is public involvement costs in there. If there's no costs in there it'll be, "Have you spoken to Hayley, because really we should be putting public involvement in here?" And that is kind of a way of us saying, "Right in the first instance when people have research ideas, we're going to try and get them through this group." 
 

NIHR and INVOLVE have played a major role in supporting PPI, but it features more in some funding streams than others. Suzanne argues that we need a more joined up approach.

NIHR and INVOLVE have played a major role in supporting PPI, but it features more in some funding streams than others. Suzanne argues that we need a more joined up approach.

Age at interview: 40
Sex: Female
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It's very much something that you know INVOLVE I think have, you know, have made huge kind of leaps forward within the community as well. 

But I do think there's still quite a lot of work to be done and I think it's sort of, again it's this issue of there being pockets of, you know, I don’t want to say go back, so pockets of activity, but not, nothing kind of joined up at the moment and I think that’s a real issue and I think it's trying to join up that activity. Maybe that’s something, you know, they could do a bit more of but also, you know, you know there's obviously stuff, you know NIHR obviously, you know, very behind all of this – I think that’s a real positive but I'm sure there's probably more that they could do as well. And actually making it more of a priority I guess because there's only certain funding streams where it seems to be more highlighted than others, like Research for Patient Benefit and I think the other one, used to be SDO [Service Delivery and Organisation], it's something else now, Health Services Delivery [Health Services and Delivery Research] and something, anyway. But the, where it's an issue where some of the others like HTA [Health Technology Assessment] and, you know, because I can see a huge, there's a huge area around patient involvement in clinical trials and I'm not entirely sure that’s been focused on as much as it could have been you know. 
 

Even in a generally positive culture, there will be varying levels of awareness of and commitment to involvement.

Even in a generally positive culture, there will be varying levels of awareness of and commitment to involvement.

Age at interview: 49
Sex: Male
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I have to say if we were to answer more realistically there are, I don’t know, a hundred odd research projects that are in some way or other associated with [CLAHRC], the levels and amounts of Patient Public Involvement in all those projects will be uneven and some, some will be doing it really well and some will be doing it less well. Some people will be doing it less well because they can’t necessarily see the relevance to their research so we know some people in the past have said what’s the point of doing PPI in a systematic review we had a discussion about that and actually we’re doing a workshop on that, the INVOLVE conference coming up in November about Patient Public Involvement and systematic results. So people genuinely, I don’t think it’s relevant, some people just I’m so busy really I haven’t got lots of time and resources to do this, some people may be a bit hostile and think it’s just, you know, I work with patients all the time I know what they think I don’t need a Patient Public Involvement Group. I think the majority of people are probably somewhere in the middle not really knowing why. So I think we have, actually I do think we have got a very positive culture and I do, as I said I do think people routinely come to the PPI team to ask for involvement in a way that perhaps doesn’t happen elsewhere but I don’t want to make out that it’s wonderful.
 

The backing and support of David’s local Biomedical Research Centre helps keep involvement high on the agenda and makes it more likely to succeed.

The backing and support of David’s local Biomedical Research Centre helps keep involvement high on the agenda and makes it more likely to succeed.

Age at interview: 49
Sex: Male
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Just thinking back to sort of the doing PPI, when you first started doing it and, you know sort of your journey through to now, has it been easy to integrate as part of your job?

Well it has relatively been – for me, with being you know a trialist and running a clinical trial's unit, not so bad because it's actually a vital component of it. Time wise – no not necessarily. Getting people together and all the right time is very difficult. We also have a policy where you have to have PPI for certain, trials steering committee for instance, and if you don’t have representation there that committee can go ahead. Because you know the patients have, you know got time themselves, they can't give up reams of time or to come and service your needs. In the main I would say probably yes. Things like the BRC have been very helpful though. When you get a ground swell of support for these things - it's funny how things get support and things don’t. It could have been something very different [subject] in genetics, coding or something like that. But at the moment PPI's considered to be very important, correctly in my opinion, but not in everybody's opinion. And it's got a lot of backing and support behind it and things like the biomedical research centre unit, of which we are here, puts funds into that and makes sure it stays quite high on the agenda. When that happens in an academic institution like this, and linked to the hospital, then you’ve probably got more likelihood of it being successful, and it not impeding your day to day work as much as it might do.
A few people such as Catherine felt it was not very embedded at all locally; she said, ‘I think I’m just doing it on my own really… I’m hoping people can be persuaded that it can actually be useful rather than just something we have to do, but just wait and see.’ People still came up against instances of indifference, tokenism or outright hostility (see ‘Colleagues’ attitudes to patient and public involvement’). People felt that it was important for senior staff to demonstrate their commitment to involvement. Some researchers acknowledged that involvement wasn’t always fully embedded in their own personal practice, let alone anyone else’s.
 

Alison says she still has to constantly remind herself about involvement. It’s high on funders’ agenda but she is not always sure it’s as valuable as everyone says.

Alison says she still has to constantly remind herself about involvement. It’s high on funders’ agenda but she is not always sure it’s as valuable as everyone says.

Age at interview: 47
Sex: Female
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And is there something that – does this compete with other things that you could be doing with your time or compete with other things that maybe benefit your career more?

Yes, but I don’t really think of it in those terms. Because you, it's become essential now so you can't really think of it as getting in the way of doing other stuff because it has got to be integral yeah.

And is it easy for it be integral?

Not really no, no. It's still a, I still have to sort of constantly remind myself, 'Oh yeah I need to do that; I need to think about that.' And yet for all the reasons we're talking about before about the mechanics of identifying people and having appropriate structure and all the rest of it, there's a lot of thought needs to go into that and that sort of flexibility and responsiveness and all the rest of it yeah. And I think sometimes we sort of try to take what appears to be the easy routes so, you know, sometimes you're seeing examples where people sort of say, "Oh yeah we're doing user involvement." Actually it's not user involvement it's involvement of a professional who works with users, you know someone speaking on their behalf which is quite a different thing. Or it's a one way communication. You know you tell them what's going on but actually there's no scope for anything to come back. So all those things take effort to make sure you're not caught into those traps.

…And so all the PPI that you have done so far, is it something you feel confident about embedding in your research and thinking about those sort of soft skills and the people skills?

Yeah I guess so. I feel fairly confident in being able to carry on doing the kind of things we've done up to now. But not necessarily confident that we're doing the most effective or productive thing that we could be doing I guess. And I think some of that questioning is not, it's simply because there is no ideal model, there is no perfect answer and actually the whole thing is a compromise and fundamentally limited. And that I think at the moment because there's such, it's so high on the agenda, funders and all sorts of people I think there is a touch of Emperor's new clothes going on, that this is so valuable, important and useful, [inaudible]. Well that’s one good thing to do but it's not, in reality is not actually that valuable, important and useful – that is quite heavy as well. But I think it's definitely a sort of tacit consensus that it's all absolutely great and people don’t really question it now.
A common concern was that, although the NIHR, NIHR INVOLVE and Involving People in Wales have done a lot to promote involvement, there was a danger of duplication and fragmentation across lots of different parts of the NIHR, and a need for stronger leadership and training opportunities (see ‘Training needs for involvement’). At the same time, Sabi argued that we cannot leave everything to the NIHR. She and others identified the mismatch between academic career drivers and the principles of involvement as an underlying problem – ‘the ‘publish or perish’ culture, as Pam described it. These are amongst the issues raised in the recent ‘Breaking Boundaries’ review and the subsequent NIHR involvement strategy, ‘Going the Extra Mile’ (see ‘Resources’ section).  The strategy recognises the need for a whole-system change and approach, and that many of the problems and their solutions are to do with organisational culture.
 

We have made great strides with involvement but the case is still being made. There is a role for NIHR to bring greater coordination, leadership and sharing of expertise.

We have made great strides with involvement but the case is still being made. There is a role for NIHR to bring greater coordination, leadership and sharing of expertise.

Age at interview: 42
Sex: Female
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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.
 

Academics are judged by their grants and publications, not by their involvement work. NIHR INVOLVE is trying to change the culture but they can’t do it all.

Academics are judged by their grants and publications, not by their involvement work. NIHR INVOLVE is trying to change the culture but they can’t do it all.

Age at interview: 50
Sex: Female
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I don’t know whether, you know, anybody can say anything to people who are so sceptical that will make them change their minds because, you know, if you have a mind-set which is – “I'm the expert, I know what I'm doing, I don’t want any lay person interfering with my work” – then you know it's very hard to break through. I suppose it is around using for a, that people use all the time in which, in which examples of good PPI practice and examples of how things have made a difference, you know had positive outcomes. It can be disseminated and celebrated – I suppose that’s not happening enough you know if you have academics who get, who'll get valued on the basis of their research income, their research publications, possibly, you know, their teaching – number of PhD students. 

If there is no way in which PPI is valued in any of those then people won't respond in a positive way or do it or even consider that there might be something in it because they're not, that work is not acknowledged. People who do PPI tend to be working, you know, in their own time – they're doing things independently creative. PPI is expensive so that’s why often the costs are sort of pushed down to keep the research costs and total down. You know, there are so many barriers and it's a surprise that people do it anyway because it isn’t valued usually by their institution. There is no way it can be celebrated. You know I haven’t come across any awards that are being given for, for good PPI practice. INVOLVE is working very hard but they can't do it all. You know they're doing a fantastic job but their remit is so huge and it can't be the NIHR who does it all, you know. It needs to be something that's celebrated much more widely and acknowledged and recognised much more widely than it currently is. 

I don’t think you can say anything to one individual to make them change their mind. You know, it's got to be in the water, it's got to be in the discourse and that will make people think, “Oh hang on I used that about PPI, but you know maybe there's something in it.” And you know, I have spoken to lots of people who have said to me, "Oh I've always been a real sceptic and then such and such happened," or, "I read this, such and such," or, "I heard you speak about something," and, and that’s what just starts people thinking, “Oh maybe there is something, there is a value here that I hadn’t previously recognised.” And people who, and often people have to demonstrate, you know, some PPI involvement, and they will opt for something tokenistic and it's, if you get the chance at that point to say, "Oh I see you're doing such and such, I wonder had you considered?" And then if somebody is receptive they might say, "Oh yeah," or member of their team, you know, you might just, you might just stimulate their thinking and their creativity. But, you know, there is no magic bullet where you can turn a sceptic into somebody who fully embraces PPI in their work.
 

The combination of NIHR pressure and younger researchers coming through is changing attitudes, but involvement should feature in formal assessments of research excellence.

The combination of NIHR pressure and younger researchers coming through is changing attitudes, but involvement should feature in formal assessments of research excellence.

Age at interview: 46
Sex: Female
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What do I see for the future of PPI? I mean I think that the NIHR are such a strong driver in the research environment, the medical research environment in the UK that, whatever the NIHR is pushing will happen. I think lots of group/applications are still paying lip service to PPI at the moment. I think that will carry on changing and I am, I mean, as with many areas I'm very hopeful about the junior level of researchers, the junior level of clinical staff who will come through a bit like me where this is normality. So I think it will continue to become more and more normality and unless the NIHR changes dramatically or it doesn’t get sufficient funding in the next spending review then I think that will carry on changing. It'll take a while for the dinosaurs to get out the top end. And a very interesting point about whether something in the REF [Research Excellence Framework] you know, can be, you know – obviously there's more of a, more of a steer in the REF in terms of towards impact. So whether you can link the added value of PPI to an impact I'm not sure. 
 

Jim feels we need to pay more attention to different levels of organisational change. Peer persuasion is important (though researchers who are too passionate can put others off).

Jim feels we need to pay more attention to different levels of organisational change. Peer persuasion is important (though researchers who are too passionate can put others off).

Age at interview: 52
Sex: Male
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The other real complication is – I've thought for a long time about public involvement, looking at it and thinking about it as a change management process. If we wish to see it as being normal practice and Sally Davies, the director of R&D for the NHS, has gone public and had it written down several times that she wants it to be the rule not the exception, and nobody would disagree with that. But, in order to do that you have to change behaviour, so it's a combination of individual and organisational behavioural change and change doesn’t happen, it has to be made to happen and it's a balance of drivers and barriers. And public involvement isn't something that would just naturally happen because it's great, because it means research takes longer; it's a bit more complicated; there's another set of people to be involved; it costs more. There's lots of barriers to it and when the barriers outweigh the drivers, change doesn’t happen naturally so you need to push change, and it's been quite frustrating for me to see how little attention has been put on, 'How do we change people's minds, how do we change people's behaviours, what are the different approaches to getting more people to be involved?' So that’s a complication and it seems to get more complicated the more we, the more people get involved. And a number of people who are really passionate about involvement, particularly researchers who are passionate about involvement, get so passionate about it they think it's everybody does it and they don’t realise that everybody doesn’t and they're not very good at encouraging change in their peers, which I find quite odd and quite frustrating at times. But they are probably the most effective change agents because people will look up to other people who do something when they see it's effective, and they’ll be far more effective than somebody like I can be working for an authoritarian organisation. So, you need a mixture of top down and bottom up, but actually the peer to peer influences; you know if you look at all sorts of things where people have changed behaviour, the reasons, ultimately the reasons they've changed behaviour is because their peers have done it.

And clinical audit is quite an interesting example. Because I remember, when I started at the Regional Health Authority in 1992, clinical audit was just coming in at the same time that NHS consumers in research had just started and the concept of involving patients and the public came in. Twenty two years on, patient and public involvement is not normal practice but clinical audit is and was ten years ago. In fact, it probably only took five years to embed and part of the reason for that, despite initial vehement, professional resistance to it, was peer to peer pressure and continuous rounds of audit led to, you know those who were resistant to change being isolated and challenged by their peers who eventually changed their minds and they did it. So there was a top down dictat but ultimately it was the peer to peer pressure and influence that brought about the change. But it had that bottom up, top down mixture which we've not had in public involvement.
 

Stuart says the NIHR has done ‘a fabulous job’ in promoting involvement. Emphasis on ‘impact’ in assessing research excellence has also helped universities prioritise it.

Stuart says the NIHR has done ‘a fabulous job’ in promoting involvement. Emphasis on ‘impact’ in assessing research excellence has also helped universities prioritise it.

Age at interview: 59
Sex: Male
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You go to the system level because that’s what drives organisations, in part of course they’re driven by the individuals and how they want to be but they’re also driven by what the system is. So the NIHR has been fantastic, I mean the NIHR has been one of the great advances in research for me in this country absolutely fabulous great people involved and they’ve done a fabulous job and they have become powerful and committed advocates for this approach. 

And they are the big funders, you know, they spend a billion pounds a year on medical research. And provided they carry on the system level saying you will do this, great people will do it. at the same time I think partly through advocacy from people like Sally Davies and Russell Hamilton they’ve been I think very influential in setting the research excellence framework around impact and if that continues and if the Universities and other organisations see this as being a way of scoring brownie points they’ll carry on doing it. So it’s very important that we set up a system so that the organisations can do this but at the same time we also have to convince the individual researchers.
Most researchers we talked to believed involvement was here to stay and would go from strength to strength, eventually becoming the ‘default setting’, but there was also a minority view that it was something of a fad that might eventually disappear, and some feared that it might not survive if its cost-effectiveness remains unproven.
 

Sarah A reflects on two possible futures for PPI. It may become a normal part of practice, or it may fall by the wayside if people think it doesn’t work.

Sarah A reflects on two possible futures for PPI. It may become a normal part of practice, or it may fall by the wayside if people think it doesn’t work.

Age at interview: 32
Sex: Female
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The future of PPI? Gosh wow mm. I think I can envision kind of two possible futures so there's the dystopian view and then the - I think my worry is that, you know because PPI, the idea of involving participants in things and having more accountability and transparency in what we do, that’s not new by any, you know, this stuff's been trotted out before and then doesn’t stick and then gets re-labelled as something else and then doesn’t stick. And now it's out and it's labelled as PPI and I think there is a risk that, again, it just won't stick. It will get seen as, 'Oh well that was fashionable to do,' you know, back then and, but then it didn’t work, it didn’t work. And I think, you know, I think that would be a great shame. And I think for the members of the public who've put a lot into it I think that would, you know, that would be awful. 

And that partly I think is why we do need to start measuring things and sharing outputs and stuff and just start making sure it gets seen before it just kind of crumbles away and becomes something you don’t bother doing anymore.

…I suppose what I'm hoping will happen I think if, I think if it can be methodologically developed more in terms of what you measure, how you measure, how you report it, how it contributes to the sort of wider issues in terms of getting stuff implemented and doing work that is of importance and things. Then I think perhaps people will start taking it more seriously as a research activity almost, or as an activity that feeds research and that is important to the research world and to us as researchers and I hope then it would be sustained because it would have sort of legitimacy and maybe then there could be people who, you know, the way you specialise in qualitative research and mental health and PPI and it becomes something that is, you know, part of your repertoire but acknowledging that it is a complicated issue, it's not just something you give to the youngest member of the team, you, there are specialists in it . Yeah I suppose that, that probably sounds really selfish because it really sounds like I'm saying, "I'd quite like it if I can go into a role as PPI specialist." 

But even I think yeah, I think if it got more, if it had that legitimacy of being seen as a serious research endeavour then I think people would throw more money at it; I think PIs would care more about it and I think hopefully that would cycle that by taking it more seriously it's able to show more serious outcomes and it's able to demonstrate influence or value in some way, whether that’s an intrinsic value or in terms of measureable outputs and I would hope then that it would become - At the moment I think it's a self-defeating cycle that people don’t do it properly, they don’t report it and then when you ask people about it they go, "Well it's rubbish isn’t it?" and it's kind of, “Well of course it was rubbish, you set it up to fail essentially” and so it's this thing of giving it a fair crack of the whip I think to do it properly and in a sound way and a transparent way to let it happen and see if it can make an contribution and then, you know, then if it is absolute rubbish then you know. And that’s one take on it but at the moment I think the future of it I hope would just be that people start taking it seriously and so we start looking at it, genuinely looking at it as part of research and what it contributes yeah [laughs]. It's a tough question.
 

PPI is still a ‘sub-culture’. To survive it needs to demonstrate impact and be seen as part of research excellence. Alice hopes it is here to stay but the future is uncertain.

PPI is still a ‘sub-culture’. To survive it needs to demonstrate impact and be seen as part of research excellence. Alice hopes it is here to stay but the future is uncertain.

Age at interview: 26
Sex: Female
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I feel like there's a very specific PPI kind of sub-culture or like PPI kind of field whereas it should be in all the fields. It should be something that everybody just, where appropriate, has going on but that doesn’t really seem to be the case. It seems very - like there are certain groups or certain established PPI community and people could be doing very similar work to you but not be in that and be really surprised at how you do your work when actually it's still child health and they're surprised that you have so much influence from ‘lay people’.

…What do you think the future is for PPI?

I think that getting the impact thing figured out is going to be kind of a decider because lots of things like to be decided on what the impact is or what the outcome is. People like things that they can measure so they can quantify what they're going to – it all comes down to resources I sometimes think and splitting up those resources fairly, and having something that you can't measure makes that difficult for economists really. So I think that’s going to continue to be a tricky thing. I think it's going to become more important – you know, like with REF it's become a much bigger percentage than it was previously. No sorry it's not PPI, its REF that’s become bigger – that PPI is tied in with that, I think all of that is going to become bigger. I would like to think that more kind of user groups will be set up using core funding because I think that’s quite a handy way of doing it because in many cases you have a grant application which you will hope will get you some money to do something and you need to, if you want to involve people in the most meaningful way, I think you need to do it as early as possible. 

But to do that you need the money and to get the money you need to have the grant, so it's very hard to find – there isn’t, there doesn’t seem to be a kind of established fund or, you know, I know of small funds here and there like the University has I think all the catalyst fund which is awards a small amount of money to people to pursue their PPI activities. But I'd like to think there would be a kind of bigger, maybe national thing where people could apply for a really small amount of money when they're just getting things going so that it could be most meaningful. But again, I don’t think that would happen unless you could prove that it was effective because otherwise you could just be wasting money on something that isn’t having an impact. So I think the future is uncertain [laughs] but it's not going to go away, it's only going to get better yeah. I think it’s going stay now it's here. I don’t think there’ll be a time when people go, "I don’t think we need to bother with that PPI anymore." I hope not anyway.
 

Anne feels PPI has gathered a lot of momentum but may end up falling out of fashion again.

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Anne feels PPI has gathered a lot of momentum but may end up falling out of fashion again.

Age at interview: 32
Sex: Female
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What do you see for the future of PPI?

I'm not sure where it's going to go to be honest because I think it's going more towards, like I said, I think it's tipping in a way that I don’t think people anticipated it would have tipped. And it's - I don’t know. Why hire research teams? Go out and grab a load of patients out of a hospital ward, get them to come and do a research. You know I don’t, in the future, I don’t know how it's going to go.

Do you think it might burn itself out?

Yeah potentially. Because like things grow in fashion, don’t they? Like impact is a good thing now, isn’t it? Everything's about impact. Impact within five years of research being published, like demonstrable impact. And like, you know, even ten years ago that wasn’t a big thing. So like fashions wax and wane, so I think it might recede maybe in the future. I don’t know. I'm not sure but I think it is just, I think it's become like a lorry that they can't stop and it's just gaining ever more speed, and no-one seems to be able to put the brakes on it.
Tom and Fiona expressed the view that the ultimate test will be how truly patient-led research is in future.
 

Tom sees a future where research is fully led by patients - and they have to remember to involve clinicians.

Tom sees a future where research is fully led by patients - and they have to remember to involve clinicians.

Age at interview: 54
Sex: Male
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I think there’ll be more research studies which are patient and carer initiated with the subsequent involvement of clinicians in you know, designing the study and so on. And we might even get to the stage that we were in clinical research and mental health some years ago, where the involvement of clinicians becomes sort of a bit of an afterthought and we’ll have to start requiring patient and carers who are involved in research to do more than just involve clinicians in their research in a tokenistic way.
 

Fiona thinks researchers are embracing involvement and it’s just part of what she does. But we’ll know it’s embedded when we stop talking about it, and research ideas come from patients.

Fiona thinks researchers are embracing involvement and it’s just part of what she does. But we’ll know it’s embedded when we stop talking about it, and research ideas come from patients.

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I would like to think it's because researchers really do see the value of it. I suspect for some it's because they just have to do it. You know, you can't do a grant application these days without having thought about PPI, and it's not throw away remarks on the form because, certainly for example NIHR, they have lay members reviewing those application forms, they can spot a fake ten miles off, so, you know, you can't just fob off a section on there and copy and paste and that sort of thing. So on the basis that that's enforced and rightly enforced within those applications, people are having to think about it. But I would really like to think that they are embracing it, not just doing it for the sake of it. But I'm lucky. The people I work with really seem to be on-board. Either they're really good at lying - but you know, they really genuinely seem to have taken in on-board. You know I can take you down the corridor here, introduce you to people, and they're all a similar mind-set.

…I mean I just, it's so part of what I do now. With hindsight I would love to have had a far more formal involvement of PPI early on, but that hindsight's wonderful, and it just didn't formally exist back then, I mean we're talking twenty years ago. I would love to have far more involved but it's difficult to get people involved because it means them giving up their time and they've got other things going on in their lives as well and it's appreciating that. And I suppose I'd like to make sure that those that are involved know just how much they are appreciated but it's how you do that in a nice way. But I don't regret anything I've done, I just wish I'd done it earlier.

What's the future of PPI? 

Well, we need to be moving on from conversations like this - It should just be a given, and at the time that we stop talking about ‘it needs to be embedded’ and all this sort of thing, then I think we'll be there. In fact what we really need to see I think as well is that the research coming from PPI is what we do; that the ideas aren't coming from us and we're asking whether this is OK – there needs to be a switch round. The two have to come together and I don't actually think one is more important than the other. Researchers have some very, very good ideas and that needs to happen, because there's some very, very clever people who come up with a complete spin on thing, and that really is important to go forward. But, at the same time, the patients themselves need to be saying, you know, this is important and the research needs to equally come from that side. It needs to be a partnership.

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