Researchers' experiences of patient & public involvement

Messages to the NHS, universities and research funders about patient and public involvement

As we discuss elsewhere (‘Organisational support and leadership for patient and public involvement’ and ‘Embedding patient and public involvement in research’), researchers talked about organisational and policy drivers in favour of involvement. Here we summarise messages researchers wanted to get across to a range of organisations, including the NHS, research funders and universities.

The NHS National Institute for Health Research was felt to be a major driving force in favour of involvement, and one which other research funders could learn from. In Wales, Involving People was also felt to have played an important role. However, researchers felt there was still a long way to go in ensuring that all grant applications are written with patient and public input at the early stages and include meaningful plans for continued involvement throughout the study, and that sufficient funding for involvement plans is seen as a legitimate part of any bid (see also ‘Embedding patient and public involvement in research’). The role of universities in supporting infrastructure and the problems of short-term funding and short-term contracts were also raised (see also ‘Organisational support and leadership for patient and 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.

View full profile

Age at interview: 59

Sex: Male

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

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.

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.

View full profile

Age at interview: 40

Sex: Female

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

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.

NIHR’s insistence on PPI is great, but some funders still try to trim PPI costs. Short-term grant-related funding is not ideal; universities should invest in the infrastructure.

View full profile

Age at interview: 51

Sex: Female

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

Inevitably we never have enough resources to do what we want and I think it's particularly true for PPI because it is part of that kind of invisible work that you need to do to support a project. And it's only really beginning to be recognised how much that needs to be part of the bid. So when you put in for funding, getting that, you know, embedded in there at the right levels I think is still quite difficult and I think it's the thing that, you know, people don’t trim down how much you pay an academic, to fit a bid. They might trim down how much time you can give to it, but they will trim down how much you pay a parent or a patient to participate and that doesn’t seem quite fair to me.

If you’ve got a research assistant who is employed for a project who can do that for you, that’s great, but the project ends – I'm still running the parent panel and my research assistant's gone because, you know, the way in which research assistants are paid from projects rather than employed on a long term contract. So then you're left doing it yourself and it is really hard to keep it going then because it's on top of whatever else you're doing. And it's not funded. So you do end up trying to hold onto contacts and make sure they're up to date, and I have to be quite honest and say that, you know, it doesn’t happen as often as it should do when I haven’t got a research assistant to help. But again it's about funding, really, because if you’ve got the funding for someone to do that - I mean, wouldn’t it be lovely if you could say every university must fund someone to manage parent and patient involvement in research? That would be fab. I don’t think it's going to happen in the short term at least, but it would be really nice if you could. I mean, it's great now that the NIHR are saying that you must state exactly what the level of PPI is for each project in terms of exactly how people have been involved and how you anticipate they’ll be involved moving forward with the project – I think that’s really positive. I don’t know - how much that’s actually happening in terms of the reality of people's involvement. It's not reflected yet to any large degree in the research reports. There are some that talk a lot about PPI but you don’t see it as a key part of every research report.

But I suppose we're still in the game of convincing people, you know, I think we are convincing people but I don’t think we've really got it embedded yet in the culture. I think it is about making it mandatory in research, reporting in research, bidding, you know. But I think we ought to have really quite clear recommendations that every project must have funding in it to support PPI, and I don’t think that’s clear enough yet.

Alice and Catherine worried about how funders judge grant applications and how they assess whether involvement plans are appropriate.

Alice worries that funders may overlook projects which are valuable but do not lend themselves to PPI. It shouldn’t be forced into everything.

View full profile

Age at interview: 26

Sex: Female

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

What I mean is there might be other research projects that are equally worthy of funding that don’t have the scope for PPI. Things where there just isn’t so much capacity to get involved – for instance using really large routinely collected data if you're pretty certain and that you know what you need to do. There may not be so much scope for PPI. So in my current job I use data from the CPRD database – it's routinely collected data from GP surgeries to look at cancer outcomes from symptoms in primary care. So you know since I've been here I have been trying to think actually of how I can involve people in this because of my previous job. But really it's very stats based; it's fairly inaccessible. We already know what we need to do to find out what we need to find out and we already know what we need to find out. So I mean I'm happy to be corrected when we've finished the interview if you can think of a way I can involve people in this but... So from that point of view, from a funder's point of view, my project for example, doesn’t really have any PPI. But if the funders are placing a very big emphasis on that they may overlook other projects that don’t have such a PPI influence but may not be important.

…Having seen real life examples in my work I can see where we should be doing it but I don’t think we should be forcing it down into everything, every aspect of every bit of health research because I think some things aren’t suited to it necessarily - I may be wrong.

Catherine worries that NIHR funder reviews of PPI plans can be very inconsistent. One reviewer suggested she was not qualified to lead PPI. There is a lack of time and infrastructure to support her.

Text only

Read below

Catherine worries that NIHR funder reviews of PPI plans can be very inconsistent. One reviewer suggested she was not qualified to lead PPI. There is a lack of time and infrastructure to support her.

View full profile

Age at interview: 29

Sex: Female

See full profile

HIDE TEXT

PRINT TRANSCRIPT

Well it's funny because since that one as well I've put in another – I've been involved in another grant for the same NIHR and put in a very similar funding, a very similar PPI strategy for that. And so both of them have been through two rounds of review and the feedback has been totally different. So at first it was really positive feedback –“really welcome the PPI strategy”. I've had that quite a lot where people have said - because obviously each time there's multiple reviewers as well, so there's been a lot of different reviews on it, and so a lot of people have said they think it's really well thought out and good and there's a good amount of money given to it and that it's obviously not a box-ticking thing. Whereas the exact same application from another reviewer, they can say it's not enough money, it's not well thought through, it's not enough attention given to it. So it's really hard to say what the consensus is. I think it's a bit, yeah, totally varied depending on the reviewers: some have loved it and some have thought its bad for just the same thing, so. And I think the strangest comment I had - well one that I was most surprised at - was one reviewer said the person who would be leading the PPI, which would be me, has got no training and nothing on their CV to qualify them to do it, which I found the most surprising kind of comment. But maybe we should have people more trained in it, but at the moment I don’t see that there are people really, many people, who are trained to be able to have a trained PPI person on every grant application put in.

Yeah. And why did it surprise you that comment?

I guess because in the department where I work there's no PPI expertise that I know. There's no-one I can go to get any help on PPI, and in fact people have more, have come to me to ask for advice. And I think I've kind of been pigeonholed a little bit into a PPI person, which I find annoying because I think it's something that everyone should know what it is and be able to do it. I don’t think that because I've done it for one application people should be coming and saying, "How do you do PPI? Or can I use your PPI ideas?" you know. I guess I was just surprised because I can't imagine there's many people who are well trained in PPI – I mean, I've been to a couple of courses on it and read up on it, which I think is more than what most people are.

So for two of the proposals that I've been involved in where I have been leading the PPI I would be expected to lead the PPI if we got the grant, but I've got a very, very low amount of time, proportion of time, which is always a limitation in any funding grant, isn’t it? Like the amount of time that each person's given is never as much as they would want, but I haven’t got enough time really to even do the studies that I'll be doing without any PPI and then leading PPI on top of that is going to be especially difficult within the time. Because it is another separate thing, but I think although it's contributing to all your research you're doing all the things you would be doing without PPI and then that’s on top, isn’t it? And I think it's adding a whole other layer to things which is going to improve it and, but things are just going to take longer.

But yeah to have it more of an infrastructure I guess is what I'm saying. In fact that’s something that we haven’t talked about is that there's some of my colleagues or senior people in my department have suggested that maybe we'll have a PPI group or a big department-wide PPI set of people that we could dip into and out of. And on the one hand I think that’s good because then there would be some infrastructure there – there'd be someone managing it, there'd be a way to say, “I want to tap into that PPI group”. So I think that, on the one hand, is really good but on the other hand, like I was saying before, are those people going to become experts in PPI and then are they actually going to be doing what you want of them? And then if you want specific patient groups I suppose you'd need to go to specific other places to get them, but I guess it would be recognition then that people are putting their resources into the PPI infrastructure.

There was some discussion of the ‘impact’ agenda – whereby university research outputs are now judged partly on their impact as well as their research quality, for the Research Excellence Framework or REF. (Impact for REF was defined by the Higher Education Funding Council for England as ‘an effect on, change or benefit to the economy, society, culture, public policy or services, health, the environment or quality of life, beyond academia’). While Stuart thought this focus on the wider usefulness of research would encourage universities to be positive about patient involvement, Sergio was concerned that universities and funders should not take too narrow a view of what is ‘useful’.

Emphasis on ‘impact’ in assessing research excellence helps universities prioritise involvement despite resource pressures. ‘Impact’ should not just be about economic impact.

View full profile

Age at interview: 59

Sex: Male

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

For the Universities it’s a bit more complicated obviously Universities are involved in playing games again they should in my view start with an altruistic view of the world and to some extent they do but again, you know, the environment that Universities operate in this country has changed dramatically in the last few years our current Government have dramatically decreased the real resources available through a sort to Universities have effectively semi privatised them and are making them play what I think are stupid games. In that context obviously if the Universities, if you spend money on involving people you’re not spending it on other things, the only saving grace as is so often the case in society is there are countervailing forces which I think happen without the Government realising it, thank God. And one of the countervailing forces has been the way in which the research excellence framework, the way we have Universities assist has been structured this time round. Which is for reasons I think are slightly accidental, there has been a great discussion of impact and now I think that that was driven from the centre as being all of that economic impact, the ghastly nonsense about why you shouldn't study classics because it doesn’t make better widgets but none the less the discourse about impact that has evolved outside of the Government’s control has been about real impact. And there has been both, so both of that as I say the kind of research we do that involves people kind of manifestly has more impact in my view. But at the same time one of the metrics that been used is involving people. And so universities been quite good games players I have clocked that this is a good thing to do at my old University I think has been very good at trying to broaden the involvement of members of the public across loads of research areas and, you know, there’s been a really big push in the. Absolute respect one of the deputy vice chancellors was taking this on as a major part of his brief and has become a real enthusiast, a real advocate. So the Universities can act in very positive and altruistic ways despite the difficult environment the Government has put them in.

So you work in an environment in a context that’s very supportive of involvement?

Yes I think I do now and I think yes I think we would collectively say that that’s been an interactive thing in that it’s been seen as being something that’s gone quite well for us within our board area of work. and so that’s the University as seeing that as a positive and that’s helped influence them but I take nothing away from their, their real genuine commitment to this thing, really taken it on board and really wanting to do it so I think that’s very positive. I mean I think the same is true of the NHS I mean there is, I mean there are pockets of resistance and we wouldn’t deny that both in universities, but also in the NHS to be involved in the public. And again the environment that the Government has put the NHS into, this mad competitive stuff makes it more difficult but none the less I think there is sufficient there’s sufficient kind of memory of altruism within the organisations that we can still get by I think whether that would last another Tory Government I have no idea.

Sergio feels short-term views of the usefulness of research threaten ‘blue skies’ thinking and less applied humanities subjects. Patient views should only be one criterion.

View full profile

Age at interview: 59

Sex: Male

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

And one of the first points you made at the start of the interview was about how one of the negative aspects of involving patients, is how it would reduce the amount of blue sky thinking we could do in research.

Yeah

Can you tell me a little bit more about that?

Yeah. It's not just, it's not patients as such, is the idea that research should be applied. That now we have the knowledge exchange, so what is it you're doing? Why? But if we had asked these questions to Maxwell* and he would have said, "Well I play with little rays, you know.” He couldn’t say, "Oh yeah I do this because in ninety years' time, somebody will invent TV," this doesn’t happen. We have to take for granted that an awful lot of research is done on a basic level and we do not really know whether or not this would pan out practically. If, instead we abide by the rule, the idea, that industry leads the research or, patients' needs lead research, then our vision is too close, is for years, five years down the road; we also need research which is risky, fancy, creative ideas which may or may not be applied; may or may not ever be used, which, though, would increase our knowledge probably. So the risk of having people with an applied view to have the only voice about whether or not research is valid, would kill the blue sky research. But it's not patients or carers, it’s the general idea that users should decide; users should have a say, but this say should be shared because otherwise we only do what is often an immediate need. And what about research which doesn’t have applications which is very solid to allow us to improve our knowledge? So should we just close the Sanskrit department because it does no use? I hope not – I'll subsidise Sanskrit.

*James Clarke Maxwell's research into electromagnetic radiation led to the development of television, mobile phones, radio and infra-red telescopes.

Various ideas for better support were put forward, including guidance on best practice, realistic funding mechanisms that allow for the implementation of PPI even before a grant application has been awarded, and training to encourage researchers to think more broadly about PPI.

Sarah agrees paying people is an important principle, but wants firmer national guidance on what to pay and how to cost this in grant proposals. Slow payment processes can feel disrespectful.

View full profile

Age at interview: 32

Sex: Female

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

I think I said at the start, it's one of the most, sort of, sensitive issues, it comes up a lot. I mean in terms of what I think of payment, I know there's a, I think the argument is that, if we are asking them to make contributions that require a lot of effort and energy, and input, then there should be some form of payment for that, payment for their time. I know some, I think, I know one of a group on a charity, I think it's an Alzheimer's charity, and the lady I was talking to there, she was saying they actually chose to not get payments at all because they said, you know "We're doing it for the charity." I think it's a thorny issue this point of, which points of being a volunteer moves over into being a paid contributor to a project. But again, personally, I think if, I think if we really want sort of genuine involvement and insight from people then it has to be sustainable and it has to be supported financially.

I think there's a lack of guidance on what number, you know, what figure you put on it. Probably the question I get asked most often by people in the department is, you know, “what do I pay them?” You know, is it fifty pounds, is it twenty pounds and there seems to be a reluctance, an understandable reluctance I guess, to put a number on that but it does, I think, then leave it essentially at the mercy of what happens locally and at the mercy of, people always go for, you know, the smallest number that they can and if they find out that someone in, you know, the next university only pays ten pounds an hour, then they’ll go with ten pounds an hour. I think it's a really complicated one and I know it's, I think. I think for the PPI members I think, I think that they feel it's disrespectful when they're not given what they would view as appropriate sort of compensation. And an issue we have here is just the speed with which they get, you know, the refunds.

There's a thing in universities you wait, you know, six months to get your expenses processed or something and I think for, you know, the PPI partners who are saying, "Well I'm waiting six months later, I still haven’t been paid for this." It feels disrespectful I think. But then, you know, that becomes a struggle for us because we don’t have any sway over finance [laughs] to say, "Please pay these people quicker." So I don’t know, I think the finance one is a really, really complicated one.

And I do think it's one where, I think there is a need for kind of leadership from above whether that’s, you know, the NIHR saying, "These are the figures that we recommend; this is the policy we recommend about finance," or, as we're trying to do here, we're trying to get kind of a top-down, like a faculty wide kind of strategy that says, “This is the amount that, kind of, we recommend that people get, this is how we recommend you pay people.” So recommending kind of cash on the day rather than expenses if you can and things like that. But yeah it's a pain in the arse, it really is [laughs] – for us and for them, I think it's a real pain so.

Vanessa would like clearer feedback from funding reviewers on how far the level of PPI in an application affected the eventual funding decision.

View full profile

Age at interview: 42

Sex: Female

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

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.

John would like to see more nationally coordinated mechanisms for finding people to involve.

Text only

Read below

John would like to see more nationally coordinated mechanisms for finding people to involve.

View full profile

Age at interview: 59

Sex: Male

See full profile

HIDE TEXT

PRINT TRANSCRIPT

I think what we need is probably a better directory of patient groups - I would like to, I guess, see a website and whenever anybody’s thinking about applying for a grant they should be, you know, [charity name], MRC [Medical Research Council], HTA [Health Technology Assessment], should actually have a direct link to a directory and that directory should tell you where geographically these people are, what their interest is, how busy they are at the moment. And you should almost be able to sort of do a web search and find half a dozen people you know and fire them an email and say ‘I’ve got this thing, I’d like your advice, are you ready and willing to give it?’ And I think also it’s the sort of thing that the HTA should pay a modest sum to the patient advocates for this valuable assistance they're giving us.

From the patient point of view, you know, I think that if I was going to spend any money on this area it would be on this concept of trying to build up a national web portal where you could identify… patients who could help.

Being on short-term contracts makes it hard for researchers to build long-term involvement. Research Design Service funding support for early involvement has been helpful.

Text only

Read below

Being on short-term contracts makes it hard for researchers to build long-term involvement. Research Design Service funding support for early involvement has been helpful.

View full profile

Age at interview: 31

Sex: Female

See full profile

HIDE TEXT

PRINT TRANSCRIPT

To me the biggest hurdle is getting involvement early and meaningful, in a meaningful way if you're on a short-term contract. And I'd love to say, "Let's stop short-term contracts," because actually to build relationships takes time. If I had a magic wand, you know. It takes time, and it's very difficult when you’ve got pressure knowing your job ends essentially on whatever date and, you know that’s a problem. But actually things like the RDS (Research Design Services) bursaries I know around the [region] we're pretty lucky in that I've been very successful, I think I've got virtually all the ones I've applied for. No, I think I've had all the ones I've applied for - and that helps. They're only for NIHR funding though…

But I think that having the money to be able to have early involvement is a big issue. I think that’s really valuable and, like I say, we've had it. I've been very lucky to have had it. I think that’s something that needs to carry on to maintain involvement and early involvement to keep that cycle going.

Both Suzanne and Vanessa argued for more national coordination and leadership. Suzanne commented: ‘It's fragmented and there's not a lot of joined-up-ness around it at all’. People are aware of pockets of good practice, ‘but actually if that person leaves where does it go? Probably disappears.’

Vanessa would like to see more national leadership, networking and shared learning. Too often involvement is delegated to junior people with little support or job security.

View full profile

Age at interview: 42

Sex: Female

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

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 NIHR has recently published a strategic review of research involvement ‘Going the Extra Mile’ which addresses some of these issues, and recognises the need for a whole-system approach (see Resources).

donate