Researchers' experiences of patient & public involvement
Organisational support and leadership for patient and public involvement
We asked researchers what organisational support they found helpful or would have liked with involvement. One of the most common responses to this was the importance of funding for involvement beyond specific grants (see also ‘Payment, expenses and funding issues in patient and public involvement’). Help with PPI costs from the NIHR (National Institute for Health Research) Research Design Services (RDS) to work up a new grant application was very welcome, although some commented that the amounts available can be quite small, and applications to other funders do not have this support. But there was a wider feeling that involvement needed to progress beyond a short term focus on each study, and that universities should invest more in core infrastructure, including both dedicated staff time as well as guidance and training. Alongside this was a worry that involvement is often left to more junior (and mostly female) researchers on short-term contracts, resulting in a loss of momentum and continuity when the contract and the study end. However, Ann pointed out that even with senior commitment and leadership it can be hard.
In Sarah A’s view, having sustained organisational investment over time would make the biggest difference to effective involvement.
In Sarah A’s view, having sustained organisational investment over time would make the biggest difference to effective involvement.
What if they want to go on a training course, you know where does the money for that come from? So I think in my experience PPI is almost always underfunded and yet it will still sometimes be the bit on a grant that hasn’t had the money spent on it, but that’s usually because people have somehow forgotten to do the PPI which happens surprisingly often. And I mean, so to give an example now is – so that the project that’s started this all with my PPI collaborator that we do the project on carers and now we really want to take that forward and get a bigger amount of funding for it. And I'm lucky in that at the moment, I'm fully funded on a Fellowship and I have a degree of freedom to sort of put effort into work to build future projects. But apart from that there isn’t anything there to kind of sustain that and so you could potentially have what I think is a great project that was PPI you know instigated and led and now kind of where is the support to go forward with that? And that’s, you know, that’s talking about specific research if you think about this issue of training, you know where's the funding to deliver training.
So the training that I deliver in the Centre we just do that, you know, there isn’t any kind of external money to support that. So no, I think that, for me, is the biggest gap between the fact that every, pretty much every funding body, now has a statement somewhere about how important patient involvement is and how seriously they take it and that does not translate financially, I think, at all really. And I think the more, I think people who, the PPI partners themselves who have been in PPI for a lot longer, I think they start to see that and I think that sends a dreadful message about how this is just nice words rather than something that is backed up with genuine resources. It's, you know, money talks at the end of the day I think not adequately resourcing it I think sends a message that we don’t really believe in it and we don’t really want to give it the best chance that it could have really.
Too often involvement is left to junior staff. Sarah A would like to see more senior investigators actually attending PPI meetings and demonstrating visible commitment.
Too often involvement is left to junior staff. Sarah A would like to see more senior investigators actually attending PPI meetings and demonstrating visible commitment.
You said there that you said you're a nice young girl [R laughs over I]. Is there a gender issue about who gets to be the PPI co-ordinator or who does PPI?
[Laughs] I wouldn’t say I've observed that formally. But in my experience that’s how it tends to get done, you know. I think - yeah you're essentially kind of, which is insulting really both to I think, to the nice young girl and to the patients where it's almost like the kind of the PIs saying essentially it's some kind of coffee morning. Like kind of, "Oh well, you know, you're nice and you can go and chat to them about their kids or something can't you?" So I wouldn’t say formally that there’s a gender issue, I think it's perhaps more of this, it shows a, I think it's perhaps, in some ways, hints at the lack of value that is being put on it that it's essentially almost just an exercise in being nice to members of the public for an hour or rather than, "Do you have the skills to sort of properly engage with this?" and also an issue that I often sort of think about is this, you know, if you're telling this group of people that they're going to impact the study or that their voices are going to be heard and yet it's the most junior member of the team who's hearing and she can't go back, or he, can't go back to their PI [principal investigator] and say, "Well you know now we're going to do this because the PPI group said. So…"
I personally would always like to see people who have a bit more responsibility and authority for studies actually going to these meetings because I think that would demonstrate to the group that it's. I mean, I've been at a PPI meeting and you see the people I could overhear the PPI members going, "They're all very young aren’t they, they're very young." And you do kind of feel like ‘well are they going to trust that I'm taking this back’. So I think there's an issue of making sure that people with, you know, people with authority to take decisions about the project, are the people who actually go and consult and collaborate with the PPI members rather than it just being, you know, left to the most junior member of the team.
Involvement often seems to be treated as a low status, female activity, and more relevant to qualitative research. Getting more men involved might help raise its profile.
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Involvement often seems to be treated as a low status, female activity, and more relevant to qualitative research. Getting more men involved might help raise its profile.
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And actually it’s much more difficult for people to get involved in quantitative research and, and more bench research yes, it’s really difficult because for lots and lots of reasons, I mean to have the level of technical knowledge that you’ll need to have to be able to make an informed contribution, it’s very, very difficult. Whereas qualitative work in Health Services research is much more accessible so for them it’s easy to get involved with. Maybe the sorts of people who come into qualitative research have those sorts of empathetic outlooks anyway. But there certainly appears to be some connection or association I don’t know what it is but yeah.
Even though she works hard to drive involvement from a senior level, Ann still finds it easily drops off people’s agendas.
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Even though she works hard to drive involvement from a senior level, Ann still finds it easily drops off people’s agendas.
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I mean it distresses me because I realise it's been, we haven’t done this as well as we should, even though I'm pushing and pushing and pushing it. I can't get it through the layers. So, some people would say, "You need really top level support for this." But I find that now I am at fairly high level, I can't get it through the layers to actually get into action.
Hayley’s work as a PPI coordinator includes both expert facilitation and practical issues such as health and safety and dietary requirements. Her background as a youth workers helps.
Hayley’s work as a PPI coordinator includes both expert facilitation and practical issues such as health and safety and dietary requirements. Her background as a youth workers helps.
So I think some of the skills I've kind of developed up as well as being kind of, trying to work within the parameters of those two different stakeholders because sometimes what the young people want and what the researchers want are very different. And to also understand that, with the researchers sometimes they are not in a decision making place. So some of my other work in local authorities we would work with the decision makers directly, whereas with researchers, when they're going for research funding, they're not actually making a decision on whether that research is going to be funded and whether it's a good idea and so, they're kind of also taking on the young people's views and it took me a while to kind of build-up that knowledge of research, the real world, the reality of research I think.
…Some of the other things I suppose behind the scenes is working with the young people – things such as dietary requirements and things which I think people kind of overlook. We do a lot with the young people with kind of ; we make sure we know all their dietary requirements and allergies. Any things in regards to if they're on any medications and just things. So we have someone whose first aid trained but if we have somebody – one of my young people has asthma – if they have an asthma attack we're prepared and we know about it. And also – I've just thought of something else anyway – also we, as part of the risk assessment as well we've obviously thought about child protection because we're working with fourteen to twenty one year olds.
There may be issues with child protection and because we have young people who actually come from different local authorities within Wales, each local authority has a different system. So we've got a file which in there has all of the different local authorities our young people come from. So if we have a child protection issue we've kind of printed off their web page to find the number we contact that local authority. So there's a lot of things which I suppose some people wouldn’t really think about which we’ve just have to prepare and make sure we're prepared for. We also have somebody who is a manager, who is an emergency contact. So off site all the young people fill in a consent form. They can fill it in themselves if they're over sixteen. If they're under sixteen we have to get it filled in by a parent or guardian. And we ask everybody, even if you are over sixteen, to put an emergency contact on there so if something happened here we would be able to – the process is I would phone our off-site emergency contact which would be one of the managers who then has all those details to phone families to say if there's a been a fire in the building or.
…Well because I come from youth work we do sort of introduction to youth work training and a lot of these kinds of aspects are covered in that. So I came here with the knowledge of that. I do think to myself if I'd come from maybe just a research background there's some of these things I wouldn’t have instantly thought about. And this is where I think that it's important when we're doing research, but also public involvement from sort of academia from research institution, centres, universities, it's always important to have on-board somebody who is familiar with the public or has worked with our public before. So in our case it is young people and we have myself and the youth worker – we've done that before. There may be a whole other level of guidance and there may be other issues to think about if you're working with adults who are under a protection of vulnerable adult's action and I wouldn’t know anything about that but, it's important to understand the issues for that public. And I think you can only really do in that either having worked with that public before or asking them.
It’s often argued all researchers should be able to manage involvement. But over time Andy has come to think it needs a skilled facilitator who can span boundaries.
It’s often argued all researchers should be able to manage involvement. But over time Andy has come to think it needs a skilled facilitator who can span boundaries.
And you could say that there’s an attempt to make it more complicated I mean, in some ways than perhaps it needs to be, it should be easy, it should be common sense it should be that everybody’s able to do it and what the PPI folk should be doing should be teaching people that they don’t need PPI people to do it. so this may just represent my own self-interest and justify my existence, but the more I’ve come to do it the more I‘ve come to the conclusion that it actually isn’t that easy [laugh] or straight forward I’ve seen enough examples of it going wrong to think that maybe that’s right and there’s no good reason to think why an academic should be any good at doing it.
So I think actually there’s really interesting research projects about what makes someone that good facilitator, translator what is it about those people what have they got that allows them to do that. I think it would be really interesting, I’m sure there’s stuff in disciplines like, you know, what makes a good teacher that we might learn from, but this is not about teaching obviously. But I do think there’s a particular skill in being able to span those two worlds, the academic research world and the, and the lay world and to act as some kind of translator between the two and I think there is something there that’s a particular skill. and when I’ve seen it done well you can see that somebody A) who is facilitating very well is attentive to what is happening in the room, so they can see that somebody’s looking a bit unhappy or a bit left out and are able to draw them into the discussion in a way that’s helpful and supportive and doesn’t put them on the spot.
And are also able to listen to what patients and members of the public are saying.
Valerie finds having a PPI coordinator invaluable. She cannot imagine how people manage in departments which don’t have that kind of support.
Valerie finds having a PPI coordinator invaluable. She cannot imagine how people manage in departments which don’t have that kind of support.
You talked a little bit about money earlier on and the fact that you have some money that you can start PPI without having the grant.
Mm yeah I don’t know where people get the money from to do their PPI because I mean, we've just been putting a grant, an RfPB grant, and we were just, it was a phenomenal amount of PPI that we'd done beforehand because we'd also been able to do some of it as part of a different project. But yeah, so that section was very, you know, was very complete, was very full and you could really demonstrate the fact that what you were proposing to do had come out of a lot of PPI work. Now I have no idea how people pay for that if they're not in a unit that has this kind of rolling capacity or finance or whatever, so I don’t know what they do. Presumably they don’t pay people, I don’t know [laughs]. I don’t know how they do it because yeah, because it's just so expensive to do properly to have sort of half a dozen people in for a meeting to give them recognition of their time and pay their travel and their childcare and their lunch.
As a PPI coordinator Ceri runs a PPI group and helps researchers find people to involve. She and Eric discuss the value of local organisational and admin support.
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As a PPI coordinator Ceri runs a PPI group and helps researchers find people to involve. She and Eric discuss the value of local organisational and admin support.
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So for more than one reason it may not happen if there wasn’t me who stands up and says right have you remembered to invite some service users to this meeting and I’ll help you we’ll find the right people we’ll contact them in the right way and then we’ll make sure we’ve got expenses honorariums for them and if necessary arrange accommodation and those sorts of practical things as being crucial. I think it’s also been really important that having, having this group which we have referred to through this because it’s enabled us to build this relationship with people and it makes it much easier for me to be able to recruit people very quickly.
And there are times when someone will say we’ve got to get a bid in ten days’ time and can we have a perspective on this and I can get people together pretty quickly because we have that relationship and because I’ve got the contacts with them because they and me have some level of trust, they have a trust of the department generally now because they’ve good experiences. So, so the support and the culture because all this is supported by the person who heads the team that we’re in that makes a big, big difference. It would be difficult, it would be very difficult if we didn’t have all that…
We’ve been talking about researchers all the time there’s another section of the team here at [university name] that makes everything happen which is the administrative team.
Eric: Yes.
Ceri: We would really struggle without them they’re fabulous. And they’re, that attitude their willingness to go the extra mile their caringness that also is invaluable it really makes, makes it work.
Eric: Because the service users that are most involved will speak to them as much as they speak to us.
Ceri: Yes, yes.
Eric: In terms of just checking on arrangements or checking on travel arrangements as we say, payments.
Several researchers also valued their local administration teams for help organising meetings (including all the mechanics of organising rooms, catering, parking and reimbursements) and keeping in touch with the people involved. Those without such good support – provided either within a PPI role or at times by those with a more administrative role - were left having to cope with the burden of admin on their own, and questioned whether this was good use of their time.
Involvement takes a lot of time, resource and planning. It needs an organisational champion but also committed administrators who maintain contact with users.
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Involvement takes a lot of time, resource and planning. It needs an organisational champion but also committed administrators who maintain contact with users.
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Catherine feels isolated and is left to do much of the legwork of involvement herself. She’d like better admin support and more nationally shared resources.
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Catherine feels isolated and is left to do much of the legwork of involvement herself. She’d like better admin support and more nationally shared resources.
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And you talked there about not being given any extra time to do this – but what are the sort of resources, I suppose time being one of them, but the sort of resources that you would need to effectively do PPI as part of your job?
Yeah I think time is a big one and I find it irritating that I have to even book rooms and find like just the time to get a group of four or five people together to find out when they can come, make sure they know where they're going, give them directions. And then there's the whole refunding them for travel expenses, any other expenses as well as paying them – like that’s another thing to get all the forms together. And I know it's not much, but when I'm trying to be a good researcher I don’t want to be faffing around trying to find out how to pay them, what form to use, checking that that’s been done. So time, as well as the time of actually preparing materials for them and then meeting them. Like I think the time is well spent meeting with them, but there's a lot of other faffy time around that.
I think when people come into the first few meetings they're not going to know at all what a lot of basic stuff is, so I've written some background information. I've written an information sheet about what we want out of PPI. And all of those things are quite generic that we could just have department ones or research group ones or even NIHR ones, I don’t know, rather than me having to come up every time with writing – I've now written a kind of an agreement sheet that we'll try, and in the first meeting we'll try and come up with a list of rules that everyone agrees to and I think those kind of things they're pretty basic really. It would have been good to have, maybe if I’d searched better, I would have actually even found them. But within my department I couldn’t, didn’t come across anything like that.
But other than that, I mean there's money and I felt like we'd budgeted enough money – we've budgeted for travel expenses, payment of a hundred and fifty pounds a day or equivalent for half day or quarter day – and printing and possibly sending things by post if people prefer. And we have budgeted a little bit for training, but I've not actually been able to find out exactly what training would be available for people. So that was another comment I got from one of the reviewers was that you'd budgeted for training but they wanted to know what that training would be. So I've actually been in touch with RDS and asked them, but I haven’t had any response yet. I've been trying – I know of one course in another university that they have members of the public but that’s stopping. So again I'll have to look a little bit better but it would be good to have an idea of specific training that we could give people.
But as well it would be good if there is some kind of admin support in terms of arranging stuff and sending stuff out; booking rooms, finding meeting times, because I don’t think I would want to do that for multiple groups of PPI people, and then distract from the things that I am going to be assessed on, which is like publication output, teaching time – stuff like that. I don’t think at the moment PPI is up there, the equivalent of some of that stuff.
Stuart believes universities are beginning to see real value in involving members of the public and that creates a helpful environment.
Stuart believes universities are beginning to see real value in involving members of the public and that creates a helpful environment.
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 broad 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.
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.
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.
Chris’s PPI coordinator understands the pressures on researchers. His team have worked to position PPI as an academic asset even if their work isn’t always aimed at high impact journals.
Chris’s PPI coordinator understands the pressures on researchers. His team have worked to position PPI as an academic asset even if their work isn’t always aimed at high impact journals.
And are there tasks that compete for your time? So I mean some of the researchers I've spoken to have said, you know, as a researcher I'm employed to write papers and get funding proposals and I have to do PPI as well.
Hm mm
Is that sort of the case for you too?
I could argue that but it's not what I believe. It's partly, you know, it's your motivation for doing the research and there probably is a corporate mentality in the University for bringing the money in and publishing in high impact journals. But much of our research in childhood disability research is never going to hit the high impact journals and we've been reasonably successful in bringing money in I think because of the way we've gone about our involvement. So I kind of think, and now whenever we publish a paper we always put in a paragraph describing how families have been involved and we've written two short pieces in non-high impact journals but very much in the childhood disability field of well thought of journals about how we've involved families in our research. So we've developed somewhat of a reputation for doing it and so I think it's been a real asset to us. And whilst we've learned we're also now sharing what we've learned with the academic community to our benefit rather than to our detriment.
In Rebecca’s department there is a PPI co-ordinator and strong senior support for involvement. But short term research contracts, and lack of funding for early involvement, are still problems.
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In Rebecca’s department there is a PPI co-ordinator and strong senior support for involvement. But short term research contracts, and lack of funding for early involvement, are still problems.
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Oh yeah absolutely. I think our department, we've had a PPI group for I think just over five years, no, six years. I think in health research that’s quite early to have a group. Obviously we all think we should have had it longer, once you’ve got PPI partners involved with work. And they really help, they really steer what we do as much as we steer. I think we work well together – I hope. From my view we work well together. But because of that there's a very strong culture of involving people from the top down; the head of department sits with the group at their meetings. He's very, he thinks – well. I don’t want to put words into his mouth, but I think that’s very important to show that it is important, and it doesn’t just happen, and it maybe feeds in. He's sat there. The co-ordinator of the group is brilliant; she really helps, you know, helps everybody to be, make sure they get a chance if they want, if they’ve got an idea to present. So we'll get doctoral students coming in and presenting. And there's now three of us that have these like PPI clinics to help researchers to ask. I think there can sometimes be, because there's an expectation of people should always have been doing it and should always know, that some of the basic questions – you need someone to ask the basic questions too. So there's sort of three of us that do that, have got, you know, as you would with any part of your job, you’ve got some skills and you develop something – you then can help people who haven’t done that before to learn it, to figure out what might work for them…
And then it becomes a cycle of: it just seems obvious. And that’s where our culture, to me, is now: it seems obvious. There's still people coming in who go, "Oh I've never involved people, what do I do?" But then that’s a learning point that we can learn. So yeah I think it's a culture socially. It's very much a place that it can be fostered and facilitated and developed and then the relationships that take time to build, you know as short-term contracts that, fixed-term contracts that researchers have can be a challenge because if you're on a fixed-term contract of twelve months or six months it can be quite hard to build a relationship that’s meaningful…
To me the biggest hurdle is getting involvement early and 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 that’s, 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 we do get quite - 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.
In Valerie’s department involvement is supported from the top as a way of working. The NIHR has done a lot to embed PPI – but it still conflicts with institutional pressure to publish.
In Valerie’s department involvement is supported from the top as a way of working. The NIHR has done a lot to embed PPI – but it still conflicts with institutional pressure to publish.
Not here because, I mean it never has, because it's never, you know, it's so what we do. I can imagine that if people work in a slightly different kind of set-up then, and they haven’t thought through the time of doing it and if their prof doesn’t have a great belief in the value of it then you would struggle. But it's how we do stuff here so it's kind of. So no, it doesn’t compete with stuff, other stuff you should be doing.
…There's seems to be so much pressure on publication which remains so inaccessible to most people that it's hard to, it's kind of hard to see that, that shift to a more. I mean obviously we're encouraged to publish in open access journals but I think it's all bound up with the whole time and money aspects of stuff isn’t it which, I don’t know. I guess it will, we've come a long way, haven’t we? You know, you can't submit, and this is obviously where you get your tick boxes coming along but you can't submit an application for an NIHR or many other researches without a good explanation of how you're going to involve, and that’s amazing, and that’s an amazing change. It's taken I don’t know how long. But so I guess yes but not soon, not with like the way we currently value what we do in research which is, almost seems to be completely separate from. We do this PPI, it's all very nice isn’t it but what really counts is what you publish so, yeah.
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.
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.
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.
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