Researchers' experiences of patient & public involvement

Colleagues’ attitudes to patient and public involvement

We asked researchers what they felt their colleagues’ attitudes might be towards involvement, both locally and more broadly within their profession or within research. We were interested to know how this affected researchers’ confidence and enthusiasm. Researchers’ experiences ranged from feeling well supported to involve patients and the public in an enthusiastic team through to feeling isolated and dismissed – and everything in between. Not surprisingly, those with enthusiastic colleagues found this environment very helpful, particularly if principal investigators demonstrated their support, even if it didn’t solve all problems. Felix suggested a generational change was underway.

Having a supportive group of colleagues who share their learning about involvement is really helpful.

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Age at interview: 48

Sex: Male

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So at the beginning so you didn’t necessarily have formal training, there was lots of kind of trial and error – is that kind of accepted here that trial and error is an appropriate approach to kind of learning how to do PPI?

It's certainly very acceptable to me in a process of learning so they could try things that aren’t working. Is it important to, I mean there's a cultural support for involving various patients and members of the public in the organisation and I think that’s very helpful to be part of and, you know, even kettle conversations whilst, you know, making a cup of tea and you're sharing challenges and experiences with people who understand that, are a great resource so I do think the culture of the organisation is an important support for being able to do this properly and feeling. It would be much more difficult if you were on your own doing this without a supportive community of people.

And why do you think it would be more difficult if you were on your own?

Well just not to have that community of people to talk therapeutically about the challenges and successes. So just, it's not impossible if you're a lone researcher but it, I think it's easier to be tapped into a network so that you can, you can share ideas.

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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Age at interview: 31

Sex: Female

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Within your department, with your colleagues, the support and the sort of social influences to do with involvement - is it positive, are people accepting of it?

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.

Felix sees more senior staff now setting the tone for patient and public involvement as a normal thing to do.

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Age at interview: 36

Sex: Male

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But the more people you have at the; you know, the more champions you have of public involvement the more that’s a really normal example of how you do good research. And I guess, you know, and we've probably seen that process of normalisation and a new generation coming into those senior positions where they lead the example of it and, you know, and all the champions you know that are out there, you know, relentlessly advocating for it and, you know, admirable people. I'm sorry about the incestual community bit there – some people out there that really push this forward in a very meaningful and inspiring way. So yeah, I think there's hope for the future always otherwise there wouldn’t be any purpose for even doing of this really mm.

At the same time, some researchers described colleagues who appeared actively hostile, sceptical and dismissive about involvement, and some who were just not interested or were unaware. This might depend partly on their academic discipline and how theoretical or lab-based their work was.

Stuart describes ‘reasonable and unreasonable reasons’ for colleagues’ scepticism. Good involvement is difficult but worth it. But some colleagues are more worried about losing control.

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Age at interview: 59

Sex: Male

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Yeah okay. Well I think there are both reasonable and unreasonable reasons for scepticism, so we’ll deal with the unreasonable ones, it’s about power. You know, I’ve said you know you have to make compromises and it isn’t easy, for those of us who, you know, yeah the Professor and yeah the consultant and all the rest of it, you kind of get used to telling people what to do, which is a terrible thing but it’s true, it’s what happens in your life. And so public involvement that is more than tokenistic involves you kind of giving up that power and that’s the unreasonable objection. You know, and it goes along with what the bloody hell they would know and so on, all that stuff that. The reasonable, but wrong, objections for me are firstly that it’s really difficult and really expensive and that’s right because if you don’t do it properly, which takes time and resources it’s a waste of time. So people say that it’s just adding another layer the difficulty of getting the right kind of involvement, it is difficult and requires a kind of structural investment as well as a kind of direct investment in one project, you’ve got to have the structures around you to make sense of it and the people who can do it right. You need to develop skills, you know, if you're a person who doesn't have those kind of skills it's kind of hard work and you’ve got to develop them or employ somebody else who can help you. And then we talk about the fact that there are problems and you can be, you know, you can run into very, very I mean often we talk about the difficulty of making sure people feel able to be involved, sometimes you can get very powerful individuals involved, personally powerful who can you know, be very damaging if they are getting things deeply wrong. So yeah all these things are real risks and difficulties, me I think if the game is worth the candle so I would try to deal with those things but it doesn’t mean they’re not real. So I think those are the two camps and but to be frank I think quite often the people expressing the reasonable reasons are often driven by the unreasonable so it’s very often that actually they don’t want to do this because they used to know what the bloody hell they want to do and do, and they make excuses.

Ann was shocked at the hostile attitude of one senior clinician to patient involvement in research and lack of interest in the patient experience.

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Ann was shocked at the hostile attitude of one senior clinician to patient involvement in research and lack of interest in the patient experience.

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Age at interview: 55

Sex: Female

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Sitting round the table for the steering group, we had A&E consultants and paramedics and an asthma specialist nurse and a whole variety of people from the ambulance service, from the hospitals and elsewhere. And they'd be talking about what we should be measuring; what were the important things. And then she [asthma patient] would say something like, "Do you know what it feels like to be asked to blow into the peak flow measure when you think you're not going to get another breath?" And for me that completely grounded us in the actual experience of patients, and what we were supposed to be concentrating on. But it was also completely interesting because the reaction of the people round the table was not the same as mine. There was a particular, I remember, one A&E consultant who was very dismissive of the patient perspective. So, for me it brought us back to what we should be doing. For him it was like, “Ah will you please, you know, shut that lady up?” He was really dismissive. So, which only made me all the more determined to involve people in the future.

And why do you think he was dismissive? What do you think his concerns were?

He didn’t want to hear about the experience of a patient. He just, for him, the important thing was, one of the findings of the audit was that their ambulance crews are supposed to take a peak flow measure when they arrive, and then after; and then during and at the end; at least when they hand over to the A&E department, but possibly in-between as well. And so we were looking at changes in the peak flow measure, between when the crew had arrived, and when they were taken to hospital. So he was only interested in those measures. He wasn’t at all interested in what that felt like to the patient, and he didn’t want to hear about it. So, but the paramedics were. We were interested to increase the rate of peak flow measures that were taken. The paramedics were sometimes writing, 'patient refused' or 'difficult to obtain,' or something. And so as far as I was concerned we needed to understand that. But as far as he was concerned we just needed to get the rate up.

Catherine thinks her colleagues only see involvement as important if it helps them get funding. She hopes to persuade them to see it a positive opportunity.

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Catherine thinks her colleagues only see involvement as important if it helps them get funding. She hopes to persuade them to see it a positive opportunity.

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Age at interview: 29

Sex: Female

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So far I've met with people to do PPI to write grant applications, but we haven’t got as far as starting the research - although one of the grants has just started and I've got a PPI group together so I'm going to be meeting them from later this month onwards. But until now the only PPI that’s happened has been to write grant applications. So I think my colleagues haven’t had the chance yet to see how it can actually make a difference. So I think once I've started meeting this PPI group regularly throughout the year, I'm hoping that it will be more of “here’s how it can contribute”. Because I haven’t actually spoken really about PPI and what my colleagues think, their attitudes to what it is, so it's probably more hypothetical. This is me just telling you what I think their attitude is which might be unfair, but I think they see it as a box-ticking thing, and I think they think it's important, but only insofar as it's going to be important to get any funding to do it rather than because they think it can actually make a difference. And in fact for the PPI that I'm about to start, for this grant that’s now started, I've had people saying, "Oh just meet a couple of people". So I've put in the structure that we will have four to eight people who will meet three months, every three months. And I've had people say, "You don’t need to meet them that often," or, "Just invite them along to this, just get one or two". So I think they do see it that now we've got the funding we can, they don’t, I think they think we should do the minimum to get away with meeting the requirements of the funder rather than thinking it's an opportunity to do something.

Involvement may seem time-consuming and challenging, and some researchers are unsure of the benefit. Suzanne feels some academic disciplines have a more receptive culture than others.

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Age at interview: 40

Sex: Female

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But it is kind of thinking about if you're going to do it, then you’ve got to try and do it effectively within the resources that you have. So it's kind of, you know, do you settle for doing something if you know you can't do it right? And I think a lot of researchers probably struggle with that because, you know, it attracts perfectionists sometimes.

So I think it's kind of, you know. Sometimes people don’t want to settle for something because they know they're not going to be able to do it – give it its due service really but yeah.

Are there also things that conflict with your time or, you know sort of things that you, that by involving people other things in your job will be detrimentally affected or you won't be able to do?

Yeah I think it does take time doesn’t it and I think it's sort of. I guess you sort of taking a punt on the fact that it will speed things up eventually. I don’t know if – short-term loss long-term gain and that it will make, you know, speed things up eventually but also hopefully produce a better, you know, better project, I don’t know yeah. I think, you know, but everything, there's so many things that will take your time up that you didn’t expect they would and you know it's, it's another one to add into the mix as far as I see it but it's sort of an easy one perhaps for people to say, "Oh that’s going to take so much time," and that sort of thing yeah.

And in general do you think people – researchers – are sceptical about this or do you think that they are trying to embrace it and?

I think it depends who you talk to and I think within some fields it's a lot easier to sell it to people. I think sort of, you know, there, here, in this university. You know there's quite a large kind of, you know, psychology departments; nursing, primary care where it's within a culture a lot more, whereas I think it's been interesting, you know whereas I think within other kind of specialities, you know say with hospital based specialities, there might be some more of an issue.

…And you were saying that it involves a relationship change I think

Yeah I think so because it's more that, you know, you are. I don’t want to talk about power because it's not that but it's more that you're. I guess you know you're not setting the agenda or you're trying to jointly set it and I think that’s, you know, it's challenging sometimes you know and I think you, you know, you can fight, you know; you know some people probably. I'll probably include me in this might find that a bit threatening sometimes and I think it's, again that down to your own confidence – lack of confidence and lack of experience probably of doing it. So I think it's, yeah it's either that’s where the shift is really, it's between, you know, I think this is important to, you know, to find out that actually now you're telling me.

David advises people like him from a ‘hard science’ background not to be ‘prejudiced as I was’. It now annoys him to see colleagues dismissing patient input.

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Age at interview: 49

Sex: Male

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Keep your eyes open and don’t be prejudiced as I was to start with. You'll find it quite rewarding once you get involved in it, and you'll perhaps see things from a different light. My circumstances are quite unique because I was very much sort of engineering and quantitative hard science, so this was a world which was opened up to me in a different way, particularly with other qualitative recruitment issues with my trials. But I sort of, the door opened and I was suddenly aware of it, but now it's a really important part of what I do. So you’ve got to try it, you’ve got to get your feet wet and have a little dabble in it, and don’t do it if you're a very impatient person – I would give that piece of advice. So, if it's not for you at all then leave it to people who'll do a good job of it. We don’t want the wrong people doing this I don’t think.

Yeah that’s a good point about the wrong people doing it because we talked a little bit about who the right patients were.

Yeah.

So, there's the right researchers as well.

Yeah, so you will see in meetings where people try and put words in other people's mouths. You will see instances where somebody has such authority or self-belief, or perceived authority, that their word is final no matter what. The patient can talk about whatever they want; in the end they are put down because I still am the authority on this one, sorry, thank you very much. So, we have to have some antidote to that, and that really annoys me when I see that happening. So it's all kindly of patter patter, yes lovely, would you like to speak Mrs Smith? Yes, no, yes fine. And we're all fine, but at the end of the day we're going to do.

In Alice’s last job there was lots of support for involvement but less so in her new department. It’s hard if someone in a senior positon opposes it.

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Age at interview: 26

Sex: Female

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In the last place that you worked what was the general feeling about PPI amongst your colleagues – were they positive to it or maybe negative about it or a bit of both?

I think within my research Unit everyone was pretty positive because I think you had to be otherwise you wouldn’t be doing that job. I think we did have a couple of people who I think questioned whether it was really effective or whether it was really worth doing. But on the whole people, everybody without fail, acknowledged that it was the right thing to do whether or not it was being effective. And I think a lot of people, kind of in the same building but not in the Unit, also thought that it was an extremely useful set-up to have the group. So yeah, on the whole positive but not, this isn’t really from a representative sample because we all worked with in PPI.

…And what's the attitude amongst your colleagues here?

Nobody seems to really even consider PPI here. I think the reasons are mostly what I've discussed before in that there's kind of less scope for it because we're already on track with what we're doing – we know what we need to find out and how – it's just doing it. I don’t know if there was, I've kind of come to things in the middle so I don’t know how much, if at all, there was any PPI in setting up the entire thing at the beginning. But I feel like surely there must have been because now it's such a big part in applications and things. But it's much less an integral part here than it was in my old job.

I suppose the only other thing is that I think don’t under estimate how tricky it can be when a more senior person has more negative, not negative necessarily, but has more set views on what PPI can and can't do. I'm thinking specifically about the example with the website screening that if someone in a more senior position isn’t willing to open, you know, open their mind and be receptive to genuine change, you know, isn’t willing to accept differences to what they want to do, then there's kind of no point in you trying really because I think everyone needs to be working to the same goal for it be effective. And if the person who has the ultimate say isn’t receptive to it then, you know, you can bite and you can try but it's only going to lead to odd compromises or ineffectiveness. That’s it really.

Bernadette thinks her senior colleagues see involvement as a ‘drain on time’ and a box-ticking exercise, so she keeps quiet about some of her involvement activities.

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Bernadette thinks her senior colleagues see involvement as a ‘drain on time’ and a box-ticking exercise, so she keeps quiet about some of her involvement activities.

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Age at interview: 39

Sex: Female

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Quite honestly, the very senior people think this is a waste of time and a box-ticking exercise. And a lot of what I've been doing I’ve been keeping it quiet, because I don’t want anyone to tell me that I'm wasting my time. And I can justify it from a point of view, “Well we need to tick that box” and, you know. And I’ve been, I think it was at [a] conference I was at somebody from NIHR was speaking. And he said, “You all don’t seem to realise that that box is really important and we will reject proposals that we’re, there’s nothing there, there’s nothing adequate.” So until now for example we’ve put in some proposals and all I can say is very honestly is that there is no patient group and I've involved individual patients, but, you know, that just sounds like you’re trying to fill that box, but it’s just the truth. No, I think people think it’s a waste of time in general. But again it’s because it’s a new thing, you know. And there’s so many, again, there’s so many of these things and, what else? Like public engagement. And you know, it’s all a bunch of things we have to tick because that the way things need to be done now.

And is it something that kind of competes for your time?

Yes of course yes, of course.

Yes, how do you feel about that?

Well, I genuinely think it’s worthwhile otherwise I wouldn’t do it. I'm genuinely willing to give it a go. I wouldn't, if I felt that this was just a chore and it was not achieving anything I wouldn’t carry on doing it. I’m quite excited about it, and I’ll see what happens next week, you know, in ten days at our meeting, and we’ll see. I think we’ll see, but of course it’s going to be a drain on time.

As some of the extracts above suggest, researchers could see a range of reasons why their colleagues (and indeed sometimes they themselves) might be sceptical about involvement. These included wanting to stay in control and maintain power; concerns that patient involvement might threaten the scientific rigour of their research; worries about hearing only a few ‘unrepresentative’ perspectives; feeling that patients would just make irrelevant remarks; and the time and effort involved.

Felix reflects on academic power, tokenism and control over who is allowed to get involved. But he can understand why researchers want to protect their research.

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Age at interview: 36

Sex: Male

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And on very different levels, you know, on the level of feelings, beliefs and behaviours and like, I guess, that the most well-known one are tokenism, you know, they attempt to involve results and processes dominated by pre-determined decisions. For example, involving small insufficient numbers of people, impacts of PI being minimal or non-existent - that’s tokenism. But also paternalism – this is behaviour recorded by the researchers. Paternalism, you know, treating public as passive recipients of professional intervention and the paternalistic premise that professionals know best. But also something which we called protectionism and tribalism and so not letting the public encroach on your own territory as a researcher and also tribalism preservation of a specialised language and codes which always goes down to barriers and facilitators with regard to language.

Elitism and the conviction about the own idea/own views or specialist knowledge as having more intrinsic value than the views and anecdotes of the public. For example, you know and that the middle class, you know, selective process, you know, that the people that are more articulate get more attention within the dynamics. Other behaviours are disempowerment - treating power as elephant in the corner seeing, you know, seeing PPI as an optional input and being selective with regards to including public views. And I think I guess that’s something that happens very often. Conflicting demands, I call it. The only, this is the report and it's interesting that a lot of the behaviour is by the academic researchers and I think that’s a sign of clearly you know where the power lies to steer projects and but I also say something in defence of that as well, in a minute. Potential behaviour from members of the public is separatism – you know, exclusively propagating user controlled research, using conflict as a collaborative approach that really people that have really strong convictions through a process of learning probably, you know, from repeated experience of negative impacts I guess.

I like the double binds; I think that’s a really nice finding. So a demand on the public is imposed but the demand is inherently impossible to satisfy. So, for example, when you think about the confusion about what skills or knowledge is expected of the public and why you know; kind of, you know, what's lived experience stand for – what does it mean? What's the, you know, kind of, what's the value of that as opposed to scientific knowledge which is also a normative debate I guess. And this may then be a form of control without open coercion so if an individual is too challenging or confident or active in their beliefs or behaviours, they're being seen as not typical or representative. And this is where the representativeness debate comes in you know, which links to, you know, what kind of knowledge are we actually seeking to produce but also to inform that production.

So I think there's all these interesting dynamics going on about stemming probably also from a lack of knowledge and experience of doing it and, you know, you can't blame researchers and projects for not knowing how best to do it. But you can warn them that it is a very risky endeavour. So and then, you know, in defence of that academia is a highly competitive, you know, process and it is I don’t blame professors that have gone through a lot of hard work and still do, and to come and, you know, a dynamic of academic achievement which is clearly geared towards creating an elite of people with a clear sense of power and achievement. I don’t blame them to then say, "OK open the doors and let your decisions be made by someone who isn’t, hasn’t gone through that process." So it's a real territorial thing. So as long, I guess, as long you are in the territory of the university that’s always going to be an imbalance, so that’s set. But I think it's important to make that transparent and, you know, open and not pretend it to be anything else.

So if you're saying, "OK I'm going to consult you as a member of the public and I'm going to take the decision of whether I think that’s feasible or not depending on my own personal agenda," then that’s honest and you can, you know, you can hope for some kind of interchange and, but that’s, I think in my opinion, probably not happening enough. But it's kind of bites itself, you know, it's. So you have to uphold a pretence of, you know, real equality and partnership and fairness and all these other values that are floating around in those guidance documents and whatsoever. But it's an inherently imbalanced relationship between the members of the public. Unless you say, "OK we've got members of the public, we want to generate research questions with them and then carry the process through from beginning to end." So, you know, I understand both, I really understand both sides of the coin and probably for me being in a position where I don’t have power because I'm a, you know, at the bottom of the chain within that academic pyramid.

Reasons for researchers’ reluctance to involve people include lack of evidence; fear of the unknown; thinking it’s just ‘politically correct’; and feeling professionally threatened.

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Age at interview: 52

Sex: Male

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What is it you think about the people who know about it and aren't doing who, I mean what do you think their concerns are; why do you think they're not involving people?

A range of things I guess. I mean I find it hard to understand as well but, I think it's probably a combination of there's some pressure to only do things where there's evidence for it and then the evidence, the hard evidence for public, you know for the benefits of public involvement, is slim on the ground, thin on the ground. So that’s one thing. So, show me the evidence it works well. It's difficult to do that. Well unless you show me the evidence I won't do it. So, there's some quite sort of dyed in the wool type responses like that.

The fact that it is complicated, you know it's not a straight forward thing; it's not just find a patient and bingo there it goes, public involvement and its working. It's managing relationships and there are people who are great and are really facilitative and there are people who are quite awkward and you’ve got people who want to tell their story all the time. So it's not, it's not a simple process and it's very much an inter-personal management thing and some people are better with people than other people, so there's that kind of diversity of responses. I also think that some people are a little bit, not exactly scared of it, but don’t understand it, don’t understand how you would do it and can't quite see how it would all work and there's a resistance to change in most people - it varies in its intensity but, it's changing practice and some people are more responsive to change than others. Some people like it and embrace it and they're the early adopters as it were. Others are really quite resistant to change because what they do works and when they get their research grants and they publish their papers and what else could it; what difference could it make. So, I think there's a, you know that’s the sort of individual and organisational cultural sort of resistance where, if people haven’t seen an example; haven’t been exposed to it and it. Some people maybe even think of it as sort of political correctness and if they keep their heads down long enough it might blow away and then they can forget about it. So I think there's a bit of that there. And also, I think the last thing really is I can easily see that in some circumstances it could be professionally threatening so, you know I'm a researcher; I've trained; I've done, you know, done a degree, done a PhD, done a year's post-doctoral work; I know my subject, I know how to do research and you're trying to tell me that a patient can tell me how to do what I'm doing? Well actually that’s not what public involvement's about, but that sometimes the reaction that people get, "Well, you know if it's so easy to do why did I bother doing the training; I'm the ruddy researcher." So, it's a really combination of those things and it's, they all, essentially it boils down to lack of exposure to something to demonstrate that it works, which comes back to the sort of peer to peer influence, because most people who brave it up and see some public involvement in action, go and talk to some patients about their research. Suddenly sort of, you know the light bulb goes on and they say, "Oh yeah that’s really good isn't it?" and you. It is really quite extraordinary how many people who are doing health research have never talked to a patient. So you know it's tricky in that respect.

Giving up control feels worrying at first, but Alice has found it generally a good thing. She knows some colleagues find it harder, however well-meaning they are.

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Age at interview: 26

Sex: Female

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I think it's tricky because at the back of your mind is always the thought if they could suggest something utterly ridiculous that is totally implausible and could never happen; what if they say, "I want every person in the study to be given Google glasses," so that, you know – or something like really that couldn’t happen.

…So at first I think it feels a bit worrying because of what might happen or what could happen. But I suppose it also, at times, felt, I'm not sure if reassuring is the right word, but it was nice to know that if you weren’t sure about something, or what the best way to go with something was, or what you should focus on, you could get the opinions of someone else who had that lived experience who could tell you. So if I was doing a systematic review about something and I could, you know, the research question wasn’t, it was still being focused, it was in the early stages, that I could go to people who had a vested interest in it and say, "These are the options that we have, or you could choose something else, what do you think about these things?" So positive and negative, it was worrying but also a good thing.

…I think I didn’t personally didn’t have so much of a problem with the giving up control thing because, I don’t know, maybe it's just how I am; I'm not sure why. But I know other people I worked with who found it a lot harder to come to terms with not being the big ‘I am’, the one who knows what to do and giving up the control is very hard for some people and actually genuinely giving up the control as well, not saying these are the options but doesn’t this one look good – you know, not leading people but probably to a certain extent I did that kind of thing too.

I think that’s a really hard thing to do, to actually genuinely be giving people the control, not just hoping they agree with what you think and then going ahead and doing it anyway. And even the most well-meaning person I think can find themselves erring on that side at times.

Tina’s colleagues are enthusiastic about involvement and she believes attitudes are changing, but patient views have often been dismissed by researchers as ‘just anecdotal’.

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Tina’s colleagues are enthusiastic about involvement and she believes attitudes are changing, but patient views have often been dismissed by researchers as ‘just anecdotal’.

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Age at interview: 56

Sex: Female

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What are the attitudes to involvement amongst your colleagues or do you think in the research world in general?

My colleagues it's brilliant, because I work with colleagues who do this kind of work, so I'm very lucky. The research world in general I think is changing. Ten years ago I was definitely the mad woman on the block, definitely.

But I think, well, I think it's changing. And I think people are recognising the point of doing it. I think there's still a long way to go but I'm very positive for the future. I think we've kind of hit; we're getting near the watershed. It's been a long, hard road there – it hasn’t been positive in the past. ‘Anecdotal’, that was usually the thing – ‘oh it's just anecdotal’ – so you don’t want to get people's anecdotes? People go home and give anecdotes about your surgery – do you not want to hear that? If you listen to the anecdotal discussions about where I live, there is one hospital that you wouldn’t go to. Now don’t they want to know that? Don’t they want to know why people in our region go anywhere but not there? They're really important things to know.

Somebody a long time ago wrote a paper called 'Hot Gossip' and I read it when I first started at the university about 1998 or sometime, and I lost the paper and I can't remember who wrote it, but it was really good because it was saying these are the things that you want to listen to; listen to the hot gossip because it's important. So why are we dismissing anecdotes? Now I'm not saying we should act on an anecdote – what we should do is just some systematic enquiry. But collecting people's stories is really how we do it. I just - yeah, but I think things are changing. I'm positive and I think the whole PPI initiative, even though I don’t think it started off, I don’t think they knew where they were going to go. I think they’ll get there; it's been enormously, enormously helpful. All this stuff about having patient involvement, either in practice or, is enormously helpful. It's just widening our horizons isn’t it?

Sometimes researchers have felt forced into doing PPI, with little belief in its value for their projects and little support to do it well.

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Age at interview: 32

Sex: Female

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If I had to stereotype it I'd say the, sort of the younger people in the department, and PhD students particularly I think, tend to be very positive about it, and I don’t know if that’s just because they're sort of more open to they want to talk to patients, they want to get these different perspectives. I think, I think everyone now has bought into the idea that they have to do it and for a while I think actually they resisted.

I think there were people going, "But you can't do PPI on my quantitative survey," or, "You can't do PPI on a systematic review, well it's physically impossible," and now I think you know they’ve realised actually that'll get their funding application balanced, that will get them a red, you know, cross from the funder and that kind of thing. But in some ways maybe that’s had a negative implication you know, people think well, 'Well I was forced to do it; I never bought into it really, but it's something that you have to do.' I think… I think there's, I think there's scepticism ; you know I think as researchers you know your job is to critique stuff and say, "Well where's the evidence base?" and so when you say something like, "PPI makes better research," they say, "Well where's the evidence base?" So I don’t think the evidence base is there yet.

So I think it's natural in some ways and I do think there's a kind of a cultural issue. I think it's, I think if, you know, you’ve learned to do research and that involves treating and relating to patients and participants in a specific way and how you communicate with them and what you sort of take from that encounter and what you do with it and your perceptions of what our role is which, you know, to some people it's perhaps, it comes back to this idea, "Well what if you know a lot of patients don’t know what's best for them," and that’s where, you know, research can be very important because it takes data or it takes opinions and it can give up all of you and I think for them they look at it and it, they are not convinced by the idea that getting, you know, some nice lady to come along and say and critique your study; I think they think well what is that going to do . Yeah, and as I say, I think that cultural difference in, so how you then relate to people and that’s really, I think that’s really hard.

You know I think PPI requires a lot of personal skills and I would say, I don’t know if I have all the personal skills [laughs] that I think are required. And that’s kind of the problem, you just get, you can end up just thrown into it; you're expected to, you know, perhaps talk to people who are very upset about certain treatment or something. And then you’ve got to tell them about your research, and you’ve got to communicate it in a way that is accessible and even handed. And then you’ve got to be able to draw out people's opinions, and then you’ve got to be able to negotiate with them. And then you’ve got to be able to, you know, it's a lot of, it's asking a lot, I think, of researchers as well. So I think there's scepticism and I think there's sort of a reluctance to kind of, you know, get engaged with something which can be very, very difficult sometimes.

As Bernadette suggested above, occasionally people may feel the career incentives for academic CVs (such as the need to publish in high impact journals and attract prestigious funding grants) are in conflict with good involvement. Several researchers noted that it is often seen as something for junior staff to do.

Sabi provides support to colleagues who have little experience or understanding of involvement. She challenges the idea that it can be ‘devolved to the most junior person’.

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Age at interview: 50

Sex: Female

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So I've used PPI in my own research but currently my role is one of leading patient and public involvement and support, leading it for the CLAHRC and developing a vision and putting that vision into practice - and I can talk some more about that later. But also supporting other researchers who may well not be that aware about the role of patients and the public in research and how they might go about it, while at the same time experiencing the expectation that they do so. And that puts a lot of neophyte researchers or clinicians into a difficult position because they know that they should be doing it because that’s what the discourse is from funding bodies, or the majority of funding bodies, certainly the NIHR – the National Institute for Health Research. But there might be messages that they get from colleagues who say, "Ooh you know not sure that that’s a good thing to do and what do patients know anyway; and patients come with an axe to grind and they’ve got an agenda and they might just derail your research project and it's really difficult to know," and others will talk about tokenistic involvement.

And a lot of the work that I do for the RDS (Research Design Services) is around getting people to think constructively about the role of patients, carers and members of the public in their research studies, and that might be very different from one study to another. I think it's a way of thinking about research that is important not sort of valorising particular methods, such as, you must always have, you know, two PPI advisors on your research steering group – that might not be appropriate for the sort of work that you do. You might, I think it's about giving people permission to be much more creative in the way that they involve lay people and patients in their work and I suppose if I've achieved anything that would be what I try to do.

…And I thought hard about how you can make it happen in meaningful ways that it is meaningful for the research as well as for the individuals involved, and in ways that, that pushes the conversation on, pushes it forward, and gives people intellectual stimulation as well because there's - There is a perception that the doing of PPI can be devolved to the most junior person on the team and I think that’s potentially a danger because it's not, it's not terribly helpful for the most junior person to be lumbered with something that is still quite so poorly understood and theoretically for poorly evolved poorly, you know, evaluated and the impact poorly understood. And yet you ask the most junior person to carry it out - it's nonsensical I think. It needs to be thought about and integrated into any project or programme at work, of work, at a very senior level because it is intellectually challenging and by ignoring it, you know, you're really not going to move the field on.

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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Ceri: I find it interesting that so much of the, the researchers who are involved are female. You go to meetings about public involvement, academic meetings and you get one man and 20 women and is that because the sorts of skills, as we said earlier are they’re softer skills about communication and listening and empathy? Or is it because it’s not actually seen as a core thing and it ends up getting side lined? If there’s more money and it’s seen as having more profile will that bring more men in? The very fact the person who leads our team and champions it here is a woman is that significant? I don’t know. And to be fair actually there is another person who champions it here and he’s a man so now I’m cautious about drawing too many conclusions but. It is, I do wonder if it’s seen as being one of the softer sides of things and therefore has a lower status unfairly.

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.

A carer inspired Sarah A’s whole project, made recruitment easier, and improved dissemination. But she feels there isn’t enough academic career recognition of good involvement work.

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Age at interview: 32

Sex: Female

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Has that collaboration with your partner in the carers’ project – has that made your research better and if so how?

Yeah. See in this, I'd still say it depends what you mean by better and – let me think. So I would say, I mean pragmatically speaking, that project would not have existed without her – we weren’t going to do that study. So in the sense that there is a potentially neglected area and my experience so far has been that people think it is a really neglected area. People you know are really glad that research is being done under this topic. That’s better because that wouldn’t have been done unless she had been there to instigate that work. I think pragmatically from my point of view it made my, you know, that start of the project thing where you're desperately trying to get people on-board and you're contacting loads of organisations and saying, "Please help me recruit participants," and that kind of thing. When I could say, "This is because my collaborator on the project, she was a carer herself, and she really cares about this issue," I think that opened doors much more easily so I think that was a practical kind of benefit. I think in terms of the research itself, because in some ways we did; so it was a qualitative study – we did interviews, we did analysis of the interviews –and in some ways I think that went, as it would have anyway.

What I want to know is if her; I think a lot of projects get to that stage and then there's kind of that lull and things can get left, and in some ways I think it is her drive and her passion to see this go somewhere that means that I'm still involved in it for example, and that we're still taking this forward; and maybe that, again it depends what you mean by better – so in that sense I think you know I wrote my paper as perhaps I would have wrote the paper otherwise. You know it has stuff about sociological theory; you do some grounded theory stuff, you write it up, put it in a journal – whether that’s better because she was on-board I don’t know. But now I think this focus on, she just says, she's like, "Oh great it's published, so what does that mean? How is this going to help carers; what can I go and tell these people I've spoken to the project about?" and that I think is good and that I think having that voice in your ear to go, "So seriously what are you going to do with this now?" I think that makes it better but it's weird, I would say I'm glad about that because I think, I think that makes me focus on what's going to happen more.

I would say at the same time it's not always easy and it can be a struggle in the sense that, you know, there's half a dozen things I'm meant to be working on and to then feel like, 'But I should work on that because I now have an obligation to her because we've gone into this together and we started it running and I should stick with that,' and I feel that very strongly but I don’t think there's support for that a lot of the time you know because I think it would be, I think so the higher up it becomes like any other project it's like, well you know, is it going to go on your CV in this way; is it going to definitely lead to this; does it fit with the overarching themes of the faculty that we're meant to be doing to please the Dean or something and, so for me I feel, I feel like that should be one of the things I'm evaluated on to be honest. I feel it should be something that you say, "Well I got into a partnership with this person and I'm sustaining it and we're going to carry on with that."

You know it wasn’t a hit and run of kind of take your idea because it helps me get a grant, I've got a paper, see you, bye. I think there should be more encouragement sort of for people to do that because that would then be kind of this thing, genuine involvement and genuine collaboration and I think that’s only fair really to people who, who have, you know put their heart and soul into kind of doing some research with us. Sorry so to come back to whether that makes me then whether I think that made it a better project or. That made it different to other projects I'm on and I think, I think I feel more confident that this is a project that matters and that it's a valuable thing for us researchers to be throwing our time at. So that feels better for me and whether that’s objectively measureable and better I don’t know so yeah [laughs].

For some people who had come into research from other backgrounds to work as PPI coordinators, academic culture seemed very alien and intimidating. Pam argued that it’s researchers that can be hard to reach, not patients.

Pam has not always felt confident dealing with senior academics. Some are more open to involvement than others, but they share an ‘ethical impulse to improve people’s lives’.

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Age at interview: 54

Sex: Female

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I had one very interesting piece of work with the RDS – it was in my last job this was – whereby a clinical psychologist came along with ideas for studying memory loss and didn’t know what to do about PPI. And I had a meeting with her and sat down and kind of signposted her to a lot of INVOLVE resources. And what was really great about that was she was very receptive. And so I discovered that she’d actually got longstanding involvement with a voluntary organisation for Alzheimer’s, I think it was. And so it involved me kind of pointing out to her that she was already involving people. She was already using it having conversations with people about her research. So I kind of helped her to sort of reframe and boost her confidence in a way. But that, that was a bit strange for me because I haven’t always felt confident in dealing with very experienced academics. But I have come to learn that not, you know, none of us know everything, and so I have built and developed confidence in my knowledge of PPI. And I’ve come to understand that actually people do come seeking quite prescriptive guidance and help and assistance, and I enjoy that especially where people are open to learning. People are not always so open, so sometimes people are quite – I had an experience – somebody was quite hostile to the idea pf paying people, couldn’t understand the need for a PPI budget in that way yeah. And I do think there’s still possibly some entrenched attitudes about ‘the experts know best’ and what could lay people possibly have to offer…

So I think what involvement means to me is, varies according to context. Because now for the context that I’m in working with a lot of biomedical researchers, they’re possibly not motivated by emancipatory goals necessarily, but they’re not likely to be unethical people. And so that’s where, as I say, translating across disciplinary boundaries has been quite interesting for me and yeah. So I’ve worked through the RDS service on some quite sensitive topics. So there was one about surgery for women’s bladder and bowel problems and so you can see really that, you know, where clinicians are willing to involve people in that sort of research that they are motivated by, as I see it, ethical impulses or trying to improve people’s lives. And so I’ve had satisfaction from helping that come about.

Ceri understands why universities can seem ‘another world, absolutely alien’. She and Eric feel their non-academic backgrounds can help bridge between researchers and patients.

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Ceri understands why universities can seem ‘another world, absolutely alien’. She and Eric feel their non-academic backgrounds can help bridge between researchers and patients.

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Eric: It was great to be able to have that experience of doing sort of what were often very quick projects and then coming onto an academic environment, where the speed of studies, typically the larger studies in particular, was that much slower, and that much more governance and procedures and bureaucracy, if you like, to go through to get things done. And that has impacts and implications for involving people as participants or indeed in the design and conduct of the research.

Ceri: I hope it helps us in the role that we do, that we both come at this from not the traditional university ‘do your PhD, you know, never leave academia’ world, but we’ve come at it from the real world, as it were, and I hope that helps the way we do it. And I certainly think it informs our attitude.

Eric: Yeah, yes I do.

Ceri: And, and our enthusiasm.

Eric: Yes.

Ceri: I think we’re both aware and enthusiastic about this in a way other people may not necessarily be.

I do remember the perspective that I became aware of that people had of the university when I was in that action research role, that role before I came here, and how the people I was working with found the university another world, absolutely alien, and I had a foot in both camps and I was still able then to see just how set apart the university world was and how the language was different and the ways of working were different and the timescales and everything were different. And it did feel very, very apart from an everyday way of doing things. And it’s difficult to keep that when you are working in the university world, but I think it’s important to keep it and try and hold onto that.

Researchers we talked to identified many other emotional and practical factors behind colleagues’ reluctance to involve patients. Andy suggested it was important to be sensitive to people’s worries and concerns and understand where they’re coming from. Several people suggested they themselves and colleagues might be afraid of or anxious about involvement; uncertain how to get started; lacking in confidence and people skills; and uncomfortable doing it in practice (see also ‘Training needs for involvement’). Suzanne (see above) commented that the research world ‘attracts perfectionists’ who may struggle with doing something they feel is beyond their expertise. Researchers used words such as ‘daunting’, ‘threatening’ and ‘frightening’ to explain both their own and colleagues feelings (see also ‘Feelings about involvement and emotional impact’).

It’s vital to be sensitive to people’s worries about involvement and show by example it can help, rather than just telling people they’ve got to do it.

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Age at interview: 49

Sex: Male

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I think one of the things that you do, so when you, if you actually do it in practice and show people that it can, it can be of benefit that’s the key thing, there’s nothing beats actually seeing it happen and seeing it work and seeing the contribution it can make and we can all tell stories about what Patient and Public Involvement is meant to do but I think there’s nothing like actually delivering it in practice. And I think also being sensitive to people’s concerns and worries about it, like I said before you know I can understand why people are slightly nervous about this first stake holder event, first big public event for [CLAHRC] in many ways I, I understand that’s, that’s a problem and it’s got to be done well. So I think that’s an important thing. I think also one of the things that I said earlier that some people might not think that Patient Public Involvement is relevant to their research and I’ve never seen it to be my role to just go around and saying ‘well you should be doing Patient and Public Involvement, don’t give me any excuses.’ I think if there’s a group and I’m not sure if this is relevant to us and that’s probably, let’s see when a project comes up that we can kind of demonstrate its relevance and in some ways I think the emphasis has been always to kind of do that. So one of the, I have to say most people in [CLAHRC] have been really, you know, open to that, it’s not like it’s been difficult so we’ve probably got a very, we have got a place because of that leadership and history that it’s more contusive.

Researchers may worry about the cost and time needed for involvement, but may also find it ‘daunting’ and feel anxious about doing it in practice.

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Age at interview: 30

Sex: Female

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So I'm trying to think if I've thought; if there's any other objections I've heard of. Yeah I think, yeah maybe the value and then the timing and how much it's going to cost has been the three main objections. And it's interesting for me, when I first came into the Centre I think I said I did a questionnaire with researchers just about their barriers and facilitators to involving the public in their research projects, and those things came through. Those things came through and I was like, "OK we need to think about how we set this up in a way that it's very supportive for the researchers." And I think it can be quite daunting for researchers as well.

So some of the things which also come from that questionnaire was, some of the researchers were quite worried about going in to work with a group of young people, being a researcher going into the young people's group. And we have set it up that way that it's the young people's group and the researchers come into them because of all sorts of power dynamics of maybe one or two young people sitting on a steering group, we didn’t think it would work. And yeah I think the researchers, a lot of them in the pre-meeting before they come and work with the young people's group, in that pre-meeting and they always ask about how can I do this in a way which is interesting to young people? How can I get them engaged in this? And kind of the second thing is, they're really happy that me and the youth worker are going to be there to support them on the actual day because they're like, "I don’t think I've really; well I did a research project a couple of years ago and I interviewed some young people but this is a little bit different and I'm happy you’re there because I wouldn’t want to go into the group on my own without the support and if there's anything that I do wrong or anything I say wrong, just feel free to pick me up on it."

So yeah, so I think one of the barriers and one of the issues for research staff here was they really wanted to do it but they're just a little bit unsure about how to do it; had a little bit of anxiousness about actually going into a young people's group so.

Valerie understands why some colleagues are reluctant to involve people. It is hard work and time-consuming. But there is also continuing scepticism about its value.

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Age at interview: 39

Sex: Female

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And do you think that PPI is going to become more embedded in academia in the future?

I think yeah. I don’t see how it could not with, you know, as I say, it will take time for it to be done well but the changes that are made already make it impossible for it not to become more embedded in research, the requirements that are in place, if you are someone who views it only as fulfilling requirement, it still has to be grudgingly impacting your work and the way that you go about it. And those requirements will become progressively more embedded, you know, more what is required to show it to demonstrate PPI will become more involved than simply saying, "I asked a couple of parents and that was it - once."

How would you, what would you say to the people who just do the tick box, or who are reluctant or sceptical – reluctant to do PPI or sceptical?

Yeah, yeah. I can understand the – sceptical, less understandable than reluctant. I can understand reluctant from a practical point of view – its hard work [laughs] and time consuming. Sceptical - I just think, you know, there's, it's hard to argue in my mind that it's not going to have a positive benefit to do some level of… Even if you’ve got a consultation as opposed to, you know, team working. I think it's hard to argue that there won't be a positive influence on the way you design your research which I would have thought that most researchers somewhere inside must see that as a good thing. It's the hard and fast evidence for impact, it obviously is something that it's going to grow the idea of getting everybody on-board with the idea of PPI is step one wasn’t it? Now there's, “oh, oh, we think it's a good idea we'd better think how we're going to demonstrate that to the rest of the people,” and it's just an evolving.

I think, I guess people will be happier if they can see what they consider to be ‘valid evidence of impact’ and that is another question that you were leading to earlier, what actually will constitute for people, valid evidence that there has been some impact positive or negative on research. Answers on a postcard. But yeah, I think that’s the problem though, it's reluctance, is understandable and, as I said, you know, there are potentially some people who will argue that their field of work doesn’t always make sense and in some cases they may have a valid argument. But [laughs] yeah.

Informal networks with colleagues could help overcome some of these worries, by enabling researchers to share their experiences and challenges. As Chris said, ‘Even kettle conversations whilst making a cup of tea… It would be much more difficult if you were on your own doing this without a supportive community of people’.