Researchers' experiences of patient & public involvement
Doubts, worries and debates about involvement
There are many psychological and organisational theories about the factors which affect whether people adopt new practices. A common component of these theories is the extent to which people believe that a new practice is justified, that a good case has been made, that it will bring benefit, and that the costs of doing it will not outweigh the benefit.
While our interviews covered many positive reasons for and experiences of involving patients and the public in research, researchers also raised a wide range of doubts and concerns, both their own and those of their colleagues. Some people gave permission for their interview to be used in written form only, often reflecting a worry that being seen to be too critical about involvement might be damaging for their careers. A few withdrew their interview from the study, and of course others with more sceptical views may have chosen not to take part at all. Even among those with more broadly positive views, it was seen as important to be able to discuss doubts and problems and not overstate the value or appropriateness of involvement. But this could feel difficult or risky. There was a sense that both the duty to involve people and also the methods of involvement were being imposed. As Marian commented, ‘The elephant in the room is the being told “you must” - and the being told “you must do it this way”.’
Involvement is here to stay but David worries that we need to be careful it does not go too far. He has seen good projects turned down because their PPI was not perfect.
Involvement is here to stay but David worries that we need to be careful it does not go too far. He has seen good projects turned down because their PPI was not perfect.
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Well I've already mentioned that I think it's got – it's here to stay. There needs to be some control of it and not let it run out of control because I've seen that happen with other things in the past, and you just need to mention the name PPI and floodgates open for funding or whatever it is. I've seen very bad decisions made in terms of a good project being turned down because it's not quite up to scratch in terms of PPI. I think we just have to be sensible about it. How will it change? Mm the groups, the organisation of it is in place now already so that will progress and get tighter, and I like to see that. Probably the foundations are in place already and it will be increasing sophistication. I think some of the clutter of the PPI will be cut off it, and the fat will be cut off and we'll end up with a very nice lean process with a better understanding of it. I suspect we don’t really understand PPI properly yet. So, from a researcher's point of view how that process works, how we pick them – I mean you touched on it already with that there. What makes a good person; should you have them there; should it be professionalised? All those questions are research questions in themselves. And so they’ll be a raft of research which looks at those sorts of things, and hopefully that will generate, higher quality PPI as well. I think it's progressing well, it'll be good…
No I just don’t want the emphasis to be, or it to be over-emphasised. There has to be an emphasis and we've, you know have covered a lot of ground talking about what's good and not so good. But it's just about, you know getting the right emphasis and not going too far with it. Again that’s a subjective, it's an opinion and I don’t know what, where do you stop on that? There'll be a government agency which says that this is the most important thing from now on and we will all have to adhere to it. But on the ground I think it has to be moderated... Otherwise you end up in a place where you'll lose out on the other side you know. It's a bit like discipline in schools, or in universities, where you get to a point where the students have so many rights that the teacher has no rights at all, and they almost give up. You’ve seen that happen. We don’t want to get to that place where PPI is king over everything. That would be wrong in my opinion. We're a long way from that at the moment, but we should just be mindful I think.
Patient involvement can make you think differently even if the impact is not huge. But Alison sometimes feels under pressure to be more positive about it than she feels. She says ‘about sixty percent I want to do it.’
Patient involvement can make you think differently even if the impact is not huge. But Alison sometimes feels under pressure to be more positive about it than she feels. She says ‘about sixty percent I want to do it.’
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And occasionally there have been cases where someone's picked up on something, you go, "Ooh yeah good point I forgot to take account of that in this thing I've just written or..." So yeah there are certainly some examples of those things but not that many to be honest. But also I guess it gives you a sense of confidence that, if you’ve, in terms of interpretation of material and also, you know, writing up an information sheet or a plain English abstract or something, it is your people there to check it with and you think, 'OK they may not have changed many words, they may just have said it's fine…' but that’s a useful thing, that’s an endorsement.
Yeah so yeah I think don’t abandon it, that’s for sure for all my reservations.
And how much is it something that you want to do?
Mm about sixty percent I want to do it. The bits of me that don’t want to do it are the kind of, 'Oh god I've got to be polite to people when I’m not in the mood to be’ [laughs] – all that kind of stuff. And this sense of oh I've got to, there’s a word for it. When you're sort of smiling and endorsing one way of doing something and inside you're thinking, 'I know this is a waste of time,' or pretending something is true which isn’t, I feel really isn’t true and that’s, I'm giving you very mixed up response here aren’t I? But that, no on balance I think, 'Well kind of, it's a nice thing to do and it might make a bit of a difference but I don’t think it makes that much difference.' But the public message we have to sort of endorse and support is, 'it's terribly valuable and important and makes a massive difference.' So I think that to sort of disjunction between what I think inside and the kind of the public story, I feel uncomfortable with. So that’s one reason for, yeah the reason for my forty percent – oooh don’t make me do it.
Alice worries that funders may overlook projects which are valuable but do not lend themselves to PPI. It shouldn’t be forced into everything.
Alice worries that funders may overlook projects which are valuable but do not lend themselves to PPI. It shouldn’t be forced into everything.
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…Having seen real life examples in my work I can see where we should be doing it but I don’t think we should be forcing it down into everything, every aspect of every bit of health research because I think some things aren’t suited to it necessarily - I may be wrong.
- Whether and how we can demonstrate the impact of involvement (see ‘Measuring the impact of involvement’)
- How far patients and members of the public can ever be ‘representative’ (see ‘‘Representativeness’ and diversity of people who get involved’)
- How to recruit people and ensure greater diversity (see ‘Finding people to involve in research’)
- Matching people appropriately to the task, for example whether specific lived experience is needed or a more generic lay perspective (see ‘Finding people to involve in research’)
- Whether long term involvement and training make people more effective contributors – or result in them becoming ‘professionalised’ and losing their fresh perspective (see ‘Long term involvement and ‘professionalisation’’ and ‘Training needs for involvement’)
- Whether involving people as user researchers is PPI, or rather just research (see ‘Definition, purpose and values of patient and public involvement’)
- Unsupportive or dismissive attitudes from colleagues (see ‘Organisational support and leadership for patient and public involvement’ and ‘Colleagues’ attitudes to patient and public involvement’)
- The question of paying people for their involvement (see ‘Payment, expenses and funding issues in patient and public involvement’)
- Lack of organisational support, time pressures, bureaucratic burden, lack of academic career incentives and assumptions that it is a junior task (see ‘Organisational support and leadership for patient and public involvement’ and ‘Colleagues’ attitudes to patient and public involvement’]
- Feeling threatened or undermined as researchers (see ‘Feelings about involvement and emotional impact’)
Additional concerns included the potential burden on patients and how far good use was being made of their time and enthusiasm. Linked to this was the continuing worry that approaches to involvement still too often revert to a tick-box or tokenistic approach, involving people too late or too superficially; as Sabi and Andy suggested being unclear about what to do and not really believing it will work are likely to make lack of impact a ‘self-fulfilling prophecy’. At the same time, some researchers expressed doubts about the value for money of involvement, and dealing with irrelevant input, including from people perceived to have ‘an axe to grind’ or a single agenda.
Involvement can be burdensome and wasteful both for participants and researchers. Dealing with hostile or ‘single issue patients’ and lack of senior support can make it hard.
Involvement can be burdensome and wasteful both for participants and researchers. Dealing with hostile or ‘single issue patients’ and lack of senior support can make it hard.
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I know finance is always a big issue; a very sensitive issue about not getting adequate, sort of, compensation, I guess, for the time they spend on things, or the speed with which they get that recognition. There are ownership issues, you know, if they come and they say, "Well this was my idea and then you took it, and made it something that wasn’t my idea but you're saying it was PPI inspired," you know. So I think they're kind of the issues for the PPI members. So there's kind of the burden, the cost, and the level of, I think, how much they feel a genuine collaboration is going on. I think, you know, that thing, that issue of saying, "Oh well you're doing this to tick the box," that comes up a lot, and I think they're rightly, they rightly get very angry about that.
From a researcher’s point of view I think there's a fear that kind of you'll sit there with these PPI partners and they’ll just tell you what you do is rubbish - which no-one wants to hear [laughs]. I know a lot of people talk about this issue of, the single issue patient. That you're going to have just one person who comes on with an axe to grind and that gets set alight, you know, they're just going to, they're not going to be able to think, sort of, more broadly, or be able to compromise about where research should go. There's burden for the researchers as well. In my experience it's typically, sort of, the more junior researchers who basically get told, "Oh you can do the PPI bit on this project," or told, you know, "Here's the two hundred quid we budgeted for it, go and run a focus group or something." And they, you can get very little support to do that, so, and I think that can be, you know, that’s basically adding to the work you’ve got to do and makes it more intimidating that you're kind of floundering to try and run what actually I think can be very complicated sort of projects, complicated work. It involves a lot of diplomacy and a lot of patience and, you know, if you’ve just been thrown into it by your PI who then says, you know, "Can you write the paragraph on this for the trial report?" those two things don’t match up at all.
And I think a lot of them do have this question that ‘well is it making things better?’ You know, ‘how is this improving my research?’ How is this, you know – I think they worry that it's a, it is a tick box thing and it's kind of a, that basically, you have to do this now because the NHS and the NIHR tell us we have to do it. So we tick the box and actually it's a waste of money, it's a waste of time, and it's not genuinely going to improve things so I think, I think there's. I think people who want to engage with it, I think it's this issue of burden and anxiety over whether they’ve got the skills to do that, and the support to do that. And then I think on the other side there's people who are quite cynical about it or sort of very sceptical about it, and for them I think it's more, they don’t buy into the idea that they should or need to be doing it. So that’s what I think.
David has come to value involvement, but he explains several caveats and worries, including trying to find a balance between the knowledge of patients and researchers.
David has come to value involvement, but he explains several caveats and worries, including trying to find a balance between the knowledge of patients and researchers.
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There's caveats, so I think you have to be careful you don’t take it too far, I'll probably talk about that a little bit later because I think there is a perception sometimes that PPI is the “be all and end all,” and I think we have to be slightly cautious of that. It's a bit of a pendulum; I see it swinging both ways. So, there was nothing as I said before, and it's swung now to the other direction where we have to be cautious that we don’t undermine clinicians and scientists' viewpoints. Sometimes they have a very fair opinion, and sometimes the core of the decision making has to come from that body. It's helped by the other side but it's unreasonable to expect patients, and sometimes clinicians who aren't involved in it, to really fill the void space of knowledge when they haven’t got it. So, it's a nice combination of the two together, and we may be swinging one way a little bit too far, but we can come back to the middle at some stage.
Why do you think it might have swung one way too far?
I think that’s a combination of things as a knee-jerk reaction to. People like hobby horses don’t they, for one thing – so there's a bit of hobby horse going on I always think that, you know this is a new, something new, something innovative and you have to tick this box. The funding bodies have grasped that as well so it has gone in that direction. And to get from, you know we shouldn’t hide from the fact that a lot of these things is about getting funding as well; the research won't go ahead, so there's some box ticking to be done. But it has to be very carefully worded as a box ticking exercise. It does need to be there in part of the submission but it's not box ticking in the old sense. And, maybe some people haven’t, they’ve allowed it to swing that far because it's a component which didn’t exist before and people like to sort of over enthuse a little bit about that. But that’s the only negative thing I say about that; it's not an overly negative thing. I think it's just a question of damping down over enthusiasm for it, and achieve personal balance I just like things to be settled in the middle.
Yeah OK. When you were sceptical about it, what were your concerns?
My concerns were that the patients were ill-equipped to make appropriate decisions. We were all knowledgeable and the patient was not, and they would mislead, which turned out to be unfounded. The other reason for scepticism was that some of my early involvements in forums with patients were not the best experience. In terms of domination of a session you'd sit round a table [and there's a limited amount of time] and someone would dominate discussion. As you get older you're very used to being efficient with your time and getting things done to get to place B from A as quick as you can. Patients wouldn’t necessarily see that so you had to be a lot more patient. I found sometimes that you could go down tracks which probably you didn’t want to go down. Secondly, if you had the wrong person, or wrong persons in those sorts of forums they could dominate and skew the whole picture. It ended up being less helpful than it perhaps could have been.
And I don’t think there's any other cause for cynicism. When you look back you wonder why it was not part of the original process. It seems very late in the day – we've been doing research for a long time, it's been only in the last five years probably that this has been very current. That’s 2010 you know; I've been researching for twenty five years and it just seems very late in the day to start asking people who are involved their opinion on matters. I'm slightly embarrassed about that.
Valerie reflects on how to describe people who get involved and her worries about whether too much is asked of them.
Valerie reflects on how to describe people who get involved and her worries about whether too much is asked of them.
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We don’t, oh god, I don’t think we actually have a preferred terminology. I will, research partner to me is a terminology. I refer to parents as colleagues if I'm introducing them at a meeting with an external person. I think it's, to my mind particularly if I'm introducing people in a, to an external person, I want to make that clear. I don’t know how important it actually is to parents [laughs] when we talk to them because I think it, yeah, to me it's important that if they're having a conversation with us, they're having a conversation with two colleagues, not researcher and parent in some kind of weird way as we presented in our comedy skit about the way that people may perceive that partnership. So I don’t, yeah, we don’t have a sort of fixed terminology that I'm aware of [laughs]. But I don’t mind research partner. You kind of, I mean there was a conversation about it at the PPI conference wasn’t there about what terminology people are comfortable with. I think, I suspect it's probably just another one of those of which there are hundreds of things that we tie ourselves up in knots about getting right that people really don’t mind too much as long as you're respectful. But yeah it will do.
What do you think the things are that we tie ourselves up in knots about other than terminology?
We tend to worry a lot about whether we are sending too many emails, whether we, whether we're asking too much of people, whether we, yeah expect too much of them. And I think there's a tendency to be a bit almost paternalistic in a way as if we need to protect them, and there are probably pros and cons to that kind of attitude, and I've done it myself – I noticed the other week that one of the people that I've worked quite closely with, I said to her, "I see you're in again on Thursday, are you taking on too much?" And she actually said, "Yes I think you're right; I'm glad you said that, I'm going to cancel that meeting." So, you know, there are pros and cons that these are grown-ups and I wouldn’t necessarily say to somebody else in the research team are you taking on too much? Although I might if I thought they were, do, you know. So it's kind of, yeah it's, we do worry quite a lot about, and all these things around words and quite often people, people's lives are actually way too busy to worry about that and they’ll just ignore our emails or they’ll tell us if we're asking too much of them. So I think it's that, it's one thing to protect I think which is probably not a bad thing but can be a bit overkill sometimes.
It’s ‘unrealistic and unfair’ to expect individuals to be any more representative than clinicians and researchers. Sabi is worried by tokenistic approaches.
It’s ‘unrealistic and unfair’ to expect individuals to be any more representative than clinicians and researchers. Sabi is worried by tokenistic approaches.
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So that’s my role at the moment really leading, leading PPI and helping other people to think constructively about PPI to avoid this horrible tokenism cycle, you know, where people don’t believe it's going to work. But they have to do it so they do something to ostensibly show that, you know, they are, they are involving patients but it is in a very ineffectual, unhelpful way which leads to no impact, no difference and then that whole idea about PPI actually being the Emperor's new clothes is reinforced. So it's an attitude of mind – needs to be supported by high quality resources and good practical advice. As I say it's about creativity and thinking about your project and how patients can be heard and there might be a myriad of ways in which that can happen.
Sometimes the quality of involvement in practice does not match what it looks like on paper, and patient contributions may be ignored or irrelevant.
Sometimes the quality of involvement in practice does not match what it looks like on paper, and patient contributions may be ignored or irrelevant.
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…So on paper it looks like incredibly complex and thorough. And then when we actually pick apart what happened – you know one of the study areas ‘How often did the local implementation team meet with service user involved?’ Ooh not at all – that on paper it was meant to be there but actually other things happened that the local researcher went and talked to, you know, I don’t know and got some views but, on paper you had all this stuff which looked really great, possibly a bit cumbersome but in reality so different.
So yeah one of the risks I guess is that you have in sort of pushing for user involvement you're, you can generate a kind of tick-box response. Or even, you know, with the best intentions at the beginning of the study, people hoped that this, this and this would happen but actually for whatever reason it didn’t. And that’s partly to do with just practical issues like, you know, when you have one researcher who's got some contacts – that person leaves and a replacement doesn’t have the same contacts and those are little things like that.
Andy argues that unless you are clear what you expect from PPI, you won’t do it well or be able to identify impacts, so it will appear to have failed.
Andy argues that unless you are clear what you expect from PPI, you won’t do it well or be able to identify impacts, so it will appear to have failed.
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So I think one of the things that you need to do is to sit down as a team and say what do we want our PPI to achieve? Is it to improve recruitment to trials? Is it to empower people? Is it what…? And it may be more than one and that’s fine. Then you have to think if that’s our aim what is the mechanism that we’re going to build into the project to deliver that out, to deliver that. And clearly if you’re saying that you one of your outcomes of PPI is that people will be, patients and members of the public can be involved and feel that they’re on an equal footing with the researchers and contributing and so on and then your Patient and Public Involvement mechanism is an annual once a year or once every six months meeting where you invite patients and members of the public to comment on what you are doing, that mechanism isn’t going to deliver that outcome.
So once you’ve decided that you’ve got to make sure that your mechanism is at least reasonably likely to deliver this thing and then once you’ve done that you’ve got to clear out, come on a clear mechanism then you can say well what evidence would I need to collect, not to prove it necessarily because I think it’s very difficult to prove some of these but at least evidence that would, you know, give us some idea to support or refute whether we were able to achieve this or not. and then that again depends, so whether you use quantitative or qualitative research depends on exactly what you want to do, so if you want to use, if you want to know if it improved recruitment to your trial then you’re probably going to use some quantitative methods, if it’s about did people feel really involved and able to participate on an equal footing with researchers then you’re probably going to do some observational stuff and some interviews and qualitative research so then you build in your methods to, to suit that, the evidence and the evidence that should be driven by the question, your question tells you what kind of evidence that you need to need to collect.
And I think one of the problems with it is a kind of a self-fulfilling prophecy with Patient and Public Involvement is that you don’t put much money into it you aren’t clear about what you want to achieve, you don’t put sufficient mechanisms in and then the impact is very small and then when you can’t see much impact you feel that the next time that you do your research you again as a result of that experience you’re not going to put much resources into it, you’re not going to spend a lot of time planning it, you’re not going to be clear and it becomes a vicious cycle. So actually what we’ve got is badly thought out and badly planned PPI that’s not delivering much impact and the fact that it doesn’t deliver much impact reinforces the fact that we don’t spend much time on resources and so on. And I think that’s one of the things we need to break out of.
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.
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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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.
Kristin does not like the idea that ‘researchers are bad and people who are involved are good’. Involvement conferences can end up feeling ‘a bit researcher-bashing’.
Kristin does not like the idea that ‘researchers are bad and people who are involved are good’. Involvement conferences can end up feeling ‘a bit researcher-bashing’.
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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.
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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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.
Gail wants people to have real influence on research, but ‘that doesn’t mean whatever they say goes’. It has to be a negotiation.
Gail wants people to have real influence on research, but ‘that doesn’t mean whatever they say goes’. It has to be a negotiation.
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So even when they’re given the sort of the task and told to go away and do it, they don’t go off and work on their own with that. I’m always there and my research team within the project is always there to help them achieve what they want to achieve, but they’re telling us what they want to achieve and you know the end product tends to look, you know, very much how they want it to look. But we’ve supported them. So I think those are my key roles is making sure that involvement happens in the way that we think it should be happening and the way we envisaged it. And to support young people to, to play their role and play that role whatever it is effectively.
For Sergio the positives of involvement far outweigh the negatives, but he worries that pressure to do very applied work makes it harder to pursue creative research.
For Sergio the positives of involvement far outweigh the negatives, but he worries that pressure to do very applied work makes it harder to pursue creative research.
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OK. And can you tell me any examples of what changed after you'd had research reviewed by that panel?
Right. Examples are both positive and negative. The negative ones that in so doing, there is a push for research to be very applied and research which is applied loses the grip with blue sky ideas. If we only do what patients want or what the industry wants, then we lose the benefit of creative research. We do mundane work - necessary but not carrying out interesting ideas – so we should be careful in not abiding by, completely by the view that people who are not expert should guide the research. The positive aspect of it all is that, and the positive is overwhelming the negative, is that once you have gone through these hurdles and you involve with them – so you do your studies. There is very little in modifying your studies as such but you have to make sure that what you do is understood and criticise or appreciate it. So what this pushes you to is to make sure that when they come up for a day, the story you tell it's coherent with your data, but has a flair of lay people understanding.
Researchers have to be careful that patient involvement does not threaten the scientific quality of research.
Researchers have to be careful that patient involvement does not threaten the scientific quality of research.
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There is a risk of the quality of the research absolutely both, yeah a threat to internal validity etc. etc. But if it comes before that in a way which is what my project did although they carried through but I kept an eye on there and there were times when they said things and I said, "No look we can't do that, that would not be good for the systematic review," and they agreed with it, I had no problem with it. They saw me as the expert on systematic reviewing and they were the experts on – sorry I ramble – anyway.
There might be times where what patients suggest may be in conflict with scientific rigour, but this can be resolved through good communication.
There might be times where what patients suggest may be in conflict with scientific rigour, but this can be resolved through good communication.
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I shouldn’t think that would be a major problem. I think there's obviously if patients say; insist and say in a questionnaire of being adapted or some item being put in and where that would then compromise things or make the data collection a bit messy. One can see with a few situations have objected to a particular drug being there or and there was good academic reason. So there may be a few instances where there may be a conflict and there be an objection, but I suspect that with good communication and with good explanation most of those things will be ironed out. But in theory where you're going to involve another party then there's always scope for disagreements and different perspectives and differences of opinion.
It’s important to be open about times when involvement does not go well and to learn from mistakes. Just doing it is the best way to learn.
It’s important to be open about times when involvement does not go well and to learn from mistakes. Just doing it is the best way to learn.
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I do kind of think it’s really important to people start, when they start off with Patient Public Involvement to actually start getting and doing some Patient and Public Involvement quickly because that’s how, in a way that’s how you learn. And if I go back to giving an example of the prioritisation process so it wasn’t trial and error in the sense that we were very keen that, we were very sure that we have commitments and making sure that they would be at least some research projects that came from patients and members of the public and we were also very keen that they should have an input into judging not just the patient initiated projects, but all the research projects whether it be from academics or whatever. The first time we did it, it was all done to a very short deadline, so the papers only came out like the day before the meeting and some people didn’t pick up the e-mail or whatever so they got, they got them on the day the papers that went with the questions so there’s a team heading did some background research on the questions to, to help them make decisions but it was written in not the most user friendly language had a lot of jargon and stuff in it. never the less, I mean people did come back and I think that’s because they could see, I mean we were very open and saying we are doing this for the first time and so we said, you know, we are making mistakes and we know we are making mistakes, but you could go on forever postponing doing it and in a way we thought this is where we are and we can get on with it. And I think what was really valuable was that we were very open about that so we weren’t trying to pretend anything other than that we were trying something out and there were mistakes. but I think people felt very, why people came back was two, people felt they’d been involved right from the very beginning so it wasn’t that something had been set up and run for years and then they were brought in, they were in there from the beginning and because they were making decisions about which research projects we would take forward I think there was a real sense that people very genuinely being involved in the decision making process that mattered. And then when we came to do it a year later when everyone, well six months later you know documents came sort of at least a week in advance and I think we originally had a glossary of jargon to go with it and then we actually had a subsequent version decider, actually don’t have glossary just don’t use jargon in the first place so we did that. then there was the innovation of, of saying not everybody has to read everything why don’t people volunteer to lead on a couple a of, of each one so everybody shared the burden around in that kind of voluntary basis and maybe helped to give people the confidence to do that. Another interesting thing was that the whole of the Patient Public Involvement group would look at the, what was the shortlist of questions, they get more detailed look at and would make decisions about which ones to vote for and then they sent a couple of delegates to the group that makes that decision and they were sent originally with quite a strict mandate, these are the things we want you to vote for.
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.
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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.
Vanessa would like to see more national leadership, networking and shared learning. Too often involvement is delegated to junior people with little support or job security.
Vanessa would like to see more national leadership, networking and shared learning. Too often involvement is delegated to junior people with little support or job security.
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But there aren't natural networks that you join and I think that something could be done because it feels that if we're saying that PPI is really vital to research, it's a specialism and specialisms need leadership and they need training and they need support and they can't grow without that. It's all, it's here, there, it's all bits and bobs and its people doing it in their evenings.
It's become to a; it's a level now where it's more than that.
…I think people will probably talk to you about, you know there's great concern that the majority of people working in PPI are in quite junior positions, and low pay; maybe on quite flexible contracts, don’t have any job certainty and the people that get involved, the public that start engaging in research projects and take on PPI roles it's, you know it's a meeting here, a meeting there. So you are, it's, you know it's still at this stage of development and it's trying to work out. You don’t want to strangle all of that and it's great that you’ve got all this innovation going on but how do we then take that forward as a whole body of work and as an expertise area and develop it – it needs structure and leadership.
Sabi feels the dichotomy between PPI in research and PPI in service improvement is a false one. There should be greater continuity between research and implementation.
Sabi feels the dichotomy between PPI in research and PPI in service improvement is a false one. There should be greater continuity between research and implementation.
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I think the dichotomy between, you know, public PPI in research and public engagement in public services, service redesign, and an implementation is false. And we need to bring those two worlds together because, I think, just looking at impact of PPI in research, especially in health related research, is not helpful. It's what happens to that research down the line – that’s when you fully realise the benefits of PPI in the knowledge generation part of it. You know it's like looking at a journey and stopping half way – you haven’t got there yet. So why look at impact half way through the journey – look at impact right at the end of it and then the people who were involved in helping you design the study, think about your methods, think about all sorts of practical issues around your data collection, your data analysis. The governance and management of your project should be the same people who are involved in making sure that that research is implemented and evaluated, and then any gaps and knowledge identified, and that the whole cycle restarted with, “OK we know this, we know that but we don’t know this yet so we need to, we need some more research to do that,” And I think, you know, that’s how it should work, not just PPI in research, it's a too short a timeframe to evaluate impact in.
So that’s my strategy [laughs].
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