Patient and public involvement in research
Representing a range of views and experiences: being representative
A key debate in patient involvement is how far people who get involved represent others. There are two main elements to this debate: one is about the diversity of the people who get involved, and the other is about how far we can or should expect any individual who gets involved to be ‘representative’ of other patients’ or carers’ views, which is discussed here.
What do we mean by ‘representative’?
A major reason for wanting more diversity among the people who get involved is that we want them to reflect the population of the country as a whole or everyone with a particular condition. But most committees or funding panels will only ever include a small number of people; expecting every committee to fully reflect the entire population is unrealistic. In quantitative research (involving statistics), ‘being representative’ means results are only valid if the numbers are large enough to be considered representative of the population. Some researchers may therefore feel uncomfortable listening to the advice from a few individuals and see involvement as scientifically ‘unrepresentative’.
This goes back to the question of what patient and public involvement is for. It is there to provide a different perspective, a different kind of expertise, and to help researchers see through the patient’s eyes. It is not evidence of what all patients think. Undoubtedly there will be times when patients and members of the public offer conflicting views or priorities. But this is no different to any other disagreement between research team members, and it will be the lead researcher’s job to take a view on the way forward after listening to everyone.
Rosie enjoys working with others, but it can be challenging. She feels for the researchers when other users have a confrontational agenda.
Rosie enjoys working with others, but it can be challenging. She feels for the researchers when other users have a confrontational agenda.
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So it's not so much that I've been upset by the things that I've done, it's more like the, you know, in trying to have a discussion about something with a bunch of other mental health service users, you know, we've practically had world war three declared or something, do you know what I mean?
You know I think it's part of the territory and actually that's probably the most difficult thing to manage, you know, that people, some people are, you know, I mean not only have they got, you know, views that you don't agree with that other users don't agree with but they've got their own agenda, they're here to get, you know, to make their point about X whether X has got anything to do with why anybody else is in the room or not. You know and you and other people have got to try and deal with that, you know, so I think that's the, that's the more current emotional difficulties and I think those are some of the reasons that public involvement is challenging because some people, some, you know, as with any group of people some people are easier to work with, are more co-operative, are more able to join and, you know, say things but be part of something and some other people are much confrontative or oppositional or critical, you know, and managing that, you know, can…I mean I've been in mental health meetings where people have, you know, they've been poor researchers doing something and some service user has said, you know, "You're like the bloody Nazis." I mean that's really difficult to be, now I know, you know, you can, you can intellectually, you know that that person's had a bad experience, they've felt, you know, controlled by mental health; you know you can understand it but in that moment, I mean a) that's horrible for those professionals to just get all that anger, you know, and far worse than that I have to say, I've heard, you know but that's a real difficult, but even if you do understand it you've still got to manage the situation and there are lots of other people who are all going, "Oh my god," you know. That's why it's hard.
People should seek out others’ views and be as representative as they can but without losing ‘their own specific patientness’.
People should seek out others’ views and be as representative as they can but without losing ‘their own specific patientness’.
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It’s dangerous to assume you have a representative view by involving one person. It’s good practice to involve at least two.
It’s dangerous to assume you have a representative view by involving one person. It’s good practice to involve at least two.
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I get slightly worried, and again I see this when I'm reading research proposals, where researchers have assumed that because they've got one patient involved they have therefore got a representative view. I think that's always dangerous. I mean, I think it gives a researcher a misguided sense of the degree of patient involvement, and I think it puts the patient themselves in a very vulnerable position.
INVOLVE guidance I think suggests that there should be at least two patients involved in any particular set in an organisation, research project, and whatever. And I think that's absolutely right and, in a sense, the more the merrier. You know, if you've got five patients in a room, you'll probably get ten different opinions in the course of a meeting, which is fine. I mean that's good, it's important to explore the parameters of any particular set of decisions and decision-making. It's then down to the people who are actually making the decisions, to make a decision, but, they need to be hearing, I think, as wide and diverse a set of users possible. So, we, we shouldn't be seen as representative, we simply represent a commitment to openness and accountability, and a conduit, perhaps, to a range of views, which the professionals, because of their education training, sense of purpose, direction, would not necessarily come up with themselves.
No-one expects researchers to represent other researchers. Individuals can’t be representative but they can work hard to find out what a wider group of people thinks.
No-one expects researchers to represent other researchers. Individuals can’t be representative but they can work hard to find out what a wider group of people thinks.
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So I actually come with a whole lot of almost representativeness. So it's just helping people. So on its base level, it's about helping people say, "You can't be representative. You've not been voted in by, you're not an MP, you don't have a constituency". But actually if you're going sit at the table, along with others, it is important that you are not representative, you are a representative of a patient. You are a symbol of that patient. You're like the word 'representative' used as an artist. It is a representation of a jar. It is not a jar, it's representation of a jar. So I sit there, not as a representative with constituency, but what I'll often say to people is, "It is important you have, not a constituency, but how do you ground yourself? How do you, when you sit at the table, go out and talk? How do you go back and talk to self-help groups about what you're doing? Do you report back?" Because it's got to be a two way. It's not me sitting at the table, "Oh good I'm here." It's me sitting at the table going, "Actually I'm here but what job have I got to do to talk to others?"
There are times when you have to present a range of different perspectives, some of which you might disagree with.
There are times when you have to present a range of different perspectives, some of which you might disagree with.
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One of the things, one of the sort of problem areas that I’ve always had, is when somebody asks me personally to write a letter from a group and represent the views of that group. And that becomes more and more impossible to do. Because even if you think that, that a certain viewpoint is an obvious one. I always meet the person in the audience who proves to me that that viewpoint isn’t obvious, and there are good reasons why it’s not obvious. And I love that. I love that sort of level of debate, that debate reaches on that.
So I’ve shied away from representing groups with one letter. And the world knows that that’s how it works. Go and sit in the middle of the House of Commons during debating and you can see that and the patient and public involvement world is just like that. It’s just like the House of Commons. So it’s a case of at times listening to all of the views and deciding on the middle ground, the ground that works, not an easy thing to do. And, I guess one of the things that I’ve had to come to, to come to terms with is that my views have had to be subjugated sometimes by the views of the group that I’m working on, and chairing local and national groups that doesn’t happen. And I find myself arguing a case or a point that I personally might find difficult to believe in. But you’ve got to do that, and I think it’s important that you do that. So probably I hope that my two ears have worked better than my one mouth, but I’m not sure [laughs].
Carolyn can’t give ‘the patient view’, but describes how she can help researchers.
Carolyn can’t give ‘the patient view’, but describes how she can help researchers.
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Margaret feels what she brings is a unique personal insight into the experience of cancer.
Margaret feels what she brings is a unique personal insight into the experience of cancer.
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OK and so what is it that you bring?
I bring my own unique experience of what it has been like to sit in a room and say, be told you've cancer. Two: a unique experience of what it meant to me to have treatment, the unique experience of surviving and living of having had cancer, and so that is a unique experience to me and where it's appropriate then I can share what it feels like to be there and what the impact of different treatments and the way even people explain treatments, all of that, what that meant to me and I can't say that it means that to all patients, can't speak for them all, but I can speak for how it affected me and the impact on me, and on my life and on my family.
You bring who you are because before I was ever a patient it's a person, and so the life skills that you bring from all the experiences which you've had through life, whatever they were, the good ones and the bad ones, through your working life, through your family relationships, through all of that impacts on who I am as a person and that's what happens when I'm round that table as a partner with researchers, just who share what is experience on a personal basis.
Part of Catherine’s early training for involvement was about learning to take a wider view beyond your own experience.
Part of Catherine’s early training for involvement was about learning to take a wider view beyond your own experience.
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The first half of the day was explained to us what would be required of us.
And basically what is required is to be you, because they want feedback and what it's like to be a parent and, if you had been asked to take part in research when your parent had been, your child had been ill, you put yourself into that position when you think about what was going on. So they talked about various aspects of research, for example, taking blood. When you take blood from a child it could be painful, when you take blood from a baby, a baby has a limited amount of blood, so taking blood from babies they have to take much smaller amounts. So they talked to us about the ethics of procedures that were required so that you were able to think outside the box and not just about your own child's illness and then you're not too focused. So instead of me only thinking about what it was like being the mum of a child who was sick, age seven, in hospital for three weeks, I could perhaps extrapolate outwards and think about what it would have been like to be the mum of a child in the intensive care unit with a neonate, or a child who'd had an accident and then ended up in hospital for example.
So that, the training tried to broaden our ideas of what was required.
It is about not involving too much passion in the process.
Because it isn't about only delivering your case to the table otherwise it sounds like you're the one person beating the drum for just your one condition or the one thing that you're worried about.
Where what you're actually required to do is to be able to sit with a group of up to maybe eight or ten people who are experts in their field and to contribute rationally, and I believe if you want to influence them it's best to be able to be rational and objective when commenting.
Researchers may be worried that someone will bang on about a single issue – but Carolyn thinks this is a stereotype and isn’t necessarily accurate.
Researchers may be worried that someone will bang on about a single issue – but Carolyn thinks this is a stereotype and isn’t necessarily accurate.
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And I think sometimes, you know, I was talking about relationships with researchers and relationships with fellow patients involved in these kinds of things is it's important for them as well of course, you know actually, you're OK and overcome their fears or their stereotypes which are often to do with people having hobby horses, having a single issue, being stuck in their own, you know, their own history, some problem that they had, or if they're a carer that and bereaved that there's someone, you know, and there's some difficulty that they haven't resolved. There are lots of, if you like, stereotypes that people, I want to say had because I do think there are fewer of those around now as people have more experience and actually see well most of us are actually, just kind of human and we're not always wanting to bang a drum or have just, you know, one issue that we're talking about.
It doesn’t matter if people are passionate about one particular cause as long as they become part of a wider discussion too.
It doesn’t matter if people are passionate about one particular cause as long as they become part of a wider discussion too.
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What I urge people to say is, "Once the door is open, you can make those points. You can continue to hold those, but what's really important is that you are part of a wider dialogue." Some people have got involved at the other end of the spectrum because they've had a very, very poor experience. They've either had a loved one who has died or the treatment they received – and sometimes with the best will in the world, sometimes those are horrendous. We need those voices in there. But again it's, how do you have that as your passion and your drive, but how do you leave some of the luggage of that at the door? Because what we're most interested in is working in partnership and getting all those voices together. And once we're there, course we can take those agendas. What's important is when we arrive in the door is to find which is the best other door or window or place to make those points. And when we do that we become a force for real good, we become a movement of change and we become partners.
Kath found it upsetting when things were too close to their own experience. It’s possible to imagine yourself in others’ shoes and still bring a useful lay perspective.
Kath found it upsetting when things were too close to their own experience. It’s possible to imagine yourself in others’ shoes and still bring a useful lay perspective.
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But I found that even looking at the paperwork when I did the steering group, and I found that because that was about very close to my son’s experience, and I just found that too distressing even doing that, so I stepped away from it completely for about three years until I felt a bit stronger and a bit more, had a bit more perspective on it and then I did the reviewing. But yes, there were things in there that still could push the buttons. You know, things around bereavement of parents particularly still, and things around palliative care, still, still could quite upset me. But as I say that’s something that I had to, I had to decide that I was willing to, willing to do that.
I suppose researchers tend to assume that they need people who’ve got direct experience of that thing, which..?
I think it depends on the roles. If what you’re actually wanting people to do is, is to talk about something that is directly relevant to that condition, then having that condition obviously does help. If you’re wanting somebody to say about how participants with a particular condition might cope in your study, then you might need people with that condition to do that. But I think in other roles, people who have a bit of imagination so they can put themselves in other people’s shoes, and experience in other fields can be very useful in looking at it in different ways. Yeah.
Can that overcome some of the hobby horse problems do you think?
I mean I think that’s, yeah, it can do. But you sometimes, I know of, I know of some professional participants who do have an agenda that they take wherever they can get heard. That can be a problem. But… mostly, if people have a very clear idea of what would be really useful for them to do, they will cooperate with that and do it. I think the danger of the hobby horse riding is most apparent where there is not a clear guide to what people, what is wanted from people. And, and what they can usefully contribute, and then they tend to fall back on what they always say.
People with long-term conditions have something different to contribute than those who have recovered.
People with long-term conditions have something different to contribute than those who have recovered.
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Now that's a really good question. Yeah because actually that's the difference between a chronic illness which is a lifelong for most of these children. The ones that you remain involved with most of us our children will have this into adulthood. So that's completely different because the issues are always there and as the child grows up there are new issues. So our next thing will be transition to secondary school, and then to adult services, which will be a different stage altogether. So for somebody, for example, who had a condition or had an event and then they are no longer – they're discharged from the services. I think their experience is valuable, but I think it gets less valuable as time goes on sadly. But yet a lot of these people are really great, but I feel that the position should rotate. And I think even I should rotate, even I – that sounds very arrogant – but I think even I think I shouldn't stay on the committee, I think new people should keep moving it forward and what's really great is that we have recruited new so everybody on the committee is new just through circumstances – I'm actually the only original consumer left on it.
Rosie still has bipolar disorder but hasn’t used services for 8 years. She feels she’s in a better place to advise on some aspects of suicide research than someone who is at active risk.
Rosie still has bipolar disorder but hasn’t used services for 8 years. She feels she’s in a better place to advise on some aspects of suicide research than someone who is at active risk.
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So for example one of the things, because now I'm, you know, obviously in a way quite a professionalised public involvement person. I still do act as a mental health service user but I haven't used services for eight years. I mean I still think I've got, I've got bipolar disorder, I don't think anybody would say I haven't got it, certainly no psychiatrist would say that and I think I still have vulnerabilities but I'm fortunate in that I've been well for a long time and I no longer take any medication.
So in some respects if you're doing a study about current mental health services, people's experiences of them, I'm clearly not an appropriate service user to ask. But in other situations, so for example in the suicide programme; I've never actually tried to kill myself but I've wanted to kill myself and I've had quite a lot of the, you know, I've been clinically depressed, I've been detained and actually because some of the components of the suicide programme actually look at suicide methods and how fatal different methods are, actually I, you know, we think – this is me and the people who I do it with – you know it would be very inappropriate to involve people who are an active risk of suicide, of harming themselves or killing themselves. You could not be, you know, it wouldn't be right to involve people like that in that, those components of the programme so actually the fact that I'm a bit sort of back from my experiences quite helpful.
Maggie’s group comment on all types of cancer. They feel it’s important for someone’s experience to be recent but not too recent – but after a while you get ‘too used to doing it’.
Maggie’s group comment on all types of cancer. They feel it’s important for someone’s experience to be recent but not too recent – but after a while you get ‘too used to doing it’.
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Peter never stops feeling like a patient but ‘it comes in bursts’. Staying in touch with current patients or getting involved in a particular study helps remind you of the reality of illness.
Peter never stops feeling like a patient but ‘it comes in bursts’. Staying in touch with current patients or getting involved in a particular study helps remind you of the reality of illness.
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And what about this issue about kind of being involved for a long time and how you can sort of retain your 'patientness', as it were, to bring to the table when you work with researchers?
Yeah that's quite a challenge because if you're fortunate enough to be a long term survivor of a nasty disease, then you naturally will forget, not forget, but you will become less acutely aware of your patient experience. So I think the way to keep that is to continue to remind yourself of what it felt like without making yourself anxious. But maybe to pick something that you're doing that actually will help to remind you. So maybe you pick a project or pick an organisation that's been very close to patients and that would serve as a useful reminder to you on an ongoing basis – what patients who are still ill or still have a battle or are still going through treatment or whatever, what they're having to face and it'll remind you of what you had to face at the time. So that would be no bad thing. Not always easy to pick and choose what you get involved in though.
Why's that?
Well just because that's the way things were. I mean I suppose you could seek something out. I suppose you could make it your business to seek something out that was very close to patients. And sometimes things present themselves to you and at a time when you either want to do it or don't want to do it and it maybe the right thing, it maybe the wrong thing.
Tom feels he still has lots to offer even though his lung cancer was 20 years ago. In some situations he may be able to offer more.
Tom feels he still has lots to offer even though his lung cancer was 20 years ago. In some situations he may be able to offer more.
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Last reviewed July 2017.
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