Patient and public involvement in research
Skills and background for involvement
People who get involved in health research can come from all sorts of backgrounds and bring various skills and experience. Although they are often motivated by their own illness or caring for a family member, people with no particular illness experience can also be involved. Having first-hand experience of a particular condition can give researchers valuable insight into what it’s like to be a patient or a carer. But just bringing a general patient or carer perspective can also be valuable.
Catherine and Kath argued that it was possible to relate your own experience to that of people with other conditions, and sometimes it might be easier to get involved in a topic you did not feel so emotional about. Helena felt it was important for researchers to be clear why they wanted someone; she would not be able, for example to comment much on specific conditions other than her own, but she would bring general understanding of having a long term condition. Very recent or current experience can be important for some studies but several people made the point that it was important to feel strong enough (physically, mentally and emotionally) when you got involved.
Roger A is ‘just an ordinary chap’ - but he is also an expert in caring for someone with motor neurone disease.
Roger A is ‘just an ordinary chap’ - but he is also an expert in caring for someone with motor neurone disease.
I think that’s why my work with the local group of the national charity is important. It keeps me in touch with ordinary people, with carers, families, friends, with the people with the disease. I go out with the, with the group to coffee mornings, to hospices and places like that and meet people with the disease frequently. It also means that I have probably met more people with motor neurone disease then most social health care professionals will ever see. So that gives me an expertise.
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.
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.
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.
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.
Anthony feels general members of the public bring a valuable different view.
Anthony feels general members of the public bring a valuable different view.
But it can be things which they've had experience of in, in their lives that may be about trauma, inhibitions; it may be about experience of relatives, you know, "My auntie died of this or had that and she needed this, we didn't know whether we should do this, we couldn't understand what the doctor was saying or what the nurse was saying."
And I think that's, that's one of the main contributions that lay people can make, "What does that mean? What does that mean for me? What does that mean for my friends? What will it mean for the future? Will it make me better? Will it make my auntie better?" So it's the questions isn't it that anybody can bring – why, what, how, when, what if, will it, how soon will it – and sometimes clinical researchers may not, but usually they have, may not have thought of the issues with that simplicity so I'm, I suppose making a case for public and patient involvement to make research as simple as possible in how to understand it, what it's going to achieve and how you tell the public about it.
Anyone should be able to get involved, in different ways. Being able to listen and ask questions is the main thing.
Anyone should be able to get involved, in different ways. Being able to listen and ask questions is the main thing.
Whether I’ve got a special skill set I’m not sure, but the, because there are greater and greater numbers of lay people getting involved in the, in the research world, the team of skills that we, that we bring to the table is, is becoming more comprehensive and we’re able to contribute, you know, you can find the right person to contribute to a particular type of meeting. And, well, the selection of individuals for different types of involvement I think is important. So as a patient or a carer, my belief is that everybody’s got something to contribute, but how you get these different people, how you make their voices heard, is, is the way that there’s sort of pyramid involvement has developed.
Catherine’s microbiology degree helps her to understand the lingo used by researchers, but you don’t have to get involved in projects you don’t understand.
Catherine’s microbiology degree helps her to understand the lingo used by researchers, but you don’t have to get involved in projects you don’t understand.
I don't think it is for a lot of people and in fact at the end of the last meeting I attended in Southampton I was chatting over the tea break or whatever. I stay long enough to mingle and sometimes I will single out a speaker who I was interested in their talk and go and say hello, and I had a lady come up to me and she goes, "Ooh my goodness," she said , "I don't know how you cope." And I said, "Oh it's alright I've got a microbiology degree," and she goes, "Oh thank goodness for that, I felt so sorry for you, the last four hours of all of that stuff, it would have been very boring otherwise."
So it does help, I've always had an interest in medicine, things medical. I've unfortunately had a lot of exposure to illness either myself or in my family which means that when they've got ill I've researched those diseases in great detail and I have no problem with the lingo.
But I'm sure that other people would struggle with it. Perhaps other groups though, and other types of work, it's not as technical. I am in a group where they're looking at antibiotics and you're always measuring the efficacy of those and I actually did a final year study at university, that might have been one of the reasons that got me extra points, was that I need a microbiology degree, but in my final year we all had to do a project as anyone does when they do a degree and I chose to do a medical microbiology degree at the London hospital and I looked at the technical term is a serum and minor gylcose side levels for an antibiotic to see whether it reached ototoxic and nephrotoxic levels in people. So add the background to that, basically I was looking at whether the blood levels of the antibiotics were getting so high that they were damaging somebody's hearing or kidneys and, so I'm very lucky that having got that background, made it very appropriate because this group does spend a lot of time looking at, you know measures which have absolute values so you're looking at things like that.
Whereas perhaps if you're looking at cystic fibrosis they may be talking far more about treatments of that which is a, might be a physical thing – cystic fibrosis is treated by physiotherapy for example, so there may be far less technical language. But when parents or lay people become representatives on a condition, the thing is the medical profession know that we're experts in our own conditions. So you may not have the absolute scientific jargon but you might have read around your subject as much as they have or more than they have in an attempt to find a solution. And you will have stepped outside the traditional box that they're operating in so you can bring new insights. So not having the exact lingo I don't think is a problem because you're normally only invited to join these things if you've got personal experience.
What’s needed is someone who can be a ‘true critical friend’.
What’s needed is someone who can be a ‘true critical friend’.
Somebody that is very self-critical, that is honest. They have to have a certain level of passion but they've got to keep it under rein. They've got to show respect as well as have respect from the groups that they're working with, if be they be clinicians or academics or politicians and you know they have to engage in a true way and I think ultimately be a critical friend. I think the role of a true critical friend is really powerful because if you have that respect in place, you can criticise but you can do it in such a way if you're informed that then people take notice of you. You know I think a good PPI rep ensures that what they say is tempered, informed and goes down in the minutes.
Sometimes researchers who have a particular condition act as lay advisers. They have a legitimate perspective, but Rosie wonders if ‘insiders’ can be critical enough.
Sometimes researchers who have a particular condition act as lay advisers. They have a legitimate perspective, but Rosie wonders if ‘insiders’ can be critical enough.
People in the group Margaret works with are from various backgrounds and age groups who contribute in different ways.
People in the group Margaret works with are from various backgrounds and age groups who contribute in different ways.
Whatever anyone's background is, it's important because they just bring who they are, and people are involved at all sorts of different levels. Not everybody wants to be involved on a trial management group, not everybody wants to sit on an executive, but all of them want to be involved at reviewing what information the patient gets.
Kath has developed training for people who haven’t been to university like them. Researchers need to be more inventive about how to involve people.
Kath has developed training for people who haven’t been to university like them. Researchers need to be more inventive about how to involve people.
There is a danger that researchers choose people that they’re comfortable to work with because they quite like them. And I have met a lot of people who’ve been researchers in other fields or who have been statisticians in industry, or who have been used in public involvement roles and they’ve been very good at it, but I think public involvement needs to reach wider than that.
It is, that does mean, that you need to have training for people to do these jobs. As I say, I was lucky that my opportunity to get involved happened after I had learned how to read long documents and get information out of them and present it back. That’s something that I’d been into university and learned. A lot of people in my community haven’t had that sort of education and for them to do that sort of job you need to give them the training of how to do it. So that’s one way of getting more and different people involved.
You also need to do different sorts of involvement. Reviewing research proposals isn’t the only way of inputting into research, and so researchers need to be a little bit more, a little bit more inventive about how they involve people: having events where they talk to people in different ways, or get people to put their views in, in different forms. That seems really important to me as well.
I think from my perspective I’m most pleased about getting different people involved who have very good stories and very important stories to tell researchers, who may not have otherwise been involved in the ways that they are. So I have supported other people to learn how to do reviewing of research proposals, and introduced them to other ways of being involved that they’ve not come across. And I’ve been helping to design this training that takes actually some of these ideas out into communities, and gives other people the idea of how to get involved. So I think for me that’s my main, the thing that I’m most proud of I think really.
It’s important to be professional, read up on research and be committed to involvement.
It’s important to be professional, read up on research and be committed to involvement.
When you said, the first one you said was professional – what do you mean by you have to be professional?
You have to relate to people in a team as professionals and the certain rules you have. You don't go talking behind people's backs; there's certain confidentiality there. When you're in a meeting you obey the rules of the meeting. You don't pursue your own agenda and disrupt the meeting. It's pretty obvious really. You work as part of a team, that's what professionalism is about. I don't curse people behind their backs, I don't spread gossip about the team leader, I don't undermine the project for my own dubious reasons. I act in a professional way in which I'd expect people to act towards me.
Maxine recommends the NHS website ‘Behind the Headlines’ as an easy way for people to learn more about science.
Maxine recommends the NHS website ‘Behind the Headlines’ as an easy way for people to learn more about science.
Go back to the main source or find out where the information came from and try and read it yourself and get somebody to explain it if they can, a doctor or somebody knowledgeable.
Maggie went on a course in the US on cancer research and is now running a similar course in the UK. Learning from scientists has been amazing.
Maggie went on a course in the US on cancer research and is now running a similar course in the UK. Learning from scientists has been amazing.
So we set up our new group which is Independent Cancer Patient Voice, and the aim was to provide education, mentoring and support for people who had been treated for cancer and want to get more involved in the research, adding a patient perspective to that research. And we've been running workshops over one and two days. But we go to the academic centres around the UK, so that way we get a better geographic mix, but we also enable, it enables us to get a venue without charge, but we also get the teaching and it's, the scientists at these centres have been extremely enthusiastic and very supportive.
Derek had no scientific knowledge at all. Involvement needs ordinary people.
Derek had no scientific knowledge at all. Involvement needs ordinary people.
When I began, I began thinking that they wanted the patient voice at the table. They'd had some involvement in some research, but what I'd noticed they'd got when I looked or met some of the people, they were people who were , how can I say this? They were of their ilk. They wore similar hats or clothes. And by that I mean, it was a cancer patient, but they were a doctor, right? They were a cancer patient, but they, but they'd worked in research in the food industry. Now, there is nothing wrong with those voices, they are great because they understand the research, they understand, they're great. But there isn't a rawness to it and it made me realise.
In spite of Catherine’s skills and experience, she will never be on the same side as the professionals. She brings a carer’s view.
In spite of Catherine’s skills and experience, she will never be on the same side as the professionals. She brings a carer’s view.
I'm not an expert and not only that, because I have, been outside the system or a user of the system I see it as a user. I don't think that they can ever see it as a user, in fact, I'm going to tell you the story I read in the newspaper, where did I see it? There was a two page spread in my local paper and in it there were three specialists, prostate cancer specialists, who all developed prostate cancer. So the story was asking the prostate cancer specialists to discuss their treatment and what they chose to do as consultants in their field, to be patients with their own disease.
So one of them chose to have a chemotherapy and radiotherapy; one of them chose not to have the chemotherapy but to have the quality of life that he knew chemotherapy would withdraw; one of those people, one of the three people did die, one of them has survived and gone back to work, and the one that survived and went back to work put down that he could never have known what it was like to be on the other side of the fence and I think that's what a PPI person brings – is being the person who walks into the room who is terrified for their own or their child's health and, or concerned if not terrified if you're not in a critical condition, and who constantly comes up against the medical jargon, a system of how things work and having experienced a terminal cancer diagnosis for my husband, nothing can prepare you for the shock that you go into when you have a terminal diagnosis. And no matter how much training and no matter how many years you sat as a medical person, handing out that diagnosis and watching people in front of you, you don't know what it's like until you've been that person at home, trying to eat a dinner and throwing up at the thought of the person opposite you dying. You don't understand that until you've been it. So PPI representatives should never feel that they're on the same side and I don't think you do. So I don't feel I'm getting too close to them because I've been on my board and I've been allowed to stay on it for longer than three years.
I'm only allowed to stay a little bit longer because they do always turn all of these positions which they should. I'd hope to get another one, on a different board and pro-active again and help because I know that I respond so well and my work's encouraged. But PPIs are very essential because they just don't understand and that article I read in the newspaper about these three gentlemen who got their own illness and took the treatment; they all were shocked and the last one who was able to go back to work said that the biggest thing it gave him was empathy. He had never understood what it was like to be on the other side of the table.
Getting involved in actually doing research may be easier for people who have had some previous related experience. Maxine had experience as a librarian which helped her doing a ‘systematic review’* of all the research evidence on vitiligo in academic journals. Rosie had some previous experience in interviewing people but was given extra training. She felt that people with no previous background could be involved, if they got that extra training and support.
Involvement is about bridging the gap between researchers and patients. Some roles don’t require much training, but helping carry out research might.
Involvement is about bridging the gap between researchers and patients. Some roles don’t require much training, but helping carry out research might.
And of course the person coming in we can be very different so some people might be, have quite a lot of skills or, you know, have relevant knowledge and information and some people might not have any of that. So there's something about thinking about that gap and I think it depends, it also depends a lot on what the job is so when you're involved I think you can be doing hugely big range of different things and if, you know, so some of the ways that people are involved I don't think you do need much induction or training or, from the researchers because what they're asking you to do and how they ask you to do it comes more towards to you in your experience and it's about sharing that and engaging in that sort of conversation which most people don't need that much help to do. But if you're going to, if the health professionals are going to ask people to do more complex, you know, say come in to steering group meetings or research team meetings and participate in those, or to collect data or help with qualitative analysis, you can't see…usually do anything quantitative but those sorts of things, then you need different sorts of support and help to understand enough for that particular job.
As she gets familiar with research Helen worries she starts to lose her ability to ‘be the person on the bus who doesn’t know anything.’
As she gets familiar with research Helen worries she starts to lose her ability to ‘be the person on the bus who doesn’t know anything.’
Last reviewed July 2017.
Last updated March 2016.
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