Patient and public involvement in research
Types of involvement
People can be involved in research in many ways depending on their time and interests. As Dave G put it, “I think really you make your own involvement.” At one level, this can be helping researchers with an individual study that has already been designed and funded, or getting involved earlier in designing a study, right through to national level, strategic work.
Maggie’s breast cancer group comments on leaflets for individual trials but also provides input to many local and national studies and organisations.
Maggie’s breast cancer group comments on leaflets for individual trials but also provides input to many local and national studies and organisations.
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We're stakeholders with NICE. Now there's a lot of work there and we can't do it all but we can select certain things that we can send comments in about. We're, we have members who sit on different clinical study groups. We have people who are involved with things like London Cancer UCL Partners. We have members on the UK Confederation of Cancer Biobanks. We have two members who set up the Brains Trust, which is a brilliant organisation charity for people with brain tumours. We have members in various organisations so, and they all bring to the, you know, the melting pot. And we learn from each other as well as from professionals. And if we haven't got the, you know, if one of us gets a request and we feel we're not skilled enough in that field, we can send it round the group and found somebody who is better able to meet the need or we can learn more. And I think that is an essential part of the job is actually recognising your limitations and not giving people unrealistic expectations of what they can achieve, but encouraging them to develop and to be brave. And most people now, most researchers, most organisations are very encouraging and very welcoming of lay input, so it is, I think it's a lot easier but it's also getting more and more of a responsibility to do it properly.
Carolyn describes seeing a trial through from the initial idea to sitting on the trial steering committee. She has helped recruit patients with a podcast.
Carolyn describes seeing a trial through from the initial idea to sitting on the trial steering committee. She has helped recruit patients with a podcast.
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Now I'm on the, it’s a funded study, it's recruiting. How do I know it's recruiting? Because I'm on the management, what would be the trial, the steering group I guess, trial management group. And what that involves, I guess, is getting updates from the team, going to the occasional meeting. If, you sometimes you might have a view about how something , how something might be improved and if you're involved at the very early stage, at the thinking, you can say, "Well actually that's not the language, that is, you know, that here, why don't you try this. Here's a way of presenting the whole concept that might make it seem more attractive to people." A couple of us also were, one of my colleagues was videoed and I did an audio, a podcast, as a patient giving my perspective to help in the set up in the recruitment, something that people could click on a website and hear other patient's perspective and why we thought this was an important area to research. So, it varies from something really tangible like, OK I did a little interview in a podcast to, you know, this sitting on a trial management committee – there are lots of those around in this kind of work.
Patient involvement in designing trial and leaflets about research can make it more likely people will take part. Richard has also helped set national research priorities for cancer.
Patient involvement in designing trial and leaflets about research can make it more likely people will take part. Richard has also helped set national research priorities for cancer.
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Have you been involved in designing research or setting research priorities?
I've been involved in designing research proposals to a limited degree, but I've also been involved in designing research priorities, sometimes on a national level. The two things of course are quite different, but they are, they're both eye opening. One of the things I did in terms of a national priority, was a few years ago now – National Cancer Research Institute held a conference to talk about its next five year strategy, so all the partners in the NCRI were there, all the people who fund Cancer Research, and lots of eminent professors and so on. And one of the things that myself and one or two other patient reps picked up on was that all the people there were interested in funding research into cancer. But actually, if you go to the public and ask about cancer research, one of their priorities is of course preventing it. Nobody wants to have cancer if it can possibly be avoided and, partly as a result of that conference, what's now happened is that the NCRI partners, the proportion of money they've put into prevention has doubled, which I think is absolutely wonderful, but that was something that we initially raised as an issue and was discussed on a national level. At the other end of the scale, there are the really limited ideas in the sense that it's limited to the benefit of a few patients with a particular problem. So I became involved in a study that was seeking funding, which was around the issue of people who've had lymphoma, which is a cancer that I've had, who have had certain drugs to treat them, which I have had, who are current or ex-smokers, like myself; they are statistically more prone to develop lung cancer later on in life. So, what we were looking at was whether or you could design a study to ‘screen’ some of these patients regularly for lung cancer in order to catch it at the earliest possible moment. As it happens that particular study didn't get funding, so I've also had experience of where no matter how much PPI you put in it still doesn't get the proposal funded and I've had to share in the disappointment of that. One day we'll get there.
Becoming involved as a co-researcher has been most common in mental health, where people are often involved in interviewing or surveying fellow users, but it is starting to happen in other subject areas and research methods too. Anthony explained how much he enjoyed helping to collect and analyse data for a study into how local hospital services should be reorganised. Maxine has used her skills as a librarian to analyse research evidence.
Maxine was encouraged to lead a ‘systematic review’* on the skin condition vitiligo, analysing all the research evidence published in different medical journals.
Maxine was encouraged to lead a ‘systematic review’* on the skin condition vitiligo, analysing all the research evidence published in different medical journals.
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But in one sense he wasn't wrong because I'm not a scientist, I'm not a doctor but I know a lot about vitiligo, it's what I do [laughs] and I think the other thing that I do, which came also from my experience as an academic librarian in the science, bio sciences, is what they used to call selective dissemination of information. So you'd know who all the academics were, or the lecturers and everything, and you'd know their interest and things would come in either journals or books and you'd think, 'Ah Dr [doctor’s name] might like that; Ah so and so might like that.'
* A systematic review is a compilation of all the high quality research on a particular topic. It may include a ‘meta-analysis’, which involves collating the data from all the studies and conducting statistical analyses on them.
Fenella developed her own research proposal with the Mental Health Research Network, which was shortlisted for funding. They’ll try again.
Fenella developed her own research proposal with the Mental Health Research Network, which was shortlisted for funding. They’ll try again.
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And I said to the one psychiatrist, “I’m thoroughly embarrassed. I’ve got you all here for half the day.” And the one psychiatrist said, “No, I think this is absolutely wonderful.” And we got actually shortlisted on one of them, but then we didn’t get past shortlisting. And I was really, really upset. And I remember the one researcher who had put the proposal together said, “Oh” he said, “Don’t worry.” He said, “Research for Patient Benefit will be here for years, so we can keep trying.” And I just thought [laughs], you know, it was just so lovely the way he said that and kind of, you know. And so it’s on the back burner. But we haven’t finished yet. So, you know, so for as long as, as the Institute for Health Research will be there, my proposal will be on the back burner. So that was lovely. And also I go on courses and stuff and I’m encouraged to do training and, you know, I help out on stuff. And I do have my own specialist area, which is around personality disorders and eating disorders. However - and psychological therapies - however I recently was approached by a professor who specialises in schizophrenia research, and it was quite nice to be asked to, to help out on that. And that wasn’t tokenistic because he was applying for money, but he genuinely wanted my advice knowing that I worked with other mental health service users. And it was really nice, you know, and it, it was a nice feeling. And I also went away and learnt more. And I also got given a great big textbook as well. So it was great.
Good presentation of the aims and results of research is crucial, but researchers don’t always do it well. Neil has spoken at conferences and re-written lay summaries.
Good presentation of the aims and results of research is crucial, but researchers don’t always do it well. Neil has spoken at conferences and re-written lay summaries.
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I mean, let alone what appears on paper. One of my little jobs was on the ethics committee in North Wales and you've got to, there's a lay summary section written specifically for the lay people. Some would be frankly disgraceful – I mean is this going to be recorded? Disgraceful. It's a very strong word isn't it? But they'd just taken a chunk of their protocol and popped it in, you see. And this cut and paste thing gets my hackles no end. Because if you are supposed to be communicating the purpose and the process of your research to non-specialists then it's a job which you should take seriously, and not just say, "Well hard luck mate it's going to get through anyway on merit, so I don't care." It is important to get the public, you know, on board increasingly so now that money's getting a bit tighter, yeah.
As co-researchers, people can get involved in designing studies, collecting and analysing data, and disseminating findings through talks and written papers.
As co-researchers, people can get involved in designing studies, collecting and analysing data, and disseminating findings through talks and written papers.
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Dave A compares his experiences of work with the Medical Research Council, the National Cancer Research Institute and a local involvement group.
Dave A compares his experiences of work with the Medical Research Council, the National Cancer Research Institute and a local involvement group.
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The National group for the Lung Cancer Clinical Studies was a different group, because I’d been invited as an individual and I don’t think that the majority of people sitting in that room had expected even a patient to be there. So I had to make a place for myself as a, as a lung cancer patient, but also try to convince some of these people that I had a place at that table. And I think I managed that. I was, I worked for that group for five years until my time was up, and I had to be recycled.
The, the local group is the one that I always found to be the one that kept you anchored in the real world, because at that group there were about 30 members of cancer patients from all different types of tumour types within that, within that room and the real spectrum of people form ex coal miners, steel workers, all the way through retired professionals, prostate cancer, breast cancer, ovarian cancer, myeloma.
But it was a chance to listen to discussions that, that real people, who had not got a clinical training listen to their experiences of cancer, and, it was always interesting then to take their views with me, when I worked on the national groups and worked for the Medical Research Council and if any problems or questions cropped up when I was on the national groups, I could go back to Sheffield, talk to my pals at the Consumer Research Panel, get their views and that helped to, I think to make my input to the national groups more robust and more meaningful. So I wasn’t just talking from the angle of David Ardron, carer for a lung cancer patient and a breast cancer patient in South Yorkshire. But talking as a representative of a wider group.
Peter has found involvement in national research strategy interesting but challenging.
Peter has found involvement in national research strategy interesting but challenging.
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Can you tell me a bit more about that?
Well they didn't meet very often for a start; they only met three times a year. And before we met we were issued with all the Board papers to read, which were always interesting, complex, some of them quite technical. And we were asked – what was good about it was we were asked what we wanted to talk about at the meeting. So you are given a chance to reflect on the papers and then come up with questions or comments, and by and large we did that – there were two of us sitting on this board – by and large we did that and we were always asked what we thought, that was good.
But we always felt that a lot of stuff happened in between the meetings that we didn't really get a chance to see what that was so. And maybe that was quite a natural thing. Maybe that was just, that was everybody else's day job, so they just got on with it after that and actioned the points and developed the initiative and progressed the matter, whatever it was. And we didn't really get another update until we went back four months later and it looked as though an awful lot had changed and we hadn't necessarily seen it change. And that was probably a little bit frustrating because you, sometimes you felt as though you wanted to carry on the meeting outside the meeting. You wanted to actually to revisit the subject and go into more detail or contribute more, and you weren't really, it wasn't easy to find the way to do that often. So while it was really interesting and it was a great privilege to be involved at that level, it was quite hard to make a really telling contribution I felt.
Anthony is a member of a ‘Research for Patient Benefit’ panel which decides which research proposals will be funded.
Anthony is a member of a ‘Research for Patient Benefit’ panel which decides which research proposals will be funded.
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We obviously don't do those which we ourselves have taken part in because we have to be detached and make judgements based on our views of those documents. So you, you then see what the researchers are trying to convince the committee of the value of what they're proposing and so you will have , again, research which is, is by definition not only new but is sometimes doing something which is breaking ground which, for a lay person, you're surprised for two reasons: 1) that somebody has made, that there is a possible connection between doing this and the result, and also sometimes saying, “Well it's surprising that that hasn't been done before,” but you know why it hasn't been done before because the originality is that somebody has just thought that, well there is a connection there; and it is an, an impressive committee to be on in that you realise the breadth as well as the specialist understanding of these clinicians and the way in which they can be detached about the work of their peers where they're looking at people; [heavy rain in background] and they know by name and know the quality of the work and analysing what they're doing and saying that this , this has merit or doesn't have merit.
Janice originally joined a research ethics committee because she wanted to improve their understanding of qualitative interview research. She ended up becoming the Chair.
Janice originally joined a research ethics committee because she wanted to improve their understanding of qualitative interview research. She ended up becoming the Chair.
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And I thought it was a fascinating piece of research, and you had to do it qualitatively, you couldn't possibly do it any other way. So she prepared her research application, goes off to the ethics committee and comes back in floods in tears because the ethics committee was very dominated by sort of clinicians and they didn't actually think that qualitative research was worth anything. You know if it wasn't quantitative, if it wasn't an RCT [randomised controlled trial], forget it. And I was so cross about this and I thought, 'Who are these ethics committee? Who do they think they are?' And at the time I was a member of my local community health council and I went to a meeting the next week and the ethics committee were asking for lay members. So I thought, 'Right, I'm going to get in there and teach them about qualitative research and why it matters.' And that's how it started, yes.
Brilliant. And so what did that involve you doing at the time?
Well, there was monthly meetings and before the meeting, you would get all the research applications that were going to be looked at that meeting. You would read them through, you would make comments on them and then go to the meeting – meeting would be two or three hours, and it was basically going through the process to see whether or not the research application met the ethical standards.
And what was the dynamic like with the other researchers, the other clinicians, the other members of that panel?
Yeah. Yeah, that was interesting, because you think you had to, you had to establish your credentials. I think when I started, and we are going back to sort of about the mid-nineties, I think it was much more you were the token lay person. There was perhaps two or three lay people, but you were there because you had to be, and I suppose once you'd established yourself, I think it was OK, but at first they just thought you were going to talk about the patient information sheets and that was really your job, to see if that was clear enough. But over time they realised that you had other things to add about the quality of the design, about whether the outcomes were actually relevant and that if you were looking at it from a patient perspective, you could see outcomes in a very different way from a clinician. So, I think you had to establish yourself, but having done that then the dynamic was fine, then you became a member of the committee and in fact I became Chair of that committee.
Brin produced a film publicising patient and public involvement for the Stroke Research Network.
Brin produced a film publicising patient and public involvement for the Stroke Research Network.
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In his national role Derek has supported a ‘mystery shopper’ campaign with people checking if hospitals are telling patients about research opportunities.
In his national role Derek has supported a ‘mystery shopper’ campaign with people checking if hospitals are telling patients about research opportunities.
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So the young people were not just searching for anything, they were searching now they were told, "Don't run in the hospital corridors." So it wasn't young people chasing and knocking people down. But I thought what a, you know, just inspirational way of getting young people to go and just find out. And of course they fed that to the Trust. So, how do we make more people more aware? Now, researchers who are listening and watching this will be going, "Oh no, we don't want to raise people's expectations." Yes, we do. Because even if we raise the country's expectations, I promise you, you wouldn't have a mad rush.
Rosie works with INVOLVE and feels it has been very important in promoting and supporting patient involvement in research.
Rosie works with INVOLVE and feels it has been very important in promoting and supporting patient involvement in research.
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And what's good about that is that, you know, so they bring issues and changes mainly these days, changes to the infrastructure, you know, NIHR – changes, there's going to be a new… the latest thing is this academic health sciences network that everywhere is going to have, you know, and how public involvement needs to be part of that and, you know, so there's, so they bring issues but the members can also raise issues and they have work streams . So I've been involved in a working group and they are developing; so they've got a website with lots of guidance on it which is accessible to everyone but this bit of the website is to create a map so that organisations or groups that are specifically interested involvement in research can be on the map and that you can find, you know, so that, so you could find it by your, by health topic or by area.
So it's really a way of trying to link people up better. You know so I've been in a project that's been involved in a project that's developing that bit, the website. So there's actual bits of work and…but you know we have these meetings and people can bring up issues. Effectively it's a way of I suppose people who are professionals or interested in this area, you know, as a quite strong part of their professional life to come together and they're very clear about there has to be a, you know, quite a large number of service users and carers and members of the public more generally, and it's, it's a lovely organisation, it's really friendly, it's really welcoming, it's very interesting and I really enjoy it every part of it, it's great.
See also:
‘Long term involvement and expertise’
‘What activities and tasks are involved?’
‘Skills and background needed for involvement’
For more information about how people learn about opportunities for involvement see also ‘Path to involvement – how did people find out about it?’ and ‘Raising awareness of opportunities for involvement and finding new volunteers’.
Last reviewed July 2017.
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