INVOLVE is a national NHS advisory group that supports public involvement in health and social care research. INVOLVE defines public involvement as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. By ‘public’ INVOLVE means patients and their relatives as well as members of the general public. They make a difference between:
Involvement – where people are actively involved in research projects and in research organisations.
Participation – where people take part in a research study.
Engagement – where information and knowledge about research is shared with the public.
We asked people what they think public involvement in research is for. Most strongly supported medical research as the best way to find cures; to improve care and treatment; to improve patients’ quality and length of life; and to prevent illness. But they felt research does not always address the things patients think most important. A common theme was helping medical researchers see things through the eyes of a patient, or a member of the public (which Derek called the “outside eye”). As Janice said, researchers’ “view of normality is different” and Carolyn said lay people bring a “different reality”.
Nadeem thinks he could be a ‘critical friend’, reminding researchers of the human side and sharing knowledge of different communities.
Nadeem thinks he could be a ‘critical friend’, reminding researchers of the human side and sharing knowledge of different communities.
Age at interview: 57
Sex: Male
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Three things that come to mind straight away, yeah. One is being the researcher's critical friend, yeah? Because, with the greatest respect, you know, once you get involved in something one starts looking at the research bit, but not the human bit, yeah. So you can have kind of sort of the critical friends so it's a bit like, "Well this is what I'm intending to do, what do you think?" Yeah. That's one, so but one is a critical. The other one is a little bit of body of knowledge that one has you know. You are expert in your field yeah in the sense that you've gone through the research, so you're a researcher, you know ins and outs of what's required, what's not required, but you may not know about the communities yeah, whether it's communities of interest, whether it's communities of nationalities whatever. So a little bit of that understanding. And I'm fortunate enough to be in a position that I've had nearly thirty years' experience in this part of the region and in particular [city name], on race diversity, asylum, migration, refugees – so I have a little bit of understanding. But not only that but I also have that connectivity, so if I can't I know somebody who can, yes it's that particular bit as well. And I think, third, which is as important as the other two, is that inner satisfaction, that personal, yeah at the moment I may be talking a load of rubbish, but I know that I am adding something to the work that you're doing yeah.
Catherine brings a carer’s view. She will never be on the same side as the professionals because of her experience of her husband’s terminal illness.
Catherine brings a carer’s view. She will never be on the same side as the professionals because of her experience of her husband’s terminal illness.
Age at interview: 51
Sex: Female
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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.
Understanding the patient view can help doctors make their research more meaningful and relevant.
Understanding the patient view can help doctors make their research more meaningful and relevant.
Age at interview: 18
Sex: Male
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But yeah, the patient view, certainly over kind of compared to what it was, say, ten years ago is vastly become more important, and rightly so, in my opinion.
Do you think that it was really there before clinicians and researchers were kind of guessing or imagining or…?
They weren’t guessing. They were probably trying to do things in their best interest, but I think it’s important to remember patients. Without patients you wouldn’t have kind of any studies or any kind of research, so I think it’s important to involve them. If not, just kind of as a form of respect.
What do you think most people think the role… what’s the point of PPI?
It’s to make research more efficient and more accurate and more reliable, and make, sometimes make the results more meaningful, and it kind of guides the way for researchers into what they should be researching into. Because obviously they’re doing research for patients, but if they don’t know what patients want and that’s probably not the best way forward.
At one level they suggested patient and public involvement is about making sure the right research is done and challenging research that may be driven by the interests of pharmaceutical (drug) companies or individual researchers. This might mean suggesting different research questions or priorities; helping medical researchers understand what outcomes matter most to patients; raising the profile of particular diseases or symptoms; challenging wasteful or unnecessary research.
Maxine describes what happened in a James Lind Alliance Priority Setting Partnership on skin research and how it has led to new research proposals.
Maxine describes what happened in a James Lind Alliance Priority Setting Partnership on skin research and how it has led to new research proposals.
Age at interview: 72
Sex: Female
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But it was really interesting because their idea that they developed and was that research questions should not just be left to researchers because in the end it was for the benefit of patients, all this research, it's not for the researchers really [laughs]. They get pleasure at doing it and answering questions, but the patient benefit is what research is about. So I think the idea is that patients and clinicians together should decide which questions are important to be researched and I think that's absolutely crucial. I mean I can't see how else it could be done and I have already taken part in a prioritisation setting partnership, being on the steering group, and also the workshop day which was an amazing day for vitiligo, which turned up with eleven I think or even twelve – we aimed for ten questions, top ten to be researched and as a result of that process which has been published in a journal so it's out there, researchers can see it, patients can see it, well you know, mostly researchers. There are two or three initiatives going on. One's already resulted in a pilot study using hand-held ultra violet light. And there's – ah I can't remember the word – application! There's an application for a full sized multi-centre trial in process. We don't know yet, though it looks hopeful if we'll get that. So that would be huge, there's been absolutely no research to speak of in vitiligo in the UK.
Lay reviewers of a stroke research proposal felt the question wasn’t worth asking. It’s important not to waste public money.
Lay reviewers of a stroke research proposal felt the question wasn’t worth asking. It’s important not to waste public money.
Age at interview: 53
Sex: Female
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I mean one of the things we do with the stroke research network, and which it also comes into the frame for that, is say, “Is this an important question? How valuable is this research question going to be for patients?” And rightly quite a lot has been made recently of a study that other academics were enthusiastic about and it didn't appear that it was going to be a problem for it to get funding. It was all worked up nicely and everybody was happy with it. It was then sent out for review to the lay reviewers and the response was overwhelmingly negative with somebody saying quite boldly, "But is this a question that's worth asking?" And actually everybody had a sort of eureka moment and in fact decided that, no if people felt it wasn't a question worth asking, actually they should pull the plug on it there and then, which is a very painful thing to do obviously for all the people who have poured their time and energy enthusiastically into it up until that point. But I think – and then it's now used to illustrate the fact of the value that lay input gives because NHS money or charity money, which of course has been given by other people in trust that it's used sensibly, is potentially getting wasted if it's not being used for the sort of purposes that patients feel really have value.
At another level, people said patient and public involvement is not just about doing the right research, but making sure research is done right. Medical research needs people to agree to take part; it needs research participants. Patient and public input can help by making sure researchers explain clearly what their study is about; communicate more sensitively with people; design studies so they are easier to take part in and more efficient; and tell people the results. In some cases patients may get involved in doing the research, helping to collect data or analyse the findings from a patient perspective. (See ‘
Types of involvement’).
Beryl explains how lay input can improve the information given to research participants so it is clear to them what the trial is about.
Beryl explains how lay input can improve the information given to research participants so it is clear to them what the trial is about.
Age at interview: 64
Sex: Female
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What we do is we meet, once every two months, sometimes we meet more frequently, because at the moment we’re holding an open evening where we invite all the researchers from [hospital name] to talk about their experience with patient and public involvement and we talked to them about how we feel the research papers that are sent to us…There’s a lot more research papers being sent to us, to our group, because I feel that there needs to be, and there is more patient and public involvement. And we have to just look at the research papers to ensure that they are not very wordy and technical and a lay person could understand them. And then we feed back and actually we’ve devised their own form now, because someone had to collate all our responses and it was getting a bit messy, because you just pulled out the bits that were relevant, whereas now it’s all on one form and they can just be sent straight to the researchers.
I think only because we look at the research papers and the only part that I’m really involved in is making sure that patients understand and it’s actually on the paper what their involvement will involve. And it’s in the words that they understand and they’re not scared of, you know, because sometimes you read these where you’re thinking, you know, it’s another language, and if you want people on your side, it has got to be not too wordy, and it has got to be in lay person’s understanding to actually get them involved. And I don’t think a lot of research papers that we’ve read have said that, and that’s why I questioned is there a paper that goes on the top when you send for your funding that has got to be in lay words?
And you know you talk about how you review research papers. What do you actually mean by research papers?
What they do is they send us the papers where they hopefully are going to get funding.
Right.
And they explain what the clinical trial is and we just have to look at it to see whether, people would understand what the actual trial is and what the outcome is and what they’re involvement would be and would it affect their treatment? Would their treatment stop? So we, we try and put our thoughts on an A4 sheet of how we think that they should, to be able to bring these patients in to their trial otherwise I don’t think most people would, it would just go over their head, they wouldn’t understand what they were saying.
Catherine was distressed by the logo the researchers wanted to use in their study. She was pleased she spoke up about it because they changed it.
Catherine was distressed by the logo the researchers wanted to use in their study. She was pleased she spoke up about it because they changed it.
Age at interview: 51
Sex: Female
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So because my daughter had a bone infection I'm the person that's been co-opted onto the largest bone joint study that will run in this country. There may be other lay members, I haven't been told about that yet but I've been involved right from the very inception of the bone and joint study. And was even able to impact the graphics that they use to invite people to join the bone and joint study. They wanted to use this skeleton, the shape of a skeleton of a baby and I felt that skeletons were quite scary and having been subjected to my own bereavement, in my past, and being worried that my child, excuse me [coughs], that my child might die when she had a bone infection, found that that was an emotional image. So the image was changed to a different one that was more fun and that was more appropriate for children as opposed to it being bones because it was about bones. So I think being involved at the very early stage of something is very exciting.
But what I did also say when I did do that was say, you know, "This is an emotional issue," it may be me being overly sensitive, but I was supported by the other parent carer who also felt that perhaps, yeah children's bones are sort of a… the skeleton of what looked like a baby, because you know, human skeletons are different shapes at different times, so it's obviously meant to be a baby skeleton, or a child skeleton, although it wasn't an anatomically correct, it was a cartoony drawing, it still had a problem for me. I did explain that due to my personal experiences it might be me being over sensitive. So that was one time when I was almost worried about speaking up because I felt that I, it wasn't necessarily a purely, you know, balanced perspective and that I was being influenced by my own personal experiences which may not have been relevant but it was important for me to say but I was nervous about saying it in case I appeared a bit silly.
Patient involvement can help make studies acceptable to patients and information about research easy to understand.
Patient involvement can help make studies acceptable to patients and information about research easy to understand.
Age at interview: 60
Sex: Male
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So having decided whether or not the question is worth answering. Whether or not the patients were involved early enough in the process, you then look at the research carefully. Is it answering the question for the right population of patients? Are they included in the next chosen criteria for the study correct? Are the correct patients being recruited for the study? Is, is the treatment sensible treatment? Is it the kind of the treatment that patients could live with? You know, the side effects of any treatment, are they bearable and sustainable? Does it involve too many visits to a hospital for instance? Excessive amounts of travel? Are the, are the patients who are invited to join the trial being asked the questions sensibly and in a kind of language that they can understand? Are the patient information leaflets legible and readable for all the population. And if its patients who would struggle to read that kind of literature are they given the kind of verbal help that they would need, to make a sensible decision about joining the study?
So it’s all about, it’s checking that the question is right, that the right people are being involved and that the patients who work on the study really are informed and can consent to the trial sensibly.
Richard says it’s easier for patients to say yes to a study if it’s been designed around their needs. Patient involvement also helps ensure the right questions are asked.
Richard says it’s easier for patients to say yes to a study if it’s been designed around their needs. Patient involvement also helps ensure the right questions are asked.
Age at interview: 54
Sex: Male
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The value that PPI adds to research is in that point about adding the patient perspective. So we can add, I think, tangible value often measured in financial terms or raw success criteria. Will you recruit the number of patients that you want to recruit in the time you've allowed for it and in the time you're funded to do it? If you run the idea past patients in the first place, you are far more likely to iron out those little things that may stop patients saying yes. The obvious things are: how many times do we actually go to hospital? How many blood tests are there? Who's paying the car parking fees? Little things like that that actually mean an awful lot when you're a patient, especially if this piece of research is a clinical trial. So you're dealing with sick people, whose families are having to make adjustments for the treatment anyway let alone the patient themselves. I think too there are, there are other forms of value that can be added. If your research answers a question and the answer is important, then having patients on-board can help you not just disseminate the results, but actually get those results put into practice perhaps more quickly, but perhaps just have the publicity angle raised.
Newspapers always love publishing stories about research, but as the bigger charities are well aware now, they have much more impact if you can stick a patient's story alongside it. Many of the patient representatives also have their own contacts with charities, who would be delighted to report pieces of research and indeed report research underway to assist recruitment. So that there are the practical things that patients can do, but, ultimately too, the patient perspective should help researchers keep focused on whether or not the question is actually going to be important to patients and whether or not their piece of research will actually benefit patients in the long run. Of course researchers need funding to keep them in jobs and university academic departments and so on need funding for research in order to, that research will improve their academic performance and how that's measured. But ultimately health research should benefit the health of the Nation, and sooner or later we are all held to account for that. And patients do have this knack of keeping people focused on what's the benefit for other patients.
People we talked to were often concerned that it wasn’t easy for patients and the public to know what research is going on. Several said part of being involved was about raising awareness of research, to help patients find out about NHS research in their area and encourage them to ask to be in trials. Richard, for example, summed up his PPI goals as explaining research to patients and encouraging them to take part. This role for lay people is sometimes called 'Patient Research Ambassador' by the National Institute for Health Research project Involvement4Access. (See ‘
Raising awareness of opportunities for involvement and finding new volunteers’).
Funders of health and social care research increasingly say they will only give research grants where it is clear there has been patient and public involvement. People we talked to agreed with this in principle but were unhappy when researchers treated patient involvement as a tick-box exercise just to get their funding, especially if it came too late in the process to make any difference. (See
Difficulties and barriers to involvement’).
Some researchers treat patient involvement as a tick box exercise, which Andrew thinks defeats its purpose.
Some researchers treat patient involvement as a tick box exercise, which Andrew thinks defeats its purpose.
Age at interview: 64
Sex: Male
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I am, however, conscious that in some other areas that I've looked at that yes, for some researchers, patient involvement is a tick box exercise. There's something on the form and, you know, you've got to find, you've got to tick the box because you won't get the money at all if you don't. And if you tick the box, you've got to have found something that'll substantiate that and that's the real worry because then my experience has been that researchers are rushing around finding, retrospectively, some engagement with patients, and that's not terribly helpful and it doesn't address the fundamental question, 'Why would we be doing this research in the first place?' You know, ‘In whose interest is it?’ That's where I think research has got to start.
It can be argued that involving people is a democratic right (because as tax-payers we all fund research), or that researchers have a moral duty to involve patients, even if it makes no real difference to the research that gets done. Kath said that the moral case was important but not enough: “This is a big investment that we are making, and so we ought to be contributing something. It’s not just about having quite a nice time.” However, Derek and Andrew thought the democratic argument was important.
Involving a wide range of people is fundamentally about democracy and power for Derek.
Involving a wide range of people is fundamentally about democracy and power for Derek.
Age at interview: 62
Sex: Male
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And Change Makers, which is about healthier lifestyles, and healthier lifestyles in [city name], is about particular communities and those are in white working class as well as black and Asian, and Afro Caribbean communities where they don't come forward. Because they don't come forward for their tests, they don't come forward for their treatments, they are presenting late, and their outcomes are bad, so it's how we make sure that's going to change. So I have my feet that I engage through social media with a number of other groups, and I've got friends and colleagues who particularly work in those communities, and I'm always fostering those groups that make sure that we're getting those voices. The difficulty often was, is we assume that, “oh well if we get him as a member of the table”, yes we must fight for that, that's where we're going and it's not, it's not tick a box. I heard once from, just a wonderful person who said, "This is not to, for equality and diversity, this is about democracy." If democracy is work, is to work, people from all communities should be able to see their own in those positions of power or in Councils or in committees because it is only when we see our own, and that has its roots right back to the Civil War, in England. Because it is not for the, it is that the voice should be heard, not that the voice should necessarily have power, and that was in the Putney Debates of whatever date that was. [Derek later clarified this was 1642.]
So, getting the voices of those who are seldom heard is not an equality and diversity issue other than it's the law. It is because we should, and it is about making sure, not that they are a voice on a committee, but that we have checked that their voices have been heard.
Research is funded using public money and it’s good for researchers to be reminded of this.
Research is funded using public money and it’s good for researchers to be reminded of this.
Age at interview: 69
Sex: Female
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Well I think there's a bit about being not a patient, but a member of the public. You're almost. It's public money in one way or another usually that's going into the research either directly because it's say NIHR or charitable money and sometimes I do feel I'm speaking more as a member of the public than somebody who happened to have cancer. And that's something about accountability which is very important is that you are spending public money here. Are you spending it wisely and what difference is it actually going to make in practice? Now it's much easier to see that with certain kinds of research than others, but I think it's a question that, you know, one always has to be able to ask and to think about. And sometimes you're just usefully reminding people that, where the money's come from without, you know, without preaching or finger-wagging. I mean that would, I think that's not the style most of us have but that would be disastrous if you did. You know people who kind of get on the high horse about things is maybe understandable at times if you get very frustrated, but it's just not productive. So something about ways of working that people are comfortable with I think that's important.
The INVOLVE website (see our
Resources Page) has lots of useful information and advice for both members of the public and researchers, as well as links to other useful sites.
(See also ‘
Types of involvement’ and ‘
What activities and tasks are involved?’).
Last reviewed July 2017.
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