Patient and public involvement in research

Reasons for getting involved – personal benefits

There can be many reasons why people get involved in research. In this summary we look mainly at the personal benefits which people hoped for from involvement. Elsewhere we look at what might be called ‘altruistic’ reasons - wanting to help other people, improve research and make care better for future generations. In practice most people we talked to were motivated by a mixture of reasons which might change over time, but a few people such as Dave G said their original motivation was purely personal. These could include having something interesting to do, making sense of an illness experience or getting information about their health. For some people payment was also attractive.

Dave G got involved through his local hospital because he was bored and wanted something to do.

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Age at interview: 67

Sex: Male

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And why did you want to be a member at that time?

Because I was bored basically and I do believe I was shuffling along the road to the dusty death and I thought, 'Well I'd better keep my brain alive, I want to interact with people’, so that was basically what I did it for. I'd like to quote some high ethical motives but no it was really just interest for me. That's what it was about.

And has that motivation been fulfilled since you started?

Oh yes fully, yes I spend about four days a week down there at the hospital doing various bits and pieces: research work, committees and groups and things like that. So yes it's a big part of my life now and I thoroughly enjoy it, I really do.

Richard was curious about research and was interested to know more about his own condition. But he also wanted to give something back.

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Age at interview: 54

Sex: Male

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When I first started I had two motivations. One was sheer personal curiosity. I'd started to ask questions particularly about my own treatment and my own experiences that I'd had as a participant on a clinical trial and then later on several others. I've been having twelve/thirteen years of treatment now and I've had five clinical trials in that time as a participant. So there is my genuine curiosity about health research and about how it works as well as about treatments and which one is better and how we know that. But also too, there is this very personal element of putting something back. In my case my mum was a nurse, so it was drummed into me at an early age that health research generally is a good thing because you don't change treatments, you don't improve treatments, you don't improve people's prospects unless you do thorough, proper research. She also drummed into me things like the doctor is always right and I have discovered that that's not necessarily a good thing to have drummed into you, so I didn't listen to her all the time. But also, I thought there's a moral obligation – I survived cancer and was very lucky to do so, but most of us who do survive cancer, we do so because the treatments we've got now are better than they were thirty years ago and that's happened because other people who are no longer with us have volunteered to do clinical trials. And when someone put one in front of me my reaction was immediately, "Yes of course I'm going to do it, just tell me what I need to do, how I need to do it." I was very lucky with supportive friends and my local hospital was running the trial, so I didn't have lots and lots of problems about travel. I was fit enough to undergo chemotherapy, so I didn't have any long hospital stays to worry about, children to look after – all the other things that you have to consider in these situations. So, it was easy for me to say yes. But, personally, my predisposition was always to say yes, it's always been there.

Do you think you would have got involved in PPI if you hadn't been ill?

I don't think I'd have got involved in PPI if I had stayed well throughout my life. It's something that's been there at the back of my mind, but it only triggered when I got ill. If it were not for my illness, I'd probably have followed my career through as a local government officer and a school governor and playing rugby as long as I could, and all the other things that I was doing. So it, I think, for me personally, PPI has come because I was ill and because I was on a clinical trial. But it's not just being ill; it's the fact that I took part in health research as a participant, which has opened the doors to PPI.

Mary wanted to use her previous background in marketing to set up as a paid mental health user consultant.

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Age at interview: 60

Sex: Female

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It astonishes me how long it is, how long ago it is because I'd been doing a lot of voluntary work on consultation – changing services, that sort of thing – and a friend of mine in [place name], she said, who was already doing this sort of thing as well, said, "You know you can get paid for this and with your marketing, market research background. You know about research and therefore you could be doing research and getting paid for it, rather than sitting around a table in a meeting with unpaid people – well you're the, one or two unpaid people, the rest paid – and your opinion is valued, and it's just as worthwhile as the state of them."

Well first of all I turned myself into a proper mental health user consultant by going to what was called Great Western Enterprise at that time and I got the Enterprise allowance and I was told how to do accounts and that sort of thing, even though, because I had a business studies qualification, I already, it was a good refresher for that. So, I was fully fledged as somebody who needed to be paid. And then of course this was quite novel that there was somebody who actually wanted to be paid for her views.

Often people found out about research as a result of illness. Getting involved could be a way of helping their own recovery or making sense of what had happened to them or to a family member, turning a bad experience into something positive. For Roger A, this has been ‘enormously satisfying and very healing’ and given him hope.

After his wife’s death from motor neurone disease, Roger A wanted to do something to make sense of a tragedy. Research seemed the obvious route.

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Age at interview: 65

Sex: Male

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In 2006 my wife died from motor neurone disease. Motor neurone disease affects the nerves leaving the brain to the various muscle groups of the body. It affects their ability to speak, to walk, to touch, to swallow, and eventually to breathe.

Most people have never heard of motor neurone disease, and most health and social care professionals may only ever encounter it once or twice in an entire medical career. It’s been known about for 140 years plus, yet still we do not know the cause. There is no cure. There is no effective treatment, and it is 100% fatal.

I was devastated. I wanted to do something. And it seems to me that the only way is through research.

It gives me healing. It makes sense, or helps to try and make sense of a tragedy. If I can help other families to not suffer the heartaches that I’ve been through, it’s got to be worth it.

After having cancer Dave X needed something to do and keep his mind active. He has enjoyed meeting new people and feeling he’s making a difference.

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Age at interview: 65

Sex: Male

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And coming back to your reasons for getting involved in PPI; you wanted to give back…

Yeah

After your experience of cancer; but is that your main motivation or your only motivation for taking part in PPI?

It's definitely the main motivation but after I'd gone through my, my particular dance with cancer I couldn't, you know, I mean I was stuck in this chair basically for quite a while. I'd go out and try and walk a bit but then it was in the December of 2009 and we had snow and there was no way I could go out and walk on the snow. And I needed to get involved in something, and it's, you know it wasn't planned to go into PPI as I have done. Because my knowledge of everything involved was remote, you know. I'd come from a totally different background and suddenly I'm aware of the NHS and the medical stuff and everything and I'm sat here. The alternative to getting involved in something would have been to sit here and watch Jeremy Kyle and oh no. I accidentally saw some of that once! You've got to keep doing something, you've got to keep your mind going otherwise you might as well just give up. And I'm probably busier now than I have been for years, mentally which is great. I'm using my brain and I enjoy it. Plus I get the satisfaction of knowing that I'm actually helping to make a difference for the future. It's not going to help me in my condition, but it might help people further down the line which is what it's all about for me.

And are there any other personal benefits that you get from it?

I've met an awful lot of new people, nice people, yourself included. My outlook on the NHS has changed; I'll defend it tooth and nail. I know there are things that need improving, but hopefully with what I'm doing with other things that I'm doing, you know, we're helping to make sure things do improve. But yeah, meeting, meeting new people's been great; made some good friends, people I perhaps wouldn't have met in the normal course of events.

Joining an ‘Involving People’ panel was part of Neil’s plan to recover physically and mentally after his stroke.

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Age at interview: 65

Sex: Male

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In my case, I moved from knowing a fair bit about physics and nothing at all about medical acronyms to now having all sorts of strange letters and combinations which I've memorised. So, yes you get new mental skills, socially it's helpful. Psychologically it's been a tremendous help for me because when you have any sort of stroke your confidence decreases enormously. You lose some functionality; physically, mentally and emotionally there's a change. So, you can either just give into that and sink or you can fight back. And one of my little battles has been to recover mentally and socially. My speech was affected from being a reasonably clear lecturer to missing certain vowel sounds and combining words, not separating them clearly. So I've had to learn to speak more slowly than I would normally do. That sort of thing was helped with IP because going along to the sort of panel meetings you're not expected to be a great expert on anything. You're just there as a lay person making a contribution and there's no sort of marks out of? ten. It's just your opinion's as good as anyone else's opinion and we'd love to hear from you. So that's a great confidence booster and I observed this in many IP [Involving People*] members; they've come on to the first meeting looking really very nervous and tongue tied. After three or four meetings they're contributing, they're at ease, you know, they're drinking their coffee easily. So it has enormous benefits.

*Involving People is a Welsh organisation supporting patient and public involvement in research

Sometimes people had been unable to work because of illness or caring responsibilities and involvement offered a way of gaining confidence and experience. It could also offer something interesting for people to do with their skills in retirement.

Research involvement helped Kath find ‘a new way of being’ and transformed their life after years of being a carer.

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Age at interview: 55

Pronouns: They/Them

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As I say, one of the things that I think really important, it’s helped me to create a new way of being in the world and it’s been part of that process. For me, it’s been a very valuable part because it has meant that I can take the experiences that I had previously with me I’ve met, some of the most amazing people doing really incredible things and learnt a huge amount about what’s going on in research that I had no idea about how that happened and how that worked before. So it’s just been massive. It has very much transformed my life really.

As a retired scientist Charles missed the intellectual contact. He was also interested to find out more about his wife’s condition, and help others

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Age at interview: 71

Sex: Male

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So those are the two strands. I think that the main driver is very much personal. For example, I probably wouldn't be so interested in childhood complaints or kidney complaints or anything like that. But I've got involved in the memory side of things and in orthopaedic research. And then through the orthopaedic bit, because although the PPI groups exist, I suppose really to make an input from the patients into the providers of care. It also works in the opposite direction because the medics in many areas actually need PPI input and they need patient input into all their projects. So I've been drawn into two or three of those; I'm the patient rep on two or three of the [hospital name] projects and I guess that [laughs], that is a summary of how I got from there to here.

Brilliant thank you very much. Can I just clarify one of the things that you said? You said that the things that you get yourself involved in are personal interests. Is that a personal interest just out of, you know, I'm interested in this type of research or do you think it was linked to your wife's experience?

Oh definitely linked to our own family experience. I sort of feel if this is going on in and around the family then I want to understand what's going on because the more I understand about it, the more comfortable I feel about it, although that's not always the case. But also the more I understand, the better I can contribute. There are other strands as well, you know, there's a strand of altruism that, you know if you can assist a research project then that's good because that's my background. And the other thing is that when I retired one of the things that I really, really missed was the intellectual contact with very good people and although I'm not at all a medic – I'm actually a physical scientist, even a sort of engineer rather, as much a scientist, and I have no medical background – but this brings me back into contact with very bright, very inquisitive, very caring, very conscientious people and I enjoy that contact.

Most people did not expect to get any direct health benefits for themselves or their families from their involvement, although they might hope to contribute to finding a cure or a new treatment in future. However, as Charles (above) notes, getting access to more information and knowledge of the latest research could be a motivation. For Francesco, both getting information about his health and earning some ‘pocket money’ were important.

Francesco got involved to find out more about heart disease. It was also a way to get some ‘pocket money’ as he has no pension.

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Age at interview: 57

Sex: Male

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I became interested in research because after I'd had my cardiac surgery I just wanted to know, understand about longevity and I looked, I think, I don't know if it's still up here in Oxford, but there was a publication called The Bandolier that was published by Oxford University Press. And I just wanted to see how long people lived after they had such procedures and, you know, three in ten pop their clogs after ten years and five out of ten after fifteen years. And I kind of thought to myself, 'Well my Dad died in the coronary care unit after his second heart attack and my mother died on her…’, but she was older so she wasn't that strong. So there, you know, there's a family disposition, pre-disposition unfortunately, it's like my grandmother in Italy. So I decided to give up work and have my retirement when I was fifty because I wasn't going to chance waiting till I was sixty-five because I might not have got there. It comes at a cost because I don't do benefits and I don't claim, sorry I don't do benefits and I haven't got a pension, so I had to find a way of doing what I wanted to do to get a couple of bob.

So joining various groups, boards, committees that made a payment was ways of just, you know, just putting pocket money into my pockets.

Most people we talked to had gained personal benefits from getting involved in research, some of which were expected and some unexpected. Carolyn suggested it was fine to benefit personally, adding, ‘I'd be suspicious of someone who said they didn't.’ But several people argued that personal reasons alone were not enough, and suggested someone with a very strong personal agenda could be unsuitable for research involvement and might disrupt meetings.

Richard feels it’s important people are involved because they want to help research, rather than using it as an opportunity campaign.

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Age at interview: 54

Sex: Male

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My message for researchers or clinicians who want to involve patients in PPI is a curious one because it is to find people who want to get involved because they want to help research – I think that's absolutely fundamental. There are patient representatives who want to get involved with things because they want to correct problems – and I'm a patient myself and I've been involved with those groups myself and I fully understand that. But wanting to sort out problems, wanting to campaign because something's gone wrong is a very, very good right and proper thing to do and more power to all our elbows, but, that's not what research is. Research is finding answers to questions, certainly clinical research is. I think you have to; you have to make sure that the patients understand that that's what you're trying to do. It is to find the answers to questions so, on the one hand you do need articulate committed patients – that's true, but they have to be prepared to find answers to questions.

At the same time, people recognised that feeling passionate about an issue could be valuable. As well as finding out more about her skin condition, vitiligo, Maxine was driven by the fact that ‘it's so trivialised this disease in the UK…This is a common disease compared to skin cancer and lots of other diseases and somebody needs to do some research.’

Learning about and improving the evidence for vitiligo treatments was a key motivation for Maxine. She got involved through the Eczema Society and NICE (National Institute for Health and Care Excellence).

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Age at interview: 72

Sex: Female

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Yeah I got involved in health research quite a long time ago now, and this was because somebody I knew who was the, the Chief Executive of the Eczema Society thought I might be a suitable person to be on the partners council of NICE which was being set up because she knew I had an interest in research; partly my background as an academic librarian and being able to search the literature and teach the students how to do the searches for their projects. Got me into the whole scientific/medical research, I mean if you like, though I'm not a scientist myself [laughs] by any means. And that was amazing because it felt as though I, as a patient, was doing something positive and being able to contribute to the research and NICE was an exciting new thing that was coming into the government and I thought it was a good thing, and because evidence for treatments was important. So, so that was my, my first real foray into the research agenda.

On my own account I was doing research into what was happening in vitiligo because, again through my job, I was able to search the literature and I could see that there was absolutely nothing, though at the time I didn't understand the difference between the types of studies and I would get very excited when I saw a study on vitiligo. And then I, you know, I learnt later through the people involved with the society on our medical council – they were a medical and scientific panel – they said, "Well you know, yes, but the study isn't terribly good and one swallow doesn't make a summer," was a saying I'll never forget actually [laughs]. And it's been a gradual process understanding the quality of research and what things are worth taking note of because there's so much that isn't really and so much quack stuff.