Patient and public involvement in research

Path to involvement – how did people find out about it?

We asked people how they first got involved in research. The most common route was through having a particular illness or condition. Some learnt about involvement opportunities directly from staff caring for them. Some were inspired by taking part in medical research as a participant and then wanting to get more involved. Some took up other types of involvement first (such as helping to run a support group or advising NHS trusts on service improvement) and then moved into research. Medical charities and support groups can also provide a direct route to research involvement.

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).

View full profile

Age at interview: 72

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

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.

Fenella got involved in research through her consultant psychiatrist’s research activities. She has felt welcomed and valued.

View full profile

Age at interview: 41

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

Something I was going to ask you a while back when you were talking about the Mental Health Research Network. Was it your experience with the trial that kind of inspired you to get involved in that?

Yes, it was actually. My, it was basically because my psychiatrist was very active in clinical research. He was always writing papers and doing presentations and stuff. And I wanted to be part of that buzz. I would go to a lecture or something and think, “Wow, this is really interesting” because a lot of research had gone into stuff and it fascinated me. So basically I found out a bit more about it, and I made some contact. And it was really nice getting in touch with my local office. I was welcomed in. I wasn’t treated as, “Oh, you know, you’re not important” or anything. Because in actual fact now, basically the way governance arrangements are around research is that you have to have obviously service user involvement. So, and they didn’t just accept me because they knew they had to involve me to get their funding - because I know that that happens, where clinicians say, “Here, sign here. Fill in that box. Then I can get my money” you know [laughs] , type thing. I’ve heard that happen, I’ve heard where people have been taken out for dinner and, you know. It rarely happens now. But we are still having a bit of tokenism, though, where actually the meaningful involvement is still not quite there. However, I was fully, fully involved and, you know, and I’ve got my place within the department.

Marney found out research involvement was an option through volunteering at her local trust.

View full profile

Age at interview: 53

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

Well after a period of ill health I started doing some volunteering at my local Trust and that lead to being involved in other activities and ultimately in an invitation to a national conference for professionals, and it was while I was there that I saw a presentation by the stroke research network about their work and listening to that I thought, 'Yes I really want to be involved with that,' because it's tied up in a sort of general educational area which, as a teacher, I feel strongly about education and find new knowledge interesting.

And what was it about the, that situation that inspired you to get involved?

Well I could immediately sort of relate to it as being an area of interest but I suppose it was the penny dropping that as a member of the public that you could just step forward and say, "Well I'd like to do that."

Helena took part in several research projects about her condition, and kept feeling the study design didn’t reflect patient concerns. This led to her own research and research involvement.

Text only

Read below

Helena took part in several research projects about her condition, and kept feeling the study design didn’t reflect patient concerns. This led to her own research and research involvement.

View full profile

Age at interview: 43

Sex: Female

See full profile

HIDE TEXT

PRINT TRANSCRIPT

I've had a long term condition for a couple of decades more and only really, really relatively recently did I get involved in actually doing research on the condition myself, although I had been involved in other people's research projects a lot because I live in a city where there's a lot of research goes on and there's teaching hospital. So it's impossible to go in and get the care you need without somebody coming up and saying, "Would you like to sign this consent form; we'd like to do some research on you?" And the, and I noticed as I was going through this and helping with the research that a lot of the research questions were the kind of thing where I wanted to say, "Do you know what I wouldn’t start from here; you're asking about the wrong thing; I don’t see why you're asking this; why are you wasting your time researching this topic; why are you making these assumptions?" And that’s really what drove me to then start look into researching the condition myself because I knew that I wouldn’t make those. I'd be able to bring something to it that clearly was not happening with researchers who were healthy, who were looking into my condition.

Not everyone has been a patient or service user themselves. Some are simply members of the public and another common route to research involvement is having a family member who has been ill. Again, some people got involved in research first, while others came through other types of involvement.

Both Dave A’s parents had cancer. A local friend told him about a research conference run by patients and he went along.

View full profile

Age at interview: 60

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I got involved as a result of my Mum and Dad’s cancer illnesses really. Mum had breast cancer, 1994, radical mastectomy. Still alive and doing very well, thank you. And my father, about five or six years after that was diagnosed with lung cancer unexpectedly, very unexpectedly, because he was a non-smoker.

And, as a family we nursed my father through cared for him through his illness, which lasted longer than we expected, I think, really. He lived for about three years after that. And, just, just after he died a friend of mine lives two doors away, a breast cancer patient, told me about a conference at Sheffield University which was being hosted by a group of patients, who had been involved in cancer research. And I was aware of patients and carers getting involved in service delivery issues, but I’d never heard of patients and carers being involved in research.

So intrigued, I went along to the to the meeting and listened to cancer patients and carers talking about how they had helped with the management of cancer research projects and studies, and so interested, given my science background, science teacher for 22 years. So interested with that, that I actually joined this group of patients, a consumer research panel working through an academic department at the University.

Kath first got involved through the hospice where their son died. Initially face-to-face involvement was hard. Reviewing grant applications was better because it was less emotional.

View full profile

Age at interview: 55

Pronouns: They/Them

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

Well my background is as a carer of a child with a chronic illness. And the very first involvement in research I had was through the hospice where he died who did some work on bereavement. And following that, one of those researchers asked me to be on the steering committee for another research project they did. That was really only a very minor involvement, just reviewing a few documents and not really very deeply involved in the research, just commenting on drafts and things like that.

I had sort of expected to get more involved. After my son died I went back to university and thought I was going to get involved in health service. But frankly I was just a bit too sore to really feel I could contribute very well to that. It, it was all a bit, a bit too confronting and I thought working with other people who were going through traumas probably wasn’t a good idea at that time.

So I stepped back from that and there was a sort of gap in, in my involvement… when I went and worked in community research and community empowerment work. So just stepping away from health, but still about, you know, getting involved in things.

And then I was sent an email that a colleague of mine had got through a disablement charity that she was involved in which was asking for lay reviewers for research proposals for National Institute for Health Research and also for funding panel member for Research for Patient Benefit Programme, and she said, “This looks like exactly your cup of tea.” And I thought, yeah, that’s looks like something that’s really interesting. It’s looking at the area that I already wanted to work in, and it’s a bit more stepped back. It’s not as sort of personal and face-to-face as some of the other stuff that I was looking at doing. So I thought that sounds like a good way of, of contributing really, and using the knowledge that I’ve got from being a carer.

Learning about research involvement through “chance”, “luck”, “coincidence” or “accident” was a very common experience. But people told us once they had got involved they were often invited to do other things. As Ben (a healthy volunteer) said, “It was a chance encounter and it opened a door, and the floodgates were opened.” A few people had worked in healthcare, or had a partner or friend who did, and were more aware of health research. In some cases they might also be a patient or carer (such as Margaret, who had worked in radiotherapy and then got cancer, or Beryl, a former healthcare manager whose daughter had cancer and she herself was later diagnosed with it too). Rosie had been training as a psychotherapist before she developed mental health problems.

Ben met a research nurse at a children’s party and got invited to take part in research as a healthy volunteer. That was how his involvement started.

View full profile

Age at interview: 49

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

It was very simple. I went, my son was invited to a birthday party. I went to the birthday party and parents chattering. One of the mums, of the birthday boy, is a research nurse. I didn’t know she was a research nurse. I knew she was a nurse. And she said, “Have you got any spare time? Would I consider being involved in a particular project?” And I said in principle, yes, straight away and then she sent me some bumph, all the paperwork that goes with it, and we agreed a date and time to turn up the hospital. And it was just very simple, very straightforward. Right place, right time.

And while I was there they suggested that I might be interested in becoming a recruitment officer for, getting more, or just people involved in the trials, and that opened a whole range of different avenues. And they then starting about PPI which I thought was Payment Protection Insurance. You hear about it in the newspapers and telly and things all the time, but obviously it was the alternative solution answer.

And you know, basically, they sent me pre… pre a trial various documents, the Patient Analysis Information Synopsis or the Patient Information Form and one or two other bits to have a look through, pre, before they published it, to see if it made sense and if I could turn it into layman’s terms or if I, you know, what I thought of it, my comments. So that was my sort of direct involvement as a PPI lay person.

Rosie volunteered at a local support group to help her own recovery. It was chance that she got involved in research through the group.

View full profile

Age at interview: 55

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I was ill for a couple of years, several episodes of illness and diagnosed with bipolar disorder and as a consequence of that I stopped being able to train as a psychotherapist. I was not able to work so I was in, after this period of being severely unwell for about a year, four episodes of illness. I, you know, I was then at home on benefits including disability living allowance at the time, and as I began to get a bit better, you know, I sort of think, you know, began to think, 'OK what's going to happen next?' and I think at the time, you know, I felt very , well I felt very shocked. I mean, you know, being diagnosed with a serious mental illness is very shocking and even though I knew something about mental health stuff it was still pretty shocking and I didn't think I'd ever work again.

You know so it really changed, you know, I've lost my confidence and I thought, 'Oh my god I'm going to be ill forever and I'm never going to be able to do anything.' But eventually time went on I gradually thought, 'OK I need to do something,' and because I'd worked in the past in the voluntary sector, in a charity, I knew there'd be probably be voluntary stuff around and I pitched up at [name of charity] which was down the road, you know, local to where I live so I could walk down there because I wasn't allowed to drive because of being detained, you know so it has all these kind of massive implications really. And a couple of things I thought about getting involved in: the first – they had a Helpline and they train people to be on the phone to people on the Helpline. I considered doing that but decided that I didn't feel up to it and they had a research project which was a user focus monitoring project going on there at the time and I got involved in that instead; and that had already started, they were already interviewing people and it was focused on inpatient care and acute mental health wards. So they were interviewing people and so they'd already produced the topic guide etc. but I did a bit of data collection and then was involved in helping to think about it and write it up.

So that's where I started and it was completely chance, you know, that that was happening there.

Rosie approached the support group herself; others were approached and personally invited. Some also went through a more formal selection process, responding to an advert, perhaps sending in a CV and/or being interviewed.

Richard was invited personally to get involved because researchers read a diary he wrote about having cancer and being in a clinical trial

View full profile

Age at interview: 54

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I first became involved in PPI because I was asked, which sounds a glib answer, but. I'd written a diary, like many cancer patients do, and the diary was passed around my nurses, and it went back to clinicians, and it went back to researchers because, I was participating in a clinical trial and somehow it ended up with the Chief Executive of Cancerbackup – [woman’s name]. And after my treatment finished she got in touch and said, "Would you like to come and be a patient rep and help us review our publications and steer some of the research we're doing into patients information needs?" And from there I've just passed from one committee to another and usually when people ask I try to say yes. There have been many times when I wish I didn't, but I do.

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.

Catherine saw an advert for patient and public members of a research panel. There was a formal application and interview process.

View full profile

Age at interview: 51

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I saw an advert on the internet, no it wasn't, that's not true. I saw an advert in the newspaper, one of the papers and I had recently looked after my daughter in hospital for three weeks. She'd had an episode of septic arthritis in the leg, in her knee, and she needed to be in hospital for a long time. They weren't sure what antibiotics to use, they hit her with a barrage of products, the amount of products she was getting was making her ill in its own right and I could see that, but it was necessary. And then when I came out of hospital and things had calmed down, I saw the advert and they were looking for people from the allergy, immunity and infection group which was the thing I'd experienced myself and I thought, 'Perfect I could maybe help and be a parent and comment.'

And so what did you do next?

I applied for the job.

There were lots of applicants across various topics. As I say, I mentioned that I applied for an allergy, immunity and infection group with parent involvement. I possibly was looked at for two others because of my academic background and other health issues that I'd had myself that I could help with, but we settled on that. I was interviewed on the telephone and then after that was invited to meet with, having been given the position, was invited to meet with all the other parents at a location in Liverpool, the, all the other people that were involved. So we were all inducted into the process of what it's like to be a parent involved in research and what that might entail. Then we were also involved in an exercise to look at existing research that was going to happen in Europe and vote for research that we thought would be most relevant, so we were getting a chance to impact the direction of a group of research projects that were planned across Europe.

Chance contacts and personal approaches can work well, but there was a general concern that we need to publicise opportunities to a wider group of people and make recruitment more open and transparent. Otherwise, control over who gets involved or is excluded remains in the researchers’ hands. (See also ‘Raising awareness of opportunities for involvement and finding new volunteers’ and ‘Difficulties and barriers to involvement’).

Francesco wants more openness about what opportunities there are and how people are selected, rather than finding volunteers through personal contacts.

View full profile

Age at interview: 57

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I'm not a research partner, which I haven't been, although I'd love to be, you know. How could I improve on that practice if I've not had the opportunity? But not everybody gets that opportunity. So it's about putting everything into the pot and it'll be really good because then it would create more additional opportunity for people, some of it which might not be relevant to me but to someone else but like I say if each researcher or academic had their own little pool of people. Like at the university that I'm involved with I could have been asked for a particular project but the PI, the principal investigator, it was word of mouth with four individuals.

OK the protocol when it got funded didn't indicate that it said it would be interviewed, but I had a word with the person, I told them, "I don't know if I can be part of this reference group because I believe in openness and transparency and equal opportunity." And as a result of that he made a statement of intent that he hadn't thought about it and he should have really opened up the opportunity for all people. But it's like the convenience because these people – I'm the new kid on the block, you know – these other people have been around a lot longer than me for ten, twelve years. I was, you know, I've just been there two years and that. So things have been done a particular way because it was convenient but, you know, I believe in openness.

Nadeem has found it hard to get involved as a research participant. Now he’s interested in wider involvement and thinks his diversity training could be useful.

View full profile

Age at interview: 57

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

Yeah I mean over the kind of the last six/seven years you know I've tried, not necessarily proactively by harassing people and saying, "By the way why you haven't replied?" But when, at the Council you get through the staff newsletter little snippets about X is looking for volunteers or Y is looking for volunteers as well. On a few occasions I've applied or I've replied to the email address. I got replies twice – once actually, because I don't think the information was that clear, so once actually I went to [hospital name], the hospital at [city], and the woman started asking me questions and all of a sudden she says, "No, no, no you're not the right sort of category or the classification of whatever they were looking for." But other than that nothing ‘til I attended this event organised by [name] University I think sort of through their aging partnership or whatever it's called, it's so long ago. And I thought, well now that I've got more time on my hand yeah and I can actually contribute one way or the other, if required, and if wanted, so I'm quite keen to get involved in research.

One is for the betterment of the society in the future; the other one is because I have an equalities background from, since 1981/82. And, despite all the development which has taking place in the field of patients involvement and the field of communicating better with people from diverse communities, I think there are still barriers, yeah. And part of that is about how one can remove those barriers. And barriers are on both sides. One is about understanding and I'm one of them, yeah, and the other one is about how the health professionals respond to and deal with people from different backgrounds.

See also:
‘Reasons for getting involved – personal benefits’
‘Reasons for getting involved – helping others and medical science’

Last reviewed July 2017.