A-Z

Patient and public involvement in research

What activities and tasks are involved?

A key message from people we spoke to is that involvement can be as much or as little as you want it to be (see also ‘Types of involvement’). They described a range of activities and tasks, most commonly attending meetings to give a patient, family or public perspective, and commenting on documents.
 
People who are asked to take part in health research are first given a ‘participant information sheet’ as part of the consent process, so they understand what the study is about and what will happen to them if they take part. All such leaflets are checked by a research ethics committee before a study is allowed to start. It is vital that these leaflets are clear and easily understandable, so being asked to comment on how they are worded is one of the most common ways for people to get involved. However, Helena argued that this could just as easily be done by a communications professional. Many research funders also ask researchers to include a ‘lay summary’ (an ‘easy to understand’ explanation of their research) in their research proposal, and helping write the lay summary is another common form 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.
 

Alan’s cancer research panel checks whether patients will understand the leaflets they are given about taking part in research.

Alan’s cancer research panel checks whether patients will understand the leaflets they are given about taking part in research.

Age at interview: 67
Sex: Male
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It's one of these groups where we, they send us somebody's research, what they're going to do. OK oh it's wonderful. You find out and you think, 'I want to volunteer for that'. Then you haven't got that cancer, but you want to volunteer for it. There are some wonderful things going on at the DNA at the micro level working altering people's DNA, who they are, changing it slightly so that they fight their own cancers. Oh it's so wonderful what these kind of research things that are going on. You find out about them first, but it'll be ten years before they do a trial and we just help by reading their lay – gosh I can't think of the word – where they put it out to the patients because they want volunteers to go on this. So we help with phrasing it so that they can understand it. We look at it from a lay person's point of view, we're not technically involved in the illnesses and we can say, "Well I didn't understand this." I particularly I find some medical word and then I Wikipedia it, see what it is and try and put it into language that I'd understand. So just little steps changing their, their ideas for the cancer and the form that they send out to people might help someone to join it because they understand it more.
 

Roger B describes rewording a patient information sheet to help it get through an ethics committee.

Roger B describes rewording a patient information sheet to help it get through an ethics committee.

Age at interview: 67
Sex: Male
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Oh lord. Well, there's been quite a lot of sarcoma studies some of whom I've written, for example, the patient information for. I remember one instance where, the study went to ethics – I knew the study was happening. I had read a summary of the protocol, but I'd never read the full protocol. It went to ethics and got rejected, and I can remember the PI coming onto me on an email saying, 'Help!' [Laughs] And, you know, frankly, the ethics committee was completely right, the patient information sheet was a mess. It didn't take long to actually sort it out , you know, introducing clarity is what it's about, you know, clarity of structure and, you know, clarity of the way information is presented was at the heart of it. And it sailed through ethics the second time round. But, you know, those sort of things are very satisfying. 
 

Helen describes the process of checking leaflets are understandable and cover practical real-life issues which matter to patients.

Helen describes the process of checking leaflets are understandable and cover practical real-life issues which matter to patients.

Age at interview: 41
Sex: Female
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I think the area where I have the most problem about ‘am I really lay anymore?’ is, it's trying to read it as though I didn't know anything about the subject or the medication or the condition or whatever else; and resisting the temptation to Google everything before you read it, or half way through reading it. So, it's trying to see whether they are actually talking to real people, or whether they think they're talking to post-grads, or whether they think they're talking to junior doctors. And really seriously commenting on that, and also trying to get the truth out of them. I mean, I can remember for my own clinical trial that I went on, they had mentioned that blood tests had to be taken; for your own safety and also for their data. I had no idea what that would mean in terms of, practical real life impacting terms, and I think that - obviously they weren't lying, they did say you would have to have a blood test every month. 

But, I don't think that they understood what that would mean for me in terms of having to go to my GP, making an appointment with the nurse, walking in and the nurse seeing me and saying "Oh god not you again!" Trying to find a vein that they could get blood out of, sending it off, going into work late because I've been there for a blood test and then wrapping it up and doing it all again the next month. I mean, there's a big difference between a sentence in the patient information sheet that says “you must have a blood test with your GP every month” and the reality of, 'Oh my god, it's you again,' from the nurse. So, I mean that's a more, possibly more subjective thing because, you can't read through everything that they put into information sheet and say, "How do you think that's going to happen?" Or "Why don't you add something that - this is going to be really difficult, and we appreciate that. But, perhaps you could, if you don't mind, do this." There needs to be a certain formality in there just for people to realise the importance of it. But, I think it also needs to be something that is only given to a patient along with the conversation about how this is going to be interpreted in real life.
Getting the wording right is just one aspect of commenting on patient information leaflets; design and layout are also important.
 

Anne was delighted that her suggestion for a picture to illustrate a leaflet about brain donation was taken up.

Anne was delighted that her suggestion for a picture to illustrate a leaflet about brain donation was taken up.

Age at interview: 81
Sex: Female
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Yes I'm often asked from [place name] to assess documents and comment on them because, as you've just said, they come from academics, they're written in academic speak but they're for the members of the public. So I'm sent these to criticise, which I do, and correct and put words that the public, who are going to be reading the documents, can look at. Another thing I've done which I was very pleased was picked up, and this was, sorry I've moved…

You're alright.

…a couple of years ago. This is about brain donations, and it is, of course, a very difficult subject to talk with, with patients. But sometimes they raise it themselves but if they don't we now have a document, a nice little document, nice text and it needed some image and I didn't like the image they'd got so wearing my twenty year old, when I was twenty, advertising hat. I thought, 'How nice it would be to have an image with people putting their hand up. Yes me please, me please, yes and me,' and the image has white arm, brown arm, tan arm, other coloured arms, long arms, short arms and they've used it, PPI for DeNDRoN [Dementias and Neurodegenerative Diseases Research Network] getting people in to donate brains. I hope they might use it for other donations but I was thrilled to bits about that.
 

It’s important that patient information leaflets are designed in a way that grabs people’s attention.

It’s important that patient information leaflets are designed in a way that grabs people’s attention.

Age at interview: 49
Sex: Male
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No the language wasn’t too gobbledygooky or too techy as far as I was concerned. I think, you know, some of the documents were designed, they’re written by the research doctors, so they were couched in all sorts of phrases that were medical and they had to be, because that’s what they were, but the patient information sheet was, was pretty good as it was. I think they just wanted some ideas of some different input on the layout of it to see if it grabbed your attention quickly and easily, and if it was easily understood, easily understandable by a lay person because essentially that is what I am.

I think just the basic layout sometimes. I’ve seen a before and an after version. The old fashioned one it’s just a black and white piece of, well paper with some black type on it, close type, not really set out, not spaced out, not colourful, no bullet points really. And I’ve seen the more updated alternative, which look so much more easy and you jump around it with your eyes and turn to the pages or the elements of it that grab your attention first, so you don’t have to read page, after page, after page, and get bored silly basically. You can look at something and it grabs your attention, sucks you in, keeps you interested, so I think yeah, definitely the style is crucial.
 

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.
As well as advising on information sheets or certain sections of a research proposal, people may be asked to review the whole proposal. This may be to help researchers improve it to make it fit better with the lived experience of those likely to participate in a study before they submit it to try to get funding, or it may be to help a funding organisation decide whether it is worth funding. Several people offered practical advice on how to read documents critically.
 

Peter describes the questions he asks himself when reviewing a research proposal.

Peter describes the questions he asks himself when reviewing a research proposal.

Age at interview: 56
Sex: Male
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I always try and cut to the chase with a research proposal and find out well what exactly, well what exactly is the question they're trying to answer? How many people does it affect? What will happen if the question isn't answered? What will happen if it's answered successfully? What will the next stage be? Is there actually a pathway to something good happening here or is it just going to stop? So it's not something I've done a huge amount of but enough to know that it's, it's quite an important activity. And it's an activity where if you really think as a patient or as a lay person you can pose some quite challenging questions to the researchers who've come up with the idea. And usually they quite like it, usually they quite welcome being challenged or being questioned. And occasionally of course they've said, "You're quite right, we haven't thought of that," so that, there is this, it's a key PPI activity I think definitely.
 

Sharon reviews proposals for research in children. She always tries to think herself into the shoes of a mum or dad asked if their child will take part.

Sharon reviews proposals for research in children. She always tries to think herself into the shoes of a mum or dad asked if their child will take part.

Age at interview: 44
Sex: Female
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When I look at any piece of work I think of the patient, the Mum or the Dad at the clinic with their child and I. So again it's always , so my only work is in paediatrics – so I think of them and the Mums I know, the Dads I know, sitting at a clinic being given that information sheet and how they would feel when they're , straight away their instincts when they're given that sheet. And then I think about the trial design. It's quite helpful to have a research background so I, it definitely helps me when I'm reading it because you understand that the trial design, whether it's a phase three or four and how the trial is actually set out. And then it's a difficult one because often there's a placebo arm, which actually is important but, and I'll understand that from a research background. But then it's trying to find the softener I guess for the patient that might get the placebo in the study. But I always think of the person being given the information about the study and what that study actually will mean to them, and that's the only way I can do it.
The amount of reading people did varied, but Marney pointed out it could be quite a lot. When people are asked to review research proposals, they may send in written comments; for Marney this was easier following her stroke than attending meetings. But people may also be part of a panel which meets to discuss all the proposals and decide which to fund. Attending various kinds of meeting was a common activity. Some people got involved in ‘trial steering committees’, groups of researchers and lay people which meet regularly to oversee the running of a particular clinical trial. Some were involved in ‘clinical studies groups’, which take an overview of research in a particular condition such as stroke or cancer. For some people, such as Margaret, their involvement had spread from local research to national and international committees and conferences, speaking about research to raise public awareness, and speaking about what patient and public involvement can offer. Becoming a lay chair of a committee was another form of involvement.
 

Since her stroke, Marney finds meetings tiring, although she enjoys meeting people. Contributing by email is easier because she can go at her own pace.

Since her stroke, Marney finds meetings tiring, although she enjoys meeting people. Contributing by email is easier because she can go at her own pace.

Age at interview: 53
Sex: Female
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Well, in terms of time commitment, time scale, geography, travel concerns – if your health is an issue, if mobility is an issue, stamina. Some of the meetings I attend are five-hour meetings and yes we have lunch and coffee and all the rest of it – that's an opportunity to get to know each other better, which is also a valuable part of the experience, but it can be very exhausting. And so if your research focus is particularly targeted towards a certain condition that can make it more difficult to perhaps have your voice heard effectively than through other routes into research. So I mean, for example, if you were involved with something about attitudes to electronic health records, for example, that draws in a wide spectrum of people, but if your input is towards cancer research or stroke research or something, then your energy and ability to cope with all that's required may make it quite a struggle.

Fortunately I made a very good recovery from the stroke which is I'm sure in large parts due to the thrombolysis treatment that I was fortunate enough to be given. I didn't have any mobility problems but I had language problems and the use of the internet has been quite important in driving that recovery. Because if you're sitting with the computer, you can put in the time at your own sort of pace and there's nobody there witnessing your failure, shall we say. And particularly because expressing yourself can be an issue, emails are quite good as a means of communication because you can edit it, take as long as you want to get your message out, and all of those things.
 

Stephen attends cancer clinical studies group meetings and conferences. He may speak at a conference for young people with cancer.

Stephen attends cancer clinical studies group meetings and conferences. He may speak at a conference for young people with cancer.

Age at interview: 18
Sex: Male
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The majority of meetings are in London. There’s around three or four of them for the main Clinical Studies Group which I’m part of. Then I’m also part of a sub-group, biological studies sub-group. They meet around twice a year, although normally one of those meetings is via tele-conference. And as well they may be different kind of meetings and tele-conferences for different studies and kind of different things like that. So, as I say the majority of the meetings are in London. As well, there’s different conferences we often go to. I’ve been up to Liverpool for one, and the next one’s in Brighton I think. And I think I’ve also been to a conference in Birmingham as well. And then there’s also a few kind of meetings that happen in Leeds because that’s where a lot of the kind of core patient and public centres and coordinators are kind of based.

Do you see yourself giving a talk at any of these conferences that are coming up?

In the future, yes, it has been mentioned before that is something we would be expected to do and as I say, in the kind of teenage and adult spectrum, there’s this conference called ‘Find your Sense of Tumour’, and it’s kind of been shown that a young person speaking to a young person, is often more effective than a researcher talking to a young person. So it would be used to maybe give, to feedback results and then maybe be asked to kind of coordinate kind of, like a questionnaire thing that goes on, interactive questionnaire, so that’s normally run by young people as well.
 

Margaret has worked both on individual trials and on national and European committees. She has given interviews and made a podcast to raise awareness of research.

Margaret has worked both on individual trials and on national and European committees. She has given interviews and made a podcast to raise awareness of research.

Age at interview: 63
Sex: Female
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As a PPI rep I sit on different, different groupings, i.e. I was invited to sit on the Northern Ireland Cancer Trials Centre Executive Committee as a public and lay person. I was also invited to sit on the Northern Ireland Cancer Trials Network Steering Group which looks at the, all the clinical trials that are going to happen throughout Northern Ireland. I sit with other members, other PPI reps after reviewing every clinical trial within the cancer field that's happening in Northern Ireland. So with an input in looking at information sheets, and if they're national or have already been improved national or international trials, obviously we're not able to change wordings because of ethics, but what we do is highlight to researchers a word or a terminology or something that maybe needs just a little bit of an extra explanation to ensure that people are going to be recruited to the trial. I mean that's, that's one of our main things is to ensure that a trial is worded, is run in such a way that people will say, "Yeah I want to be part of that." Being involved with local researchers, before they're ready to go to , to ethics at the trial designs stage and looking at what they're going…this question they're going to research and how and when they're going to approach patients, which is obviously quite a , an important area that can either make or break recruitment of researchers. But involved in many of those and steering groups, but, you know, steering management groups for clinical trials luckily in my area. 

I also represent my area at a national level at the NCRM, and that's a cancer research network and at a cancer research institute, a PPI steering group. And that has been a real privilege, so and when I went there at first, when I didn't know very much, not sure that I know much more now but, well I didn't know very much, I was just getting knowledge from people who, who were there and doing it, and now it's very much a sharing of knowledge through a UK group and that has been exciting that it's not just things that happen in London, but PPI is important, no matter where you live within the UK. Also the privilege of being part of a European group project of the European Organisation for research and treatment of cancer, that has involved being in Brussels and reviewing protocols and information sheets for trials that are European based in that translation, but of how it translates into English. Been involved in just being in newspaper interviews about why I want, why that I feel research is important and why I'm involved in it, done several newspaper and a podcast for our local university to explain what it means to be involved in research. 
Not everyone feels comfortable reading lots of documentation or attending formal meetings. Kath felt it was important for researchers to find other, less formal ways to involve people, which might include group meetings in the community to gather a range of views. Andrew agreed that not everyone will want to do a lot of reading or work closely with researchers. As Kath said, it’s important that researchers are creative and flexible in how they involve people and that people are aware of involvement opportunities.
 

Kath has developed training for people who haven’t been to university like her. Researchers need to be more inventive about how to involve people.

Kath has developed training for people who haven’t been to university like her. Researchers need to be more inventive about how to involve people.

Age at interview: 55
Sex: Female
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There is a danger that researchers choose people that they’re comfortable to work with because they quite like them. And I have met a lot of people who’ve been researchers in other fields or who have been statisticians in industry, or who have been used in public involvement roles and they’ve been very good at it, but I think public involvement needs to reach wider than that. 

It is, that does mean, that you need to have training for people to do these jobs. As I say, I was lucky that my opportunity to get involved happened after I had learned how to read long documents and get information out of them and present it back. That’s something that I’d been into university and learned. A lot of people in my community haven’t had that sort of education and for them to do that sort of job you need to give them the training of how to do it. So that’s one way of getting more and different people involved.

You also need to do different sorts of involvement. Reviewing research proposals isn’t the only way of inputting into research, and so researchers need to be a little bit more, a little bit more inventive about how they involve people: having events where they talk to people in different ways, or get people to put their views in, in different forms. That seems really important to me as well. 

I think from my perspective I’m most pleased about getting different people involved who have very good stories and very important stories to tell researchers, who may not have otherwise been involved in the ways that they are. So I have supported other people to learn how to do reviewing of research proposals, and introduced them to other ways of being involved that they’ve not come across. And I’ve been helping to design this training that takes actually some of these ideas out into communities, and gives other people the idea of how to get involved. So I think for me that’s my main, the thing that I’m most proud of I think really.
 

There are many different ways for people to contribute that suit different skills and interests.

There are many different ways for people to contribute that suit different skills and interests.

Age at interview: 64
Sex: Male
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I think it depends entirely on the setting; people do different things. PPI means a whole range of things and I wouldn't want to circumscribe what people's contributions could be in particular settings. Some people, because of their personal experience, are very good at working closely with researchers to develop really good types of research, which will succeed because patients will want to get involved with them. You know, I've read a lot of research proposals in the last two or three years because I'm on one of the funding bodies. It astonishes me at times, the degree to which very good pieces, potentially very good pieces of research are harmed because the expectations by the researchers of patients are utterly unrealistic. And if they had talked to patients, they would have sorted out some of the methodological and practical problems, which they're likely to experience in putting those proposals together. The good ones, of course, have done exactly that, and you can see that patients, for example, are really closely involved and may well become applicants and part of a research team, and that it doesn't just look good, it actually gives one some confidence that the methodology is going to work. And we know, for example, that the biggest reason any particular clinical trial or research project fails is because researchers overestimate the number of people that they're going to be able to recruit and retain. And they do it consistently because they want the money in the first place and they want to be optimistic about their project. It's utterly understandable. 

Patients in those circumstances, particularly patients who understand that disease area, can help to mitigate that. But that's one set of skills that a, you know, a patient might very importantly bring to a particular proposal. The process of reading those and trying to assess, again, you know, the statisticians will take one view, the methodologists will take another view, patients will probably take another view. And I think it's really good that all the funded programmes, I think with NIHR, for example, now include patients as part of the, as part of the funding process. I think that is really important. But it will probably be a different set of skills that those patients involved in that bring than might be used elsewhere, and so on. So, that there are lots of ways in which patients and the public can be involved and they will bring different skills too, which, hopefully, are appropriate for the particular task that's involved.
Another key task is helping to set priorities for research – identifying questions that patients and families want answered – and designing new research studies. Some of this may be done through the kind of national committees and clinical studies groups described above. Maxine and Charles had also got involved in ‘Priority Setting Partnerships’ with the James Lind Alliance. A Priority Setting Partnership is a process for bringing together clinicians and patients to pull together all the unanswered questions on a particular topic or condition, and then agree the ‘top 10’ to be recommended for future 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. 
 

Sharon has been involved at many different levels. She and another consumer have done their own piece of research on parents’ research priorities for their children.

Sharon has been involved at many different levels. She and another consumer have done their own piece of research on parents’ research priorities for their children.

Age at interview: 44
Sex: Female
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So what have I done? So actually I've done quite a lot but it's over a long time so I'll just try recap it. Actually I have an Excel spread sheet of everything I've done so we just, I just try and keep a record of it. So I'm on a couple of trial steering committees and I've, what's been nice is, I've been on those since the start of the studies, so that's been really great to be involved and I'm still involved with those. I've commented on loads and loads of trial protocols and trial information sheets, and I've helped to write some of the trial information sheets, or review I should say, rather than helping to write, but reviewing them at a very early stage. And actually it's very hard to write. I've, myself and another consumer have done our own small piece of work where we've sent out a question to, well we actually, it's actually reached two hundred parents, but asking parents what are their top three concerns with their child, condition and care, just a scoping exercise to try and then translate their concerns into research priorities and that's being written up at the minute. I've done an editorial on the importance of consumer involvement for research – that's not really on what I've done there. And then I guess it's just looking at trial proposals from a very early stage and just being involved with the initial trial design and helping to shape that trial design from the very beginning. And that's been really interesting when you've got right in from the first teleconference about a proposed piece of research. And there's lots of really good work that's happening. And it's been really nice to actually to have had an input to that.
As well as advising on research, people may get involved at various points in actually doing the research. This can include helping recruit people to take part in studies; collecting data (for example through surveys, focus groups or interviews); helping to analyse the data; writing up and disseminating the findings.
 

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.

Age at interview: 69
Sex: Female
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It's interesting. It varies quite a bit from study to study. In the fatigue one, for instance, I was part of an initial group, a wide group of patients brought together by the university concerned to sit and do what's called, you know, the World Café kind of event where we'd bounce ideas around about what was important to us about our own experiences of treatment and afterwards. The unit as a whole is funded to look at that bit that's after, if you like, so it's not doing clinical research of a very kind of pure scientific medical kind about cancer drugs or genetics, any of that stuff, it's much more looking at the psychosocial side of things. So that was the kind of the unifying theme, but up within that they had some ideas, but we had lots of ideas as a disparate group of patients who didn't know each other beforehand, oh but they'd somehow pulled us together, brought us in a room and we started if you like establishing some priorities of things that we'd found needed to be done. And this is one of a number of studies that grew, that grew out of that. 

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. 
 

Dave G has helped recruit patients, give presentations and analyse data from focus groups.

Dave G has helped recruit patients, give presentations and analyse data from focus groups.

Age at interview: 67
Sex: Male
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I think really you make your own involvement. So far on the project I've stood in on, I've sat in on patient focus groups; I've analysed patient focus groups information, which is extremely difficult. It's actually is quite, twists your brain quite a lot that trying to do that. I've been asked to give lots of presentations about the work I've been doing. And that's been extremely valuable for me because despite being a teacher – I can talk to shedloads of children, but talking to adults has been an absolute paralysing fear for me. And the work I've done at the hospital and also the work I've done here, I've got much more confidence now in talking to a whole, whole loads of people. It doesn't reduce me to a quivering wreck anymore. So I've done a lot of presentations about my role, I've recruited patients for the project and what else have I done? I've read reports, commented on reports, taken part in video presentations. We did a video about patient's safety where we acted the parts of patients in bed and all the rest of it and done that as well. So it's been quite, it's been a quite wide experience, I think.
 

Rosie helped collect and analyse some research interviews, and implement findings. She chaired the implementation group.

Rosie helped collect and analyse some research interviews, and implement findings. She chaired the implementation group.

Age at interview: 55
Sex: Female
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…but because it was a user led and designed project, you know, service users were doing everything and, you know, I think once the chap guy, who was, he was a paid worker but he was also a service user; once he realised that actually, you know, my interviewing…I mean I'd interviewed people in my prior existence, that's a thing I could do that reasonably sensibly. You know he was quite happy for me to just join in really, so that's what I did. You know so yes I collected data and then I was a bit involved in the analysis of the data and then , and in sort of commenting on some of the drafts, I didn't actually write it, but quite a few of us commented, and then following that project there was a local project in [place name] which got set up which was looking at implementing some of the findings, it wasn't just from our project, it was , it was based with the local mental health trust and so I was working with some staff in a committee which I chaired which was, you know, sort of relatively surprising to me, and you know trying to…in fact what we ended up developing was an information booklet for the acute wards. Originally we were doing it for just [place name] but then because of changes in the Trust it turned out to be for the whole Trust.

So, you know, that was, you know, I was involved in that end of the project of sort of writing up findings and then implementation work that happened afterwards.

And you said there about chairing a committee which was surprising. What was the surprising element of that?

Well I suppose, so in a way, as the main part of the project had finished and so, you know, there was still some interest in working; I can't remember, you know, there's so many different NHS initiatives but it was one of these things about improving services and so there was an idea of having a little, a group to look at service improvement as part of clinical governance in the acute wards and I was, got involved in that which I was very happy to do. I suppose the surprising bit for me which, I mean it was, it was good for my confidence but I ended up chairing that group as a service user when there were clinicians, you know, there were clinical people on the group as well. You know so that was the bit that surprised me I think. It was fine and you know I suppose because I'd been an administrator in the past, you know, I'd been involved in running meetings and actually I suppose in a way that…so it was like it, having those opportunities allowed me to reconnect with skills that I had had in the past so I could do them and I'm fairly tactful so I was reasonably good at trying to balance the sort of user and professional contributions; and other people were really helpful, you know, it wasn't a particularly difficult group but you know it was another way in which I was able to kind of build my confidence I suppose.
Maxine, Mary, Rosie, Anne and others had got involved in writing academic articles with researcher colleagues.
 

Mary is proud to have helped edit a book on survivor research; she has also reviewed a book based on a PhD study she took part in.

Mary is proud to have helped edit a book on survivor research; she has also reviewed a book based on a PhD study she took part in.

Age at interview: 60
Sex: Female
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I’m very proud of ‘This is survivor research’ which was a book that I helped edit. I was one of five people that edited this book, and I don't know if you know about being in a book or editing books – it takes a long time; and so that came out a few years ago and there's some other books since. But I've also been, written chapters in various publications as well – one about employment; how I got to be self-employed and the things to look out for. I've also through, in a publication called, 'Women who live with Drink,' because I was a woman whose husband was an alcoholic. So I presume I've sort of got a ‘carer’, if you like, hat as well. And that was based on a PhD dissertation that I'd done with somebody’ and then they wanted to publish it in a book’ and asked my permission if they could’ and they gave me another name which I was so cross about. 

So, I wrote about the fact I was cross about being anonymous in a publication that was, this was psychological stuff. So, and they asked me to review the book and to see whether the, because it was testing various approaches and it was very interesting. But I haven't really, despite of that I think because of the sensitivity around me and drink and everything, I think people, even though I'm very keen to put my name on it but nobody else wanted to put their name, so I just had to go along with it. But it's always rankled, that nobody would know it was me, unless they were pointed out the.

Why's that?

What being anonymous?

Yeah why does that annoy you?

Well it's because I'm proud of my experiences. It's me, it's my experiences and I own it. If I didn't want to talk about it, I wouldn't, and it wouldn't you know. But I mean, I suppose the other people they had children and all the rest of it, and that they might be upset about what they read. But I just, it's not my style to be anonymous or to be, I'm very inclined to stick my head over the parapet and see what happens.
 

Her interest in the link between a rare condition and possible environmental factors has led Anne to write a paper with a professor of epidemiology.

Her interest in the link between a rare condition and possible environmental factors has led Anne to write a paper with a professor of epidemiology.

Age at interview: 81
Sex: Female
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And this is where I'm working with, happily, a professor of epidemiology, at a very large southern university, and he has looked at all these statistics. He's also, in his position, been able to access, what's called the Ten Europe Study. This is these rare conditions, ten European countries have input their data, he has access to that and this is showing some very, very extraordinary statistics. So he and I have been working together, I’m very happy to say, for a few years.

OK and what have you been doing with him in terms of work?

Well he's been looking at the various factors of rare neurological diseases. He's been advising me on many of my presentations and at the moment we have a joint paper in, which is being peer reviewed at the Royal Society of Medicine.

On a particular rare neurological disease.

And how did it come about that you ended up writing a publication with him? 

He invited me to, he invited me to. Mm…

OK. And what's that been like writing that with him?

Oh marvellous. The fact that somebody had listened and I'd been down to his department and we'd had meetings there and I've picked up a particular factor which has not been addressed, if at all, in the UK. I'll give you the background to that. I've been mapping these cases for years and I need to know how long the person's lived there; I need to know a lot of factors about the environment, and as I map these cases, and I won't tell you which counties, but it runs to hundreds of cases, patterns have emerged and these do link in very strongly with a particular environmental non-ionising radiation source. Now this is just anecdotal except that I've been able to have these areas measured by professional teams under NDA, which is Non-Disclosure Agreement and he has seen these maps and really the fit is so extraordinary. When you get in a very small area you might get a line of cases running up the country for many kilometres, there is a reason for that. 
 

Richard was flattered to have been invited to be a co-author on an academic paper. He describes how the style of writing was like learning another language.

Richard was flattered to have been invited to be a co-author on an academic paper. He describes how the style of writing was like learning another language.

Age at interview: 54
Sex: Male
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A few years ago I was very, very flattered to be asked to help out with a particular study and actually writing the paper to report on that study, which eventually was published – enormously flattering because my name is now there. It's on a, it's on a list of people who are published health researchers. And I'm so proud and I wish genuinely my mum had lived long enough to see that because as an ex-nurse she'd be absolutely delighted. The process was much longer and harder than I thought it would be and what I never realised was how people agonise over every word, but also how every time I tried to suggest a plain English way of saying things – change it from passive to active, for example – people looked at it and then thought, 'But actually this is not the way professional journals publish their papers.' There is a particular style that journals seem to like, a very dry academic style. It's often the way local government reports are written as well. Things happen by magic, no names are ever attached to anything, nobody ever does anything. 

We, ‘these results have been reproduced by’, not ‘we reproduced the results’. Everything happens by magic. But that's a style you have to learn and I suppose it's like learning another language. I wish things were reported in plain English, and it's a big theme of mine. Let's have trial results reported in plain English, so that the people who participated in the trial – because it's our results – can understand what we have done, what we have helped find out. But this particular journal, it was plain ‘Englished’ as much as we could, and I'm very proud of it. I am really chuffed that just once in my life I've been associated with a publication, a research publication. It's a long process, loads of emails, hundreds of them, and care taken over every single word. And then the footnoting and the referencing – that was like being, that was like being back at university and having to cite all the references that I'd read for a dissertation or an essay or something. It's something I've always hated.
Finally, people may get involved in promoting the whole idea of research and raising awareness.
 

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.

Age at interview: 62
Sex: Male
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There is a stage of having the patient voice and hearing people's experiences, which is, has not been really touched. There are good examples of it going on, but it is still a new kid on the block in that sense, and that is, how we capture the patient experience of being a research participant. And by that I mean the customer experience. Now that it, you see researchers and you see policy makers turning their heads as if we're turning research into a Tesco’s of tomorrow. But there are things that Tesco’s and other companies do that we should be learning from, and one of those is how we actually measure and capture the experience? So, a good one that we've just had recently was the mystery shopper campaign, where we sent some people in and when I say we, the National Institution for Health Research clinical research network was very influential in sending some people in the cancer network, well certainly rolled out a number of people. And they just went, and they went to the front door reception of a hospital said, "Do you do research?" And somewhere we know research was done said they didn't, and we'd given that feedback to Trusts, and some Trust Boards are now looking at that because they're going, "This is quite worrying. We thought we told people. We've got a poster somewhere." And that poster doesn't quite do it for me. The Medicines for Children network, I thought they were just brilliant – they got some young people to do a treasure hunt in the hospital, and they had gone round beforehand and they had actually deliberately put some patient leaflets and stuff about, and they'd put a number on them. 

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. 
See also:
Types of Involvement
Skills and background for involvement
The value and impact of patient and public involvement in research

Last reviewed July 2017.
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