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Patient and public involvement in research

Long-term involvement and expertise

Elsewhere we discuss how enjoyable and rewarding research involvement can be, and how some people spend many years contributing to a range of projects. As a result they often felt they became more effective at doing it – but also wondered if they were losing the freshness of their perspective and becoming too familiar with research. This is an important tension in involvement, which generates some strong feelings on both sides of the debate. One way to overcome this is to find different ways for people to contribute over time (see also below).

In the beginning when people first got involved they often didn’t really know what to expect. Being in a room full of professionals, who expect you to speak up and give your opinion, could feel daunting. But people were aware they were bringing something to the table that the professionals didn’t have; their personal experience of illness or using the NHS. In addition, they might also bring other skills they had developed in other aspects of their life. Looking back, they were often surprised by what they’d achieved and were doing things they’d never dreamt they’d do.
 

Roger A is ‘just an ordinary chap’ - but he is also an expert in caring for someone with motor neurone disease.

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Age at interview: 65
Sex: Male
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I mean not surprisingly, in the early days you feel intimidated. This is someone eminently qualified, superb, some of the, some of the finest minds around. And I’m just an ordinary chap. But, I am an expert in my field, as a carer. I have a contribution and I’ve learned that they actually appreciate and value and respect that contribution. And sometimes, the academic can actually get so wrapped up in the academic side of things, they sometimes miss the fairly obvious, ordinary, everyday common sense answer.

I think that’s why my work with the local group of the national charity is important. It keeps me in touch with ordinary people, with carers, families, friends, with the people with the disease. I go out with the, with the group to coffee mornings, to hospices and places like that and meet people with the disease frequently. It also means that I have probably met more people with motor neurone disease then most social health care professionals will ever see. So that gives me an expertise.
 

It never occurred to Dave A in the beginning that he’d end up in the places he’s been to.

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Age at interview: 60
Sex: Male
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It never occurred to me for one moment that I’d end up in the places that I’ve been to in the last, certainly in the last four or five years. From joining a local group at [university name] and expecting to have sort of some input into local research projects to the I guess, the most extreme place that I ever ended up being a speaker at an international symposium at the British Embassy in Tokyo, about patient and care issues in cancer research, was somewhere that I had never really expected to end up. 

But generally, wherever I’ve gone in the, in the world, and it’s been in the world now, I’ve been to the USA, several meetings in Europe. As I say I am finding that as members of the lay community, we’ve been accepted, we’ve been welcomed with open arms and we’ve been treated as equals at the, at the conference tables that we sit at.
Over time, people felt they developed a greater understanding of research and knowledge about health. They also gained new skills, from attending training, working with professionals and through their experience of various involvement activities. By being immersed in research in this way, people often began to use the same language researchers used, language they perhaps didn’t understand in the beginning. They felt they had to be careful not to become too much like the researchers and still able to think like patients.
 

Understanding research language means she can explain things to patients that she now takes for granted, but Maxine has to stop herself from using the jargon she’s picked up.

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Age at interview: 72
Sex: Female
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No I don't think so. I mean I like the interaction with people in the field. I like actually speaking to people who are doing the research and being involved with them and seeing their enthusiasm and being able to ask them questions directly I suppose and that opportunity comes because I get asked to, why I'm allowed to go to these conferences and things of the associations I belong to.

They often don't realise or can't believe that I'm not a doctor [laughs] or a scientist.

And in a way this has a, it's a good and a bad thing because I'm kind of able to explain to the ordinary public or another patient some of the terminology and the concepts which I now take – oh look at that magpie – I now take for granted because when I see; I can remember being fazed by the first time I saw lesion. My God that sounds horrible. What is a lesion? [Laughs] And of course, you know, I have to stop myself from using that term because, you know, it's a patch or an area of skin that's affected by something. And it sounded really terrible to me, very serious – a lesion, my God. 
 
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Helena worries whether government investment in health research will continue; ‘the plug could be pulled at any minute’.

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Age at interview: 43
Sex: Female
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What do you think the future is for PPI?
 
I don’t know actually. I was thinking about this the other day. I think the plug could be pulled any minute. I would – I hope it's not – but it depresses me how few people really understand why they're doing it and really get it and so I think it could quite easily. All it needs is a change of government that thinks actually, 'Do you know what we're not going to put money into research anymore.' And it's quite surprising that they did in the last budget. It's one of the few things that wasn’t cut was health research. And it was one of the few things that they continued on with, you know, that no decision about me without me. But that’s just a bunch of politicians and they can change at any time and I'm not convinced that it's rooted enough that it wouldn’t just wither. And it does worry me slightly that, career wise, and partly worries me slightly career wise that the plug might be pulled and so those special skills I have are not useful anymore. But also I kind of - I'd like to do some research which involved other people but I wasn’t the patient as well; that actually I was just an ordinary researcher and I needed to ask other people for their expertise because partly that’s just interesting and, partly because it's hard work being the patient as well as the researcher because you're doing two jobs.
 

Dave G strongly feels training is essential. He disagrees that being well trained means you become ‘too professional’.

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Age at interview: 67
Sex: Male
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I'd have liked a struct, I'd have liked a structured introductory course on methodology: what the terms meant, a little bit about how these studies were done and structured, and I don't think they had any real idea about how to train lay participants up in this method. I got a bit of bone of contention about this. I think lay participants need to be trained and I don't see why, I know a lot of participants participate at various degrees – you get participants who will tell their story and that's very valuable. But at some level I think you need maybe the citizen researcher who has actually gone through some level of training – it might be online, it might be whatever – and then form a pool of researchers which you can pick for so you know that, if you are getting a citizen researcher they are trained to a certain level in what research skills are. They're not starting from blank. And one point which was made to me, especially about presentations, was it's alright patient participants doing a presentation, but once they become too polished at doing a presentation and too professional then they're no longer patient participants. And the same argument is if you become too much of a researcher you lose that, I'm not too sure, metaphysical element of being a patient researcher or being a patient – you lose something by becoming more expert. Now that's never really computed with me, I don't see why becoming good at something should be a bar to going on to actually exploiting the skills that you’ve learned. That seems to me you might as well learn to be an architect and when you pass your degree they said, "Right fair enough you're now an architect, we don't want you anymore you're skilled," and want somebody with a little bit less training. The whole thing's nonsense I think so I do think you need to be trained. People who want to go to that level, not everyone does, need to be trained as a citizen researcher if you like.
 
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Helena thinks her research colleagues didn’t see her as ‘naïve enough’ to be a patient because she had a PhD. She feels that reveals a lot about power relations. Researchers can use their own patient experience but only if they’re honest about it.

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Age at interview: 43
Sex: Female
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I was working in one place where they were doing a big piece of a massive study on my condition. And they didn’t ask me anything. And I was going to meetings with them and I was doing this and I kept on saying, you know. They kept on saying, "I don’t know, you know, we need to do PPI for this," and I'd say, "OK hello, you could ask me." And , and also their methodology was appalling and it could have been, it was a pointless piece of research; it was a waste of time and it could have been much better if they had just understood the condition better instead of just what they thought the condition was. And I found that very interesting and a part of me wanted to almost do a separate PhD on why they didn’t see me as a patient because that, I think that was why – it was because I was presenting as a researcher in their eyes so I didn’t count because I would have been, I wouldn’t have been naïve enough, which is the other thing as well that people say, "I want my patients naïve." Which is such a beautiful insight into what people think the patient is.
 
….I work in places where people are quite concerned about PPI and they, some of them do have long-term conditions or conditions that they are not bringing to the fore in their research, which is fine, that’s up to them. But quite often they then do this thing where they say, especially if they disagree with you, "Well we're all patients." And in other words that’s shorthand kind of for, "Well why should we listen to you when my voice is just as valuable as yours," and to which case I would say, "OK great, yes it is. You tell me in what way it is valuable. You tell me what way your experience brings something extra to the table. But that means you’ve got to be out about your condition. It means you’ve got to be reflexive about your condition." I am being all the time and I am out about it and that’s tough. And fighting people saying, "Oh you're not objective, you're not objective," and having to say, "OK no, neither are you and this is why," is tough and I sometimes I would like to pass as healthy.
 
So I would like people who kind of go ‘oh we’re all patients’. Fine, then you need to think about in what way you're a patient and in what way you're not; and in what way particularly. Somebody who occasionally goes to the GP is different from somebody who has a chronic condition and that’s not to say that your experience is less valuable; it depends what you're researching. 
 

You need to be challenging and assertive and stand up for your point of view when you feel dismissed.

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Age at interview: 69
Sex: Female
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Being able to stand up for your own point of view when apparently dismissed or challenged and to recognise that in, you know, in academic or research discussion, you know, debate can be kind of quite vigorous, and that disagreement isn't necessarily the end of the world. I was used to that from kind of family background but also having, you know, worked and had to, you know, to be director of something where I was responsible for representing, you know, my Unit and its values and ways in which I was trying to project it within the university and the to the outside world. 

So being able to confront, it's not about confrontation, but it's about, you know, being able to disagree without being confrontational, but certainly you have to be able to confront people at times if their attitudes or behaviour seem, you know, unacceptable, if they're overlooking a patient point of view. But it's having ways of introducing things that you feel are important or maybe something's been overlooked or been dismissed that you want to kind of get on the agenda, get discussed then you need ways of feeling comfortable about doing that and hanging on in there. And something that I probably haven't got enough of or done enough of, but would be good to do, is in actually getting feedback. "OK so if you remember I said this last time? Well what’s act…you know, what's actually happened as a result?" Have, you know, people will often come back to you and say when they haven't been able to do something. It's just not, you know, it's been a reason for it and you may challenge the reason but if it's real then that's OK. Say, "OK well next time let's get that into the funding earlier," or you know whatever the issue might be. 
Becoming ‘too expert’ in involvement to think about research from a patient’s point of view was a concern for some. They worried it meant their perspectives may not be fresh or that they would miss issues that patients with more recent experiences would notice. As Helen said, ‘I’m beginning to – this sounds silly – I’m beginning to feel over-qualified to be a lay person. I’m beginning to lose my lay perspective’. Dave X felt there was a point when people could become too expert, but he said, ‘I hope I don’t reach it’.
 

As she gets familiar with research Helen worries she starts to lose her ability to ‘be the person on the bus who doesn’t know anything.’

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Age at interview: 41
Sex: Female
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I think the problem is that you begin to learn the shortcuts and the shorthand that researchers use for things, which means that you're not forcing clinicians and researchers to spell things out in full because, you know what they're saying. So, you're no longer a lay person who doesn't understand any of this but, you're not a clinician who does understand all of this, and you're beginning to move up that spectrum and away from a position of needing everything to be spelled out for you. So, you're no longer doing the job of defending the absolute lay person. You're no longer the person on the bus who doesn't know anything. You're the person sitting in the hospital waiting room who has got a little bit of knowledge. So I can understand what you're saying, and you can't - it makes it more difficult to justify being a lay person on any kind of committee [coughs]. If you know that when you read this research proposal - if you know that shorthand here means something, you're more likely to just gloss over that, rather than saying, "You need to explain in full what X Y and Z means." If you were to read, for example, patient information sheets for any kind of, you know, even non-medical clinical trials; if you were to read any kind of patient information sheets, if you're not reading them with absolute lay eyes you might be putting other people, not necessarily into danger but, into untruth. 
 

People can become professionalised and may stop being useful, but this doesn’t have to happen.

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Age at interview: 64
Sex: Male
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I think there are two or three different issues there. One or two people have said to me, "Well of course people become professional PPIs," and you, there is probably a sort of trajectory – you, you start totally ignorant, and naïve, and asking lots of questions about very basic things because you don't understand how research is done, and you don't understand all the acronyms and the , the structures of, of the research community and so on. And you, you play a, you probably play a role there in terms of encouraging the community of researchers to think about what they're saying, the way they're saying it and making things accessible to the wider public. And that's probably very helpful and it is important. As you get more knowledgeable, you begin to slip into the same problems yourself, you know, you use, you know the acronyms, so that you use them. You know the language so you accept it, and you stop questioning it. You may be able to contribute more in terms of knowledge, but you're actually now becoming contaminated by your access and increasing knowledge. And then there may be, well be a point where actually you've become so embedded in the organisations and the ways of doing things that you cease to become useful, and you probably better go on and do something else with your spare time, and volunteer in something entirely different. So, yes, I think there is a kind of trajectory that possibly some of us go on in that respect. 

I don't think it's inevitable, and actually you are probably going to be, constantly refreshed and challenged by the, your communication with and access to new people, new PPI people, who are being recruited, and bring their own understanding and individual contribution. 
 

Dave X hopes to continue learning and being involved, but sometimes people lose perspective and need to stop.

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Age at interview: 65
Sex: Male
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And do you think there's a point at which lay members or people like yourself, users, is there a point where you'll be too expert in all of this to give a lay perspective or PPI perspective?

Yes I do. I hope I never reach it but I have seen people not actually on the, on the research side, but lay people who have become simplistically too big for their boots and there needs to be a safety mechanism where someone who gets like that is gently removed. They don't, they cease to be objective, they think they know it all and that's dangerous in my opinion for various reasons. And I hope that I continue on the path of learning all the time, and again it comes back to that two ears, one mouth: listening and learning all the time. But I do see that it, it can, in certain instances become a danger.
To guard against this, one suggestion was to refresh committees regularly with new people, especially those with more recent illness experiences. But it was also argued that it’s more important to have the right person on the committee than a new person. Dave A was replaced after five years, but said, ‘I felt I still had something to contribute and had they not been able to replace me in a sensible way then I would have felt really aggrieved.’ 

Others, however, thought long-term involvement and gaining expertise made them more effective at contributing rather than less effective. Roger B argued that being involved for a long time and gaining new skills didn’t mean you had to lose your ‘own specific patientness’, especially if you keep links with other patients to keep your views relevant.
 

Freshening up committees with new members is always a good idea because people can become ‘comfortable’.

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Age at interview: 54
Sex: Male
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I think people who stay in the PPI world for a few years do have a certain shelf life in what they're doing. The important thing for my background in cancer is that once we have served our time on a clinical studies group, we come off it the same as the professionals do. Now we can go onto another one if we have a particular reason or background that would allow that to happen – we can go onto another form of research committee somewhere. Certainly, if we've developed skills and we've had training that's the logical thing to do, to actually move around. But I don't think you can stay in the same place because I think you do become institutionalised, jaded, comfortable – whatever word you care to use. There are good reasons for moving people on after three years, five years, two terms – however it may be measured – and I think it's very important that the patient reps are treated no differently from anyone else. I think too it does all of us some good to shift around just for the sake of bringing fresh pairs of eyes to old situations. All committees need freshening up every now and then, whether it's health research, or school governors, or running a rugby club, you always need a bit of fresh blood, a fresh approach every now and then. It's a good thing to do.
 

People should seek out others’ views and be as representative as they can but without losing ‘their own specific patientness’.

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Age at interview: 67
Sex: Male
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And every one of those people should be encouraged to have roots outside within their specific patient community if that's at all possible. Now, it doesn't mean to say they have to be necessarily an active member of a national charity or anything like that but maybe they do some local work with a support group so that they can tuck into the way that, you know, other colorectal cancer patients or breast cancer patients, prostate cancer patients are thinking and feeling and behaving, and can talk to them about their involvement in clinical trials, for example, and how they're feeling about that. We've got to encourage our representatives to be as representative as they can, but never to lose their own specific patientness. You know, there is value in that individual patientness which is very hard to deny.
 

Peter never stops feeling like a patient but ‘it comes in bursts’. Staying in touch with current patients or getting involved in a particular study helps remind you of the reality of illness.

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Age at interview: 56
Sex: Male
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And it comes in bursts. I'm still a patient so I still have to go for health checks and things and in those periods I feel very much like a patient. And all the patient feelings that you had way back at the beginning come back and you're acutely aware that you're still a patient. But when those peaks have passed then you don't feel quite as much as a patient; you just feel like a normal person who's contributing as part of a group, which is, and that allows you sometimes to be more objective, I'd like to think. Yeah, I don't think you ever stop feeling like a patient really, but the intensity of it varies depending on what you're doing and what stage you're at.

And what about this issue about kind of being involved for a long time and how you can sort of retain your 'patientness', as it were, to bring to the table when you work with researchers?

Yeah that's quite a challenge because if you're fortunate enough to be a long term survivor of a nasty disease, then you naturally will forget, not forget, but you will become less acutely aware of your patient experience. So I think the way to keep that is to continue to remind yourself of what it felt like without making yourself anxious. But maybe to pick something that you're doing that actually will help to remind you. So maybe you pick a project or pick an organisation that's been very close to patients and that would serve as a useful reminder to you on an ongoing basis – what patients who are still ill or still have a battle or are still going through treatment or whatever, what they're having to face and it'll remind you of what you had to face at the time. So that would be no bad thing. Not always easy to pick and choose what you get involved in though.

Why's that?

Well just because that's the way things were. I mean I suppose you could seek something out. I suppose you could make it your business to seek something out that was very close to patients. And sometimes things present themselves to you and at a time when you either want to do it or don't want to do it and it maybe the right thing, it maybe the wrong thing.
One argument that is often heard around long-term involvement is that people become too ‘tame’ or ‘domesticated’ as Rosie called it. They become so familiar with research and researchers that they can no longer be critical and challenging. An alternative view is that the longer you are involved and the more skills and expertise you gain the better you are able to challenge. Tom had cancer twenty years ago and said, ‘In some situations you’ve probably got more to offer maybe because [you’ve] had all this time to reflect and think about things differently.’ It sometimes felt to people as if they couldn’t win; either researchers said they couldn’t be involved because they didn’t know enough about research, or they couldn’t be involved because they knew too much about research and were therefore no longer able to bring a really lay perspective (see also ‘Training and learning’). Dave G felt the idea that he was a ‘professional patient’ was ‘an insult’. Helena, who had done a PhD in her condition, felt frustrated that research colleagues now dismissed her as not ‘naïve’ enough to bring a patient view. Catherine argued that she could never cross the line and be on the same side as professionals. Like others, she felt she was unable (and unwilling) to forget important life-changing moments from her past experiences.
 

In spite of Catherine’s skills and experience, she will never be on the same side as the professionals. She brings a carer’s view.

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Age at interview: 51
Sex: Female
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I mean I'm a fifty year old person who had a microbiology degree which I completed when I was twenty one or twenty two, so for thirty years they have, if the average age is my age which generally it is, there are some people a bit older and some a bit younger, there are some PhD students who are in there – mid late twenties. They are truly experts in their field. 

I'm not an expert and not only that, because I have, been outside the system or a user of the system I see it as a user. I don't think that they can ever see it as a user, in fact, I'm going to tell you the story I read in the newspaper, where did I see it?  There was a two page spread in my local paper and in it there were three specialists, prostate cancer specialists, who all developed prostate cancer. So the story was asking the prostate cancer specialists to discuss their treatment and what they chose to do as consultants in their field, to be patients with their own disease. 

So one of them chose to have a chemotherapy and radiotherapy; one of them chose not to have the chemotherapy but to have the quality of life that he knew chemotherapy would withdraw; one of those people, one of the three people did die, one of them has survived and gone back to work, and the one that survived and went back to work put down that he could never have known what it was like to be on the other side of the fence and I think that's what a PPI person brings – is being the person who walks into the room who is terrified for their own or their child's health and, or concerned if not terrified if you're not in a critical condition, and who constantly comes up against the medical jargon, a system of how things work and having experienced a terminal cancer diagnosis for my husband, nothing can prepare you for the shock that you go into when you have a terminal diagnosis. And no matter how much training and no matter how many years you sat as a medical person, handing out that diagnosis and watching people in front of you, you don't know what it's like until you've been that person at home, trying to eat a dinner and throwing up at the thought of the person opposite you dying. You don't understand that until you've been it. So PPI representatives should never feel that they're on the same side and I don't think you do. So I don't feel I'm getting too close to them because I've been on my board and I've been allowed to stay on it for longer than three years. 

I'm only allowed to stay a little bit longer because they do always turn all of these positions which they should.  I'd hope to get another one, on a different board and pro-active again and help because I know that I respond so well and my work's encouraged. But PPIs are very essential because they just don't understand and that article I read in the newspaper about these three gentlemen who got their own illness and took the treatment; they all were shocked and the last one who was able to go back to work said that the biggest thing it gave him was empathy. He had never understood what it was like to be on the other side of the table.
 

Rosie still has bipolar disorder but hasn’t used services for 8 years. She feels she’s in a better place to advise on some aspects of suicide research than someone who is at active risk.

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Age at interview: 55
Sex: Female
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Because this is all quite complex, you know, we're talking about, you know, health research itself is complex I think involving the public is not a straight forward thing to do particularly in not all areas. So particularly like in acute care, you're doing a breast cancer study, maybe become completely obvious who you involve and there may be loads of breast cancer organisations out there that you can just send them an email and go, 'Are there any patients?' you know and there you are sort of… do you know what I mean? 

So for example one of the things, because now I'm, you know, obviously in a way quite a professionalised public involvement person. I still do act as a mental health service user but I haven't used services for eight years. I mean I still think I've got, I've got bipolar disorder, I don't think anybody would say I haven't got it, certainly no psychiatrist would say that and I think I still have vulnerabilities but I'm fortunate in that I've been well for a long time and I no longer take any medication. 

So in some respects if you're doing a study about current mental health services, people's experiences of them, I'm clearly not an appropriate service user to ask. But in other situations, so for example in the suicide programme; I've never actually tried to kill myself but I've wanted to kill myself and I've had quite a lot of the, you know, I've been clinically depressed, I've been detained and actually because some of the components of the suicide programme actually look at suicide methods and how fatal different methods are, actually I, you know, we think – this is me and the people who I do it with – you know it would be very inappropriate to involve people who are an active risk of suicide, of harming themselves or killing themselves. You could not be, you know, it wouldn't be right to involve people like that in that, those components of the programme so actually the fact that I'm a bit sort of back from my experiences quite helpful.
 

Dave G doesn’t feel like a professional patient, but his experience means he’s a more informed citizen researcher.

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Age at interview: 67
Sex: Male
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And quite often informally not in the meeting strangely enough, but outside the meeting it, I'm buttonholed by patient researchers and they say, "Well actually we wish we were doing what you were doing." But having said that I once put forward what we were doing at [city name] and afterwards one of the patient participants got me in the corridor and said, "The trouble with you, Dave, is you're becoming a professional patient". And I sort of said, "What do you mean by that?" "You're a professional patient". 

So that threw me back because I wasn't quite sure what a professional patient was and am I becoming one? I don't know. It made me think very hard about what my role was and what I was supposed to be doing.

And what did you come up with? I know you sort of mentioned this earlier on but in terms of you being a professional patient?

I decided that I wasn't a professional patient. I didn't understand the term. I was becoming a much more informed patient, a much more informed citizen researcher if you like and I could do the job better because I understand what research was. I had a lot of confidence in how research goes forward. I wasn't frightened to make my views known in a professional way within the group and if that’s being a professional patient then I don't know what a professional patient is. I'm not a professional patient. I regard that as an insult.
The thought of no longer being able to be involved because they had become ‘too expert’ saddened people. They felt strongly that there should be some way to keep people involved in the long term and benefit from the skills and experience they had gained, but perhaps move them into different roles rather than losing them altogether, which seemed wasteful. Dave A described this as the ‘conveyor belt of involvement’. This could be by taking on more national or strategic roles (for example national committee work, advising research councils and the National Institute for Health Research), mentoring new people and running training courses for both researchers and people starting out on involvement. But some people wanted to reduce the amount of time they spent in research, which would lead to opportunities for others to get involved.
 

It’s important to remember why you got involved in the first place – Janice said she’d be sad if she had to stop being involved.

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Age at interview: 66
Sex: Female
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Yeah and I have to say that that is something that I think is the cause for concern. I talked earlier didn't I, about the professionalisation of lay members on research ethics committees and getting people who were perhaps very far removed from direct experience of patient care. But, I think, that someone like me, after all these years there's got to be question marks about when I stop being really lay and I become professionalised, if I'm not already myself. And so the things that keep me going, I am aware that I need to be careful, that I don't lose or haven't lost what it is I thought I was bringing in the first place. I mean that's why when I had to leave the ethics committee after eight or ten years I thought that was absolutely right. I think you should refresh membership of all committees like that and you need new people coming along, both clinicians and lay. But, I suppose because through various health problems in our family, we do have a lot of contact with the health service, both primary and secondary and sometimes tertiary care. I think I do still feel that I do bring that awareness of what it's like on the ground, and I do talk to a lot of people just even people in the street, friends, neighbours about their experiences and I still feel that they help to inform how I see things. But, you know, I mean I am mindful of that loss of freshness and I need to think hard about if what I'm contributing is different now and that's quite a sad thought really [laughs], you know, giving it up.

Why's that?

Well because I still enjoy doing it, and I suppose I still feel, well I suppose I must still feel I'm contributing something, but then I am aware that I'm not the best judge of that. 
 

People can stay involved by taking on different roles. The beauty of involvement is that there are other opportunities.

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Age at interview: 54
Sex: Male
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When it comes to our, the question of whether or not people can still be useful ten/twelve years after their own illness has ceased, I'm biased because I had a long time after I recovered from my first cancer before the second one hit me, so I'm not a very good example of this. But, I do think people are still useful. I firmly believe that. But that happens in all walks of life. You don't say someone has suddenly ended their shelf life as a something just because they reach a certain age or at least we shouldn't. It's whether or not they can still make a contribution and the beauty of PPI is that there are always opportunities to make a contribution somewhere else. We tend to think in structures and I certainly tend to think and talk about structures, about committees, but actually it's far more useful to look at the experience and the skills and the talent that people have, and how they translate into other areas. People can still give advice on parenting long after their own children have grown up. Teachers can still teach, even if they may not be teaching geography, to fourteen year olds, they still have the skills of being a teacher, the skills of explaining things. There are things that we all do in life, which we can translate to different circumstances, but I do think, having said that, that you cannot sit on the same body or perform the same function over and over again. We all get tired doing that, we all, our cars all run out of, energy sooner or later the engines die, the tyres go bald so do we. We all need to freshen up every now and then.
 

Mentoring new people would be a good way to remain involved, although Sharon thinks her experience will always be relevant as her daughter’s condition will never be cured.

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Age at interview: 44
Sex: Female
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I think it's important that these new consumers have a voice and I guess we get away with it because we've got new people on rather than the same people. And I'd like to think, I don't think they would see it yet, but I'd like to think I'd almost like to be a mentor for people joining the, as a PPI consumer reps, I'd like to think that I would like to be their support person to help them fulfil their role and to get the most from the job, but that it would be more about their voice rather than mine. That's how I'd like to see it evolving and moving forward.

Because I was going to say that if you do have an end point to all this.

Yeah.

What do you do with the people who have had this experience and gained these skills and…?

I know. Well that would be a nice way to maintain the contact, wouldn't it, and to almost be that support person for them in the role because I think there has to be an end point. I think it is different with chronic illness because you're still sadly using the service; you're still treating your child. Nothing's changed other than slight advances in medicine so nothing's changed in terms of your patient experience. You're still at your clinic every three months, so you're still very much connected with the service and it's still very personal to your family and to your connections. But, yeah I think that would be a really nice way of actually continuing to be involved and your experience and your confidence in your relationships that you've built up still being, still being valued and I guess still being – I don't want to say used because I really, really dislike that word, when you use people –but it's still being utilised I guess. 
 

Neil is becoming more selective about involvement. He thinks opportunities should be rationed.

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Age at interview: 65
Sex: Male
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I get about probably an email a fortnight with an involvement opportunity. Back in my highly enthusiastic days about two years ago I used to just about apply for everything, it was such a great exciting novelty thing and I was so enjoying it. Over the last two years I'm now much more selective. So I think, well that's a better fit than that is so I can make more impact on that one probably. And also I find that the number of people involved has increased enormously, so that I wrote to IP and said, 'Look why don't you ration it so that those who are the old hands don't automatically, because they know the system, you know, get considered first. Spread it around more. I don't mind being less involved, you know, I'm not going to be offended by it, give the job to somebody else.' And that's been happening. So I'd say probably one in ten , no that's a bit high, one in five of the things I'm interested in I get accepted for, which is great because it means other people are getting a go at it so.
Changing roles over time were a common experience for people who had been involved longer term. Roger B said his role was more strategic now than when he started. Kath initially reviewed funding proposals, but then began to do some community outreach work to train people in understanding research methods. Being involved for a long time led to new career opportunities for some people. Kath and Rosie were doing PhDs in involvement, and Helen had begun to work in patient and public involvement and engagement. But, as Kath pointed out, people don’t have to develop careers or even commit a great deal of time to research. They can dip in and out of it as they choose. Helena, who had already completed a PhD in her condition, pointed out that sometimes the research world is not sure how to treat user-researchers. Straddling different worlds sometimes felt quite powerful but could also feel very uncomfortable.
 

Over the years Tom has become more involved. His involvement takes him all over the world.

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Age at interview: 68
Sex: Male
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Again it's through various organisation, different organisations where I've had invites and done presentations and I've done presentations in Milan, Paris. I was invited to, just last year, invited to Geneva for a European lung cancer patient meeting, which is still on-going but [coughs] there's, there’s involvement issues there about finance – how, how do you finance these things? [Coughs] Two years ago I attended the American Association for Cancer Research annual conference in Orlando and presented a, a poster there describing consumer involvement in cancer research in the United Kingdom. And we had quite a lot of interest shown in that because it was a, [coughs] a kind of different area than what they were looking at in America. They didn't, we're kind of unique in the United Kingdom having the, the sort of consumer liaison group involvement in cancer research and there doesn't seem to be the same, not that I'm aware of, in, in other countries and in Europe and in the US. And they were quite interested in, in the, the way that it was organised and co-ordinated which it didn't seem to be all the other advocates, as they called us over there, were representing their own particular group and when it got to research there didn't seem to be this co-ordinated movement of involvement of, of consumers in the production of the trial proposals and study proposals you know. So yeah part of it being, I mean I've had invites to go to San Diego to the, to the, also to the International Lung Cancer Conference in Australia but, you know, it's getting financed to do these things you know, which is, is very difficult but we'll keep trying [laughs].
 
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The research world doesn’t always know how to treat user-researchers and whether they should reveal their condition. It can sometimes feel like you are a ‘second class citizen’.

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Age at interview: 43
Sex: Female
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At one point I was asked by one of the gatekeepers [for her PhD study] not to talk to the participants during observations. And I said, "Oh I wasn’t doing it," and she said, "But you did at the, in the break." And I thought that’s interesting because we were actually just chatting. We started off chatting about, you know the weather whatever and, because [our condition] is affected by everything and it effects everything, we segued into [talking about the condition].
 
Now I know that’s because that’s the way, that’s the nature of the disease and it would have been completely weird of me to say, "I'm sorry, now this is my research topic," because [the disease] is not my research topic. My research topic is life with [the disease].
 
….There's all kinds of other obstacles which you wouldn’t know if you weren't a user researcher like, when I had to get R&D in ethics, I had to disclose my condition because for some reason, I don’t really understand to this day why, not because of reflexivity or because of it being a good thing, but because they wanted to make sure I was healthy because I was going to be on hospital premises. And then I said, "No I'm not healthy, this is why." And so they delayed my ethics and R&D; they didn’t delay my ethics, it was the R&D people actually because it was the hospital thing. They delayed the R&D and so I had to chase them and said, "Can you explain why this hasn’t happened." And they said, "Oh I don’t know, what have you; have you put anything; what have you put on the form?" And I thought to myself, 'I know damn well why you’ve delayed this,' and I said, "I put on the form my condition," and they said, "Oh that'll be why, yes." And I just, and in the end the person on the other end of the phone who wasn’t a clinician, wasn’t an expert in my condition, was an admin person, asked me questions about it which were irrelevant and meaningless and then said, "OK that’s fine," and signed it off.
 
Now that physically delayed my research, it really mightily annoyed me. It made me feel very small and crap and a second class citizen and, above all it was utterly needless. It wasn’t benefiting anybody…
 
Certainly the questions they asked were not relevant, they weren't useful.  They could not have made a decision based on my answers or whether I should have been in the hospital or not; they couldn’t have done from my answers. Plus how did they know I wasn’t lying. Plus they weren't a specialist and they weren't even a clinician – they did, had no knowledge of the condition at all apart from probably what they read in the Daily Mail. You know so what is the point of that? So there's that kind of stuff.
 
There's stuff like when I co-authored a paper and I was told to put my condition under conflicts of interest, which again makes me feel like a second class citizen and it makes you feel like, 'Hang on a minute, why are you doing PPI again because you if you think this is a bad thing, you think my condition is making this research worse, then why are you asking me at all and if you don’t think that then what – you're just not thinking critically.' 
 
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Helena feels that being a person who wears different hats as both a researcher and an expert patient gives her some power and influence but can also be very uncomfortable and challenging.

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Age at interview: 43
Sex: Female
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I have had experience where I have been asked to co-author articles, at least in part because of my ‘patient’ hat, but I also know that I wouldn’t know these researchers and wouldn’t be able to talk their language if I hadn’t gone and done my PhD. I did a PhD where I used my own disease experience to inform the design and data collection, so it wasn’t an ordinary sort of PhD. If I’d done an ordinary one, I would have been a normal researcher and I probably wouldn’t have been asked to co-author the things I’ve been asked. So it’s only because I’m wearing two hats that I’ve got these gigs co-authoring. I’ve got researcher value, and patient value at the same time. That can feel quite powerful. But it can also be really uncomfortable. If you want to use influence to change something, which hat do you pull out? I have sat in meetings where people have used kind of academic games to slightly intimidate or shuffle for power. For example they’ll name drop Prof So and So or they’ll be ever so careful to make sure you have a cup of tea but then talk jargon over your head. And I sit there and know that – because I now know lots of quite important academics – I can probably trump their mention of Professor So-and-So with a mention of Prof So-and-So AND his colleague, AND the editor who rejected their last paper. Or I can pull out academic jargon and mix it up with, say, disability rights jargon which they won’t be aware of, and mess with their heads. Or I can cut through all their games with something unanswerable, like, “well I live with this every day and I can’t go home at the end of the research and forget about it, and what’s important to me is....” I can also offer knowledge that they just don’t have, because the only things they know about my long term condition are the things they’ve learnt in textbooks, which cover about ten per cent of the things you actually need to know to live with it. So I can answer their practical questions in a way that is genuinely useful to them.
 
….But sometimes it feels really hard to have to keep thinking – which hat is going to help? Will my patient hat piss this person off? Is my patient status actually relevant here, or shall I just present as a post-doctoral researcher? Do I keep being “out” about being a patient AND a user-researcher? If someone knows I have this incurable condition, that knowledge gives them power over me, too. They will be making decisions about my competency as a non-healthy person. There are times when I feel huge relief in being asked to use other skills than my disease related ones, even though I’m proud of the way I manage my condition and the research work I’ve done on it. Patients are getting more power but it does cost us something to keep offering up our disease experience in return. 


Last reviewed July 2017.
Last updated March 2016

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