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Patient and public involvement in research

Skills and background for involvement

People who get involved in health research can come from all sorts of backgrounds and bring various skills and experience. Although they are often motivated by their own illness or caring for a family member, people with no particular illness experience can also be involved. Having first-hand experience of a particular condition can give researchers valuable insight into what it’s like to be a patient or a carer. But just bringing a general patient or carer perspective can also be valuable.

Catherine and Kath argued that it was possible to relate your own experience to that of people with other conditions, and sometimes it might be easier to get involved in a topic you did not feel so emotional about. Helena felt it was important for researchers to be clear why they wanted someone; she would not be able, for example to comment much on specific conditions other than her own, but she would bring general understanding of having a long term condition. Very recent or current experience can be important for some studies but several people made the point that it was important to feel strong enough (physically, mentally and emotionally) when you got involved.
 

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.
 

Part of Catherine’s early training for involvement was about learning to take a wider view beyond your own experience.

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Age at interview: 51
Sex: Female
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And what about the training that, the induction that you talked about, what did that involve?

The first half of the day was explained to us what would be required of us.

And basically what is required is to be you, because they want feedback and what it's like to be a parent and, if you had been asked to take part in research when your parent had been, your child had been ill, you put yourself into that position when you think about what was going on. So they talked about various aspects of research, for example, taking blood. When you take blood from a child it could be painful, when you take blood from a baby, a baby has a limited amount of blood, so taking blood from babies they have to take much smaller amounts. So they talked to us about the ethics of procedures that were required so that you were able to think outside the box and not just about your own child's illness and then you're not too focused. So instead of me only thinking about what it was like being the mum of a child who was sick, age seven, in hospital for three weeks, I could perhaps extrapolate outwards and think about what it would have been like to be the mum of a child in the intensive care unit with a neonate, or a child who'd had an accident and then ended up in hospital for example.

So that, the training tried to broaden our ideas of what was required.

It is about not involving too much passion in the process.

Because it isn't about only delivering your case to the table otherwise it sounds like you're the one person beating the drum for just your one condition or the one thing that you're worried about.

Where what you're actually required to do is to be able to sit with a group of up to maybe eight or ten people who are experts in their field and to contribute rationally, and I believe if you want to influence them it's best to be able to be rational and objective when commenting.
 

Kath found it upsetting when things were too close to her own experience. It’s possible to imagine yourself in others’ shoes and still bring a useful lay perspective.

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Age at interview: 55
Sex: Female
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But I found that even looking at the paperwork when I did the steering group, and I found that because that was about very close to my son’s experience, and I just found that too distressing even doing that, so I stepped away from it completely for about three years until I felt a bit stronger and a bit more, had a bit more perspective on it and then I did the reviewing. But yes, there were things in there that still could push the buttons. You know, things around bereavement of parents particularly still, and things around palliative care, still, still could quite upset me. But as I say that’s something that I had to, I had to decide that I was willing to, willing to do that.

I suppose researchers tend to assume that they need people who’ve got direct experience of that thing, which..?

I think it depends on the roles. If what you’re actually wanting people to do is, is to talk about something that is directly relevant to that condition, then having that condition obviously does help. If you’re wanting somebody to say about how participants with a particular condition might cope in your study, then you might need people with that condition to do that. But I think in other roles, people who have a bit of imagination so they can put themselves in other people’s shoes, and experience in other fields can be very useful in looking at it in different ways. Yeah.

Can that overcome some of the hobby horse problems do you think?

I mean I think that’s, yeah, it can do. But you sometimes, I know of, I know of some professional participants who do have an agenda that they take wherever they can get heard. That can be a problem. But… mostly, if people have a very clear idea of what would be really useful for them to do, they will cooperate with that and do it. I think the danger of the hobby horse riding is most apparent where there is not a clear guide to what people, what is wanted from people. And, and what they can usefully contribute, and then they tend to fall back on what they always say.
 
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It’s important to be clear what expertise someone is bringing to the table and whether direct experience of a particular condition is needed. The same is true about what expertise each researcher brings.

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Age at interview: 43
Sex: Female
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So if you use healthcare services and the question is about people who occasionally use healthcare services then you're appropriate, yes course you are. But I don’t want somebody who – I don’t want, personally, my condition is not epilepsy. There's no point in me being your patient representative if you're doing some research on epilepsy – I know nothing about epilepsy. So I'm not a patient as far as that goes and if I'm a researcher researching – about the only thing I would bring that a completely healthy person won't bring is, I do know what it's like to be judged by doctors and I do know what it's like to be continually going into the system. I do know what it's like to be continually managing a condition and continually on medication and continually relying on somebody signing [prescriptions]. Those things are useful and valuable and if you're capable of being reflective about what it is that you share with the group that you're researching then great, that’s great. If you don’t, but yeah don’t think about what the category is; think about what you're, the expertise that you're bringing to the table. In the same way there's no point in me saying, "Oh I'm doing a research project, I'd better have some advice off a researcher," when I actually want someone who's got stats expertise. I need to ask someone with stats expertise.
 

Anthony feels general members of the public bring a valuable different view.

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Age at interview: 77
Sex: Male
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The skills that a PPI representative has to have is to bring their own experience to whatever the project is and it needn't be anything which is technical, clinical, academic, it can be just their breadth of experience of life, because with that background they will have understandings and insights into issues that can be brought to bear even on something which is clinically very sophisticated. And it can be something simple, the obvious example that can be inhibiting for anybody – views on having blood taken. Will it hurt to have a needle put in your arm? How much blood are you taking? If you put it in millilitres it needn't necessarily mean anything to anybody. If you describe it in teaspoonful's that can raise a question [laughs] – "What do you mean your teaspoon, you're taking a teaspoon." 

But it can be things which they've had experience of in, in their lives that may be about trauma, inhibitions; it may be about experience of relatives, you know, "My auntie died of this or had that and she needed this, we didn't know whether we should do this, we couldn't understand what the doctor was saying or what the nurse was saying." 

And I think that's, that's one of the main contributions that lay people can make, "What does that mean? What does that mean for me? What does that mean for my friends? What will it mean for the future? Will it make me better? Will it make my auntie better?" So it's the questions isn't it that anybody can bring – why, what, how, when, what if, will it, how soon will it – and sometimes clinical researchers may not, but usually they have, may not have thought of the issues with that simplicity so I'm, I suppose making a case for public and patient involvement to make research as simple as possible in how to understand it, what it's going to achieve and how you tell the public about it.
Some people had working skills they thought were useful (for example committee work, chairing meetings, public speaking, reviewing documents, using computers) – though people also talked about acquiring these skills as a result of involvement. Some had worked in healthcare or in research of different kinds, a background which helped them understand some of the complicated language and organisational issues they faced. For Charles, the intellectual contact after retiring from a career as a research scientist was one of the main attractions and it felt like a good use of his skills. At the same time, they and others wanted to stress that a specific background was not essential. There are advantages to being able to take a complete ‘outsider’ perspective, to challenge researchers’ assumptions about what is understandable or acceptable. Rosie wondered how far people from a research background would be able to be critical and think from a patient’s perspective.
 

Anyone should be able to get involved, in different ways. Being able to listen and ask questions is the main thing.

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Age at interview: 60
Sex: Male
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I had some good advice recently, never forget that you’ve got one mouth and two ears. I quite like that. And I think the ears are very important and I think, I hope that one of the things I have done is listen carefully to the debates and the discussions and then contributed as I’ve seen, as has been important and necessary. 

Whether I’ve got a special skill set I’m not sure, but the, because there are greater and greater numbers of lay people getting involved in the, in the research world, the team of skills that we, that we bring to the table is, is becoming more comprehensive and we’re able to contribute, you know, you can find the right person to contribute to a particular type of meeting. And, well, the selection of individuals for different types of involvement I think is important. So as a patient or a carer, my belief is that everybody’s got something to contribute, but how you get these different people, how you make their voices heard, is, is the way that there’s sort of pyramid involvement has developed.
 

Charles brings his skills as a retired research scientist – but you don’t have to be a specialist. Time, interest and persistence are more important.

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Age at interview: 71
Sex: Male
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Undoubtedly the, my own technical background helps that enormously, but if I didn't have that technical background and I simply had a curiosity then, in the days of the internet and, you know, search engines and masses and masses of information, I'm sure I can dig to the bottom of it. But I, my technical background helps. It helps particularly not just in the assessment of what is being written, but in looking for structures and the iron logic of the thread of the research and the implementation. You know I've spent years doing that and so that it's a tool that I can bring to the problem.

So what skills do PPI reps need to be involved?

They certainly need, they need time and an interest in the provision of medical services. I think there's a range of skills and you would probably find a range of PPI reps actually deploying their own individual skills to make their own individual kind of contribution. 

I mean if you look at the Mid-Staffs report*, you know, that, one of the main thrusts in the whole of the Mid-Staffs affair has been the woman, I think her name was Bailey who, whose mother died in the hospital and she has been, all through, has been a very, very stringent critic of that hospital care, and I guess when she started out she possibly didn't have any specialist knowledge. So what she has, what she has brought to the party if you like, is her own painful experience of that care and that has been her contribution along with a dogged persistence to see those, you know, shortcomings remedied. And in a way, you know, your strongest critic is your best friend, the one you should listen to hardest [laughs].

* Charles is referring to the Francis Inquiry into poor quality care at Mid Staffordshire NHS Foundation Trust, and the campaign mounted by relatives of patients who had died. 
 

Catherine’s microbiology degree helps her to understand the lingo used by researchers, but you don’t have to get involved in projects you don’t understand.

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Age at interview: 51
Sex: Female
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What about the language that all these things are written in, is it something that you find accessible or?

I don't think it is for a lot of people and in fact at the end of the last meeting I attended in Southampton I was chatting over the tea break or whatever. I stay long enough to mingle and sometimes I will single out a speaker who I was interested in their talk and go and say hello, and I had a lady come up to me and she goes, "Ooh my goodness," she said , "I don't know how you cope." And I said, "Oh it's alright I've got a microbiology degree," and she goes, "Oh thank goodness for that, I felt so sorry for you, the last four hours of all of that stuff, it would have been very boring otherwise."

So it does help, I've always had an interest in medicine, things medical. I've unfortunately had a lot of exposure to illness either myself or in my family which means that when they've got ill I've researched those diseases in great detail and I have no problem with the lingo.

But I'm sure that other people would struggle with it. Perhaps other groups though, and other types of work, it's not as technical. I am in a group where they're looking at antibiotics and you're always measuring the efficacy of those and I actually did a final year study at university, that might have been one of the reasons that got me extra points, was that I need a microbiology degree, but in my final year we all had to do a project as anyone does when they do a degree and I chose to do a medical microbiology degree at the London hospital and I looked at the technical term is a serum and minor gylcose side levels for an antibiotic to see whether it reached ototoxic and nephrotoxic levels in people. So add the background to that, basically I was looking at whether the blood levels of the antibiotics were getting so high that they were damaging somebody's hearing or kidneys and, so I'm very lucky that having got that background, made it very appropriate because this group does spend a lot of time looking at, you know measures which have absolute values so you're looking at things like that.

Whereas perhaps if you're looking at cystic fibrosis they may be talking far more about treatments of that which is a, might be a physical thing – cystic fibrosis is treated by physiotherapy for example, so there may be far less technical language. But when parents or lay people become representatives on a condition, the thing is the medical profession know that we're experts in our own conditions. So you may not have the absolute scientific jargon but you might have read around your subject as much as they have or more than they have in an attempt to find a solution. And you will have stepped outside the traditional box that they're operating in so you can bring new insights. So not having the exact lingo I don't think is a problem because you're normally only invited to join these things if you've got personal experience.
 

What’s needed is someone who can be a ‘true critical friend’.

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Age at interview: 54
Sex: Male
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What do you think makes a good PPI rep?

Somebody that is very self-critical, that is honest. They have to have a certain level of passion but they've got to keep it under rein. They've got to show respect as well as have respect from the groups that they're working with, if be they be clinicians or academics or politicians and you know they have to engage in a true way and I think ultimately be a critical friend. I think the role of a true critical friend is really powerful because if you have that respect in place, you can criticise but you can do it in such a way if you're informed that then people take notice of you. You know I think a good PPI rep ensures that what they say is tempered, informed and goes down in the minutes.
 

Sometimes researchers who have a particular condition act as lay advisers. They have a legitimate perspective, but Rosie wonders if ‘insiders’ can be critical enough.

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Age at interview: 55
Sex: Female
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So, you know, I mean I think everyone's got a point of view and a perspective and actually, you know, I suppose one of the challenges is I guess as I become more professional because in some projects for example, you know, I know some projects where they would say they've got public involvement but the public involvement are professionals who happen to have those health conditions. You know and, you know, so there's a question about how, you know, how far in whose camp you can be and what it means to bring a different perspective because actually if, you know, if you're a professional researcher but you've also got diabetes you've got perfectly legitimate experience of diabetes that any other patient has, and you might be a lot easier to involve but actually it might be, it could potentially be more difficult if, you know, if you're a researcher yourself when you are involved, it might be more confusing about what you're role actually is – are you there as a researcher or are you there as person who has diabetes or both. You know so there are, you can't, I don't think you can ever say that that person's experience of their health condition is not legitimate or isn't input, you know, like there is not something that can be offered from that. But you know, but, you know I think we would, you'd have to start questioning involvement if it was always people who were effectively insiders, you know, we'd probably want to criticise it so there is something I think about having a different, you know, not being in the same, having, bringing the same perspective because that's the… and I think the point is to bring a different perspective, a different way of thinking. 
As Dave A and Charles suggest, there is a good case for having several people involved, rather than just relying on one person on a committee, so they can complement each other’s strengths. Dave X said, ‘Whatever skills you have, bring them.’ Rather than picking only people who already have work-related skills, research organisations should offer training and consider ways to involve people that don’t rely on expecting everyone to be good at committee work or reviewing long documents, even if this is tempting for researchers. (See also ‘Representing a range of views and experiences: being representative’).
 

People in the group Margaret works with are from various backgrounds and age groups who contribute in different ways.

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Age at interview: 63
Sex: Female
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Well there are people who have retired, sometimes from teaching, we're people who are in their twenties. One girl in particular whose mother died with breast cancer and who felt that she wanted to get involved in some way influencing it. We're people who range from people in their twenties right through to people in their seventies. We're people who have worked in a shop all their lives and bring great communication skills with people, we're people who have been scientists and been involved in chemistry and different things like that, who bring different skills. 

Whatever anyone's background is, it's important because they just bring who they are, and people are involved at all sorts of different levels. Not everybody wants to be involved on a trial management group, not everybody wants to sit on an executive, but all of them want to be involved at reviewing what information the patient gets. 
 

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.

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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.
 
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If you only ask people who already understand research, you won’t get such useful information. You need views from people who wouldn’t want to take part too.

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Age at interview: 67
Sex: Female
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To some extent people could only represent their, what their own situation has been. So rather than taking the nice person who's going to understand the terms, and who can actually kind of go to the lessons and has time to do it and will, you know, will get their stuff back on time and knows how to use a computer, you need to use all the other people as well - all the other people, the non-contacts who don't kind of, who refuse research, don't turn up for things – you need them there, you know, not people like me really. You know, I can be indignant on their behalf but it’d be much more useful if they would say, "No, we're going to pay you ten pounds to tell us why you don't want to do this" [laughs]. You know it would be far more, far more useful.

For example there's one piece of research I was looking at where they were looking at dental health in teenagers and about, you know, the difficulty of getting children to come to the dentist. And they were going to research this by asking people to come back every six weeks. I thought, 'mm' - which struck me as very weird because if you're going to find anybody who did come back every six weeks they weren't going to be the person with the dental health problem, as far as I could see, they're going to be somebody who did what you told them. So all you need to say to them is, "Clean your teeth frequently," and they'd be absolutely fine. So it's that sort of thing, and you look at it and you think, 'Well I must have missed something here, you know, are they going to put these people in chains and drag them back every six weeks?' 
 

It’s important to be professional, read up on research and be committed to involvement.

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Age at interview: 67
Sex: Male
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First of all you must be professional in your dealings with people. There's no room for the lone wolf, the, somebody with an agenda, a grudge. You've got to be professional. You've got to be able to work as a member of a team. You've got to be prepared to read around your research subject and it's got to be an on-going learning experience; you can't expect just to drift along and be spoon fed everything. You need a certain amount of listening skills. You need to know how committees and groups work. What, what, that you go through the Chair, that you don't interrupt people, that you use language which is moderate and professional at all times. You need to be committed – if you commit yourself to something you need to carry it through, you know, apart from obvious, you need to carry it through. You can't just bottle out half way through because you've lost interest. I'm sure there's lots more. I think you have to be, have a certain degree of altruism, yeah that's about it I would think. I'm sure there's lots more.

When you said, the first one you said was professional – what do you mean by you have to be professional?

You have to relate to people in a team as professionals and the certain rules you have. You don't go talking behind people's backs; there's certain confidentiality there. When you're in a meeting you obey the rules of the meeting. You don't pursue your own agenda and disrupt the meeting. It's pretty obvious really. You work as part of a team, that's what professionalism is about. I don't curse people behind their backs, I don't spread gossip about the team leader, I don't undermine the project for my own dubious reasons. I act in a professional way in which I'd expect people to act towards me.
People had different views on what skills, knowledge and experience were necessary for involvement. Marney felt it was important to select people carefully on the basis of their skills and motivation, asking them ‘What transferable skills are you bringing to this? What's your interest in it? Why have you felt motivated to approach this? What other relevant stuff have you done?’ She felt computer literacy was an essential skill, for example. Jennifer argued ‘definitely you’ve got to have some sort of scientific knowledge’. But Beryl said being asked for a CV had put her off applying for one position, and Catherine worried that making people submit a formal application might make it harder for some people to get selected; they might not be able to show many formal skills if they had been unable to work because of illness or caring. But that experience and a ‘normal common sense approach’ was precisely what they could bring to the table.  (See also ‘Path to involvement– how did people find out about it?’ and ‘Raising awareness of opportunities for involvement and finding new volunteers’). Maxine suggested there are ways for people to pick up a bit of useful scientific knowledge, and training can help.
 

Maxine recommends the NHS website ‘Behind the Headlines’ as an easy way for people to learn more about science.

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Age at interview: 72
Sex: Female
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Well I think it's important not to believe everything you read at, you know, they not take it at face value. I think also that site I mentioned earlier, the Behind the Headlines is good, though not everything gets on it, obviously they have to select the things they look at. But you just have to, we have the internet now and it's for good and evil. I mean you can, you can actually be able to follow or get hold of information about things more easily than before, but I just think you need to ask a lot of questions really and not just think this is it, this miracle cure, I read it in the Daily Mail or whatever, you know, because not necessarily the case at all [laughs]. So mm I just think I'll try and get somebody who's authoritative or go to a good source of information and not just rely on the media entirely.

Go back to the main source or find out where the information came from and try and read it yourself and get somebody to explain it if they can, a doctor or somebody knowledgeable.
 

Maggie went on a course in the US on cancer research and is now running a similar course in the UK. Learning from scientists has been amazing.

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Age at interview: 71
Sex: Female
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I then was able to go to the States to undertake what's called Project Lead Training, which the course was actually free but I had to find funding for travel and a hotel. And we had, I belonged to a local research group that I joined around the same time. It was a new group that had been set up, I think there was Macmillan funding for the original three centres that set it up where there was a mix of, our group was a mix of professionals and people who'd been treated for cancer, not just breast but generic cancer. And the person who set our group up was [name], the research manager, she was able to find me funding for my travel costs to do that course. And it was the most amazing course, which, it goes into the science, the cell biology, research methodology. And you're not a scientist in a week, but it does give you a much, much better idea of understanding the gist of what the scientists are trying to achieve. And it also was extremely exciting when you understand more about how cells work and what switches this on and switches that off. And so I did that training and then was able to enable other people to go off and do this training. But we decided that we needed to be able to do a similar training here in the UK and we shouldn't have to go to the States. We've got just as good, if not better, scientists here, and we should be able to do this here. And we also wanted greater freedom of dialogue with the scientists to be able to put a direct patient perspective into the research, and to be available to them for comment on protocols and new potential trials and that sort of thing. 

So we set up our new group which is Independent Cancer Patient Voice, and the aim was to provide education, mentoring and support for people who had been treated for cancer and want to get more involved in the research, adding a patient perspective to that research. And we've been running workshops over one and two days. But we go to the academic centres around the UK, so that way we get a better geographic mix, but we also enable, it enables us to get a venue without charge, but we also get the teaching and it's, the scientists at these centres have been extremely enthusiastic and very supportive.
 

Derek had no scientific knowledge at all. Involvement needs ordinary people.

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Age at interview: 62
Sex: Male
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I came to be involved in research, and it is not, I assure anybody, it was neither a knowledge of science, nor knowledge of research, and I'm sure my science teachers are all turning in their graves at the idea that I, because I knew nothing and was very, I think my last mark for O Levels was seventeen per cent. So I don't think I even sat the exams. So I was not somebody who'd roll up. But, I was at a meeting where they asked, we were asked, or told that we had all this research that had built up and how do we tell patients about it. In my naivety, or some might say stupidity, I asked the question, "Well, why are you waiting now? Why didn't you involve people earlier on? Because to tell people about things after it's been done seems a bit like sort of, you know, bolting the stable door after the horse has bolted?" I then was tapped on the shoulder and somebody says, "Could I introduce you to somebody?" And that meant I went along to – I'll cut this story short – I was invited along to a group who were talking about involving some patients in a committee they had in cancer research. 

When I began, I began thinking that they wanted the patient voice at the table. They'd had some involvement in some research, but what I'd noticed they'd got when I looked or met some of the people, they were people who were , how can I say this? They were of their ilk. They wore similar hats or clothes. And by that I mean, it was a cancer patient, but they were a doctor, right? They were a cancer patient, but they, but they'd worked in research in the food industry. Now, there is nothing wrong with those voices, they are great because they understand the research, they understand, they're great. But there isn't a rawness to it and it made me realise. 
 

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.
Having a scientific background did not necessarily make it much easier. Helen got involved through being in a clinical trial for multiple sclerosis, but despite her science degree didn’t understand all of the patient information. She explained, ‘I have a background in biology, so I knew some of the words, and I knew how some of these bits and pieces worked. But even then, I mean I'm discovering huge whistling tundras of complete misunderstanding.’ That brought home to her how vital it was to have a non-medical perspective on information sheets for research participants.

Getting involved in actually doing research may be easier for people who have had some previous related experience. Maxine had experience as a librarian which helped her doing a ‘systematic review’* of all the research evidence on vitiligo in academic journals. Rosie had some previous experience in interviewing people but was given extra training. She felt that people with no previous background could be involved, if they got that extra training and support.
 

Involvement is about bridging the gap between researchers and patients. Some roles don’t require much training, but helping carry out research might.

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Age at interview: 55
Sex: Female
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It's something about the difference between, you know, understanding how your field and how research works and all of the things you take for granted and the gap that there is for people who don't understand all of that who come in and trying to help people bridge that gap. Now I think, I mean I've seen people who are really, really good at that, you know, they can explain quite complicated things without being patronising but in a way that's accessible; and at a level at which…because you don't have to understand all the nitty gritty but you have to get the hang of why they're doing it, the way they're doing it or whatever. So there's something about sort of understanding if you like where that there is such a gap between what they understand and how they think about, you know, they being professional researchers, where they're at and where the person coming in might be at. 

And of course the person coming in we can be very different so some people might be, have quite a lot of skills or, you know, have relevant knowledge and information and some people might not have any of that. So there's something about thinking about that gap and I think it depends, it also depends a lot on what the job is so when you're involved I think you can be doing hugely big range of different things and if, you know, so some of the ways that people are involved I don't think you do need much induction or training or, from the researchers because what they're asking you to do and how they ask you to do it comes more towards to you in your experience and it's about sharing that and engaging in that sort of conversation which most people don't need that much help to do. But if you're going to, if the health professionals are going to ask people to do more complex, you know, say come in to steering group meetings or research team meetings and participate in those, or to collect data or help with qualitative analysis, you can't see…usually do anything quantitative but those sorts of things, then you need different sorts of support and help to understand enough for that particular job. 
As people gain more experience and expertise, they may feel they start to lose the all-important lay perspective, as Helen describes. On the other hand Carolyn argued it was good to keep very experienced people involved too, as well as people with a fresh perspective. This is explored further in ‘Long term involvement and expertise’.
 

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. 
* A systematic review is a compilation of all the high quality research on a particular topic. It may include a ‘meta-analysis’, which involves collating the data from all the studies and conducting statistical analyses on them.

Last reviewed July 2017.
Last updated March 2016.

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