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Researchers' experiences of patient & public involvement

Messages for people who get involved in research

We asked researchers what messages they would have for people who are already involved or thinking about it.

The overwhelming message was thanks – gratitude for people’s time, their commitment and the value they bring to research. Researchers said they had felt inspired and impressed, and reminded about the real purpose and value of health research. Ceri’s comment was typical: “They put a huge amount of energy in and I can think of some people who really struggle health-wise and their commitment impresses me enormously. And I’m grateful for that, I don’t want to take it for granted, I do want to thank them.” Carl, Alice and Rebecca all pointed to the real difference people can make to the quality of research.

 

Good patient involvement has given Carl and the funder confidence that his trial will work and not be a waste of money.

Good patient involvement has given Carl and the funder confidence that his trial will work and not be a waste of money.

Age at interview: 46
Sex: Male
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Yeah, the key benefits I think is actually, is one of the things is, the project should look better. You know you should be able to say, "We've shaped this project with patients in mind." We're doing one at the moment which, you know we've shown it's feasible, because in our pilot and with our patients, we've worked to make the pilot feasible and pragmatic. It worked. And when we go to the funder for the bigger trial, we're going, "I thought we'd use all this; and actually we used all this to inform the design." And it's really nice when they come back and say, "Well actually it's exemplary what you’ve done in the PPI section." And we think, 'Yeah actually we feel much more confident we can use the NHS's or the NIHR's money in a cost effective way to do a trial that’s already shown to be feasible.' What we want to show is should we implement it now. And we'll continue to use the same group throughout the whole trial, and using that group then to think also if you're going through, 'Well if this is going to be effective how do we implement, where do we go?' is another benefit. So, yeah there are benefits in many areas.
 

Alice wants people to know their input really makes a difference to research. Working alongside patients reminds her that the point of doing research is to help people.

Alice wants people to know their input really makes a difference to research. Working alongside patients reminds her that the point of doing research is to help people.

Age at interview: 26
Sex: Female
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I suppose I would like to tell them that their input is really appreciated – I can't speak for all researchers – only for myself, but the people I've worked with I really appreciate that they come from [place names], all over the place, to help me with my work, you know, for their own reasons, they all have different reasons. I don’t know I'd want them to know that it's appreciated; that it actually is making a difference in my work and what I chose to do. And I'm just grateful really that they, that they even get involved, it's really, that they make, they're the most fun part of the job, you know, it's most, the best part is, was always having meetings with people where they could come in and, they kind of – this might sound a bit patronising for a message – but, you know, they have the human element, it made me realise what the point is of actually doing all the research anyway. You know, why we're even doing this, we've got to try and help these people, not these people but everyone in this community. I think that’s about it.
 

Rebecca feels researchers don’t say thank you often enough. Researchers are not perfect and they make mistakes, but with patients’ help they can make research better.

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Rebecca feels researchers don’t say thank you often enough. Researchers are not perfect and they make mistakes, but with patients’ help they can make research better.

Age at interview: 31
Sex: Female
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And have you any messages for the people who do PPI – the partners?

Thank you. I think that’s, I don’t think we say thank you enough, so thank you. They give up so much time, so much effort. We're not perfect. We don’t know everything. We will make, we researchers make mistakes. We'll learn - tell us, we're people. But thank you, I think that’s the thing, that it does make it better, that your involvement does make it better, it does help and you know we're all trying. If you want to improve research, if we want to improve health, healthcare, then actually research can do that, can help feed into that. It's not going to do it on its own and that’s the point, it can't do it on its own. So get involved because then we can all work together to make it, help improve healthcare.
For those thinking about involvement, researchers acknowledged that it won’t appeal to everyone, and sometimes it can be an uncomfortable or challenging role. But equally they wanted to encourage people to give it a go, and described some of the benefits they thought people got from involvement. These included: knowing you are doing something valuable and finding this rewarding; learning new skills; enjoyment; aiding your own recovery; and gaining a supportive network of other patients or carers.
 

Gail has been inspired by the young people who have been involved in her research. Her message to them is that they too can feel inspired and confident, and make a difference.

Gail has been inspired by the young people who have been involved in her research. Her message to them is that they too can feel inspired and confident, and make a difference.

Age at interview: 42
Sex: Female
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What would my message be to young people that are thinking about getting involved? 

I think I’ve been inspired as a researcher by the young people I’ve worked with over the last couple of years, their enthusiasm and the ideas that they brought to the research and they’ve certainly helped me to develop as a researcher, so I am very grateful for that. And so if other young people can go out there and do the same for some other stick in the mud researchers kind of maybe like I was, then that would be great. I’ve also seen that the young people I’ve worked with have felt inspired and confident and important. That was a word that was used just recently to one of our young people that attended the external advisory board to describe, you know, what the group had been up to over the past year. And she said, “I feel really important!” And I said, “Well you are and your message is very important”. So if you get involved then from working with the young people I’ve worked with it seems that there’s some stuff you can get out of it and you can make a difference. And I think that’s the important thing that you, you need to ask how your involvement is going to make a difference because ultimately that's what you’re there for.
 

People can expect involvement to be uncomfortable sometimes, but also rewarding and a way to meet others with similar health experiences.

People can expect involvement to be uncomfortable sometimes, but also rewarding and a way to meet others with similar health experiences.

Age at interview: 36
Sex: Male
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Do you have any messages for members of the public who do PPI?

Yeah be insistent you know, be uncomfortable. I think, I still like that quote about, you know, it being difficult. But you know if, and but also be open and honest about what you expect and what you want to get; or what your motivation is to come into it, you know. And but it's well worth it you know to, I think it's brilliant if people volunteer or even come in to say, you know, to do a to. I think never the motivation for people is to actually make money out of it. I think it should be reasonably reimbursed possibly, you know, with the decision of the panel because some people don’t want to get paid. But you know yeah, I think if they're open for it it's a great journey to engage, you know, and to do something if you are willing for that to be uncomfortable at times but it's going to be instructive one way or the other so I think it's a great learning. 

But also great personal, you know, you will walk away with a lot of personal, you know, even if it is the normalisation with a group of peers that have gone through similar experiences – I think that’s where something, some of the impacts that we recorded that are really crucial is just to have a peer group as kind of self-help aspect of that impact which is, you know, is super valid. You know, it's that people impact on people thing that I'm talking about. That should be part, you know, of the rationale of the researchers to allow that to happen because at the very least, I think that’s probably one of the common denominators why people go into these groups to share their experiences with other people and the benefit they get from it. So and then insist on that to be happening and informing the research, but insisting that it's about you as a member of the public more than the research and to take that into account and anything rather than, you know, being expected to then just be there to inform the research. It's yeah, but do it yes, it's well worth it [laughs].
 

It’s generous of people to volunteer to help research. Stuart hopes they find it enjoyable too.

It’s generous of people to volunteer to help research. Stuart hopes they find it enjoyable too.

Age at interview: 59
Sex: Male
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So what I’m saying to the people who are involved is I think we all recognise that this isn’t the centre of your lives and that actually this is a mark of real altruism that you’ve become involved. I hope that you find that if you do get involved that as well as giving something to society you actually may find that you enjoy it as well and there may be some real positive experiences for you. That’s what I hope will happen and that actually if this is a real partnership in which people are involved in the whole process it’s a very good fun thing to do. I really enjoy doing research and I think you guys will as well.
 

Involvement can be really rewarding. For Jo it helped her ‘learn how to be a person again’.

Involvement can be really rewarding. For Jo it helped her ‘learn how to be a person again’.

Age at interview: 50
Sex: Female
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Also give it a go. I think it can be, personally I found it really, really rewarding to go from complete low point where I’d really, really didn’t think I would ever be able to do anything again and through my involvement it was through actually being involved in various, you know, patient involvement groups that I actually kind of learnt how to work again really just to learn how to kind of be a person again if you like. So I think it can be hugely rewarding.
A few researchers suggested ways in which people who get involved could improve the process by insisting on greater clarity about what to expect; not being shy to ask questions or challenge; recognising that researchers are doing their best. Narinder wanted people to know that researchers can’t act on every suggestion but they still value the input.
 

Sarah A suggests people who get involved should remember most researchers really do care about patients. But if they come across tokenism they should challenge it.

Sarah A suggests people who get involved should remember most researchers really do care about patients. But if they come across tokenism they should challenge it.

Age at interview: 32
Sex: Female
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Mm I suppose I'd say I know we all look young but we probably are. I don’t know I guess I might say ease up on the, 'Aren't you researchers silly' narrative which I do hear and the, you know, this kind of attitude of, "Oh well they're very clever aren’t they but they don’t understand anything meaningful," and I think most people I know in research, almost without exception actually, care a great deal about it and have, you know, gone into it and stuck with it and put up with a lot of [laughs], a lot of difficulties because they think it matters and they really care about it and they want, they want to see things better for patients – they genuinely do, even if they don’t necessarily communicate that very well all the time. So on the one hand, I'd say yeah maybe be a bit more open minded about research in that sense, but then on the other hand I'd say, I'm now going to now flip that and say I've known of a lot of kind of PPI groups or PPI elements or projects that were very tokenistic and were really, I think, insulting to the PPI member and in that sense I would say find, if you can, groups, local groups that are doing PPI – people like [involvement group name], you know there's an awful lot of people in research, there's always people, and sort of get together with them and make the statement that that is unacceptable. 

You know don’t sort of collude with these researchers who are doing a tokenistic job by engaging with it tokenistically and they probably sound at crossed purposes on the one hand saying be nicer to researchers and on the other hand well saying give them hell. But actually I think, I think somewhere in the middle of that I think there is a balance of saying, "I'm here as a partner so that means I appreciate your expertise as a researcher, but also I'm not here to be taken for granted," I think that, I think would be, that’s a good way to approach it I think and I hope, and hope they feel comfortable doing it [laughs] you know.
 

Narinder thanks people for their involvement. Researchers can’t always respond to every comment but they are trying to do their best for patients and the best science.

Narinder thanks people for their involvement. Researchers can’t always respond to every comment but they are trying to do their best for patients and the best science.

Age at interview: 64
Sex: Male
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Well I think that I would just say that I would thank them for being involved and I think that their views are really important. And I think that obviously I can't speak for every researcher, but at the end of the day, we're trying to do our best for patients, trying to get to the truth in science; answer difficult questions and we're trying to do the best for treatments and that; and sometimes they’ll have to just accept sometimes our judgements on face value; we can't explain everything in great detail to them all. But the main thing is I would encourage them to get involved. I would thank them for their involvement and I would say just sometimes you may have to respect our judgement in complex issues where we can't explain everything.
 

David advises people who get involved not to be afraid to say what they think, but also think of it as team work and to see it from the researchers’ perspective too.

David advises people who get involved not to be afraid to say what they think, but also think of it as team work and to see it from the researchers’ perspective too.

Age at interview: 49
Sex: Male
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Now the people already involved in it know about it so that’s fine. But I would encourage them to continue and fine tune their PPI knowledge. It doesn’t stop just by doing a couple; I think you can learn as well as you go on. A few things – don’t be afraid. If you think what you’ve got to say is important get it out there. If you're scared about your vocabulary and your knowledge of the area, again don’t let it be an impedance to you, and hopefully the set up will allow that interpretation to go on. Now, if it's a good PPI group, that will occur, if it's bad you might have a bad experience. But I strongly advocate that you don’t hold back on those sorts of things. I would also say that just like the other side it's not a one way street, but sometimes if you think you need to look at it from somebody else's point of view and that can be difficult. It’s great to be empowered – but it's not the total power. This is a team approach, this is two sided. The clinicians, the scientists have to listen to the patient side of things just as much as the patients have to listen to the clinicians and the scientists side. And sometimes that can be forgotten a bit, I'll give you an example – everybody has five minutes to speak on the subject; the patient goes on for twenty and we all think it's OK because it's the patient. Probably not right, everybody has to be thinking about each other's position and look at it from their own point of view. I'm not sure I'd say much else.
 

Catherine encourages people who get involved not to be shy about saying if they don’t understand or don’t agree. Researchers really do value what they bring.

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Catherine encourages people who get involved not to be shy about saying if they don’t understand or don’t agree. Researchers really do value what they bring.

Age at interview: 29
Sex: Female
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Are there any messages you would like to give to PPI people? 

Yeah, I mean I want to give a strong positive message that they can make it a difference and that we do value their contribution more than just a box-ticking thing. But then when I say we, I'm trying to think who “we” is [laughs]. I guess the PPI, the pro-PPI people of us. But yeah, I guess to not be shy, and be involved, and say when they don’t understand things. That’s what I'm going to try and make sure, that the people I meet know that they should not feel shy in saying if they don’t understand what's going on or don’t agree with something. Yeah, because we want to know what they think even if it's the opposite, even if it's the opposite of what we are saying.

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