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Patient and public involvement in research

Messages to other people who are involved or are thinking about it

Generally people said they would encourage others to get involved in research, especially if this was something they were already thinking about or thought they might be interested in. Peter said, ‘Just do it, just get involved!’ and he wasn’t the only one. He and others explained that there are a lot of personal benefits to involvement – it’s interesting, fun, enjoyable, you meet great people and, as Janice said, ‘It’s good for your thought processes’. Involvement was also seen as a way of helping others – improved health research leads to better treatment and care for other people, including your family members, and also yourself.
 

Margaret loves the science and admires the researchers she meets.

Margaret loves the science and admires the researchers she meets.

Age at interview: 63
Sex: Female
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Oh it's been good, I enjoy it. I see much more and I get much more back than I ever give. The number of people that I've met, other PPI reps throughout the UK is just, is great and gleaning their experience, I mean that's, you know, I pick people's brains and they're always very willing to let them be picked and that the research that's happening, that has just blown my mind.

What has really blown my mind too is doing lab tours and seeing the months and years that those scientists put in at looking at a little thing that size of cells, looking for something, at something and perhaps after years their question isn't answered, it's shown not to be an answer. And I just admire their passion for what they're doing. So I admire, I've come to admire the researchers because I'm… it's more than just like a job, I've come to see, to the majority of them, they are, they're passionate about what they do and why they do it, and I would just like to support them in that and that's what I would say about PPI. I enjoy it; I mean why would you be doing something you didn't enjoy? Do you know what I mean? [Laughs].  

And so yeah I enjoy it immensely, I would say to anybody to, to think about getting involved in research, it's not frightening, it's a bit off-putting at the beginning because you're hearing all the acronyms and all the terminology and it's like a different, you know, a different language but eventually you come to understand enough of the language to be able to understand what's going on, and I would say whoever you are, you've something to give in PPI because you are unique as a person and you bring your skills, your life skills and all our life skills are different and that's why it's important to have a whole range of people involved in PPI so that benefits research and benefits people at the other end of the scale. So yeah don't ask me that question because I'm very passionate about it [laughs], I'm surprised how passionate I am about it.

Really?

If somebody had said to me three years ago, you know, when I said oh yes to this whatever this PPI was I would have, I…yes, totally, totally thrown myself even at the passion and the understanding that has come about, and you might think that's very strange for somebody who’s worked in the NHS all these years, but I would not have had the, or a new research happen, but not the understanding of the importance the benefit, how nothing moves forward without it or nothing will change without it. Yeah so I would invite everybody – put your toe in and if you feel you want to put two toes in the water of research that's alright. If you want to put, immerse yourself in it, that's also OK but you'll find that people, there are PPI leads, there are researchers, there are other PPI people who are willing to share what, the knowledge that they've got already and that's a great support mechanism, and you do feel as though you're doing, let's be honest, you're doing something of value. You'd be wrong not to acknowledge that, that you get something back from doing that yeah.
 

Get involved – you’ve got nothing to lose and everything to gain.

Get involved – you’ve got nothing to lose and everything to gain.

Age at interview: 54
Sex: Male
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What would you say to someone who was thinking about getting involved in PPI?

I think you've got nothing to lose and everything to gain. You know I don't think you should go into PPI with an expectation that suddenly you're going to get better. But I think if you do get involved, you can be very surprised about how valuable you find you can be and that improves your self-esteem, it improves your level of confidence and that has a halo effect on other aspects of your life and I think it's a great way of…I've used it as a form of therapy and I wouldn't have believed it, I'd have balked at that suggestion; no but that's really what it's been. And I probably suffered from low self-esteem for years and years and years because I worked in this highly academic staffed institution and constantly delivered the most ridiculous tasks, outcomes because that's what I was programmed to do. And I've had my eyes opened. So anybody else wanting to improve now I'd just say, "Well you can, it's there for you to take. Try it.
 

Someone somewhere will benefit from what you do in your involvement.

Someone somewhere will benefit from what you do in your involvement.

Age at interview: 41
Sex: Female
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If you're thinking about doing it, do it. Don't hesitate – get stuck in. You won't regret it, just do one - do one and see how you feel afterwards. And if you're currently doing it, you may have moments when you think, 'This is tedious, this is boring, I don't understand what they've written here; there is no - no-one's going to want to know what I've thought; no-one's going to read my comments' - don't believe that. Somebody somewhere will benefit from what you are doing, and you will never know who it was, and you will never know where they were, how they were suffering, what was going on, or how far down the line it was. But, somebody somewhere will benefit from those little marks that you make on that information sheet or whatever else. It is a worthwhile thing to do.
Getting involved can seem intimidating and daunting, especially as the professionals’ use of jargon and acronyms can make it seem as if they’re speaking a different language. But Dave A and Andrew always felt welcomed by researchers and Catherine said, ‘Doctors need you to keep them in control. They're not all scary; they are interested in what you have to say.’ Helen said that people shouldn’t be put off if their first experience of involvement was difficult and encouraged them to keep going. 

It was also acknowledged that involvement isn’t right for everyone, so it’s good to think carefully about what you want to do and why, and research it before you start. Alan explained you can always drop out and others said you can get involved in your own time and at your own pace and choose what way you want to be involved. As Charles said, ‘It's not obligatory, you don't sign contracts, you don't have to do things that you don't want to do.’ You don’t have to be an expert to get involved – you’re bringing your experiences – but there is training available and organisations that support patient and public involvement, like INVOLVE.
 

Maxine advised people not to be put off involvement by thinking they don’t have the expertise to do it.

Maxine advised people not to be put off involvement by thinking they don’t have the expertise to do it.

Age at interview: 72
Sex: Female
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Oh do get involved, don't be put off by , by thinking you're not an expert or you're not a doctor or whatever because your experience is valuable and important because otherwise the agenda's being set entirely by the medicals and the scientifics. And really it's about what, what's good for patients in the end. They have to take that into account, it should be a really important part of decisions about research. 

So I think generally that people should be more, they should not accept just on face value what they get told because often there's a hidden agenda, maybe not even purpose, on purpose, but it is there through the media or people selling stuff, you know want to sell it, not interested in whether it's true what they say, the spin on everything. So to get to the real truth, you know, you need to get involved. And you find it rewarding actually. I found it amazing because you meet amazing people and you, you learn so much and life's about learning I think. I can't, you know, ‘til my brain packs in I don't think I [laughs], I really want to stop learning. So, though I'm cutting back clearly, and have cut back enormously on my involvement in PPI, I don't think I will completely disappear because there are things I can do like peer reviewing and commenting, which I am signed up for in the NHS and other organisations and it keeps me abreast of what's going on.
 

Andrew has always felt accepted by professionals, but it’s essential to have more than one person on a committee. They will leave if they feel isolated and threatened.

Andrew has always felt accepted by professionals, but it’s essential to have more than one person on a committee. They will leave if they feel isolated and threatened.

Age at interview: 64
Sex: Male
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I mean, if you're thinking about responding to an opportunity to take part in PPI then I would encourage anybody to take a leap, to do it. I mean my own experience has been that I have been very well accepted by the professionals, whether clinicians or academics, who have been very supportive. So, take a leap even though it will be into unchartered waters and the language and the environment maybe really a bit foreign. At the same time, latch onto the support and guidance that is available. I think INVOLVE is a really useful organisation, and networks and particular clinical teams and organisations will almost certainly have their own forms of support. It's worth seeking those out, and indeed having some expectation that whoever you're working with, as part of their contract with you, will be prepared to help and support you and find you independent advice and guidance Because I think what we should never be put in is a situation where you're the lone voice and feel isolated. It's simply good practice that we shouldn’t put patients and members of the public, members of the laity in that kind of situation where they do feel isolated and threatened. Indeed that's a sure way of losing people from situations. But, yeah, put your toe in the water, but also have some expectations about the support that's available.
 

Before you get involved, think about why you want to do it and what you want to do. When you start, you’ll soon find you want to do more.

Before you get involved, think about why you want to do it and what you want to do. When you start, you’ll soon find you want to do more.

Age at interview: 54
Sex: Male
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For anyone watching this who's thinking of taking part in PPI or who has just started, I would suggest taking a very deep breath, letting it out slowly and while that's going on, thinking, why do you want to do it, and what is it you want to do. And I would actually genuinely say be as specific as possible. I, in my own experience, I knew that I wanted to do it for two reasons. One, I had this moral imperative to put something back because I was still alive after I'd been ill. But also I had this curiosity and it, specifically it was around I said yes to a clinical trial because I wanted to help research. I did not understand the information that was put in front of me and I picked up very quickly that I hadn't understood what the trial I was on was all about, and I hadn't understood what I was saying yes to do. So I became very interested in patient information and the issue to me about how clear the information is, but also how receptive the mind is. The timing of that information is also very, very important. So, I was quite specific about what I was looking at. And then things, since then in twelve/thirteen years have broadened out into all sorts of other topics. But, if anyone is getting involved I would strongly urge: what is it specifically that you want to do? Is it to help with the information? Is it to actually look at molecular biology? Is it to improve the services that your hospital offers because that can be a research topic. You can do that by standing outside with a placard and campaigning or it can be done as a research topic depending on what the issues actually are. So it's just think it through, that would be my advice – think it through and then stick to your guns. Play to your strengths and then after that things will develop. After six months, you will find yourself wanting to do a little bit more, perhaps a little bit less, of what you're doing now and a little bit more of something else. But it does grab you, it does grab you.
People also had messages for those already involved in research. They advised them to feel confident to ask questions and to ask for feedback about what they were contributing; make sure they were thinking about what they were doing and trying to do it in the best way; take advantage of the support available to them, including being buddied-up with someone who is experienced; bring their queries or concerns to the chair before the meeting starts. They also said it was important to act in the right way. Derek said it wasn’t about ‘banging the table about some issue’ and Roger Z advised people to ‘be measured and be thoughtful, but be prepared to be very vocal if you have to be, don't be scared of it.’
 

Entering a room full of senior academics can be intimidating, but they may not mean to exclude you. Derek offers advice on how to break the ice and ask questions.

Entering a room full of senior academics can be intimidating, but they may not mean to exclude you. Derek offers advice on how to break the ice and ask questions.

Age at interview: 62
Sex: Male
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When you first go to some meetings, there is a sense, I've been in rooms – this is rare, but it does occasionally happen – that all of the clinical leaders are all standing talking. And you walk in the door and you feel as if you are a lemon amongst oranges. And they all turn round and they look at you, and then they turn back to talking about what they were talking about. And to begin with I used to think, 'Oh!' And then after a while I realised that, that was more about my sensitivities and it wasn't a sort of. I sort of thought they always met regularly because they don't, so when they were in their huddle, they were playing catch-up. They were going, "Have you seen the latest policy? Have you heard what's happened about this research in a particular Trust?" You know. So, they were only playing catch-up. And actually what they would often do is turn round and go, "Oh sorry, you're the patient rep, you've come and." And I'd be made most welcome. But how do you open your mouth for the first time? You're sitting there sometimes with the people who treated you: professors, senior professors, professors with strange titles for their professorship, which sort of lifts them up on a plateau, Nobel prize winners, Knights of the Realm. And you sit, you go, "How do I speak here?" So I found quite often that my tricks of the trade are: ask to speak early on, so that, just say – and if they didn't have done introductions that's a good start. "Excuse me I'm new, could people introduce themselves? Could I say who I am?" Keep it short; it's not a life story, right? But just say, "I'm Derek, and, you know, I'm here as representative of the public patient, I'm a lay whatever." And just get people to quickly introduce themselves. That breaks the ice for you because when you're nervous, if you don't speak quite quickly your voice dries, mine dries quicker than most, so I want to get in there quickly.

Second one is not to bang the table, right, about some issue. To sit and listen and take part, but to ask one question in every meeting – because you don't want to hold the meeting up – about what something means. “Could somebody explain something” begins to focus the group back into speaking a language, which is understandable because they love their acronyms. They love their acronyms so much that as the longer we have become involved we have created our own acronyms in the world of patient involvement. So, do not think it is only them, right? So, just breaking the ice with a sentence about something, but if you don't want to do that just say to somebody next to you, "Could I just ask you, would you mind, could I write sometimes to you, what does this mean and pass it across to you?" Because it, we don't want it to stop the meetings going. 
 

Have a clear idea of your role and what’s expected of you. If you’re not sure, ask for feedback. It’s striking how much fun involvement can be.

Have a clear idea of your role and what’s expected of you. If you’re not sure, ask for feedback. It’s striking how much fun involvement can be.

Age at interview: 69
Sex: Female
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Yeah kind of be clear and confident about your role and if people aren't being clear with you then think about what you feel you could do, what you'd like to do. Maybe what you've not yet been asked to do but could contribute. Or maybe people aren't aware of what you could contribute. And talk to someone about it. Fill a patient on a group if there is one or the Chair of the group. It's often quite useful to have a talk with a Chair of a group before your first meeting, face-to-face if possible to, you know, clarify what your expectations are. Can sometimes take them a bit aback if you ask for it but when I've done it I've always found it really worthwhile. And actually if they often feel a relief because it begins a bit of personal contact between you and the, and the Chair and they can begin to understand how they might get most out of you as it were and the kinds of ways in which you could contribute. If it's not a formal group of the kind I've been describing then I think some of those things still apply. And I guess I'd add if you're not sure, try it. If you're not sure of what you're doing is having an effect, ask. Say to someone, "Look is the stuff, is this useful? Could I have a wee bit of feedback?" Ask the Chair to give you feedback or maybe someone else on the group who feels like an ally or there maybe someone who's, some groups actually appoint someone to be in that kind of role with you.  

And if they haven't that is perhaps something you could ask for that they may simply not have thought of but if you propose it they can say, "Oh yeah I can see that would be good idea." So you know there's lots of kind of practical things. And just one other thing I would add is that on one project where I was a co-researcher because it was looking at the impact of being involved. And we did lots of fixed groups and things and listening to the tapes something that struck me was how much laughter there was on the tapes. You know people were, they were describing their experiences and there was a lot of mutual support and enjoyment, and those people were, you know, they were laughing about – sometimes they were laughing about bad things as well as good you know, but mostly, you know, it may sound more than paradoxical, but, you know, this stuff can be fun.
 

Monitor your performance and think about how and what you’re contributing.

Monitor your performance and think about how and what you’re contributing.

Age at interview: 53
Sex: Female
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I mean if we review that, the positives – I think I've mentioned it at some other point – is I would say, “Here is an opportunity. Is it interesting? Is it worthwhile? Do you feel you can make a contribution?” And the researcher may need to offer you enough information, flesh it out for you to be sure of that. But if you're interested in the general concept and you feel that you can say yes to all of those things, then get stuck in and especially at the beginning it's reasonable to expect people to come slightly more than half way to make you at home and encourage you. But equally you've got to be really mindful of what am I contributing. You've got to put yourself – well all parties have got to put themselves in somebody else's shoes. 

But, and you need to realise that time is precious and you'd better get to the point as swiftly as you as you reasonably can. Some people find it difficult to be sufficiently succinct or to the point to make their presence at the table really valuable. If you can monitor your own performance and by the attention to detail aspect I was talking about earlier, you've got to keep assessing your performance I think in order to be made welcome at future events. So yes, so it's a two-way thing.
 

Don’t be afraid to speak up; there are no silly questions.

Don’t be afraid to speak up; there are no silly questions.

Age at interview: 68
Sex: Male
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Go for it. Oh I mean definitely go for it. If you think about it and you wonder, 'Well oh I don't know, I might ask stupid questions and make silly.' There's no silly questions or no stupid questions – a lot of the questions you ask that you might think everybody knows the answer, half of the people who are at that meeting will be sitting there saying, "Phew I'm glad that question was asked because I didn't know what they were talking about." So don't feel in any way that you can't cope with it. Try it, get involved; if you don't like it walk away but don't be afraid to try yeah.

Last reviewed July 2017.
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