We asked people what factors made it easier for them to be involved, and what made it a better experience. Two important factors – payment of expenses, and training and support for the role – are discussed elsewhere. Here we look at other helpful factors, which are often about practicalities of involvement as well as personal relationships.
Practicalities included, for example, when and where meetings were held; different forms of communication; flexibility in accommodating people’s needs; recognising people have busy lives and other commitments; allowing people to dip in and out; providing help with arranging travel and making meetings accessible; being given plenty of time and explicit guidance on how to respond to documents; making sure meetings have plenty of breaks and refreshments; being clear what people are being offered as well as what’s expected of them.
Creative use of technology and social media to support involvement was welcomed, but the key message is to ask people what suits them rather than expecting everyone to get involved in the same way. What works for one person may be really difficult for someone else (see ‘Difficulties and Barriers to involvement’). Similarly, finding the right task at the right time can help; Kath, for example, felt reviewing grant applications was a less emotional way to get involved when their son died, and after her stroke Marney said, “I didn't take it on until I felt I could cope with it.”
Nadeem prefers to be sent documents in hard copy by post.
Nadeem prefers to be sent documents in hard copy by post.
Age at interview: 57
Sex: Male
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My only request, I mean these days, you know when I was working it was slightly different, is that I've asked people to send me stuff in the post. They can send it to me email as well but I'm still the traditional old school you know, I like looking at paper and I like scribbling yeah. To me it's much easier that using a document and then putting my words in, you know, as opposed to going this, you know, track changes and whatever. I find those maybe I'm of a different age and I'm not the computer kids that you guys are these days but, you know, I still prefer having that hard material in front of you because you can flip back. On a PC, yes you've got the document yeah, but you can't flip back, you've got to scroll yeah.
And do you think that using computers is important for people who do PPI work? Do you think that would be important?
I think it's a bit of both yeah. Yes I mean some people will find it easier you know. I mean attend our meetings where people have, don't carry any papers. They open their iPad or whatever, the document comes out and they read it. I still find it, I'm not sure, I'm still trying to work out whether it's being rude or not being interested yeah, and maybe that's my generation yeah. I would still enjoy the flicking of the pages yeah, I would still say, "Well actually on page 25, paragraph three, you said this because you can sort of cross reference it. I don't think you can do that on a computer yeah. But it takes all yeah. I've still, I mean I remember when I was working, I would still handwrite my letters, I would handwrite all my reports – it'll go to the admin, type it, correcting on a pc – not a problem.
In the early days after his stroke, Neil found phone or email contact easier than face-to-face. It helps if researchers try to fit round people’s needs.
In the early days after his stroke, Neil found phone or email contact easier than face-to-face. It helps if researchers try to fit round people’s needs.
Age at interview: 65
Sex: Male
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Right, well in the early stages of stroke recovery, because you're aware that your speech is not as clear as it used to be, you become very self-aware and a bit tongue-tied. So face-to-face round a table is much more difficult than on a telephone, which itself is more difficult than emailing. So, I tried to structure, in the early days, as much writing as possible, so I had the document in front of me and I could take my time and organise it. Second thing after that, was sometimes the jobs involved interviews. So I would then try to persuade them that by phone was better than face-to-face because of my own position. So that's the way I went about it. Now I'm quite happy to do, as in this case, you know, a structured face-to-face interview. So it's a gradual process of not rushing it, but having goals in mind that you want to restore yourself to where you were or, you know, as near to that as you can get.
And in your experience have the groups you've worked with accommodated your needs or, you know, if you preferred to do something by phone but they would have preferred you to be in the meeting, would they have been OK with that?
Yeah, the best practise is that the researcher listens to the lay person, takes into account what they can do and don't want to do, and uses, basically, what's on offer. Rather than having a pre-conceived structure in which we fit the lay people, it's – we'd like to hear from you, what's the best way to do it? So, and that's just my experience of course, others may not have such a satisfactory experience, but I've been very pleased with the way it's been handled.
Marney likes to follow up face-to-face discussion with an email. This sometimes starts another conversation going.
Marney likes to follow up face-to-face discussion with an email. This sometimes starts another conversation going.
Age at interview: 53
Sex: Female
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Well, given that I do an increasing amount of PPI work, I do sometimes follow up and then counter with reflections on the day or an email to check that the messages that I wanted them to take home have really gone home by putting it in writing. And, because I can edit it before I send it, I can be entirely happy that it's truly me. And it gives them the opportunity to painlessly forward it to other people, people who they think might take an interest or to file it for future reference or something. And I think quite carefully about how to make the point really clear in a “teachery” sort of way by using bold and colour and so forth.
And yes the stuff I do with the stroke research network – sometimes you'll have an email conversation backwards and forwards with somebody and then clearly that person has had a verbal or email conversation with somebody else and then you'll get an independent email that comes round and you get another conversation going.
And how do you feel about the fact that you might be passed around like that and other people might be able to access you?
Oh no I like it; I like the fact that it has the written dimensions so that there is much less scope for any sort of ambiguity. I mean I suppose people could be cutting and pasting bits and introducing aspects that were not where the message was really intended but broadly I think it's safer than a sort of a ‘Chinese Whispers’ thing where one person tells the next person and the next person thinks, 'Oh well yes, it might be useful for something else,' but the message gets twisted when its told one person to another. Whereas if you've emailed something it tends to get passed on in its entirety or at least paragraphs can be cropped and passed on. So I find it a very useful tool for moving things along. And other people like it and it cuts down on their work, which is also why I do it. So to be helpful you have to put yourself out to see something from another person's perspective to make things go more smoothly.
It helps Sharon to have her travel and a hotel arranged. Social time together and face-to-face meetings make it easier to have teleconferences later on.
It helps Sharon to have her travel and a hotel arranged. Social time together and face-to-face meetings make it easier to have teleconferences later on.
Age at interview: 44
Sex: Female
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So actually it's really good because they organise your travel. And I think they're really important, that you actually have face-to-face meetings because you make a connection with a committee. I think we're really lucky in rheumatology and we have an amazing Chair called [name] and he has always endeavoured to make sure that the consumer voice is valued and heard. I think most importantly that it's viewed as important and the meetings connect everybody together. We normally go down, have a pre-meeting. It's not a fancy hotel or anything else, very basic hotel; I think it's part of the [university name]. And then we'll have dinner together; where we'll all just share a table and chat, find out a bit more about everybody just socially, and then you'll have your full on meeting the next day. So yeah, I think they're really valuable. And then once a month we'll have a teleconference which will last an hour and a half and we'll all dial in, but because you've met the people it's much nicer and easier to do that.
And what's it like taking part in teleconferences?
Well now it's fine. At the first bit it's a bit strange but you actually get used to it and, as I said, because you've met the people it's much nicer and I'd always advocate that if you can have a face-to-face meeting first in any group and then you can dial in and then. I actually run a teleconference for a new parent group that's just formed as part of the British Society of Paediatric and Adolescent Rheumatology. So we actually have teleconferences probably once every six weeks and for those, most of us had met but a few people couldn't make the meeting, but again what I ask people to do there is just to say their name first so people know who's talking because if there's twelve to fifteen of you on a call it's really hard to know who's actually speaking at first. And sometimes you just have to interject and you might be, you've no signals or you've no signs of people are trying to also speak. So you therefore just need to just interrupt or just speak whenever you get a pause. Difficult, probably harder than a face-to-face but time, it's a better use of time and it doesn't cost anything as opposed to everybody travelling.
Kath first got involved through the hospice where their son died. Initially face-to-face involvement was hard. Reviewing grant applications was better because it was less emotional.
Kath first got involved through the hospice where their son died. Initially face-to-face involvement was hard. Reviewing grant applications was better because it was less emotional.
Age at interview: 55
Pronouns: They/Them
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Well my background is as a carer of a child with a chronic illness. And the very first involvement in research I had was through the hospice where he died who did some work on bereavement. And following that, one of those researchers asked me to be on the steering committee for another research project they did. That was really only a very minor involvement, just reviewing a few documents and not really very deeply involved in the research, just commenting on drafts and things like that.
I had sort of expected to get more involved. After my son died I went back to university and thought I was going to get involved in health service. But frankly I was just a bit too sore to really feel I could contribute very well to that. It, it was all a bit, a bit too confronting and I thought working with other people who were going through traumas probably wasn’t a good idea at that time.
So I stepped back from that and there was a sort of gap in, in my involvement… when I went and worked in community research and community empowerment work. So just stepping away from health, but still about, you know, getting involved in things.
And then I was sent an email that a colleague of mine had got through a disablement charity that she was involved in which was asking for lay reviewers for research proposals for National Institute for Health Research and also for funding panel member for Research for Patient Benefit Programme, and she said, “This looks like exactly your cup of tea.” And I thought, yeah, that’s looks like something that’s really interesting. It’s looking at the area that I already wanted to work in, and it’s a bit more stepped back. It’s not as sort of personal and face-to-face as some of the other stuff that I was looking at doing. So I thought that sounds like a good way of, of contributing really, and using the knowledge that I’ve got from being a carer.
As Sharon suggests, getting to know people and building good relationships is another important factor. Many people talked about how much they enjoyed contact with researchers and feeling they were treated as equal partners – Dave X said his group had now started inviting researchers to open evenings with ‘wine and nibbles’ so they could get to know each other. It helped people to feel they were really listened to, valued and respected. When this doesn’t happen, people can feel very frustrated and excluded (see
Difficulties and Barriers to involvement’). Helena gave a positive example of working in partnership, though recognising that her own status as a researcher makes this easier.
David Z has always felt his involvement has been highly valued and he’s been listened to.
David Z has always felt his involvement has been highly valued and he’s been listened to.
Age at interview: 68
Sex: Male
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Well my own experience is that the service user participation in the Stroke Research Network is highly valued. That the researchers in the Stroke community do take account of the involvement of lay members. Indeed the chair of my Clinical Skills Group is adamant that involvement is a very high priority and I heard her speak at the recent Stroke Forum to potential researchers about the importance of engaging with the Stroke patient community or the public in first of all identifying the research priorities, identifying the content and the way that the research might be organised so that the views of the lay members is taken into account when designing a research study, and then engagement with them right the way through. And not simply seeing them as data and people who will enable the person to receive academic credit, and really looking at the real meaning of the research and that is to improve the life of people who have experienced stroke, and to enable care to be given in a much more effective and efficient manner.
Equal partnership between researchers and patients makes both ‘better than the sum of our parts’.
Equal partnership between researchers and patients makes both ‘better than the sum of our parts’.
Age at interview: 43
Sex: Female
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And I'll give you an example of something that I was working with, with a colleague today, where we have a big body of data on my condition, and she doesn’t have my condition. And although actually she has another chronic condition, which is not massively relevant to this, but occasionally comes up so that’s great. And sometimes where there's an overlap we have some synergy that comes out of that. And what we've done is we are looking at the data together and discussing it. And I am giving her insights based on my knowledge of what it's like to live with a condition in terms of I think that this might be a reason why this is happening, so let's go down this road to see if I'm right. Whereas if I wasn’t there she would be completely in the dark or she might go off into some completely different assumption. So it's refining the question with, so that your research is going in a sensible direction; it's taking everything it possibly can into account. And interestingly one of the things that we were finding in our data was that – so this is quantitative data and one of the things we thought at first we had a significant result to do with ethnic minorities, and we're both white. And at that point I thought, 'I am, we've got outside of my area of expertise in terms of involvement. If we are going to go any further with looking at this data and the possible reasons, or the possible explorations of why there's a difference with these ethnic minorities – we need someone who can give us that information and neither of us have got that information.'
So that was public; that’s to me that was, it's one of the best projects I've done in terms of public involvement because we are absolutely equal. We are absolutely better than the sum of our parts – is that what I mean – yes, the whole is better than the sum of our parts. But we're also being reflexive about the fact that where we are not representative and where we need more help. As it turns out we were wrong about that bit of data so we don’t need to do it but, it's, but if we had needed to take that further then we would definitely have had to rethink who we were involving in the project. Does that make sense?
Several people described the role of a good chair (whether a lay person or a professional) in making meetings feel safe and welcoming, explaining jargon, encouraging everyone to have a say, and creating an atmosphere of patience and acceptance. Alan and Margaret both commented that sometimes when they asked what seemed a ‘stupid question’ professionals round the table had said they hadn’t understood either and were relieved someone had asked. Chairs can speak to people before the meeting or offer them a chance to ask questions privately afterwards, and maintain informal contact between meetings. Where people sit during meetings with professionals may also be important to ensure the chair can see them and can bring them into the discussion. Good patient and public co-ordinators can also provide helpful support – these are paid staff who help organise and support involvement.
A good chair (lay or professional) will encourage everyone to contribute but without pushing them.
A good chair (lay or professional) will encourage everyone to contribute but without pushing them.
Age at interview: 71
Sex: Female
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Yes I think researchers, well I think the message has got to most people. I think if you want lay input, ask for it. And sometimes if you don't get an instant response, you know, send another request because sometimes it's just that people are busy or, you know, it's on the to do list and it hasn't risen – it's not because there's no interest. And value those people, make them feel welcome. You know, some professionals are extremely good at chairing meetings where lay people are involved and some are not, some are appalling. And some of the people that you would feel should be really good, are not good. Good chairing of whether it's a meeting or whether it's a teleconference, you need to actually acknowledge everybody who's taking part and to make sure everybody does take part. That's not to push people when they're not happy to be pushed but just introducing, you know, and just asking for, you know, "Is this something you'd like to comment on?" Or, "Well actually this is something that we need a lay view, what do you think about this?" And if they don't come back right away then say, "Well could you think about that and then come back to us?" So don't put people on the spot. But equally the lay people that are getting involved in these things have to be prepared to be challenged. So they have to be prepared to be asked for their – that's what they're there for but don't be frightened to say, "I don't know." At the end of the day we're only patients so you can play that card. But we need to be, we need to earn our place at the table to be respected and I think we've done that.
The coordinator gave Margaret a list of common terms, and she has always felt able to ask any questions. Having a mentor can be useful.
The coordinator gave Margaret a list of common terms, and she has always felt able to ask any questions. Having a mentor can be useful.
Age at interview: 63
Sex: Female
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I mean the biggest thing was probably at the very beginning was looking at acronyms that are used in the research world and even the, well, what a phase one, phase two, phase three trial was, or a randomised control trial because you sat and you heard RCT [randomised controlled trial] and all of these things, and that my PPI lead did give me a list of acronyms but you know it took me quite a while to actually link the acronyms with what the areas were that we were working in. And I suppose sometimes you slip in to using acronyms yourself which at the beginning you would have said, "Oh no, no I've never used those but, but you do. But that's important, that whole support from professionals has been really important to me, that there is a person, there is, in my case it's a lead nurse who is the PPI lead and I've never felt, when I've asked a question, that the rest, even round the executive that everybody was rolling their eyes and thinking, 'She's asking a question, she doesn't know anything about that.' Never, they've always been very willing to answer me and that is so good that you feel that no question is too stupid that they're willing to say, "Well let me explain this about research to you," and that's a big thing when you're, when you're new in PPI or even as you go along that that's, you have someone who like is a mentor who can explain a terminology or even things like how drugs are funded and you know that whole process that is like an alien body to you and totally another language.
Margaret was not the only person to suggest having a mentor. Contact with other people involved in research was seen as a useful way to provide peer support and learn from those who have more experience of different kinds of involvement.
At the first few meetings Andrew felt excluded by the jargon used, even though people were welcoming. It helped that he was not the only lay person.
At the first few meetings Andrew felt excluded by the jargon used, even though people were welcoming. It helped that he was not the only lay person.
Age at interview: 64
Sex: Male
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My first meeting, indeed my first two or three meetings of this Board I think largely went over my head. People have said that all professions are conspiracies against the laity and the way in which any of us in our own professional area talk in acronyms and use jargon, is a way in which we automatically [laughs] exclude other people. I did have to get through that. Now I'm reasonably confident and I'm not in the least shy about saying, "What does that mean? I don't understand this." And I would want to be very fair to that Board – they quite deliberately appointed two of us to the Board so that I wasn't isolated and nor was my colleague; we were able to support each other. We did have little natters about, "Well I don't understand any of this; what do they mean?" and while there was, not very much in the way of induction there was plenty of opportunity to ask questions, to get support, to be guided through what I rapidly discovered was really quite sophisticated processes, and transactions that, that this network was involved in and which I needed to begin to understand. People were very pleasant and, and very patient, very happy to listen and to answer questions, so I have absolutely no complaints but it was quite a culture shock coming into that kind of environment.
Working on your own can be isolating, so Helen really enjoyed meeting others involved in a range of projects at a training event.
Working on your own can be isolating, so Helen really enjoyed meeting others involved in a range of projects at a training event.
Age at interview: 41
Sex: Female
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I mean that was one of the other things that was wonderful about the training; the NIHR sort of workshops for PPI involved people. It wasn't just the workshops themselves, it wasn't what we were learning. It was the fact that there was thirty or forty people there who are all working in isolation on little pockets – you know somebody is doing sort of Motor Neurone research, and somebody is doing this, and somebody works with the local elderly, and so on and so forth. And we were all there together in the room at the same time; learning something together and lunchtime, I mean I don't think any of us ate. I mean, there were so many different conversations going on left, right and centre; we were jibbering away to each other, and it was just nice to find out that there other people out there doing the same thing, and in many cases doing so much more. I mean there are some people who throw themselves into this, heart and soul and you know, it makes you feel bad that you're not doing as much as they are. They're just so enthusiastic about it and you think, 'Well I thought I was enthusiastic, but you,' and I think that is, that is something, maybe, that needs to be thought about. Is it you know, bringing people together; the sense of isolation that you mentioned when you are working on your own, just looking at, you know, this piece of paper making your own comments. It is very, very isolating and I think people do need to know. Not necessarily that there are other people working on the same thing but, just, we are all involved – none of us are clinicians, none of us are researchers – we're all lay people. But, we're all involved and that might help with the recruitment effort as well because, we could then turn that enthusiasm outwards and drag other people into it as well.
Even if face-to-face meetings are not possible, Maggie explained how one group she is involved in has set up a Google Group to share ideas online.
While people recognised that research can take a long time to produce answers, they often said it would be helpful to have some feedback on what they had contributed and to know more about how the research was going.
Helen says a bit of appreciation and feedback on what difference they have made is helpful.
Helen says a bit of appreciation and feedback on what difference they have made is helpful.
Age at interview: 41
Sex: Female
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Do it but, appreciate us. We are human. We need tea, coffee, biscuits and a pat on the back occasionally. We need to know that what we are doing is appreciated and whether that is sending round, you know, an email saying, "Thank you very much for what you did, here are the comments that we had," or whether it is having a meeting that starts off with tea and biscuits and a general chat about how wonderful it was that so many people were involved before moving onto something else. I think most of us would probably do - well most of us probably do, do an awful lot without any of that. But just, you know, every now and then having a pat on the back and a cup of tea would be nice, yeah [laughs]. Sorry.
Knowing you’ve been listened to and you’ve made a difference matters to Jennifer.
Knowing you’ve been listened to and you’ve made a difference matters to Jennifer.
Age at interview: 58
Sex: Female
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Well like I say I mean I did this piece of research on 23rd Jan and although I've not been acknowledged for it but I've been acknowledged where the researchers have taken on-board and they have listened to what I've said about this piece of research and I think if they take it, they've done what I've said and it works and they do, it does help to bring more patients in, well I think I've done a good job, I think it's worked.
Yeah.
That's all I can say, it's just this one piece of research and I said, I said to – oh you tell me and I'll tell you – [name]. I said, "Will you please keep me informed on what's gone on with that piece of research, let me know the outcomes?" I mean obviously it'll take time. I mean this was only January, they had to take everything off, re-do it all and then they'll have to wait now to see how many patients they recruit now for this study, but if it works and they do… recruit more, a lot more, then I think, well I think they should then listen to what we have to say yeah, and you know if it works, yeah it does work, what I said. Not only me, other people as well but yeah I think that's it.
Finally, people said how important it was to see researchers and managers supporting patient and public involvement, both locally and at the highest national levels. This included visible leadership from bodies such as the National Institute for Health Research (including INVOLVE), the National Cancer Research Institute, various medical research charities and research networks.
See also:
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Difficulties and barriers to involvement’
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Training and learning’
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The costs of being involved and payment’
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What activities and tasks are involved?’
Last reviewed July 2017.
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