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Researchers' experiences of patient & public involvement

Researchers' experiences of patient & public involvement

Finding people to involve in research

A common concern for researchers, especially those with less experience of involvement, was how to go about finding people to involve and how formal the process should be. Researchers whose work combined a clinical and a research role sometimes felt they had easier access to a pool of people than non-clinical researchers. This might include existing patients or research participants who are invited to get involved more formally, but also informally using the opportunity of a clinic to gather some perspectives. Adam described PPI as ‘A very small step from what I do clinically anyway’, and Carl said, ‘Throughout my clinical training I've always involved patients, so the idea I didn’t is nonsense…. I think in some ways, if you're a clinician, it's much easier to say you're involving patients all the time.’ But Fiona pointed out time in clinic is limited and Pam felt people can raise different issues in a PPI forum.

 

Adam researches a rare condition and gets to know the patients well. He gets a ‘gut feeling’ about who might want to be involved, but recognises he could reach a wider group.

Adam researches a rare condition and gets to know the patients well. He gets a ‘gut feeling’ about who might want to be involved, but recognises he could reach a wider group.

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Yes, so probably not in a very systematic way but in the process of performing the, recruiting people to the study getting to know them assessing them it’s become clear that some people have a particularly strong interest and I’ve really proceeded on that basis so if I’ve approached people who I’ve had a hunch would be keen to contribute and would have an interest in doing so. 

You know, inevitably when you’re studying a group of people there are some who are kind enough to give you a bit of their time but who you get the sense don’t want to be involved more than they need to be for whatever set of reasons, whereas there are others who seem particularly delighted to participate in research and therefore are likely to have the motivation time and energy to give more, to give to the planning process as well. So I think I’ve proceeded on the basis entirely of gut feeling about which people might want to be involved…

And how would you go about trying to make your involvement group representative?

I think as I implied earlier on I probably haven’t done yet. and one initial gesture you can make which I have made is simply to invite people to get in touch if they would like to contribute and that invitation’s gone to everyone that’s taken part in our research so but of course the people who get in touch are going to be a self-selected bunch of particularly keen to do so. So I guess that you would want to find ways of encouraging people who wouldn’t naturally come forward to contribute and I guess that might best be done by using questionnaires or having conversations with people in a systematic way as you, as you recruit them as you work with them rather than waiting for the few who are particularly interested to make contact.
 

Fiona tries to use clinics to get views from people who wouldn’t otherwise come forward – but time is very limited.

Fiona tries to use clinics to get views from people who wouldn’t otherwise come forward – but time is very limited.

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Sex: Female
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Their voice is still very important, but they're not willing to come forward. So, you know, when you talk about representative, yes you can try and tick the boxes for getting a wide age range, male and female, they've got the visual conditions, all of that sort of thing, but you still have got the problem that you've got the, I suppose the extroverts, the ones willing to come forward versus the ones who either are not willing or would never have thought about giving their opinion, so you don't access those.

Doesn't stop me talking to them though in clinic when they do come through.

Yeh.

But that's the only way I can capture their views.

…We're doing our best I hope but there's a lot we don't know.

And a lot we don't know in terms of patient experience or PPI or?

Yeah. Yeah you've got individuals coming into clinics, they've got a time slot – hello, goodbye, you know. You're trying to do the best within that time slot and with the management options that are available to you, but they have to leave and they've got to go home and they've actually got to carry on living with that. And we don't know exactly how they're living with it. Lots of people don't ask and I think sometimes we don't ask because we're afraid of the answer and knowing full well that if you do ask that you could be there for another hour longer and you don't have that time within clinics. And I know that's going back to a clinical front as opposed to a research side of things, but actually I think research and clinic should be combined.
 

Pam thinks clinicians need to go beyond the clinic setting to hear from patients. They will learn different things.

Pam thinks clinicians need to go beyond the clinic setting to hear from patients. They will learn different things.

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Age at interview: 54
Sex: Female
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So I think PPI is, incorporates being a member say of a funding panel. So you would get members of the public being on specific funding streams like Research for Patient Benefit and they’d sit, and it seems to me that that is a legitimate role as a member of the public and a lay person that doesn’t require experiential knowledge of a particular health condition. And it’s more to do with governance and yeah just, just that person plays a particular role as a non-expert. Whereas I think in other instances it’s really important to get people with first-hand experience. And I think what I’ve found is that sometimes clinicians, for example with the bladder and bowel project, clinicians were only used to interacting with people as patients in the clinic. And so it was a real eye-opener for them to sit in a room and do some PPI with women who were able to talk about the impact on their sex life on going swimming and things that they perhaps might not have revealed in the clinic or that their consultant wouldn’t have considered. So sometimes, you know, it varies according to the purpose of the PPI I think.
Both Fiona and Adam reflected a common worry amongst researchers: the extent to which people who get involved are either self-selected or recruited through personal contacts. Using newspaper and social media advertising to widen awareness of involvement opportunities was suggested, but researchers often had reservations about formal selection processes such as asking for a CV, setting selection ‘criteria’ and interviewing because this might alter the basic premise that anyone can get involved, and reinforce researcher control over who is ‘allowed’ to get involved. But there were also concerns about ‘professionalisation’ and whether after a time people might become too ‘expert’ to be considered (see ‘Long term involvement and ‘professionalisation’’).
 

It’s useful having a regular PPI group but it’s ‘the same people again and again’. Alison wonders if they need more formal selection to widen the group – but that also has drawbacks.

It’s useful having a regular PPI group but it’s ‘the same people again and again’. Alison wonders if they need more formal selection to widen the group – but that also has drawbacks.

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Age at interview: 47
Sex: Female
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Who are this group of people, who are they made up of; what are their experiences?

Really, really mixed. I mean what's – this is to do with funding and how the group set up their – the common factor is meant to be about experience of long term conditions rather than emergency care, but we've actually drawn them for the emergency care studies. So they're people who have had some experience of one or more long term conditions, either themselves or caring for a family member. So they, yeah I'm just trying to think how, what routes they would have come to us by, because I wasn’t directly involved in recruiting them but, as far as I know, through linking with other user involvement organisations. In Wales we have Involving People which is equivalent to the English INVOLVE, so it's the same structure there.  I think word of mouth through, you know Stroke Association and existing third sector structures. And then there seems to have been a sort of, a bit of a snowballing effect, so one guy came along and then his brother started being involved as well so that kind of thing. So they are from all over Wales, mostly fifty-plus, you know mostly retired.  Some with a professional background working in health and social care so they have a, you know, dual perspective there.  In terms of sort of, yeah how much education they’ve had and so on, really, really varied. Yeah a real mixed bag and some more – I'm not sure angry is the word – but some, yeah some of them were quite sort of more inclined to get worked up about things.

So passionate, bang on the table.

Yeah, yeah

And how do you feel about, firstly having access to a group like that when it comes to having to involve people?

For a researcher it's great because it's like you don’t really have to sweat over it, you just get on like. Just put the word out and, "Oh there's Mr so and so, we've worked with him before; we know he's really nice" [laughs]. But the downside of that is that you can end up working with the same people again and again which maybe sort of closes you off a bit to other possibilities. And yeah I would say, you have to be a bit careful about this, but looking at the range of people we have there are some who I find much more productive and helpful than others, put it that way. There's something quite interesting about the process of involving people because it's quite a formal set up and people get paid an honorarium – it's, you know, quite a decent rate. It’s a hundred and forty pounds a day, something like that so it's not bad money, plus travel expenses and all the rest of it. So you know if you think of this daily rate, if that was your job that would be a good daily rate. But we don’t have any kind of selection process as such so, you know, if you put the call out it seems to be whoever kind of puts their hand up first gets the gig and sometimes you think, 'Actually maybe if we, in some ways we're treating this like a job, we should go to the next step and really sort of interview people and what's your relevance and experience to this study and de de de?' But then once you start doing that you're emphasising the power of dis-balance again. And it's, you know, we have the control over whether you take part in this or not. So it's, I find that quite a tricky issue really.  
 

Andy prefers to accept anyone who applies to the involvement group and then match them with research projects. Interviewing may exclude people researchers think are ‘difficult’.

Andy prefers to accept anyone who applies to the involvement group and then match them with research projects. Interviewing may exclude people researchers think are ‘difficult’.

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Age at interview: 49
Sex: Male
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I initially at the very first stage wrote to a load of organisations and said, ‘We’re setting up the new group, would you like to be involved?’ And people volunteered. And by in large – I think we said, we didn’t say no to anybody. And then subsequently, if somebody wants to get involved in [involvement group], and usually we go out and do question generation workshops, you know, critically appraising research for lay people and things, all sorts of different workshops. So people come to us and say, ‘I’d like to learn a bit more about this’. That’s probably one of the biggest ways we get new members. But they just write a short paragraph about themselves, why they want to get involved…

And very few people have ever been refused. I think the only issues, again going back to the, we want a broadly representative group in terms of experience. 

So it might not be the case that if we already got a lot of people with diabetes and there was another person with diabetes, we might say, well, we wouldn’t say no, but we would create a waiting list or something like that and say when an opportunity comes up. 

It’s occurred to me that I’ve tried to make it as much as possible a real decision. So just to say to people, ‘I don’t have an involvement in that part of the process other than facilitating that it happens and making sure that it happens, so that somebody who’s asked gets a response quite quickly.’ But I have tried to say to people, ‘If you really have a concern about someone, then do say. Don’t just think that this is a – it may be that you’ve worked with this person before and you’re worried about what impact they might have or so on.’ But I think it’s quite important that we don’t interview because the other issue about the professionalisation thing, which again is not really about professionalisation, but is like picking people who will go along with you. So if I interview you – and I have heard it said we don’t want people involved who’re parts of campaigns or things like that. You know, campaigning against hospital closures or whatever it is, which is almost tantamount to saying, ‘We don’t want people who are involved in issues around health care’. 

And it’s not about picking people that it’s going to be easy for us to get on with. I think it’s really interesting that [involvement group] have developed their own, they email each other and talk to each other about stuff. So one of our members referred to it as becoming a community of practice, in which we share what we do and our experiences and so on. And because it’s not the project-specific group, which exists for twelve months and then disappears, it’s gone on and developed and evolved, in a way built up expertise and knowledge, which gets passed on in a way that’s not possible if your PPI is purely project-specific. 
 

Catherine worries that formal adverts will attract only a certain type of person. She doesn’t ask volunteers about their occupation but wonders if she should.

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Catherine worries that formal adverts will attract only a certain type of person. She doesn’t ask volunteers about their occupation but wonders if she should.

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Age at interview: 29
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I mean I've seen job advertisements for PPI people as, you know, like literally advertised like jobs and I think that’s going to be a certain of person who applies for that job, has an interview and gets it, isn’t it? And I don’t know how, I'm not sure really what the answer is to that. I guess I'll see. I actually don’t know. So I've got four people come in who have signed up for this PPI group and one of them used to be an academic, I don’t know what in actually. The other one I've met and is a middle class, well-educated type person. The other two I've never met, I don’t know, I haven’t really even asked what their occupation is because, to me, the fact that they're – I've made sure that they're willing to put the time commitment in and that they know what's expected of them, but I haven’t asked what their occupation is, which maybe is, maybe I should be more selective. Because I do think as well that you're at risk of getting people who just are in it for the money. So one of the first strategies I used was to put flyers up, saying, 'Are you interested in being involved in research?' And it had some basic information about what would be involved, what would be expected, the time commitment, you'd want them to read and comment and come up with ideas, but it did have the money on it as well – like that they'd be paid twenty pounds an hour. And I had quite a few people ring up, more than I needed, and I'm sure a lot of it was just because they see it as an easy way to make money. So you think there's a risk that you'll get people who maybe aren’t that interested in helping with research but just want to make the money.
Like a number of other researchers, Andy and Alison found it useful having a standing group of people who could be called on for different projects, rather than finding people just for one project. There can be benefits for researchers in finding someone quickly, and for group members who get to know each other well and form their own ‘community of practice’, as Andy put it. This kind of group enabled people to dip in and out and choose when and how to get involved in particular projects. At the same time researchers recognised the need to match people carefully to the needs of the project – which might or might not require specific lived experience. In some cases more general members of the public may be just as well able to contribute. As both Chris and Ceri noted, having structured organisational support can be really helpful in maintaining such a group. (See also ‘Organisational support and leadership for patient and public involvement’). Whilst some researchers had formal structures in place to help with finding people to become involved, others said their strategies were much more ‘ad hoc’.
 

Sometimes Marian needs to involve people with a very specific experience – but other times ‘you just want somebody who is sensible and has an opinion’.

Sometimes Marian needs to involve people with a very specific experience – but other times ‘you just want somebody who is sensible and has an opinion’.

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Age at interview: 46
Sex: Female
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Yeah but you see that’s the thing about pregnancy and childbirth – we've all been through pregnancy and we've all been through childbirth because we were all born. So it's something that everybody will have some contact with. So, you know, some of the, one of the programmes I work on deals with pregnancy complications but we do have public members involved who have had kids, but not any complications. So yes, we clearly involve people who are across the whole spectrum of experiences. Now in many ways that’s almost convenience because it's whose, it's who says yes. Now with some areas we do have to be very specific because we want people who have had specific experiences. With other areas where we're covering a huge range of potential pregnancy complications, you just want somebody who is sensible and has an opinion about, you know, what if this were to land on your doorstep.  Now how you gauge that – there must, I guess when they recruit public members for grant panels and things, there must be some sort of interview process, but I don’t know how you judge that. How do you judge any of us at interview as to whether we're sensible and don’t know.
 

Chris describes their ‘Family Faculty’ – a large database of people whom researchers can contact. People may prefer to ‘dip in and out’ of involvement.

Chris describes their ‘Family Faculty’ – a large database of people whom researchers can contact. People may prefer to ‘dip in and out’ of involvement.

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Age at interview: 48
Sex: Male
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So I run a childhood disability research group that gets some core funding from a charity called [charity name] and that core funding enables us to have a small infrastructure, a family involvement co-ordinator and a researcher. And between us we invest a lot of time and effort in engaging with the kind of places where families with disabled children go. Predominantly we've started off by engaging with parents and so our family involvement co-ordinator will spend time circulating in the community where parents of disabled children are likely to be. And they do have communities that are either peer support groups or parent/carers voice that is a sort of advocacy group for parents with disabled children. And that’s how we got to know a few parents and held a few meetings to find out what they might be interested in and we built a relationship over the last five years. And I think because we've had constructive co-operation with a few parents, the words got out and we've engaged with more and more. 

So we have what's called our Family Faculty which was a name that I shamelessly took from a research group in Canada that had used the term. So our Family Faculty is currently a few hundred parents of disabled children in [place name] who've signed up to stay in contact with what we're doing and our activities and we have a very low, low requirement for being involved with this. So being involved with this can be just staying aware and receiving emails and hearing about what we do; to ringing up and having telephone conversations or, you know, coming to face to face meetings and working much more closely with this. And the reason we have that light touch engagement is because families are generally very busy and families with disabled children are even busier, and also their circumstances can change; due to their health or the health of their children and so we have very much a sort of light dipping in and out – people can come to things and then not come without needing to explain and that seems to work very well. 
 

As a PPI coordinator Ceri runs a PPI group and helps researchers find people to involve. She and Eric discuss the value of local organisational and admin support.

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As a PPI coordinator Ceri runs a PPI group and helps researchers find people to involve. She and Eric discuss the value of local organisational and admin support.

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Ceri: I suppose the way we, the support that we have here is crucial to what makes it, makes it happen I was going to say successful but as a successful as it is because I am actually funded to, to have this role and without me it would really struggle because it, researchers in the team some of them will be very interested in doing this but will find it difficult because they won’t have the necessary contacts. And they not just contacts but be familiar with the process for me to go through and then there are some researchers who just don’t see it as a priority anyway. 

So for more than one reason it may not happen if there wasn’t me who stands up and says right have you remembered to invite some service users to this meeting and I’ll help you we’ll find the right people we’ll contact them in the right way and then we’ll make sure we’ve got expenses honorariums for them and if necessary arrange accommodation and those sorts of practical things as being crucial. I think it’s also been really important that having, having this group which we have referred to through this because it’s enabled us to build this relationship with people and it makes it much easier for me to be able to recruit people very quickly. 

And there are times when someone will say we’ve got to get a bid in ten days’ time and can we have a perspective on this and I can get people together pretty quickly because we have that relationship and because I’ve got the contacts with them because they and me have some level of trust, they have a trust of the department generally now because they’ve good experiences. So, so the support and the culture because all this is supported by the person who heads the team that we’re in that makes a big, big difference. It would be difficult, it would be very difficult if we didn’t have all that…

We’ve been talking about researchers all the time there’s another section of the team here at [university name] that makes everything happen which is the administrative team.

Eric: Yes.

Ceri: We would really struggle without them they’re fabulous. And they’re, that attitude their willingness to go the extra mile their caringness that also is invaluable it really makes, makes it work.

Eric: Because the service users that are most involved will speak to them as much as they speak to us.

Ceri: Yes, yes.

Eric: In terms of just checking on arrangements or checking on travel arrangements as we say, payments.
Gail was worried at first that the young people she got involved in her 5-year project might not want to stay involved, but actually they have. However, Kristin and Sarah A noted that it can be difficult to keep a long-term group sufficiently engaged and interested. Others emphasised the importance of finding people to be involved in the early stages of project design and grant applications.
 

Gail did not expect the young people she got involved to stay long-term, but they have become very committed and skilled; a few have left and new members have come along.

Gail did not expect the young people she got involved to stay long-term, but they have become very committed and skilled; a few have left and new members have come along.

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Age at interview: 42
Sex: Female
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You have to think about it as part of the skill mix of, you know, what research question you’re asking what design, what’s going to be the time commitment, you know, what are the skills you need. So I think it would change project to project so. But for me right now, we thought it’s a large scale long-term, you know, five year programme of research so a lot of commitment. So we didn't for one minute think we could recruit some young people with – we wanted young people with some experience of the area we were researching, so long term health conditions. Either, you know, they have a long term health condition or they’re a family member of someone with a long term health condition. So some idea of the area to bring that sort of expertise into the project. 

But we didn't for one minute think that we’d get young people signed up and with us for the full five years of the project so I imagined a very dynamic changing group, was wondering how I was going to, you know, get sort of tasks done when it maybe would be a bit of a flux, a group in flux, maybe more of a consultation group, but kind of didn’t want it to be just consultation. But actually the young people that we recruited have stuck with us. We’re two years in now and it’s, you know, these are young people that have grown with us and the project, you know, as we’ve developed skills in the two years doing this job as have they. And they’ve stuck with us and continued to come. So actually it’s not been the way I imagined it and we have had to think you know, flexibly Okay now we’ve got a consolidated functioning group and that’s really nice. I think what I’m saying is you will approach the people that are right for your research project, but even if you do that imagining one thing, I think invariably it will change and you need to think flexibly about recruitment and skill mix and, you know, all the time now that we’ve got a consolidated group that I have to say is fantastic in terms of getting things, you know, a thread of work going and getting things completed building from one stage to the next, you know I’ve now got a really skilled up bunch of young people. They’re really committee to the project who can stand up and talk about it, you know in, in you know the public, you know in a public forum and it’s amazing. 

But equally for me then the questions become do we need, for this next job, do we need some new members, do we need a different vision, do we need a different view or, or will it be okay? And I guess we’ve just, we’ve always kept recruitment open, but haven’t sort of necessarily needed to chase that as much as we thought we would at first. So we have had new members coming in and some people leaving to go off to university and things like that but yes. So I think in terms of approaching people to be involved in your research there are many factors that will influence who you actually end up working with.
 

There is some unrealistic talk about how easy it will be to keep people involved. There are many competing demands on people’s time.

There is some unrealistic talk about how easy it will be to keep people involved. There are many competing demands on people’s time.

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Age at interview: 42
Sex: Female
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I think we have to acknowledge that we compete for people and if you're a young person you can be involved in like football or, you know you can have a job or you can be involved in a research project you know. I just, all this talk about community involvement and, I just think it's so unrealistic because of the wider frameworks that I just spoke about. So yes for someone who wants to become a doctor it's very good for them because it looks nice on their application to Oxbridge but, you know and for someone who's unemployed it might be something to do and a little source of extra income, although you know it's a bit tricky but yeah a voucher it's nice. But, you know most people's desires aren't in research involvement unless of course, you know it's seen as a sort of emancipatory thing kind of thing, this is my chance or a rebellion against something and I can see where they're coming from but, I just think there's something about being realistic because every time there's talk about involving people it's like, "Oh where are we going to find them?" and a lot of anxiety around it because you don’t know. 

So this kind of cold calling I did think people do it but it's a bit, you know. So it does seem a little bit unrealistic I think and it's the same people coming again and again. I don’t have a problem with it; I'm just thinking about those people like, or about people say, "Oh opportunity for," well maybe they're just coming because they feel bad about saying no. I know that my young people definitely said at times that they just came because they felt sorry for me because by then, you know we know each other and they're thinking, 'Oh poor [name], nobody's come to her meetings; well at least we'll come,' you know [laughs]. So yeah I think there's a fair amount of unrealistic kind of talk around it. 
 

Getting people involved is one thing, but finding ways – and funding - to keep them engaged can be a challenge.

Getting people involved is one thing, but finding ways – and funding - to keep them engaged can be a challenge.

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Age at interview: 32
Sex: Female
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And one of the things I think we're trying to do now is branch out more and get, you know, fresh blood so to speak and particularly try to get people who perhaps think PPI isn’t for them. 

But it is early days in doing that and I think, personally, I think being able to offer the support at the start is important because I think on other projects specific groups where I set up sort of PPI meetings or things, it has been quite successful in sort of reaching.  So in one city we were trying specifically to reach out to black and minority ethnic groups and we, you know, we managed to do that quite successfully. I think we got sort of five members who came in who were from different, specific groups.  But I wonder if then, the fact that we weren’t able to offer them a clear path in and so to say, "OK now if you want to stick with this, which we'd love you to do, you know, this is what we can offer you; this is how to think about whether you want training."  We talk a lot about the idea of like a buddy system – getting people buddied up with current members so they’ve got someone to talk to.  You know, for me, I think that’s where the gaps in, I think we'd get people who are interested and who bring, you know, these different perspectives that we do need. But then we haven’t got a way of holding onto them. 

And I think that is partly a problem with, you know, funding and things because if you're funded for specific projects; so you'll have your money to do your three steering group meetings with this group. There isn’t a pot of money there that says, "And this is for the coffee and the chats later on, to talk to them about whether they want to continue." I mean [involvement group name] itself, one of the big struggles still is funding… 

…For [involvement group name], you know, it's, there isn’t a pot of funding for sustainability for that group, despite its success. You know, it's still essentially having to, on a six monthly basis it seems, find a pot of money from different places and as I say, I think there is an obligation then from funders. I think, you know, if someone like the NIHR is going to say, "We want you to have PPI input at all stages before you get grants after the grants have finished," then there needs to be money there for it. 
Hayley and Jo had both worked with people who were already involved to help recruit new people.
 

Hayley’s team got a group of young people to advise on how to recruit other young people and what would make it attractive for them.

Hayley’s team got a group of young people to advise on how to recruit other young people and what would make it attractive for them.

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Age at interview: 30
Sex: Female
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So some of the stuff we've done which is kind of the background stuff for recruitment and things, we actually had four young people who we were already working with before I came into post, and we asked them about recruitment and we said, "OK how do we recruit more young people of your age to be part of this group? What is good about coming to the university or what do you we need to do?" And there was a few things that they raised which were really important for us in recruitment. So first off they said, "You really need to kind of look to go to youth groups and other areas as well. Go to schools but don’t try and base it all on schools because sometimes you'll just get head-boy and head-girl and you want to have a range of young people." 

Some of the stuff they kind of said to us is about how to promote it and they helped us develop all of our promotional materials, the young people, and we brought somebody in to work with them but they developed up all the material. So it was a little bit more engaging I'm hoping than what I could have put together.

They also made us aware of what we should promote. So they were saying, "You should promote things like if they're coming into the university that their transport will be paid for and make sure like it's paid for beforehand because they’ll be some young people who can't afford to initially pay for their own transport and reimburse and it," which is usually what's done within universities. So we always make sure that we book their tickets and send their tickets to them in advance. And also they wanted us to promote things like, "Oh what are we going to do outside of the research side of it?" So we go on residential and we go on trips with the young people and they were saying, "You should promote that bit as well." So make it clear to them that the aim of the group is for them to be a research advisory group but, also make it clear that it's not just work I suppose was their benefit to it so, so yeah a lot.
 

Jo thinks people are only ‘hard to reach’ because we don’t try to reach them. Her Lived Experience group ran a community day to get more people involved.

Jo thinks people are only ‘hard to reach’ because we don’t try to reach them. Her Lived Experience group ran a community day to get more people involved.

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Age at interview: 50
Sex: Female
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I think sometimes people are only hard to reach because you don’t go out and try and reach them. So I mean certainly some of the things we did to try and encourage would be to just run workshops that necessarily aren’t about involvement but by just trying to raise people’s awareness of research, health services research and how to look for good information and, you know, in a kind of fun workshop. So we’d work with maybe community housing associations or just run public workshops and that kind of gets people interested and involved and you’re reaching a different type of people. 

I think, I think there’s also as I’ve said I think the people that are already involved are the best people to reach other people so for example going back to this Lived Experience Group I worked with we obtained some funding from university as a lay group to run an open day in the university with the aim of that was to engage the members of the public with the research at the university. But we kind of organised it and ran it and hosted as lay people inviting other lay people to kind of engage with the research. So it was kind of a nice way of doing it and we combined that with a kind of a self-help bit as well so we had lots of experts to come in and talk to people and we had lots of community groups and charities as well, so it was kind of a self-help thing but also finding out about research and involvement in research so that was a nice way of kind of doing that. 

And we also do community events I think if you’ve got members of the public going out to, we’ve talked to other members of the public and just being aware of, of where you can do things I think sometimes and if you need a specific, I don’t know a specific patient group then just being creative about how you go out and reach people and do a bit of leg work. But often, you know, knowing people, knowing people because people know other people and they know other people and actually if you put a bit of effort into that, that’s often the way to reach people.
The need to find creative ways to get in touch with ‘hard to reach’ or ‘seldom heard’ groups (or ‘easy to ignore’ groups as one researcher put it) was a common theme. Several researchers had experimented with different models that did not rely on getting one or two people to come to a committee. Strategies included visiting existing community groups, support groups, schools and youth clubs, and enabling people to contribute through social media. (NIHR INVOLVE has specific guidance on using social media for involvement - see the ‘Resources’ page). Marian’s clinical research fellow, when they were setting up a group of parents for a study about pregnancy and birth, suggested they invite people to bring their babies along too. She described it as ‘brilliant… it actually allowed almost more freedom because it didn’t matter what racket was going on.’
 

In Sabi’s study of diabetes and food preparation in South Asian households, she worked with a local artist and local women to develop culturally acceptable research methods.

In Sabi’s study of diabetes and food preparation in South Asian households, she worked with a local artist and local women to develop culturally acceptable research methods.

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Age at interview: 50
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So there was very little fine grained or nuanced understanding about the relationship between, between food, beliefs about food, beliefs about illness causation, and those sort of things and the actual practices of feeding a family which happens to be in the south Asian community, a mainly female activity. But I was very much aware that the traditional or; well the interview based logic of I ask you a question, you answer me in return. It didn’t necessarily work, wasn’t necessarily culturally sensitive to that particular group and so I was trying to think about a way in which I could collect fine grained and nuanced data about practices around food preparation and beliefs and attitudes towards those in a way that didn’t involve this sort of question/answer type interview scenario which is ubiquitous in qualitative research, as any health related qualitative research. 

And so my PPI, if you like, was talking to south Asian women and in what ways they would be comfortable to share that with a white researcher. And I had recently met a local artist who lived in [place name] and whose parents had both died of the complications of Type 2 diabetes who was doing a Masters into the relationship between art and health and how art can be used for health. And we teamed up and developed a method that was based on her and other women's understanding about, you know, a helpful way of collecting data. And even though I didn’t call it PPI, I called it a community based project, because I didn’t access anybody formally through NHS because that was another way that people felt excluded because they weren’t necessarily comfortable to be recruited into a formal research project. They wanted to do something that was informal, that was relaxed, that was a women only environment in which they could laugh and share with each other their own experiences and in which the interview became a social, social occasion. 

As a researcher I relinquished a lot of control and the data I ended up with was terribly rich, but also terribly heterogeneous and difficult to analyse. But that was my problem, that wasn’t their problem. 
 

We need to think of alternatives to traditional committee structures to enable more people to get involved. Suzanne suggests social media can help.

We need to think of alternatives to traditional committee structures to enable more people to get involved. Suzanne suggests social media can help.

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Age at interview: 40
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I think and you often see that sometimes on adverts for things that you know – must have experience of committee work – and you sit there and think, 'But why?' And I think, I find that quite annoying but then it's sort of thinking. Again that probably taps back onto the; I think I made the point earlier that actually you're trying to involve people in existing systems and existing, you know, very kind of – professional's the wrong word - but you know kind of professional structures and, you know, rather than actually talking to them about how they should be involved, so maybe it's clipping on it a little bit and actually trying to adapt the mechanisms by which you will involve people. And I think that probably puts a lot of people off you know. 

They're just saying, "Oh God I'm going to have to sit in a room and be there for however many hours and they're going to be talking about I don’t know what," and I just think that’s hugely off-putting for some people. But I guess the point really is that you're looking at other ways of involving that don’t involve going into committees or that sort of thing so you're trying to get into a, you know, tap into, you know, harder to reach groups you know. Because, you know I would say that like men are a hard to reach group in this respect you know and it's sort of. And is that kind of, you know, taking the mountain to Mohammed a bit and actually bringing the team to them or what really; or actually getting people to contribute you know in virtual ways as well. I know there's an issue, it's like… I was just talking to someone with cystic fibrosis and they were talking about that, you know, infection's an issue. "I want to get involved but actually I don’t want to go to this, you know, meetings through, you know, two sweaty trains and goodness knows what else if I'm, you know, if I'm, if I have got a compromised immune system I'm not going to do it." But actually there's other ways they can do it, is that you know, is that Skyping or is it; you know Facebook groups or whatever. You know there's probably a thousand and one other ways of doing it.
 

Most PPI is stuck in a very traditional consultative format. Tina argues for the role of participatory research as a better way to give people agency.

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Most PPI is stuck in a very traditional consultative format. Tina argues for the role of participatory research as a better way to give people agency.

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Age at interview: 56
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So I think at first PPI was having somebody on your steering committee – or your advisory group – which was a recognition but it often doesn’t make a blind bit of difference. I mean if you’ve got one person on your steering committee who's a service user, whatever kind of service user. Actually somebody with a learning disability would probably be a much stronger person, actually, because they tend to cut to the chase, but whatever your health need, if you're fazed by a whole load of professionals who are, who know about research and are involved in the health service and you are faced with this research project and how are you going to be critical? How are you going to be critical? 

And you can see the whole process is getting developed and then people saw that that was an issue so there was the next stage – “well maybe we'll get together groups of patients”. And each time I can see things developing further and further. “Well this isn’t quite working – why isn’t this working?” And I can see things moving now nearer and nearer to participatory approaches where people have agency and have control in the whole process of research. So it becomes their research and they are very challenging about the process and you can see it in the INVOLVE literature now. I mean I think it's, what you see now is much more moving towards a participatory approach. But PPI is definitely still seen, I think, by the vast majority of more traditional researchers, as having somebody on your steering group, or asking somebody if this is alright – very basic consultation. And I still think that, when you listen to the discussions about PPI in Trusts, it's about getting more people consented into randomised control trials. That’s the honest – that’s how it's translated. 

But what I think is missing is the educational process of why we might do this and also, recognising that actually we are only experts in our own field. We are not experts in other people's lives, however many times we see a person with learning difficulties or Parkinson's disease or whatever, we are not expert in living that life and we have to engage with people to understand that. And actually even in research processes, I might think that, I'd like to think I've got some experience and some expertise in designing research, but I tell you, people with learning difficulties will go, "Well nobody would take any notice of that can we do it like this?" They come with a different set of knowledge that makes the design of our research much better as well as, telling us more about their lives. So I think the difference between PPI and participatory research is that in PPI people don’t actually really have agency as it's conceptualised more broadly. 

And I sit on, I sit on committees where I look at people's research to see if it's good enough for funding; and you see it and tagged on the front there’ll be this little bit, it's like well we've talked to the people; we've talked to people about this and now we're going to get on with our research. I think it's enormously helpful having people – patients and the public – on funding bodies, committees that are looking at recommending projects for funding, because they spot that a mile off. But I think even that they're not aware of the true depth that participatory research can reach. It's still very new, there's a lot of acceptance to be had of it. But that to me is the main difference – PPI can be done without any agency. It can still be about co-opting people on; consultation in the kind of, the terms where you just say, "Is this right or is this wrong?" And my way of describing of it - is it's the difference between if you're vegetarian like I am – you go and people say, "Well this is the vegetarian." Sometimes they say this is the vegetarian option, there's only one so, well then it's not an option is it? But, "This is the vegetarian choice – you can have this or this." But actually I might not want either of it so, and it's the same for all people with the menus isn’t it? You're either given a menu or you can help devise the menu and that’s the difference. PPI, it can be being given the menu, you might have as much choice as you like but it might not be what you want. And participatory is about devising the menu and actually because there's a group of you coming up with a menu that you would never have thought of on your own.  Somebody says, "Oh well I really like this," and you go, "Oh I've never heard of that." So we can have that now, and we've broadened and broadened our horizons – all of us – we've learnt together and we come up with something that we didn’t know we could even have, and that to me is the joy of participatory research. It's enormously, enormously time consuming and energy sapping, but if we're going to do research just let's do it properly.
 

Social media enable researchers to reach a much wider group of people. Sabi uses an online platform where people who want to get involved manage their own profile and respond to invitations.

Social media enable researchers to reach a much wider group of people. Sabi uses an online platform where people who want to get involved manage their own profile and respond to invitations.

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Age at interview: 50
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And I suppose the most straight forward thing is people who work – younger people who are in full-time employment who can't, you know, find time between two and four of a Thursday afternoon to be part of a steering committee. So it's not just people who are differently-abled or from different from different ethnic or cultural backgrounds, who are so called 'hard to reach' – it's people who are in full-time work or full-time education who will find it very difficult to participate in health research. So I think that’s an important point to bear in mind. 

So, so we need to think of methods in which, through which we are able to reach out to a much wider constituency who still has a huge stake in the evidence that we create and produce, and the way that we implement their evidence in practice. So, social media, digital technologies have opened up a really great potential for us to tap into people's voices. And so, another strand of my strategy involves the development of an online interactive collaborative platform through which we can invite, or get people to buy into membership of a panel, an online panel, that self-selects what area of research and implementation he or she is interested in. So what's happened in PPI structures, organisations people who have responsibility for PPI, is that you end up with the creation of databases, you know. And, “can you let me know who is interested in that?” You know, “really interested in kidney disease and we need to find somebody who's got a, who's got an interest or experience of this particular service or that particular service.” And you end up, you know, one person trying to keep a database administered and up to date and all that, which is seems a terribly inefficient way of involving people. 

So having an online platform in which people are in charge of their own profile is really helpful because if they’ve got treatment coming up or their care of somebody who is going through a tough time, [telephone feedback] they can just suspend all communication. So they don’t get emails when, you know, things, notification emails, so alerts, when anything is going on that they might be potentially interested in, and so they don’t feel guilty if they ignore emails - they can just turn them off and turn them back on again when life has become a bit more manageable for them. So that was a really important part of moving from the sort of database mentality to one in which people can actually choose and respond to invitations to become involved, rather than a consultant or clinician or some, a researcher saying, "Ooh I know somebody," and it just opens participation up to a much wider group of people.
 

Vanessa used one-to-one discussions with users to gather their views on a topic they might have felt uncomfortable talking about in a group.

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Vanessa used one-to-one discussions with users to gather their views on a topic they might have felt uncomfortable talking about in a group.

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Age at interview: 42
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So for example we've got another piece of work at the moment where we're working in a new area. We've never worked in this area before and at the heart of it is understanding women's experience of support during birth and labour. And they're vulnerable people, we're working with vulnerable people who are in quite difficult situations and we're looking at the impact of receiving support just before they have the baby, actually at labour, during labour they have a companion at labour and afterwards. And we're doing an evaluation of another charity that delivers this support.

And these women are, the service doesn’t have active involvement of the women that use the service so it's quite a new thing of thinking, 'Right here we are and how are we going to involve PPI in this evaluation study?' where the people they engage with aren't really used to even being involved and trust would need to be built, that getting involved with us is useful, worthwhile and safe for them.

So we've had to do it slightly differently in that study instead of forming an advisory group we sought to work one on one. We went and consulted women one on one rather than bringing people together as a group because they might not feel comfortable in a group. We sought the advice of four experts – women experts. Again we took our patient information leaflet, we took our… we took all our materials, all our publicity materials. We talked to them about what we're trying to do. We took the interview schedule we were planning as well and said, ‘Does it make sense? Do you think people will engage with us? What can we do to help built trust and encourage women to tell their story as part of the evaluation?’

And the service is very much built on trust and really helping the women who are in, you know got complicated life situations. But they really need to know the impact of this service. So we wanted to really find out from the women how they felt we could best interface with other people in similar situations as them. So we did it one to one and that worked quite well. And we're soon to come together as an advisory group bringing those four people we engaged with individually together. And then we'll think about for the last meeting, how we engage with them in terms of feeding back some of the results. So that is a very different way of engaging than we had done in the other projects.
Researchers still had concerns about whether they were working with a sufficiently diverse group, and this is an issue we look at in more detail in ‘Representativeness and diversity of people who get involved’.
 

Hayley’s young people’s group see themselves as quite diverse, but they are mainly white. But deliberately targeting people from different ethnic groups might feel tokenistic.

Hayley’s young people’s group see themselves as quite diverse, but they are mainly white. But deliberately targeting people from different ethnic groups might feel tokenistic.

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Age at interview: 30
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I had a question from a researcher actually because I do some training. And as part of our course we did some training with some researchers from outside the centre. I had a question about the diversity in the group and they were saying from the film it looks like the group is very white and there's not that many people from ethnic minorities or other cultures. And I suppose, on reflection, I thought to myself, 'Well yeah actually.' I suppose this is something where young people kind of select themselves and the people who select themselves are mainly from sort of white Welsh, white British background. And when I've spoken to the young people about diversity it's interesting how they say that they're completely, that they feel that they are a very diverse group and I've said, "Alright then how are you diverse?" Just trying to get their idea of diversity and they said, "Oh well so and so's really into this music and is a ‘this type’ of young person, and so and so's not. These young people really like; some of them like to do like exercise and activities; these young people don’t." So they see themselves as diverse in a different way so what we would think of diversity, which I have found really interesting, because I thought, 'Yeah I suppose you are.’ And as a group they don’t, they don’t think, 'Oh we're just young people' – they see each other very differently which I think is something we don’t, maybe as adults, think. 

We would, if you met the group you might think, 'Oh they're not a very diverse group,' and then I can think, 'Oh yeah they are.' And even things like they say, "Oh we're into different things; we're into different types of music; we're into different types of fashion, where we are representative because young people are different on these ways as well." So that’s been interesting.

That’s very interesting because there are sort of sub-cultures that are very important to young people.

To them

That don’t necessarily concern us as adults.

Yeah

Which is really interesting. And in terms of the ethnic diversity, and so I mean have you tried to recruit people from ethnic minority backgrounds in particular or?

Not in particular no. Because we do our recruitment through youth services and it goes out to sort of youth projects and youth development programmes, it's kind of the young people are self-selecting themselves. I think it may be good for us to try maybe to, but I wouldn’t want young people to think that we're recruiting them because they're, because we want to make the group more diverse. And that again can be quite a contentious issue for me because I think if they're interested as young people then they’ll put themselves forward. What I wouldn’t want a young people to feel is we've targeted your group because we want someone from your culture or someone from your ethnic background to be part of the group because then we're more diverse. So yeah I think it's something that maybe we should think about a little bit more.
 

It doesn’t matter what the person’s skills or background are so much as what they have to say.

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It doesn’t matter what the person’s skills or background are so much as what they have to say.

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Age at interview: 32
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I don’t know if it's about a set of skills because, as I say, in my ideal scenario it's just people with the disease or the condition so that could be anyone. You know, like I remember when I was doing [a previous study with patient reps who had experience of the condition] study, I went and interviewed a bloke who'd - he was forty-odd, he lived with his mother in this council house on this horrible estate, and like he'd never worked, but he was so insightful and he had so many interesting and articulate things to say. And he could equally be a patient rep. And I think it just depends on the person's personality and characteristics whether they want to come and contribute or whether they want - you know, it's not really about set skills, I don’t think.

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