Researchers' experiences of patient & public involvement

Learning from experience of involving patients and the public

In ‘training for involvement’ researchers discussed their training needs and preferences. Alongside formal training, researchers discussed the importance of informal learning by experience. This included both their own learning by doing involvement (including learning from mistakes) but also what they could learn from observing or talking to their peers who had more experience. Several people described how their understanding and attitude had evolved over the years. Valerie said, ‘I feel like I’ve grown from someone who wouldn’t even know what PPI was’, to someone who now makes it ‘pretty much the first step of everything you do’. Vanessa noted that this was a continuous process: ‘we don’t have all the answers and we’re learning as we go.’ Suzanne said, ‘It just doesn’t feel real until you’ve done it.’

David describes how experience of involvement has changed his thinking from scepticism to seeing real value in it.

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Age at interview: 49

Sex: Male

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So early trials we tended to have what I would call tokenism for PPI where, as researchers and clinicians and academics, we felt we knew best and set research questions; set the whole scheme of research and, as an afterthought more or less, thought we'd better have a patient or somebody who's involved on it on the other side, almost rubber stamp it. And that process involved picking a friendly patient who perhaps one of the clinicians or myself had seen, and bringing them in to sit in a committee meeting, probably without the expectation of a great deal of involvement. It was ever so slightly patronising I suspect, and it didn’t embrace what we now know as proper PPI.

I'd run a trial in the past where we operated under that sort of sentiment. It got funded and it just shows you how things have changed, but we've moved a long way from that. More recently we've just put in for a new trial on anterior cruciate ligament deficiency, and the process has been considerably different. We started off by, before going anywhere near any of the clinicians, which we did do subsequently, going to patients and asking whether they thought the question that we felt was important, was important and they would share it. And right from the start it's been a sharing of whether this is correct or not. Once that’s been done then we of course to further clinicians and went to a wider field which is still part of the PPI process. But it was soliciting opinion at a much deeper level than we've ever done before. And the people who were involved in that were not there as to having – so it wasn’t lip service, it wasn’t somebody just sitting on a committee, but we really did need to mine their knowledge and their information right from the question phase, how the trial might be run and to the point of setting out the measures. And outcome measures being what we should measure which would dictate whether the treatment had been successful or not, and that’s really important. As academics and clinicians we tend to think we know what is important to patients, and that’s often not the case, so we put forward a form or an assessment or some sort of questionnaire, or even an objective clinical assessment, and they’ll probably balk at it and say, "I'm not sure what you're asking; why's that important?" So, we have to change our mind and maybe think about something different. For me, it's been helpful because I've been involved in developing some of those questionnaires, and it makes me realise that what we think we know we don’t, and the patients often tell us something entirely different.

Felix has been on a learning curve with involvement. He worries about it being done badly but recognises people learn by doing it. It has to be hard to be a true learning process.

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Age at interview: 36

Sex: Male

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Over the years since you’ve been doing it has it been a trial and error approach or how have you sort of come to do the kind of PPI you do now?

Yeah, yeah. I mean, yeah and I think it sounds a bit smart because here I am, you know, I didn’t know anything about it three years ago and then, you know, clearly it's a result of a learning curve this where I am today. And it's probably, you know, I want to allow other people to make those. You know, when I'm being so harsh about the unethical stuff, you know, I think I'm talking about the gatekeepers that could potentially have an impact on good PPI and could steer those things in a helpful way. Yeah because you want people to make those, and almost you know, you know I've got, I had quotes from people that say, you know, “good PPI is the PPI that hurts” you know. It has to and I would probably agree to that you know. It has to be a little bit hard sometimes you know, for it to a learning process. So, you know, maybe there is something to be said for people to just go and do it and burn their fingers. But I think it has the risks that they then walk away from it and kind of come up with a compromised version which says I prefer to keep them at a distance so I'm going to delegate it into a PPI group that I can consult at my convenience or not. And then follow on their advice or not and I'll make that decision and all the power's in my hand.

Yeah so it's, you know, it's clearly a learning curve and hopefully to the, you know, to the better but, but that’s as diverse and as complex as people are diverse and complex and how they approach their lives and lifelong learning really and how much. Probably the more senior you get the less, you know, the more you have an established system and the less or the, or the easier, you know, to reduce complexity, the easier it is to stick to a routine and how you deliver. But like, you know, like I say I think it's a source of continuous freshness and validation, you know. Hopefully people would see it like that, you know, to say, "Well does that make sense, you know, what I'm doing?" and you know to, you know, their understanding that it enhances and it adds value to anything you do if you allow that to happen and that’s mm yeah. So yeah, and maybe I should you know; maybe people must do that and hopefully it'll change them for the better.

Stuart has learned you have to be prepared to manage difficult conversations when you don’t agree with people, and to accept compromise.

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Age at interview: 59

Sex: Male

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So the thing about this stuff is that it is very open and very open ended and sometimes the people who become involved are not easy to work with and in not acknowledging that is stupid, it seems to me. And sometimes it’s because they, you know, you may get people who have particular obsessions and their obsessions may be to do with what you see some of those people come with ideas about the causes of things which probably don’t chime with what the rest of us think. And may want to just talk about that all the time yes and that’s really difficult and you have to kind of allow for those really difficult conversations. So that’s kind of the worst end personally because it’s really difficult when somebody is in your mind completely off beat, but that shaves gradually into the most difficult bit where all of us have to learn a lot. Which is that if you’re really going to have people involved you have to understand that you don’t know it, because when you first start doing this stuff, if I’m honest, what basically happens is you go in and you think well I know the result I want how do I make sure I get it okay, that’s what you start off doing. And then you learn it doesn’t work like that, it can work like that but then it’s, you’re wasting your time. So actually you have to learn that you may come up with results which weren’t quite what you thought and sometimes you may end up doing things that you actually wish you didn’t do it that way.

Gail learnt from some early guidance about providing glossaries and giving people a job description, but it has been a steep learning curve and there is still more to learn.

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Age at interview: 42

Sex: Female

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It’s a long time ago when there wasn’t much written about it and we really had to find our way. So I’d say probably 2002/2003, started to do some research around young people with diabetes. So at first young adults with diabetes, 16-25, commenting on the services they’d received to develop our services within the healthcare trust where I work. And I felt strongly that, you know, that the whole research was qualitative so the subjects were young people, the data was going to be from young people, so I felt really strongly that actually we needed young people in the governance of the research as well. So started very early on and sort of very small steps at first and had two young people on our steering panel. And then working out pretty much for myself how to go about that. INVOLVE was then called I think Consumers in NHS Research or something like that. So there was some early guidance from them which was really helpful. Things like, you know, providing a glossary of research terms which I have to say was useful for the, you know the professionals around the table as well as the young people, you know, so that was a shared document as soon as I created that. And thinking about, you know, a job description for young people too, so that they could come to the table understanding their role.

But again equally it was a very useful document for the professionals to then understand what the young person’s role was, made the professionals have to think more carefully what their role on the steering group was to be able to explain it to young people. So it was, it was a steep learning curve and I'm sure we didn’t do it all right first time round, but that’s where, where I first started thinking about this and then I hope that my practices developed from there. So now in the research project that I’m working in now we have a group of, it’s about 20 young people signed up to the group about eight to ten attend regularly our monthly meetings and they’ve been involved in the planning defining the research questions, designing the research tools. They’re in the warp and weave of the management and governance of the research project. Again I'm sure we’re, you know, not getting it all right, it’s still a very, you know, there’s a lot, a lot to think about and as researchers we’ve still got to get some stuff ironed out and get it right. But I hope my, my vision and the scope of what I'm doing in terms of involving young people has grown over the years, so that’s where I'm at now.

Researchers described a wide range of things they had learnt over time, from basic practical knowledge around organising catering, payments or arranging access to meetings; to the need for flexible and creative thinking about how to involve people; and understanding at first-hand the value involvement could bring to their research.

One of the practical things Hayley has learnt has been to adapt the catering for the young people she works with.

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One of the practical things Hayley has learnt has been to adapt the catering for the young people she works with.

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Age at interview: 30

Sex: Female

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Practically I suppose one of the things has been the food. And initially we've, we had a buffet which is run through the university and I've actually met with the university catering staff now because the young people have been like, "No we don’t like this; we want this, this and this". And we're really lucky that the university catering staff have been really susceptible to developing up a, our buffet. So, just for example – bit random, off on a tangent but – some of the young people said, "They keep sending us things like hummus sandwiches; we don’t want hummus and cress sandwiches; we just want a ham sandwich, that’s all we want." So we've kind of, those practical things are really quite important to the young people though because they come here between twelve and three so we always offer lunch and you have to make sure that those things are right, which I didn’t – we thought about the buffet and we ordered a buffet but I didn’t really think that we'd have, well the young people being like, "Right we need to sort this out; this is," and they actually wrote a list of things. "This is what we want on our buffet and we can't have this and we can't have that," and we're really lucky that the university catering have been happy to do that [laughs].

There was little formal training available when Chris started. He has learnt by trialling things and working out what worked well and what worked less well.

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Age at interview: 48

Sex: Male

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There was very little formal training. It was learning on the job and I think, I think the organisation's been on a journey in the last five years. I think there were some people who were ahead of the game and knew more and the rest of us have kind of caught up and tried to push it forward in our different realms. I mean I work in childhood disability research and so its families with disabled children, and other people have different challenges working with different, different groups.

Which are, are just different challenges, you know, whether that be working with people with mental health issues or elderly. Each area of health services research will have its unique challenges. So ours has been really sort of learning through trialling things and things that have gone well and the things we've learnt not to do.

Jen has learnt that involving people earlier would have saved her a lot of wasted time in making the information for participants more understandable and appealing.

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Jen has learnt that involving people earlier would have saved her a lot of wasted time in making the information for participants more understandable and appealing.

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Age at interview: 29

Sex: Female

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So that was really helpful for us, I think, coming in from an academic starting point where you’re used to scientific writing and you’re used to writing for journals and not necessarily used to writing for a lay audience, you tend to err on the side of complexity rather than keeping things simple and to the point And I realised in hindsight there was a lot of unnecessary description and overly complex words, so in future in studies that I’m running now I keep the information sheet, you know – the information sheet contains a lot of information, but it’s laid out very neatly. There are pictures where there need to be pictures. But the invitation letter is always very simple and to the point so the people will actually go on to read the invitation, the information sheet. Yeah, and we changed the format of the information sheet to the double sided A4 colour sheet of paper rather than an A5 booklet which people just weren’t opening. Yeah, so it was a really helpful experience, and I wish that I had run something like this at the beginning of the study, because it would have saved me two years’ worth of work…

In the long run yes, it would have been more of a time saver if I'd done that at the very beginning during design of materials before we’d even submitted to ethics. I mean it would have, it would have saved us months if not years of time trying to recruit from participants who were not interested in taking part because the study didn’t, as it was presented, didn’t look very, very appealing.

Ann’s first experience of involving a patient convinced her it was invaluable and taught her the need for flexibility, but she would now always involve more than one person.

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Ann’s first experience of involving a patient convinced her it was invaluable and taught her the need for flexibility, but she would now always involve more than one person.

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Age at interview: 55

Sex: Female

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And we were keen to hear the perspectives of patients, and we wanted to get somebody involved in the steering group to advise on what were the issues, how we captured that data. So, we had this very, very lovely lady. I think this was before INVOLVE, there were no good practice guidelines about doing it at that point. But, I don’t know how we did it; we managed to get this lady. Oh, it was from, it was through Asthma UK, I think, we got them through a charity.

And she was great. She was really fantastic. She'd had experience of emergency ambulance attendance for a life threatening asthma attack. She'd got continuing COPD or emphysema, so she was not in very robust health, and so we had to take account of that, and she couldn’t always come to the office, so sometimes I'd go to her house. And so we had to be flexible in the ways we included her in the research. And it just, it was really amazing because there were, sitting round the table for the steering group, we had A&E consultants and paramedics and an asthma specialist nurse and a whole variety of people from the ambulance service, from the hospitals and elsewhere. And they'd be talking about what we should be measuring; what were the important things. And then she would say something like, "Do you know what it feels like to be asked to blow into the peak flow measure when you think you're not going to get another breath?" And for me that completely grounded us in what we were supposed to be, the actual experience of patients, and what we were supposed to be concentrating on…

Looking back now, we had her on her own and we should have had, you know, another person supporting her. But she was incredibly happy to be involved and I supported her personally. So we became, we bonded, you know, we became quite close. I haven’t stayed in touch with her, but during that period, so I know that she felt very supported. But it did require quite a lot of bravery for her to speak up in those meetings when, especially the medics, were talking about the more, well I suppose the medical and clinical aspects of care. And it did require bravery to say, "Hold on a minute, you're forgetting about what it feels like." And so now we would haven’t had her doing it on her own, we'd have, we'd facilitate that much more in a much more structured way. And we wouldn’t have one person, we'd have two and we'd be paying them, we'd be following the good practice guidelines. But I don’t know if actually all those guidelines actually improve the quality of the input we're getting because that was fantastic input. And she fundamentally changed certainly the interpretation and the write up of what we did then and we published that. So I think that she made a contribution to the way we did the research and the way we interpreted the research.

As Chris and Jen noted, learning from mistakes and working out what does not work can be as valuable as positive experiences. Some researchers also talked about learning there were limits to what they could expect from involvement.

It’s important to be open about times when involvement does not go well and to learn from mistakes. Just doing it is the best way to learn.

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Age at interview: 49

Sex: Male

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So I think for researchers I think it became some, it depends it can work really, really well but I think there can, it can be the case that sometimes it just doesn’t work very well. I've been in projects were it’s really felt like there’s a lot of tension between what the academics are saying in the project and what the patients and members of the public are saying and people are getting angry or frustrated with each other. And it can feel like you’re putting a lot of time and effort into managing this process and maybe at the end of it it’s quite hard to see where the benefits have come from that and I think obviously it's one of the things, one of the dangers is that we only report what went well and not what didn’t go so well. And that’s hard for anybody to do saying we did this and it wasn't, it didn’t work very well and people got fed up and so on but it’s probably you learn more from those experiences than you do from those that went well or at least as much from those ones so, it’s really important to talk about those. But there are clearly times when that happens, that’s very difficult for everybody…

I do kind of think it’s really important to people start, when they start off with Patient Public Involvement to actually start getting and doing some Patient and Public Involvement quickly because that’s how, in a way that’s how you learn. And if I go back to giving an example of the prioritisation process so it wasn’t trial and error in the sense that we were very keen that, we were very sure that we have commitments and making sure that they would be at least some research projects that came from patients and members of the public and we were also very keen that they should have an input into judging not just the patient initiated projects, but all the research projects whether it be from academics or whatever. The first time we did it, it was all done to a very short deadline, so the papers only came out like the day before the meeting and some people didn’t pick up the e-mail or whatever so they got, they got them on the day the papers that went with the questions so there’s a team heading did some background research on the questions to, to help them make decisions but it was written in not the most user friendly language had a lot of jargon and stuff in it. never the less, I mean people did come back and I think that’s because they could see, I mean we were very open and saying we are doing this for the first time and so we said, you know, we are making mistakes and we know we are making mistakes, but you could go on forever postponing doing it and in a way we thought this is where we are and we can get on with it. And I think what was really valuable was that we were very open about that so we weren’t trying to pretend anything other than that we were trying something out and there were mistakes. but I think people felt very, why people came back was two, people felt they’d been involved right from the very beginning so it wasn’t that something had been set up and run for years and then they were brought in, they were in there from the beginning and because they were making decisions about which research projects we would take forward I think there was a real sense that people very genuinely being involved in the decision making process that mattered. And then when we came to do it a year later when everyone, well six months later you know documents came sort of at least a week in advance and I think we originally had a glossary of jargon to go with it and then we actually had a subsequent version decider, actually don’t have glossary just don’t use jargon in the first place so we did that. then there was the innovation of, of saying not everybody has to read everything why don’t people volunteer to lead on a couple a of, of each one so everybody shared the burden around in that kind of voluntary basis and maybe helped to give people the confidence to do that. Another interesting thing was that the whole of the Patient Public Involvement group would look at the, what was the shortlist of questions, they get more detailed look at and would make decisions about which ones to vote for and then they sent a couple of delegates to the group that makes that decision and they were sent originally with quite a strict mandate, these are the things we want you to vote for.

It’s important to be clear about the limits to involvement and to be realistic about what people can expect, so neither they nor researchers waste their time.

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Age at interview: 47

Sex: Female

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You do have to look at what other people have done before. You know there's no point in keeping reinventing it. So no I don’t think that’s too much of an issue. One of the things I think which isn’t, which people tend not to go into enough, including writing the funding proposals, what they're going to do, is really thinking about what the different processes and structures are for, you know what you're trying to achieve by that. Which is important not to waste your own time, but it's also important not to waste other people's time. Because if you know, someone gets involved as a lay person sitting on a meeting and they're thinking, 'Well why am I here?' then it's demoralising and makes no sense. So yeah it's, I mean it is tricky because you’ve got to be kind of realistic about why people are involved, but I mean that’s part of the recruitment process and bringing people in to really set out this is what you may have a chance to influence; this is what you won't have a chance to influence. These are the points where you should speak up you know to really work with people to spell all that out.

It isn’t always easy involving people in writing lay summaries; Valerie has learnt that it’s OK for the researcher to do the first draft. It helps to learn from other researchers.

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Age at interview: 39

Sex: Female

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And over the years when you’ve sort of been doing PPI, have you been, is it a sort of a trial and error thing that you learned to do it that way?

For me it has been, yeah. I think for an example, like a, an example would be when we've experimented with doing, with writing plain language summaries which we produce for our research projects and our papers. And we went through several iterations of trying to have meetings around that and working with different groups of parents to figure out what is the best, what is actually working, you know, and we'd be, the first meeting that we had we kind of. I think everyone was a bit shell-shocked at the end of it because unfortunately we started with quite a tricky one; we started with a systematic review [laughs] that we'd produced and it's again it goes back to your earlier question about what is PPI? And we had gone in with let's try and write this from scratch as a collaborative; have a meeting, we'll talk about it and of course you get into a room and you’ve got a systematic review in front of you and you’ve got a group of people around the table and everybody goes, "Well it's probably all important really isn’t it?" So yeah, and through, I think, a couple of other project meetings after, so from that what we did achieve was just sort of have a template about.

So we wanted a little box with key messages and people may not read any more than that, you know, we wanted to just have big bold questions – what do we do? Who did it? Who said it was OK? You know, like a very much, similar to an information sheet for a study in a way, you know. And then we took that forward to the next time we needed to do a systematic review and realised that actually sometimes it's OK for the researcher to write a first draft. Somebody's got to write the first draft and if one of the parents in that room said, "I'll write the first draft," then that would be great. And if they don’t that’s OK [laughs], it's kind of about opportunity to do it than forcing the issue really. Yeah so I think that was one where we, yeah it has been trial and error and particularly involving the systematic reviews I think are quite, and not just in the plain language aspect of it because we've... I had a group of parents who were involved in producing that in the whole kind of conduct of that systematic review and that’s not something that’s always done. And again that’s lessons learned from that one we've used again in another, another systematic review that has been done on a slightly more, possibly slightly easier topic to do about here. So yeah, I think it is and I think some topics are again more accessible than others for that as well. So it is a learning curve for us isn’t it and I think what's great about the PPI conference and INVOLVE and everything like that, is that you can all learn from everybody else's ‘learnings on the job’ so yeah.

Although there was considerable support for ‘learning by doing’, there were also many comments about the importance of learning by talking to other researchers and observing the involvement practices of more experienced colleagues. Being in a supportive environment was also felt to be important. Sabi suggested what was needed was more a community of practice than formal training, and Suzanne commented that ‘You’ve got to give people the experience of applying it and seeing how it feels, but also there’s got to be a system and structure to support that’. (See also ‘Organisational support and leadership for patient and public involvement’).

Researchers will learn best about involvement if it’s taught early in their career, and they can observe others with more experience first before they are expected to do it.

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Age at interview: 52

Sex: Male

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See it in action essentially. You know it's the old see one, do one teach one approach actually applies to very many things, and I think that applies to public involvement. So, the best the way to learn about what involving patients and the public can bring and why it's a good thing and what it might do is to observe it.

You know so, if you have a researcher however senior, who's never involved anybody before get them to be an observer on a patient group or to just, you know be a buddy or an observer on a research project where patients are being involved and see it happening. Just simply observe and see what they think and that’s the best way; it's probably the best way for anything really is, you know you need to observe and experience something before you do it yourself. I think it's an awful lot of, it's an awfully big ask for anybody to say, "Right you've never involved a member of the public, go away and do it on your own piece of research." Better to do it in a safe environment with somebody else's research first. So I think all people who are training to do research in health, in health and social care, should be taught about public involvement and should have an opportunity to experience it…

It can only be normal practice because people want to do it and it can only become something people want to do because they see it adds value. People do things because they see it works and that’s the ultimate goal. I think you can't force it to happen, but I think if you can introduce as many people to the concept and bring them along. So everybody's got to go on that journey ultimately and I think it's about the best ways of doing that are teaching it early. So, if you want something new, something different to happen then teach it from the earliest possible time. So it goes back to, you know things we want in our population are taught in primary schools. So I'm not saying we should be teaching public involvement in primary schools but, it's about, you know and anybody who wants a career in health, health and social care, that involving the users of health and social care, whether that’s in service development or research, is just the fundamental part of their basic and post-basic training. You know we teach medical students and non-medical students about lots of things and it should include involving the people they're, you know they're treating and researching.

So that’s ultimately the way to do it is to make it part, just you normalise it you know so it's part of teaching; it's part of service delivery and it's part of research and linking together. So, there's a lot, there's probably more people involved in service, improving the service delivery, than there is in research but actually the two don’t link together very well. So, part of what is, you know part of what would make public involvement normal in health research, would be by linking it to health care so that you can see the place – both the research place has in healthcare – and also the place that service involvement, so user involvement has in healthcare and research. So it's linking those things together.

Hayley’s advice is to realise you’re not alone and to learn from colleagues about their experiences of involvement. Good case studies might help convince sceptics.

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Age at interview: 30

Sex: Female

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For researchers. I suppose my message for researchers would be don’t think you're alone in doing this. There are people out there who are already undertaking involvement with the public. And speak to as many people as you possibly can. Ask them how they're doing it. If this is your first time of doing it, ask them about the ways they're doing it and what have they found has been the barriers for them and what has been the facilitators and is there anybody – talk specifically about the project they want to do – and is there anybody they know who's an involvement co-ordinator who works with this public, because it is about targeting the right public. I've had three people recently come to me and say, "We want to do this involvement work with young people; we want an advisory group but we're not really sure about how to do it and I've been more than happy to speak to them because I think it's important for us to involve more people. So yeah I think if it's your first time involving people look who else is out there, contact people, ask them how they're doing it and just get as many tips as you can.

That’s great. One thing that’s just popped into my head there was, how would you convince people who are sceptical about involvement – what would you say to them?

I would give them an example. I would try and maybe talk to them about the example I talked to you about today about how our researcher developed it up and how he's changed his project. And there's other examples like I suppose I would talk about the year six pupils we work with who didn’t understand ‘peer pressure’ in the question. And I would give them examples where I would try and let them know that this has made a difference for the better and yes, these are just one or two anecdotal things from me. But these are real examples of how it has helped people yeah I think. It's always difficult I think though because if you are sceptical and you don’t have any reason to do it, if nobody within your line management is pushing you to do it and you could quite easily do the research quicker by just doing it yourself yeah – it's a difficult one.

Sabi worries that training in involvement risks being a ‘reductionist, cookbook’ approach. It’s better to create a community of practice where PPI is ‘the natural way of operating’.

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Age at interview: 50

Sex: Female

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Yeah it, training is, you know, the concept of training researchers to do PPI and training PPI advisors to, to support researchers is really hard. Because you, the danger always is that you end up with a very reductionist cookbook type approach to, because you’ve got to talk about, you’ve got to talk about this, you’ve got to talk about that, you can't leave out this, you can't leave out that. And so you end up with something that’s fairly structured. And I do, however, think that letting people use online – there's some fantastic online resources – and Healthtalkonline for example, is one of those resources that get researchers, for example, used to hearing people talk about their illness experience or their experience of services or their beliefs about health and illness. I think that’s really important because often it's about choosing the right words, using the right language to communicate with the other, you know, the other being the patient or the researcher as far as the researcher is concerned, as far as the patient is concerned, or the involvee is concerned.

So again digital technologies have made it possible for people not to be observed and to independently access and use resources to expand their understanding and their awareness. And as I said to you I think right at the beginning, I don’t think involvement practises rely on formalised knowledge – that is important but it's necessary but not sufficient – and that some of the awareness and the informal knowledge needs to be harnessed as well, and how you do that is really difficult. But I think, you know, I come back to my point about developing a supportive infrastructure for PPI which involves establishing ongoing continuous collaboration and partnership where, you know, you might have internships; so you might have PhD students or junior researchers work with groups that have been involved in research or are involved in research, so you're developing capacity. So training becomes less about developing particular skills and expertise – it's more becoming immersed in a community of practice which is centred around patient focused research or, you know, lay person focused research, in which case training is less about intellectual development or skills development.

It's more becoming immersed in the culture in which this is what you do and this is in the way that research is done, implementation is done. Do you see what I'm saying – it's much more, it's much more holistic than just looking at people's training needs. People need to become part of a culture, part of a community where that’s the natural way of operating, there is no other way but involve people and these are the people. And so people will have met people who they can involve so that it doesn’t become a thing, "Oh, you know, who do I contact?" – it's, you already know because you’ve already worked with them and it's natural to go back because they’ve become your friends or, you know, you’ve done some, you’ve done some activities with them previously. And I suppose that’s where you want to get to in order to develop true partnerships with local communities and patients.

There is little consensus over what good involvement looks like and a lot of reinvention going on. Suzanne would like to see more opportunities to learn from others’ experiences.

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Age at interview: 40

Sex: Female

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I think there's a bit of awareness raising needs to go on. I think it's something that’s. There's a lot of guidance out there but that’s because we're looking at a bunch of it for various other reasons recently and there's a lot of guidance, but actually not a lot of experience out there which is probably why it's something quite useful. So I think that’s the, that’s the trick really because as a researcher you read this stuff and, you know you read a document and it's got a link into it, another thirty page document, a link to another thirty page document. But actually where's the example of someone who's done this and the difficulties that they had and all of that sort of business rather than, I don’t know, than just this you know, voluminous document with links in it. Yeah so I think there is, and I think there is – it's a difficult one though isn’t it because it's sort of finding enough capacity amongst researchers who have involved people to kind of delivering something, so there's an issue around that and then there's obviously there's so many different schools of thoughts about what's good practice as well and so I think there's an issue there as well. Because you know somebody might be, you know, saying, "This is amazing blah blah blah." But actually, you know there’ll be another group over there who think this is the worst idea since sliced bread. So I think the idea is it's quite a fragmented area, that’s been my sort of take on it.

And I think it's, so it's quite hard to get kind of consensus over things you know and whether you should be getting it or not I don’t know actually but, you know, but there's sort of, there's lots of kind of, I, it's a bit like a cottage industry type work going on so it's sort of people are, you know, kind of reinventing wheels in little silos when not actually talking with one another enough I think because you're sort of - And actually there's probably a lot of knowledge out there but it actually needs to be shared, or there needs to be forums or mechanisms by which they can share the main - I think a lot of the kind of involvement networks like, obviously like INVOLVE, and then there's the one in Wales as well, they, you know they used to do, have training, but it's something that there's not been a lot of money for, I think that’s been an issue as well. You know so it's sort of, you know and some of the work that other colleagues do here is giving advice on that to, you know, to researchers within the university who are, have got that bit in their application and they think, 'How do I do this?' So I think it's something that’s going to be quite hard to implement without funding, but also actually researcher's awareness that it’s something they want to invest their time in as well.

Tina has learnt that you can’t ‘force-feed’ people; they have to want to know what you’re telling them, whether they’re colleagues, students, or people you are involving.

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Tina has learnt that you can’t ‘force-feed’ people; they have to want to know what you’re telling them, whether they’re colleagues, students, or people you are involving.

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Age at interview: 56

Sex: Female

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And actually I learnt that in my Masters dissertation when I said about working with parents, because one parent said to me at one point, she said, "Why are you telling us all of this?" She said, "I don’t know want to know all of this, why are you telling us all of it?" And she was really angry with me actually, it was really upsetting. And I realised I was telling them all of it because I thought she needed to know and it would help her, but actually what I hadn’t taken into account, is where she was in her own knowing at that point. So I was trying to force-feed her, like we do with students sometimes. Force-feed them the information they need to know and they’ll be happy with it, but actually you cannot, you have to go at somebody's pace. And I think that is very, why I really think it's best to work with good colleagues… I've been very lucky with my colleagues and kind of colleagues that will go, "Ooh what you did then? You started telling them rather than sitting back." So having colleagues watch you who are used to facilitating. But it is, it's that sitting on your hands business is so vital to it because people have to learn for themselves. That’s what it's about – participatory research isn’t me doing it; it's them learning so that we can do it together so, yeah it sometimes you want it to go faster so you have to have a lot of sit-back.

Some of the researchers we talked to were now using their own experience to teach or advise others, and many recommended attending NIHR INVOLVE conferences as a way of finding out more; as Valerie said, ‘What's great about the PPI conference and INVOLVE is that you can all learn from everybody else's “learnings on the job”.’

As well as learning from their colleagues, Vanessa and Rebecca were among those who talked about how much they had also learnt from the people they were involving.

It’s important to give user researchers careful supervision and support, but Vanessa feels she has learnt a lot about research from working with them.

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Age at interview: 42

Sex: Female

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And also if we're getting to a point, as we do, where we are asking them to use their lived experience in interview situations and sharing that, and hoping that that then helps to create an environment and interaction where somebody else then shares, there's quite a lot of responsibility going on within that, and that can be very emotionally challenging for both participant and the individual researcher. So having good supervision structures, making sure you're really explicit with people beforehand that this is what we're doing and the research that we're doing is really, really important. So we, we put, we really try and be very careful about how we supervise people, touching base with them really regularly, getting people to write diaries and reflections. People in those roles are using their lived experience in research to go out and collect the interview data. We're getting people to write careful notes – we meet afterwards and we also get people to write careful notes afterwards. But for me I'm responsible for all this so, you know it is draining, it is emotionally draining and I, and I, but I'm very inspired by it and I don’t ever come to work thinking, 'I wish I wasn’t doing this.' I really feel that this is really important work.

And, you know we had, we have what we called a lived experience advisory panel and we had eighteen people in a group the other week and I just sat in this group and thought, 'These people are so talented and I learn so much from them. They are, they know, not just about lived experience but about research as well; these are really, they, it's just fantastic to have the opportunity to sit and spend two hours speaking to this group and they're helping to try and shape this project.' And it, you know I just feel a great privilege that we are, we can do this.

Rebecca has always found that if you are open and friendly with people they will help you work out the best way to involve them.

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Rebecca has always found that if you are open and friendly with people they will help you work out the best way to involve them.

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Age at interview: 31

Sex: Female

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And I think meeting regularly - not all the time, because I think that can be a concern is actually it becomes almost like another job, because people have other things going on in their lives. But so meeting often enough that people felt they got to know everyone, but not so often as to be like, "Actually I can't do it next week because I've just been there a couple of weeks ago." And we just asked people. I think some people – having talked to other researchers about public involvement – [researchers] get sort of worried. And so like you just ask, what do they want to do? And everyone I've ever worked with has always been like they’ll tell me, you know. And I think that’s important, it's that communication – it's just being friendly. I know it's a work setting and we're being formal at work, and we want people to be involved and there are places where that should be formal. But there's other times, particularly in building relationships, we're saying, "If you're not happy, or something's not working, just we'll talk about it." And make sure we kind of come back to that and not leave it as once, because that can be an issue I think. Someone's going, "Oh you're welcome to talk to me," and you never say it again and people go, "Oh," and it can build.