Patient and public involvement in research

Training and learning

We asked people to tell us about ‘factors which made it easier to get involved’. One of the most important was training for the role. Walking into a room full of research experts – who, as Hazel noted, may all know each other - can be intimidating. Andrew said professions can seem like ‘conspiracies against the laity’, and that their use of jargon tends to exclude others. Roger A said his first experience of neurology was like ‘mystical science…alchemy.’ Others pointed out this applies not just to medical research but also other types of health research.

Training and learning opportunities may go some way to correct this ‘power imbalance’, as Kath put it. Kath also stressed the importance of researchers accurately costing in training when they are applying for funding. This may be funding people to go on formal training courses, as well as informal support and guidance. The type of training which will be most useful depends partly on the type of involvement, but people we talked to identified some general things it can be useful to have explained. These included jargon, acronyms and abbreviations; different research methods and science awareness; the medical research process and terminology; research ethics and good clinical practice; how to review documents; how to contribute effectively in meetings. Advice on how to prepare emotionally can also help. Kath said, ‘Some of these research projects have occasionally stuck sharp sticks into those wounds and, and it has been very upsetting sometimes. But that’s fine, that’s part of what I’m doing and I need to be able to deal with that.’

Roger A has had some training through a research network. The biggest difficulty is dealing with jargon.

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Age at interview: 65

Sex: Male

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I have also had the opportunities to do various training courses with DeNDRoN and any others that come along and I now see that where they were once few and far between if you wait long enough and three or four will come along at once. And that’s starting to happen now. I have I think the next one’s two or three that I will be looking through DeNDRoN and there’s also an offer of one through my local Community Health Care, NHS Foundation Trust that is also offering a training course to lay patients.

To lay patients?

I think they call it the Lay Patients Programme. But…

What sort of… what did you learn? What was the kind of syllabus of these training courses? And who was on them with you?

The biggest difficulty, I think, for the lay person is to go into a very rarefied, very academic environment and learn the language. To try and coax the social and health care professional to speak in good plain English. Jargon is terrible but at the same time, you do, because it’s a complex subject you do need a shorthand, so it’s almost like learning another language in some instances. I’ve got a favourite expression is that looking at some of the documentation within research is like trying to read a Polish opticians eye chart.

DeNDRoN for someone like me, what is DeNDRoN?

Dementia and Neurodegenerative Diseases Research Organisations Network.

People need to be trained because research is a specialist area.

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Age at interview: 64

Sex: Female

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I think you would need training, because you know, you could be looking at something the wrong way or looking at the data, especially data. Because people look at data so many different ways and it all depends on what you’re looking for and people have training to be researchers so I think if you wanted someone to help the researcher, that’s a lay person, then they would need training in to understand a) what they’re going to ask the questions, because they might bring their personal [experiences in] and it’s not personal, its research. So I think you’d need quite a lot of training. Or maybe just a little bit of training. I don’t know. It all depends what your background is.

Maggie went on a course in the US on cancer research and is now running a similar course in the UK. Learning from scientists has been amazing.

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Age at interview: 71

Sex: Female

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I then was able to go to the States to undertake what's called Project Lead Training, which the course was actually free but I had to find funding for travel and a hotel. And we had, I belonged to a local research group that I joined around the same time. It was a new group that had been set up, I think there was Macmillan funding for the original three centres that set it up where there was a mix of, our group was a mix of professionals and people who'd been treated for cancer, not just breast but generic cancer. And the person who set our group up was [name], the research manager, she was able to find me funding for my travel costs to do that course. And it was the most amazing course, which, it goes into the science, the cell biology, research methodology. And you're not a scientist in a week, but it does give you a much, much better idea of understanding the gist of what the scientists are trying to achieve. And it also was extremely exciting when you understand more about how cells work and what switches this on and switches that off. And so I did that training and then was able to enable other people to go off and do this training. But we decided that we needed to be able to do a similar training here in the UK and we shouldn't have to go to the States. We've got just as good, if not better, scientists here, and we should be able to do this here. And we also wanted greater freedom of dialogue with the scientists to be able to put a direct patient perspective into the research, and to be available to them for comment on protocols and new potential trials and that sort of thing.

So we set up our new group which is Independent Cancer Patient Voice, and the aim was to provide education, mentoring and support for people who had been treated for cancer and want to get more involved in the research, adding a patient perspective to that research. And we've been running workshops over one and two days. But we go to the academic centres around the UK, so that way we get a better geographic mix, but we also enable, it enables us to get a venue without charge, but we also get the teaching and it's, the scientists at these centres have been extremely enthusiastic and very supportive.

Derek runs training. People don’t need to know all the technical detail, but they need advice on how to do specific tasks, ask the right questions, and cope emotionally.

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Age at interview: 62

Sex: Male

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When we started the number of people we did get involved, there so few of us, we felt we had to understand as much as possible. That's not true anymore. People who get involved now need to understand, they're more than welcome to understand all of it, but, what's most important is they learn what they need to learn for the task they've been asked to do. So, if it's about doing a summary of lay reviews, or deciding which piece of research should be decided on and are funded. So, on the funding one you might need to help people understand what it is they're looking for. Does it make sense? Is this a language relevant and appropriate? Does it, is it being ready to accrue in the right place? Is it secondary care or primary, you know just common sense stuff.

Then they might want to look at the section on patient and public involvement, so you give them just some hints and skills, but often it's things like advice, have a cup of tea, read them, put them down, go for a walk, have a biscuit, go back with a pencil this time. Because when you're faced, if you've come from just a patient to suddenly reviewing lots of trial protocols, you know, the batch of them can be, do you know, a huge tome of papers to read through, and you go, "What I hadn't realised!" So, people's expectations, what they might need to do, so we can do that. If it's about looking at a particular research trial and helping a researcher, then it's about, 'Do you understand what the researcher's trying to do? Have they explained it properly? Have they defined?' So they, the tasks become clear. People sitting on clinical studies groups we now say to them, one of the questions apart from what the role is, what the group is about, what it does, what they're there, what we're often saying to them is, "Now, how would you cope if something emotional came up? If they'd said something about your cancer?" So, they might say, "Well actually very few people live beyond five years and you're sitting there in five years, one month." So how do you prepare for that? The one for me was, a description by somebody of how they went in to do an operation in the throat, on the tongue for cancer, which meant breaking the jaw. And I just excused myself from the meeting and went out and breathed deeply and went back in. So, you know, it becomes far clearer, we don't need to explain everything they can actually do.

The other thing that's changed I would suggest is that we don't need to physically know it, we don't have to memorise it because actually that's not purpose for being in the room. That's why we have the scientists. What we need to do is ask better questions. Well, what, and [name] from, who was at Macmillan at the time, said, "I've got three questions. What's this about? What's the burden, versus the benefit? Does it demand too many visits to hospital? And what difference is it going to make? Is it actually going to be used?" If you ask those three questions, you can't go much wrong.

The question of whether to share personal experience and feelings in meetings was a point of disagreement. Some felt it was completely appropriate and was part of helping researchers see things through the patient’s eyes, and sometimes they just couldn’t help it. Others felt it was important to learn how to ‘leave the emotion associated with your own child's situation or your own condition outside the room’, as Catherine put it. Margaret’s group had had a training evening about when it was appropriate to share your own story, and decided it shouldn’t be every time because researchers ‘would have switched off because they would have heard it before.’ Roger B chairs meetings and agreed it wasn’t helpful for people to tell their story every time, but ‘you've got to allow them to tell their story at least once.

Roger B said the chair has a crucial role in ensuring people’s voices are heard, so it's important that they're trained to help people find the right time to tell their story.

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Age at interview: 67

Sex: Male

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I aim to manage it before the meeting starts by getting them to tell me their story so they've, in a sense they've got it off their chest once. And I'll actually say, you know, "That's really valuable, you know, everybody needs to understand that, you know, I'll get you to speak at some point. Don't do it at the introduction of the meeting, just say who you are, but I'll get you, fairly early on in the meeting, I'll bring you in and tell your story then." And then it's on the table, everyone understands it. They know where that person is coming from. They've got some clear ideas about the kind of experience that they've had and that's valuable to the other members of the group. And I can explain all that to them and say, you know, "It's really important to have your experience on the table but it only needs to be there once."

What are the other crucial things that you sort of would say in training a Chair – what do you think they need to know?

Well, I think that issue of the patient telling their story is one. The fact that the patient will find it very difficult to chip in in the meeting because of the kind of dynamics these meetings have, so they have got to be able to bring the patient in. Ideally that's with the knowledge of the patient beforehand. Whether that's been pre-agreed between them prior to the meeting or, you know, a little notice being pushed round the table or whatever it is. One of the Chairs that I work with fairly regularly used to say something like, "I'm going to ask [Roger] to comment on that in a minute." It'd give you time to think – very, very useful. So there's all sorts of little, you know, tricks that can be brought in and used in order to get, hopefully, the maximum benefit from having a patient there.

Part of Catherine’s early training for involvement was about learning to take a wider view beyond your own experience.

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Age at interview: 51

Sex: Female

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And what about the training that, the induction that you talked about, what did that involve?

The first half of the day was explained to us what would be required of us.

And basically what is required is to be you, because they want feedback and what it's like to be a parent and, if you had been asked to take part in research when your parent had been, your child had been ill, you put yourself into that position when you think about what was going on. So they talked about various aspects of research, for example, taking blood. When you take blood from a child it could be painful, when you take blood from a baby, a baby has a limited amount of blood, so taking blood from babies they have to take much smaller amounts. So they talked to us about the ethics of procedures that were required so that you were able to think outside the box and not just about your own child's illness and then you're not too focused. So instead of me only thinking about what it was like being the mum of a child who was sick, age seven, in hospital for three weeks, I could perhaps extrapolate outwards and think about what it would have been like to be the mum of a child in the intensive care unit with a neonate, or a child who'd had an accident and then ended up in hospital for example.

So that, the training tried to broaden our ideas of what was required.

It is about not involving too much passion in the process.

Because it isn't about only delivering your case to the table otherwise it sounds like you're the one person beating the drum for just your one condition or the one thing that you're worried about.

Where what you're actually required to do is to be able to sit with a group of up to maybe eight or ten people who are experts in their field and to contribute rationally, and I believe if you want to influence them it's best to be able to be rational and objective when commenting.

Jennifer has sometimes cried in meetings about her mum’s experience, but in a way that has helped researchers understand the impact of dementia.

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Age at interview: 58

Sex: Female

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I was asking you about, you know because of your experience of dementia and sadly losing your mum.

Yeah

Were you sort of prepared for the emotional effects of being involved in dementia research?

No I wasn't, no. There's been a few meetings I've been to where I've broke down. But that's good because some of the researchers, you know, they understood how I felt and what dementia was really all about, you know, living with it, not working with it, but actually living with it and I think it brought a lot of to their attention. But they were very good, you know, and yes I did break down at one or two, a couple of times yeah. You're bound to do, aren't you? You know it was so early days, I still do sometimes, but it's getting better but the emotional side yeah mm.

Although the amount and variety of training available to support involvement is much better than it used to be, some people had bad experiences of not being offered training, and in some cases the opportunities offered had not been very good quality.

Marney went on a training course bringing lay people and researchers together but it was not very helpful.

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Age at interview: 53

Sex: Female

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Mostly the research settings that I'm in people are all making good contributions and most of them have been doing it for a while so I'm sure time has honed their performance. However I went to a – well it was quite interesting – went to a workshop that was designed to bring new researchers and patients who were interested in becoming involved with researchers together to explore some of the issues. And these were being run by a charity with a facilitator that I have since found does a lot of these workshops. And although I would say eighteen months on, I've got reasonable experience of how the system works, I've also still got quite big gaps, and I was also interested in the process of how might one bring these groups together to make it work for everybody – because again, as an educator, I'm always interested in the process as well as the outcome. And it was co-chaired, as I say, by somebody, I'm not quite sure what her background was actually but she does a lot of these of these workshop, and also researchers, so the two of them were together, and we were a group of maybe about twenty people I suppose.

But it was poor, the workshop, and I struggled a bit with the feedback form because you never like to give in something that's really negative. But then again it comes down to this thing, well are we all wasting our time here? And the people were nearly all, I think, making valuable contributions in other patient network things, that they were on the focus groups to this, that and the other, or they've worked with charities or whatever. So there was lots of potential there, but we just didn't really get enough done. There was no sort of meat on it and the facilitators didn't control some of the, what you might call, rogue elements, well enough to make it good for the whole and I do think that can be a danger. I've seen it in other settings of involving the general public. You're always taking a risk, which is why if you're looking for PPI involvement in something it's a good idea to have had them fill in a form first that says, "What transferable skills are you bringing to this? What's your interest in it? Why have you felt motivated to approach this? What other relevant stuff have you done?"

Hazel is annoyed by so-called conferences where you are lectured at and don’t get a chance to learn through discussion.

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Hazel is annoyed by so-called conferences where you are lectured at and don’t get a chance to learn through discussion.

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Age at interview: 67

Sex: Female

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There are various conferences which are run and I have been in previous years, I've been as the lay member for that committee to these conferences, but in fact they're not really conferences in terms of conferring - the lay people conferring - they're mainly the kind of very annoying workshops where you go in and somebody lectures you and then does a bit of training, you know, and you know you kind of feel once you’re 50 anyway, it feels a bit past that stage [laughs]. And again conferences they're often, you know, you go along, you get the conference agenda at the last minute, it's the same people talking, everybody congratulating everybody else, what a lovely job they're doing, and you know, it's all very nice and you get nice food and might get a nice night in a hotel somewhere, and it's interesting to talk to people and I'm not saying they're not useful for some people. Personally I just find them now, I just think well that's not a conference really, you know, conferences used to be people talking to each other.

There is a dilemma around how much training is needed to contribute effectively. It sometimes felt to people as if they couldn’t win; either researchers said they couldn’t be involved because they didn’t know enough about research (which David Z said was ‘an easy excuse’) - or they couldn’t be involved because they knew too much about research and were therefore no longer able to bring a really lay perspective. Dave G felt the idea that he was a ‘professional patient’ was ‘an insult’. (See also ‘Long term involvement and expertise’) and thought more structured training with national standards was needed.

Dave G strongly feels training is essential. He disagrees that being well trained means you become ‘too professional’.

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Age at interview: 67

Sex: Male

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I'd have liked a struct, I'd have liked a structured introductory course on methodology: what the terms meant, a little bit about how these studies were done and structured, and I don't think they had any real idea about how to train lay participants up in this method. I got a bit of bone of contention about this. I think lay participants need to be trained and I don't see why, I know a lot of participants participate at various degrees – you get participants who will tell their story and that's very valuable. But at some level I think you need maybe the citizen researcher who has actually gone through some level of training – it might be online, it might be whatever – and then form a pool of researchers which you can pick for so you know that, if you are getting a citizen researcher they are trained to a certain level in what research skills are. They're not starting from blank. And one point which was made to me, especially about presentations, was it's alright patient participants doing a presentation, but once they become too polished at doing a presentation and too professional then they're no longer patient participants. And the same argument is if you become too much of a researcher you lose that, I'm not too sure, metaphysical element of being a patient researcher or being a patient – you lose something by becoming more expert. Now that's never really computed with me, I don't see why becoming good at something should be a bar to going on to actually exploiting the skills that you’ve learned. That seems to me you might as well learn to be an architect and when you pass your degree they said, "Right fair enough you're now an architect, we don't want you anymore you're skilled," and want somebody with a little bit less training. The whole thing's nonsense I think so I do think you need to be trained. People who want to go to that level, not everyone does, need to be trained as a citizen researcher if you like.

Although formal training can be really helpful (and enjoyable), what’s needed will depend on the individual and what they are being asked to do. People pointed out that there are some things you can’t teach, and some you can only learn through experience. Sometimes, as Richard suggested, it’s only after doing it for a while that you can work out what else you need to know.

Derek would like to see more online learning, but some things are best learnt by doing it, meeting people and asking questions.

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Age at interview: 62

Sex: Male

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We developed our own, which was fine for the first few people, but when somebody new arrived – do we do the whole training course again for that one individual? So, what we should be doing now is altering and using , I've forgotten what they're called, ‘MOLCs’ – mobile online learning courses – so that somebody could sit at home and just get the information they require, but fundamentally in involvement.

It's not about, you can't learn this from a book or an app because the nature of involvement is a two-way process between researchers meeting with patients, and patients learning and meeting from researchers. And ultimately, we can rely, we could look towards other methods, but you mustn't take away that fundamental because that's the bit where you get to double check things you think you understand, but it's not ‘til you're talking to somebody. It's the nature of learning, right? It's not an abstract, it's got to be with people, it’s experiential. And that, I would also say, is in learning and development. Too often, we think about let's provide a course. The course doesn't give you an answer, it's the coffees, the chatting with people, the sometimes being off the task, where somebody says, "Oh I'm a qualitative researcher" or "I'm a researcher looking at case control groups" and you go, "So what's that, so what does it involve?" Not only do they tell you what it is, they describe it in ways you can understand. And then because it's experiential, you might not in the next year, ten years, ever come across a case control study again. Chances are you'll come across it within a few days and suddenly you go, "Bingo!" And that synapsis in the brain, that linkage across, from fact, experience learnt, and then to meet with somebody who talks about it, and suddenly it then, we hold onto it then. So I think learning has changed; it has changed for the better. We are better at defining what people are there to do, but also are now looking at new technologies without losing track of, of what was there in the past, yeah?

You don’t need training for everything, but Kath thinks people should be given clear information about what’s expected of them.

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Age at interview: 55

Pronouns: They/Them

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What sort of things do you think are the key bits of preparation and training that people need for different types of getting involved in research?

I think it differs, there were so many different things that people do. Some things people I think don’t necessarily need training for. They maybe need some reassurance about what is going to be involved, what is going to be asked of them, and how that is going to be used and valued. If it’s something like being involved in a workshop or a question generation discussion or something like that, people don’t necessarily need to have training for that. But they do need to have a very clear idea of what’s involved because otherwise they turn up expecting something quite different, and then they’re disappointed. I mean they might be nicely surprised – sometimes that happens – but it, it is good to have a very clear idea of what’s needed. I think if you’re wanting people to assess documents, then I think it’s good to have a very clear method of doing that, and a very, very clear guidance of what they’re looking for.

I’ve seen some where people have been sent a research proposal to look at and they’ve just been asked, “What do you think of this? Is this alright for the participants?” Well, do you think this should be funded, yes, or no? And that’s really not enough for people. They do need to actually have it explained what parts of their knowledge will be useful if they put into this. I mean are you are asking them, ‘Can you imagine yourself participating in this? Do you think it would feel all right?’ Are they asking people to do things that are realistic? Are they asking people to do things that, that wouldn’t fit with their lifestyle? That’s the sort of thing. You need to give people those prompts.

Initial training is useful, but Richard thinks it should be ongoing, so you can work out what you need after some basic experience.

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Age at interview: 54

Sex: Male

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When I first became a PPI representative, I was offered lots of training, and I had lots of training, because I tried to take every opportunity. And much of it made no sense to what I was actually doing. So, I spent three days, I think it was, on a cancer biology course about a year before I joined a clinical studies group and actually started needing to know about cancer biology, by which time, of course, I'd forgot everything I'd learned. So, in that particular instance, timing was everything. It was a really, really good course and if I'd been able to put it into practice, it would have been a great help. I've since had a refresher and things are a bit better. What I wasn't given initially was a course on how to survive on national committees where everyone is representing an organisation, which doesn't necessarily have the same remit or interests as the other organisations around the table.

My experience of training in PPI now is that there is an awful lot on offer. The difficulty now is knowing what's good and what's not so good and, of course, something you don't know until down the line, what will have the genuine long term impact? My advice to anyone doing PPI is, they may be offered some training to start with, which is good and it's always welcome, but go away from it once you've done it, go away thinking, 'I need to find just two or three bits of this that I'm going to practise, that I'm going to use', and do it that way. And then once you've settled into your role, your job, your committee, your remit, your work – whatever it may be – after you've had a few meetings, or after you've had a few goes at the patient information, or a few questionnaires to look at, then start asking yourself , 'Well what is it I really need to help me do this?' And I think there has to be that loop of ‘what's the role you're being asked to fill?’ And ‘what training do you need to fill that role’. With luck most of us will have transferable skills and experiences to help us get started. It's then, how do you get from the basic level to the higher level? And you don't know that ‘til you've actually operated at the basic level for a little while.

On the other hand, Hazel was still finding it difficult to learn ‘on the job’ because asking questions in meetings can be hard. Andrew suggested that more feedback from researchers about what difference you’d made could also be a good way of learning.

Lay people could design their own training. Andrew has always felt able to learn by asking questions, but would like more feedback about the value of his contribution.

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Age at interview: 64

Sex: Male

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My inclination at the moment is to think that more needs to be on offer; there needs to be more that is accessible to PPIs at times and places and in ways that they would feel helpful and appropriate, that actually, the only proper way to structure any kind of PPI support and training is to resource PPIs to do it for themselves. You know, to encourage the networking of PPIs and to say, "Right, what do you want? We will provide what you are asking for", rather than, to begin to come up with a, with a curriculum for public and patient involvement. I think there's quite a long way for that particular debate to travel at the present time. But I think it's a live debate; I think people are thinking about it and indeed some of us are sort of encouraging it to happen.

Have you had any training since you started the PPI thing?

Not in any consistent or organised way. However, any request that I've made, for example, to attend INVOLVE conferences or to go to various meetings where you could say there was a training element or developmental element, that's always been accepted and supported. I've had access to people who've been only too happy to give up time and answer my questions, and I've had a, yeah quite a lot, of, well a lot of informal learning of course. What's been lacking might well have been any kind of review and the opportunity to give me feedback on my performance or contribution and anything, and for me to, you know, more formally ask questions and so on. That, that hasn't been there and maybe, maybe that would have been useful given the particular roles that I got involved in. I mean I've asked for a feedback on one or two occasions, but it's been tremendously genuine, sorry, tremendously general and supportive. Actually I don't mind been criticised, you know. I'm quite happy for somebody to say, "Actually, you know, that's not what we were looking for." So, it may be that, you know, alongside training and development the opportunity for review and reflection is also important.

Learning by asking questions in meetings is not easy, especially if taking part by phone. Hazel feels meetings are often not chaired well.

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Learning by asking questions in meetings is not easy, especially if taking part by phone. Hazel feels meetings are often not chaired well.

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Age at interview: 67

Sex: Female

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For the Medicines for Children Research Network which is looking at new research coming up, I attend those meetings, I'm not a very effective member with those meetings partly because most of the drugs that are being looked at relate to anaesthesia and they are very difficult to get any kind of hand on from the point of view of my understanding of them. I do feed it where I can but it's… I don't feel that it's terribly useful either to the committee or to me. However I struggle on.

And why is it you don't feel that you're very useful to them?

Well I think I'm not. I don't think it's just a feeling. I think, you know, I quite distinctly feel that I'm not useful to them most of the time partly because they are all very immersed in research, they know what's going on around; if I was to stop and say, "I'm sorry I didn't understand that," I would be stopping them every kind of two and a half minutes and it would quickly become quite intolerable. There was a research, there was a project a little while ago about chairing and I did return on that because people on scientific committees aren't very good at chairing. They tend not to sum up, they tend not to involve people, they tend not to explain to other people what others are talking about, and so it's extremely difficult, especially if you're involved by telephone, very difficult, because names aren't used, what somebody's role is often isn't given, so it's very, very hard.

And so do they make any effort to include you so sort of to reduce the jargon and introduce themselves or give you…

Oh, they do to start with but it lapses very, very quickly.

As people get more involved they may want different types of training. Richard would have found training in dealing with national committees useful; several people had gone on courses to learn how to chair meetings as lay people, and several suggested researchers could also benefit from this.

The suggestion that researchers also need training in involvement was common. Brin said that researchers need to ‘look at the needs of the person that you're working with. Don't necessarily think that they know what they can do or how they can help you. It's the researcher's job to use their skill to enable the patient to provide the researcher with the optimum involvement experience.’ On the other hand, Derek suggested researchers often don’t really know themselves what they want from involvement, and like Kath (above) suggested it was important to have a clear discussion at the outset about what was expected. Written role descriptions are increasingly recommended, and NHS INVOLVE provides templates people can adapt for local use. Joint training for lay people and researchers was also suggested as a useful approach.

Researchers don’t always know what they want from involvement, so it’s important for people to get this clear and ask for training.

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Age at interview: 62

Sex: Male

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The third one is about building up your competences for the particular thing you've been invited to get involved in. So, the researcher doesn't know what they want involvement for. They've just ticked a box and you happen to have helped them, and they don't really know what they mean by involvement. They're lovely and they'll be great, but they don't really know what they want. So, you have to say to them, "What do you want me here to do? What's my role?" And they'll say, "Well we really want you to help us look at the patient information sheet". "Ah yes, but, but what do you want me to look at?" "Oh we want you to look at the language, the tone, the, the way it's laid out, the words we use." "That's fine I can do that." Or, "We want you to sit on our committee and we want you just to ground us. When we're talking in, just remind us what this is about." Or, "We want to write the lay summary," or, "We want you to sit on our trial management committee. And we want you to be our person who just calls us to order." Or "We want you to read our minutes." So you take any of those and you look at it. You go, first of all you say, "What skills have I got? Have I got skills on reading documents?" And if you haven't, you say, "I need some training in this." Or "I need some skills on sitting on a committee and understanding minutes, and what the committee's about and just a briefing about that." And you want to know about the agenda and the hidden agenda. You know, what is really going on here, right, because that helps you. And so that's the real basis, and then that sense of just keeping that diary about what it is you've learned in those things.

Neil missed the training when he first started but has now been on several courses. The best was a joint workshop with researchers.

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Age at interview: 65

Sex: Male

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When you got involved with IP [Involving People] did you have any training or did you have anything that, you know, sort of, to help you?

Right OK, that's a good question because there is an induction course which I didn't go on for at least six months which was quite interesting. So I was, sort of, treading water for a while hoping I was doing it right and then the course came up. So, basically, I think it's once a year this induction course runs and if you happen to join the thing half way through the year of course you’ve missed the previous one, etc., so I missed it. But that was very useful, they introduced to the process of being involved in research and what the Involving People was about, what you were hoping to get from it, advantages/disadvantages. And then the second year round I was involved as a presenter saying what my experiences were, what I've learned over the year. And it's partly that – it's partly an input from lay people who have been doing it and partly from the administrators who run the scheme, so that's good.

So overall I've been on I think it's four different courses now. All been very interesting and it does equip you, it builds your confidence so that you can speak the language, you know how to communicate with researchers, and it's very good. The best one of all, I think, was on research methods where they had a guy who had been a former researcher and a trainer of researchers, and the clientele at the course was roughly half lay and half researchers. And we were given the job in the afternoon, having sat through the morning’s talk, of trying to devise the project from scratch. So, what's your research question? How are you going to tackle it? What method are you going to use? How are you going to evaluate it? All that stuff. Tried to do that in three hours, which was a complete joke, of course, but at least you get the idea of working together as a team with, you know, the opposite side of the table. And I gave that a very high rating because it was as realistic as they could make it: the combination of input in the morning and workshop in the afternoon with the real people who were going to be involved in research, tremendously valuable.

Researchers with little training or experience of involvement can be patronising in meetings. Younger researchers and social scientists seem more open to it.

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Age at interview: 69

Sex: Female

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Sometimes, I think I see this less now, but something that used to irritate me was somebody would say something in a meeting, a patient say something in a meeting and somebody would go, "Oh that's fantastic, thank you so much". And it wouldn't be fantastic and if it was like you that said it you think, well that was a perfectly ordinary thing to say or somebody else, no it's not. And it's like they're overdoing it; it's like you've said something so we've got, you know. And actually in the end that can be patronising and I think that's probably some kind of, people never mean to be patronising, do they? But it's like a sort of overreaction to a legitimate patient comment of some kind or suggestion. But it's not necessarily earth shattering; it's a suggestion. I'm not sure if I'm putting this over clearly, but it's like the inverse of this, which might get over more clearly the feeling I'm trying to capture, is when people actually feel in a meeting or just a conversation, actually able to disagree with you or challenge you back on something and say, "I'm not too sure about that," or, you know, "What's your evidence for that?" or, "I have evidence that says something completely other than that," you know. That you're kind of, it's grown up enough to have that kind of discussion. And so if that's the grown-up end of the relationship between us and the researchers then the other one I was attempting to describe is like a more infantile version of, you know, patting you on the head, feeling that you've got to, you know, welcome everything. Well actually you should look at our ideas as critically as we look at yours you know? So that's, but I think I see that, I see that less now. And that possibly is partly down to experience, more experience, more confidence and competence on the part of people doing the involvement.

Partly that's because more people are trained. Younger generations of researchers coming through seem to feel more open to the benefits, but people who made their careers made their reputations twenty/thirty years ago possibly never had to get involved with us as patients in that kind of relationship when they were building their careers, which is one reason why I feel making some kind of, you know, training and development available to those people can be really helpful. It's not just the younger ones. And people when we did the, an evaluation of the training that I've been talking about, some people pointed that out. Sort of the mid-career or late career people have had to just kind of get on with it without training or support, that they're the ones who are supposed to be ensuring that other younger people and often it's the younger people at earlier stages in their careers who have actually had more training. Or who sometimes get it dumped on them. They've been told, "OK you do the PPI," you know, or, "We'll get the post-doc to do the PPI when we appoint whoever that is." You think, 'Hang on a minute, who's going to lead this and support it and co-ordinate it?' And, you know, maybe needs just more than one novice to, it's a mixed picture out there. I see a lot of quite, I thought that what I would see is quite favourable and good quality responses because the particular field I work most in, which is the psychosocial qualitative kind of studies, those researchers, I think, are often very open to and already involved in PPI and interested in doing more. I think, you know, they want, I think they're converts perhaps a lot more than people on some of the much more kind of hard science end who haven't yet had to have a lot of experience of working in a collaborative way with patients.

Margaret helps run joint training for lay people and researchers. It helps researchers see how people can help rather than hinder research.

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Age at interview: 63

Sex: Female

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Although there's one area that I have been involved in that , over the past six months that has really been very exciting and that's been part of building research partnerships which is a workshop day that brings together researchers and people who might want to be involved in research, and we spend a day just looking through different areas and quite often that a lot of researchers have never met or sat in a room, at that point, with people who are, with lay people, and I really value that as a course in building research partnerships. It has run several times locally and it's going to run again in the next few months and that is an experience for both sides of the fence, but it's like being together in a room talking about different aspects of what research is and that has been invaluable, not just for PPI people but for researchers and a lot of them would acknowledge that perhaps they have never spoken to a lay person or they've spoken to them and, a bit like in a corridor, because they need it for a grant, and said, "Hello, how are you? I'm thinking of doing this research," and what, what I really am passionate about is ensuring that PPI is not a tick box exercise, that it's not, you know, oh I have to say, if there's a box here I have to say I've spoken to somebody in the public.

It's a working together and a partnership and a collaboration and we've things to give, not to hinder research, but to enhance a researcher's life. And sometimes that takes a while for researchers to have an understanding of us as well that we're not sort of like aliens [laughs] and that we're not there to batter them or to question just for the sake of questioning, and so that's also a part of the, our PPI forum. One of our, another one of our aims is to, in inverted commas, 'educate' researchers and inform them of what PPI is about. Yeah so that's it a new neutral acceptance and not something to be frightened of.

Several people talked about the need to take responsibility for some personal learning – to ‘do your homework’ and ‘be prepared to read around your research subject’ as Charles and Dave G put it. Francesco noted that researchers may want to work with people ‘who can hit the ground running’ but that this may make it difficult to involve a wider group of people. Kath and others suggested that rather than training people to meet researchers on their terms, researchers could be more creative about changing their own way of working. She had herself developed training for local people.

Kath has developed training for people who haven’t been to university like them. Researchers need to be more inventive about how to involve people.

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Age at interview: 55

Pronouns: They/Them

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There is a danger that researchers choose people that they’re comfortable to work with because they quite like them. And I have met a lot of people who’ve been researchers in other fields or who have been statisticians in industry, or who have been used in public involvement roles and they’ve been very good at it, but I think public involvement needs to reach wider than that.

It is, that does mean, that you need to have training for people to do these jobs. As I say, I was lucky that my opportunity to get involved happened after I had learned how to read long documents and get information out of them and present it back. That’s something that I’d been into university and learned. A lot of people in my community haven’t had that sort of education and for them to do that sort of job you need to give them the training of how to do it. So that’s one way of getting more and different people involved.

You also need to do different sorts of involvement. Reviewing research proposals isn’t the only way of inputting into research, and so researchers need to be a little bit more, a little bit more inventive about how they involve people: having events where they talk to people in different ways, or get people to put their views in, in different forms. That seems really important to me as well.

I think from my perspective I’m most pleased about getting different people involved who have very good stories and very important stories to tell researchers, who may not have otherwise been involved in the ways that they are. So I have supported other people to learn how to do reviewing of research proposals, and introduced them to other ways of being involved that they’ve not come across. And I’ve been helping to design this training that takes actually some of these ideas out into communities, and gives other people the idea of how to get involved. So I think for me that’s my main, the thing that I’m most proud of I think really.

Using the skills of people who already had experience of involvement to support others was widely welcomed. This might be through user-led training, but also through more informal support networks and mentoring, both face-to-face and through social media such as Twitter, Facebook and LinkedIn. Several people also recommended the support available through INVOLVE, though some felt it could do more as an organisation to encourage networking.

Working on your own can be isolating, so Helen really enjoyed meeting others involved in a range of projects at a training event.

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Age at interview: 41

Sex: Female

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I mean that was one of the other things that was wonderful about the training; the NIHR sort of workshops for PPI involved people. It wasn't just the workshops themselves, it wasn't what we were learning. It was the fact that there was thirty or forty people there who are all working in isolation on little pockets – you know somebody is doing sort of Motor Neurone research, and somebody is doing this, and somebody works with the local elderly, and so on and so forth. And we were all there together in the room at the same time; learning something together and lunchtime, I mean I don't think any of us ate. I mean, there were so many different conversations going on left, right and centre; we were jibbering away to each other, and it was just nice to find out that there other people out there doing the same thing, and in many cases doing so much more. I mean there are some people who throw themselves into this, heart and soul and you know, it makes you feel bad that you're not doing as much as they are. They're just so enthusiastic about it and you think, 'Well I thought I was enthusiastic, but you,' and I think that is, that is something, maybe, that needs to be thought about. Is it you know, bringing people together; the sense of isolation that you mentioned when you are working on your own, just looking at, you know, this piece of paper making your own comments. It is very, very isolating and I think people do need to know. Not necessarily that there are other people working on the same thing but, just, we are all involved – none of us are clinicians, none of us are researchers – we're all lay people. But, we're all involved and that might help with the recruitment effort as well because, we could then turn that enthusiasm outwards and drag other people into it as well.

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

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Age at interview: 64

Sex: Male

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

Opportunities for lay people to give each other support are really important, but it needs funding and organising. Social media may help.

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Age at interview: 44

Sex: Female

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I think what you have to have if you can is a really strong consumer support for each other. And I think we're really – I keep saying how lucky we are, but I think we've worked really well and really hard together to make sure that we have that. So I think parents and consumers need time to meet together and what I've done, so we've just recruited two new parents to the committee that I'm on, so I've set up a teleconference with them where the three of us have just had a chat and just talked a little about the role. And then I've actually met one of them separately to just actually get to know the person and for them to then have the confidence to say when they don't understand a trial design or a trial piece. But again I still think each person is just giving their honest view.

Again social media there's a couple of groups on LinkedIn where you can see what's happening in other patient and public involvement areas. But actually that's one thing where the Medicines for Children's Research Network has possibly not had enough funding or structure to organise. But, for example, I'm very connected with the rheumatology group but there's probably thirteen or fourteen other groups and it would be really interesting to know how their patient and public involvement role is developed and how they've got on and what they've done in their group. And actually I think we had one event in the five years where we all met up but it would be quite nice to even have an annual meeting or an annual training day or something else. But I suspect there just isn't funding for that, which is a shame because actually that would be really valuable in terms of where have we got to and where are we going and how do we get there. And again just that sharing experiences and sharing what's worked well, but I suspect there aren't funds for that which is why it hasn't happened.

Researchers have their own support networks already but users don’t. A ‘buddy’ system can help prepare people for meetings.

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Researchers have their own support networks already but users don’t. A ‘buddy’ system can help prepare people for meetings.

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Age at interview: 55

Pronouns: They/Them

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I think that one way that we can address power differentials is by helping people who are involved in these things to network and support each other. Professionals have their own networks. They are part of established and well supported ‘communities of practice’ in institutions like universities, hospitals, associations and Royal Colleges. On the other hand, the experiences of patients and service users are often very personal and have been experienced in isolation or just within their family. When you talk to people about their experiences of healthcare, they will often say that they have never had an opportunity to tell their story properly before. This means that it is more difficult for them to take part in a way that is both useful for the researchers and that gets across the points that the service user really wants to make. By having a service user group and/or a ‘buddy’ system of some sort service users can rehearse what they want to say and get some sympathetic feedback before venturing into the lions’ den. This can help redress some of the imbalance between them and the professionals. It also builds people’s confidence, helping them to speak out and to ask questions. I think it is an important way to help people gain the skills they need to participate effectively.

As well as support from other lay people, paid patient and public involvement co-ordinators were also a valuable source of support for many – though Jennifer felt ‘really disheartened’ when her local involvement manager seemed to feel she was getting involved in a project without her permission and took the project away from her. But Dave X thought the personal mentoring provided by his local involvement coordinator was excellent and described her as ‘an absolute mine of information.’

See also ‘Difficulties and barriers to involvement’, ‘Factors which make it easier to get involved’ and ‘Long term involvement and expertise’.

Our website section on experiences of clinical trials provides information on what’s involved in the clinical trial process and the meaning of commonly used terms such as ‘randomisation’, ‘blinding’, ‘placebos’ and ‘controls’. This may be useful for people just starting to get involved.

Last reviewed July 2017.