Patient and public involvement in research

Messages to professional health researchers

We invited the people we spoke to to give messages to professional researchers about involving people in research. Given that the relationship with researchers sits at the heart of all involvement, these messages feature across the whole site. Here we draw together a few key themes that came up repeatedly. The main message was to encourage professionals to try involving patients and members of the public in their research and discover the different perspectives it can add. Dave X said ‘Each patient is an expert in his own field, on himself and what he’s been through, which is something you as a researcher won’t have. So it’s an on-tap resource. Use us please.’

Patient and public involvement is becoming something researchers are increasingly expected to do; it’s part of how research is conducted and is often necessary for researchers to successfully attract funding for their work. But people wanted to remind researchers that it shouldn’t be seen as a box-ticking exercise if they wanted to get the best out of it and use it to enrich their research. They advised researchers to involve people in the early stages of designing research and engage with them throughout the whole research process. Dave A felt it was also important for researchers to learn from what doesn’t work to improve how they involve people in future.

Patients can probably be involved in all types of research and they will make a positive difference.

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Age at interview: 71

Sex: Male

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Well, it’s something of a platitude I suppose, but the simplest message is you’ve got to do it anyway to comply with the regulations, so if you do it with an open mind, you might find that there are benefits to your function out of the PPI involvement.

And are there any types of health research where PPI isn’t useful?

There may be, but nothing springs to mind. I would have thought that there would be a role for PPI actually in every possible field. You know, mental health, paediatric care, cardiac care, all of it. Because, almost by definition in all fields of health provision, there will be people who are drawing on that health provision, and they will have a view on how that care is provided. So I can’t really see… Once a patient is involved, or a member of the public is involved, i.e. once your medical research gets out of the laboratory and is actually being administered to patients or members of the public who are patients, then those people will have a voice and should have a voice.

It’s important that patients are included in all cancer trials throughout the UK. But we need to start thinking about what aspects of involvement aren’t working and learning lessons for the future.

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Age at interview: 60

Sex: Male

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What we ought to be doing now, ten years or more into the process is asking the question which aspects of patient and public involvement haven’t been successful, and learning from that how can we build a model going forward which will make patient and public involvement as impactful as it can be, as it possibly can be. And I don’t hear those kinds of messages coming from, coming from the top people. I wish somebody would say, ‘This is the model of patient and public involvement that we would like to have. Let’s get on and do it.’

I think that in the cancer world, we know now, which, which aspects of involvement work. It’s important to have people on the committees, on the national committees, and that, we’ve achieved that. Virtually every committee in the cancer research world has got lay people on it. Where we’ve not got blanket saturation is at the very early stages of thinking about the research process and I have always said that one of my ambitions will be that every portfolio trial within the National Institute of Health Research would have had early input from members of the public. So a lay member on every, at least one, and possibly two lay members on every trial management group for every portfolio trial within the National Institute of Health Research.

I have opportunities, a recent meeting I was at [doctor’s name] lead clinician for the National Institute for Health Research was sitting in the audience, and I looked him in the eye and told him that that was my ambition, and I could see him nodding and smiling. I’m pretty sure that he agrees that that’s important. But how you build the, the groups to ensure that happens, is not simple. I admit it’s not simple, but it’s something that we can work towards and we’re moving towards it all the time.

In the cancer world when I joined the MRC trail there was only a handful of patients sitting on TMGs. There are tens, scores, getting on for hundreds now of TMGs that have got lay people on them. It’s still not blanket.

There are about something like 2,000 national portfolio trials in health research. So that is a big number, probably a quarter of those have had lay input. It needs to be more.

Involve people early on; your research may benefit in unexpected ways.

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Age at interview: 53

Sex: Female

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Well undoubtedly involve people right from the beginning. Give them enough information about the sort of context and what you're hoping in the first instance that they be able to provide you with, but remain open-minded about what surprises may come your way. Because, if you initiate the conversation, like all conversations, it tends to develop and you will probably get something really valuable from it that you never anticipated. So be open, be welcoming, be thoughtful about what they might need to help make the role easier, and remember that the environment and the terminology, and all those things that you are completely happy with, are likely to be unfamiliar to the person that you're talking to, so just be sensitive to draw them into the picture.

Helena thinks user-researchers can play a role in bridging the gap and helping more researchers to ‘get’ why their research can be better with involvement.

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Helena thinks user-researchers can play a role in bridging the gap and helping more researchers to ‘get’ why their research can be better with involvement.

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Age at interview: 43

Sex: Female

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What do you think the health research community needs to do in order to maintain or improve involvement?

Well they need to understand why they're doing it? They need, they need, I think they also need to appreciate how poor some of the research is that they're doing. It sounds to me as if, just talking to you about what other people have said and, reading the literature on it as well, they I think, there are, it's clear that some people get it and some people don’t and it depends on whether the ones who get it are the ones in power and whether they can role model best practice and get people to understand why. And I think, and I actually think that there need to be more user-researchers because we can bridge the gap and I mean, you know, I've had some conversations today with people who I could see them get why. I saw somebody today get why and that was really interesting. And the reason that she did was because I showed her why the questions weren't adequate, given this wealth of knowledge that I have about the condition and why, you know, it's a kind of where are you going with, or well I wouldn’t start from here. And she got it and she realised that she could carry on down that line but it wouldn’t be good research and it wouldn’t actually answer the questions that she wanted, really wanted answered. And she needed to define more things and she needed to think about what she meant and she needed to understand that what was standard belief about the condition is really crude and really doesn’t work when you want to look at actual life.

And if we could have more of those conversations where somebody gets that 'I get it' light in their eye, it will embed better. So but I think that’s hard because the reason I was able to do that was because I was working with researchers and paid to be with researchers.

People also encouraged researchers to think flexibly about how to involve people, to make involvement roles easy for patients and the public to do, and to treat them well. Researchers were advised to think about how people want their role to be described and Francesco thought researchers should ask people what they wanted to be called rather than giving them a title. But people also understood that researchers might not know how to involve patients and members of the public, and that they may be nervous or fearful about doing so. They encouraged them to be open-minded, to get training and not to get too hung up on whether the people they involve are representative of other patients; they just need to start somewhere.

A good chair (lay or professional) will encourage everyone to contribute but without pushing them.

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Age at interview: 71

Sex: Female

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Yes I think researchers, well I think the message has got to most people. I think if you want lay input, ask for it. And sometimes if you don't get an instant response, you know, send another request because sometimes it's just that people are busy or, you know, it's on the to do list and it hasn't risen – it's not because there's no interest. And value those people, make them feel welcome. You know, some professionals are extremely good at chairing meetings where lay people are involved and some are not, some are appalling. And some of the people that you would feel should be really good, are not good. Good chairing of whether it's a meeting or whether it's a teleconference, you need to actually acknowledge everybody who's taking part and to make sure everybody does take part. That's not to push people when they're not happy to be pushed but just introducing, you know, and just asking for, you know, "Is this something you'd like to comment on?" Or, "Well actually this is something that we need a lay view, what do you think about this?" And if they don't come back right away then say, "Well could you think about that and then come back to us?" So don't put people on the spot. But equally the lay people that are getting involved in these things have to be prepared to be challenged. So they have to be prepared to be asked for their – that's what they're there for but don't be frightened to say, "I don't know." At the end of the day we're only patients so you can play that card. But we need to be, we need to earn our place at the table to be respected and I think we've done that.

Mary said researchers shouldn’t be afraid to involve people. Even though she has a mental health problem, they don’t need to wrap her in cotton wool.

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Age at interview: 60

Sex: Female

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I think my message would be do not be afraid, we are human and we are very willing and able to listen to you, and together we collaborate for a better future for everybody. You know, just because I've got a mental health problem doesn't mean to say I've got two heads, and I'm not so fragile that you can't, you don't have to keep me in cotton wool. And I think if we, it's all to do with talking together, working things out, and I think that the research you do would be better if you invite people like me to collaborate and co-operate with you.

Margaret advises researchers to make a start with any patients they come across.

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Age at interview: 63

Sex: Female

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There's a lot of sort of organisations, supportive networks, for cancer patients isn't there?

Yes, oh yes. I mean miles ahead of ….

Of other types of illnesses.

…and, well I suppose heart and the rehab are there but certainly within research in Northern Ireland the other clinical networks have not got any PPI. I spoke to about sixteen research nurses before Christmas and said, "How do we start," you know and we just how we started. I said, "All you need is one person," I mean they only need one person, you know, you don't have to have a forum, you just need, you must all know a patient who, you know them well, ask them would they do this. Bring them to a building research partnership day, come together you know and they said, "We'll just go to Margaret," and I said, "No, no, no, no you mustn't say that," you know because the whole NIHR thing is working across, you know, across disease sites.

As opposed to being specific so we're doing quite a lot of work, how we got started in cancer PPI research with the other network for the rest of Northern Ireland, but it's that getting started is the big thing.

Professionals were also encouraged to think about ways to involve people from ‘seldom heard’ groups. These include people with a variety of experiences from different backgrounds – ethnicities, social status, age, disability status. To do this, they encouraged researchers to think about paying people for their time, and reimbursing their costs. It was also important that researchers think about how they find the people they involve and people suggested using social media, like Twitter and Facebook.

Not offering payment excludes some groups of people. But the government needs to address the problem of it affecting their benefits.

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Age at interview: 60

Sex: Male

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My feeling is that the, the amounts of money that would be needed to pay the, the lay people within the process are very, very tiny. A lot of lay people who get involved do not want any payment and they would turn it down. But I feel that if you don’t offer the payment and I think it should always be offered. If you don’t offer the payment, then you exclude some groups from that involvement and that’s the thing. If involvement is going to be sensible and relevant and, and pertinent then it should potentially be able to involve any member of the general public. For some people the time and the payments are very, very important. They need not just to fund travel, but it might be to look after dependent partners or children that need to be looked after.

So I think it should be offered. It should be offered at a reasonable level to recompense patient’s input. And the question about whether or not that payment interferes with their benefit payments, so that’s another issue that’s important and I wish that the government would sensibly address that. Because it, the, there is some talk that anybody that accepts payment for involvement in, in, public issues of this kind, like cancer research, but other, other types of involvement, would automatically lose entitlement to benefits. That’s, that’s blatantly and obviously wrong. I wish the government would address that sensibly, to make sure that the hard to reach groups have a voice.

Researchers need to put resources in place to support more diverse involvement and think creatively where to find people. Adverts in the Big Issue and using social media might help.

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Age at interview: 69

Sex: Female

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Well if you put an ad in, I don't know, the Big Issue and you make it very clear what kind of qualities that you're looking for and you don't emphasise, I don't know, kind of structures or intimidating words that might not be hugely familiar to people and you give the emphasis to, you know, something about the role and that you want to recruit people to and what kind of person you're after, then I think you might draw a wider range of people than if you , I don't know, put something on a university website or use social media. If you want to get young people involved or you want to get a wider range of kinds of people in terms of age groups, types of condition, ability to get to meetings. You've got to create processes and structures round the, simple, simple if they’re there but not if they're not again, like can you pay a carer's support so that the mother of a couple of kids with ADHD can actually get herself into the room to be in that discussion about where research should be going or about a particular study? Can you cover her, you know, those costs for her because if not how are you going to hear from people? And you're also probably, when you're advertising you need to be making it very clear – you know are you offering money, are you offering to cover costs? So going out there whether it's Twitter or, you know, something on Twitter that you get someone whose got loads of followers to retweet and then it's, you know, the job isn't in the tweet but there's a link in the tweet to or, you know, Facebook or places where people are. They're kind of thinking creatively about how to get people or going to the mosque. You know, finding the people who know how to reach people and perhaps also thinking, does everything have to be done through meetings? Are there other ways than, and if so does the meeting have to be at, you know, in a hospital or in a university research institute? Maybe you should be having it somewhere else.

And again these things sound banal when you say them, but if they don't happen then you don't reach that wider range of people.

People felt that they as individuals should be given feedback about the difference their involvement has made. They wanted researchers to feel they could be honest with them and that they shouldn’t be patronising. It irritates Carolyn when researchers overdo it with their praise in meetings – they should be able to be honest and critical. She described involvement as ‘grown-up enough to have that kind of discussion’. But people also wanted to hear if and how their involvement had made a difference to research.

Marney receives feedback on how she has made a difference to research.

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Age at interview: 53

Sex: Female

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Do you get feedback or do you get any indication of whether they have used your feedback and acted on it, and what has changed as a result of it?

Well only in the sense that I get the document, I look at it, I flag up, typically I would say three to four specific points to address. I usually try and give an overview as to whether I think the project is, you know, is valuable or interesting or, all those sort of things. So there's a broad sense in how's this project been received, so I tend to give that first and then I say these things, I think, could need , usually fleshing out further, you know I may say things like , "It's not clear to me how the psychologist on your team is to be used, are they going to be used to ensure people are able to give consent or to choose appropriate screening tools for their reaction to something?" or you know, so, so that sort of thing, or issues particularly, as I said, issues around if you're going to require the patients to go through all these tests, I think you're going trouble recruiting them. Or, this is going to be, you know, if it's taking medication and coming weekly for blood tests and, you know, having spinal fluid taken and, you know, these sorts of things. I say, "I think you're going to have a significant fall out rate because this is very difficult to live with if you're also dealing with recovery say from a, you know, from an illness." But the level of feedback I get usually says, you know, this is really useful, we're going to incorporate it all or, you know, this is useful and we'll explain further here or yes I see your concerns but actually I'm restricted to a hundred and fifty words and I've already bottled it into a small a space as possible so it's not possible for me to develop it, or …yes so people tend to give me an idea of how they're going to use my information, which of course is important because that informs how I react to the next set of reviewing that I do.

Helen doesn’t know if her involvement has made a difference. If people don’t get feedback on how they’ve contributed they may not feel motivated to continue.

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Age at interview: 41

Sex: Female

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And how do you feel about not getting feedback on the comments that you've given or the suggestions you've made to researchers?

I wouldn't say that it annoys me massively but, I do recognise it from my own research that that is a very, very important part of the process that isn't happening. And I think, actually, that may well be one of the major parts of the process that keeps people participating’ essentially. Participating because you understand what's going on is great, and then being encouraged to participate is great, and then being supported in your participation is great. Enjoying the participation; fantastic. But, you need to understand what it is that you've done with your participation, you need to know. It's not patting somebody on the head but, it's saying "Thank you for what you've done, that was really useful, more of the same would be great, and this is what we have changed in light of all the comments we received." And even [if] it's just generalised, even if it's only something that's been sent round as 'We have received lots of comments, no names mentioned, these were the comments we received and this is what has changed.' I think that is hugely important, yeah.

They also felt strongly that the results of all research projects should be made public for researchers, clinicians and patients alike. Stephen mentioned the All Trials Campaign, a campaign started by Richard and leading clinicians and researchers, which aims to ensure all results (positive and negative) from trials are published. But when it comes to communicating with the public and reporting research, people felt professionals needed to use simple, plain language and avoid abbreviations or complicated terms.

Researchers need to think about the language they use when presenting information to lay people. They should also provide a lay summary of the study results and acknowledge what lay people have added.

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Age at interview: 63

Sex: Female

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Yes I think they have, the researchers have to write in that way for academic papers and for publishing and everything, of course they do. But I think it's so much their everyday language that sometimes they think what they are presenting to lay people is as, you know, at phrased down area, when actually it's not, you know. It's a bit like this plain English, you know, why use ten words when you could use one? And that's a learning process as well I think, because obviously to present papers, they have to be written in that sort of language, and I think that's a working together that happens and being able to say, you know, perhaps there’s a word that says the same [laughs] thing but this may be easier for people to understand. And we would also request, if they don't send their protocol, that they're going to do a lay summary of the results.

We would say, "Would you consider doing a lay summary so that it’s understandable results?" I think it's also important for researchers to acknowledge people who take part in, who actually take part in clinical trials. Simply you know the ovarian group that took part in that big trial sent thank you cards, and we were just looking and discussing that and how important something , we might think very simple, but it's an acknowledgement that people are actually doing something. Now there might be people who never want to know the results of the clinical trial they were in or anything, that might be true, but I think for those who do, I think it's good for researchers to acknowledge that people are saying yes to their trial or their study or whatever they're looking at.

And so you think that as routine there should be a lay summary of the finding sent to participants of research?

Yes or available for participants of research, perhaps not all would want necessarily to have it, but I do, I think that's really important because without those participants the research wouldn't have happened and that, I think, it’s important that there's an understanding of what the results mean.

And I know they have to be published in a certain way and presented at groups. I think it's also very important that researchers acknowledge lay input when they're writing up their research, because they'll name, you know, everybody, the profs this, the doctors that and research assistants, all sorts of people, but I do think it's important that if they've had input from a group or from a person who is a lay person, that they're equally acknowledged and I think that is important.

Research often shows there is a need for more information, but producing a leaflet isn’t enough. People also need verbal information.

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Age at interview: 53

Sex: Female

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I've had conversations with researchers. Often leaflets are brought up as the sort of answer to problems and I quite frequently say that I think there are quite a lot of issues around leaflets. People are always saying, patients are always saying that they want more information and the researchers and medics tend to respond to this by producing a leaflet and when patients say they want more information; sometimes they do indeed want facts but very often it's much more complex and what they really mean is they want to get their head round what has happened to them and to integrate their experience into their sort of life story and that process hasn't yet happened and the cry for help with this is, "I need more information," but that's not how it's received, it's more complex than that.

So the leaflet may help with this and leaflets are very good for reference but in my view leaflets are pretty much useless if they're not, if the content is not discussed by a person with the individual. So if someone has a particular condition and there are certain bits of information they need to take on-board, that needs to happen in a conversation and then you say , "Now this leaflet summarises some of what we've talked about and you may want it for reference," but to be valuable it needs contained within it sign-posting to some other source because with time people's needs change so the leaflet will only ever answer somebody's needs for a limited period of time, and if you're lucky, it's the period of time that the patient is in at the point at which they're given the leaflet. But, but that's very often not the case because it's a fairly blunt tool. So they are useful but I think professionals tend to only see the benefits, whereas patients have a much more limited enthusiasm for leaflets, and many are filed but never read and I think quite a few sit around on the table for a few days and then they go in the recycling. So leaflets need handling with care [laughs].

Researchers spend too much time making up trial acronyms which patients may find patronising or silly. They should aim for ‘a nice title that people will understand’.

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Researchers spend too much time making up trial acronyms which patients may find patronising or silly. They should aim for ‘a nice title that people will understand’.

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Age at interview: 67

Sex: Female

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There's attempts by researchers to sell themselves to the public and it's one of the most difficult things I've found to do is that, and here's a wonderful opportunity to say it – they love acronyms, oh they do, don't they just love them? They create this research project and they think, 'But what does this look like from outside?' They use some terrible acronym usually accompanied by some disgusting little cartoon figure and think that people in stressed medical circumstances will really like these. They don't, no; no they don't – absolutely horrible. Oh they're all doing it now and you know I just find myself getting more and more po-faced when somebody shows me something, you know and they'd obviously spent a whole evening probably in the bath doing this, you know [both laugh]. I just want to say, "Don't do it, just think up a nice title which is… people can understand, if they can't understand it don't call it something like Burke or Mick or Horse or Hog or just; with a picture of the creature, just find a nice title that people will understand."

Finally, lay people who get involved in research are often passionate and excited about it and could be seen as ambassadors who can support researchers in spreading the word, so more patients know about research and think about taking part.

Margaret sees involvement as a way of informing the public that research happens. She’s been involved in events aimed at raising the profile of research.

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Age at interview: 63

Sex: Female

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I would also see PPI as being a way of informing the public that research happens. So that whenever you go into a hospital, way before you'd be diagnosed with any disease, but you would have an expectation that somebody's going to talk about research and the value of research. So it's not been thought of, 'Oh I'm going to be a guinea pig, they want to do something to me.' So part of our work as PPI reps has been to inform our local area, the public that the sort of research that's happening where I live and how important it is and how we're moving forward. And so those are just small steps but I think to educate the public that research happens and how important it is and it's not to be scared, they're not to be scared of that. That you'd walk into any major hospital or an area where people are doing research and be willing to listen to what they say, not always to sign on the dotted line but be willing to listen.

We had an education evening to…we invited the general public to, to come and to hear what was happening in the area where I live. And the researchers were more than willing to come and share their research which was amazing stuff. But what was the really important thing was that they were willing to talk in terms and words that we could all understand. And people came in and I think they were just amazed at what is happening because they had no concept of, of the level of research that is going on. They'd heard the word but they had no concept of the level, and really what happened, there were ninety people turned up on that specific night and what had happened is that those people had gone out and told other people about the research that's happening. We also had been publishing newsletters on a quarterly basis, I had to go round different areas, usually with lots of photographs because people look at things with photographs, but just to say some of the things and some of the projects that we're involved in because people like to always see a photograph, like to read it, but what it's doing all the time is saying research is of value, research needs to be done if we're going to improve things for people and that's just an education. So that's the area where we've been involved with and it's specifically in the past few months in raising the profile of research.

Last reviewed July 2017.