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Patient and public involvement in research

Raising awareness of opportunities for involvement and finding new volunteers

Finding enough volunteers for patient and public involvement is a challenge, especially as the demand for volunteers grows, and the people we spoke to said they actively encouraged others to get involved. Many said raising awareness and using creative ways to reach people was vital, so it wasn’t just a matter of chance who found out about it. Most agreed it was good practice to advertise but not just in a few traditional places.
 

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. 
 

Those already involved can help find new volunteers. Kath says we can find different ways to involve people who aren’t used to lots of reading and provide training.

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Age at interview: 55
Sex: Female
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I think you need to do more outreach. I think actually if people out in the community don’t know that it’s possible to get involved, then you’re only going to get the very few people who find their way in through the thin end of the funnel. I don’t think that it’s good to have the same people doing the same things over and over again. But I think it’s a real shame if you’ve helped people learn huge amounts about these things to then just say, “Okay you’re too stale. Go away.” What you need to do, is think about actually how those people can be useful in, in different ways, and people who’ve been involved in projects in one way, might then be help, really helpful in other ways. 

And also they might be really helpful in helping you to recruit and find other people: talking about what they’ve done, how they’ve experienced it, what they’ve learnt from it, what they’ve got from it. So, I think creating pools of, of people who are committed to involvement in research is really, really valuable.  

Yeah. 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.
 

Young people have busy lives but plenty would be willing. Stephen reaches lots of people through a blog and Facebook.

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Age at interview: 18
Sex: Male
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For me it’s probably been finding time to kind of do all this along time studies and growing up and being a kind of young person as well. But as I say the kind of people who I kind of work with are very understanding about it, and as I say it’s kind of a casual voluntary basis.

Do you think it’s difficult to get young people like yourself generally involved in PPI?

Yes, I would say so, because obviously young people naturally lead very active, busy lives. and obviously with something like cancer, not as many young people get cancer, so there’s going to be a less kind of cohort of people to kind of, to choose from. But I think if we kind of target them down the right routes, there is plenty of people who would be willing to take part.

So I suppose young people are more open to things and to modern forms of technology, and indeed yourself, you’ve already embarked upon a blog. Is that right?

Yes, it’s kind of a, yes, it’s it kind of, I say I’m blogging my life and kind of the things I hope to achieve, say my, my own disease is kind of, not, how can I phrase that, not deteriorated but… perhaps limiting, so what I have decided to do with my time is kind of start up this blog, and raise awareness of cancer in young people and at the same time raise funds and as I say just have a blog and let other people know what it’s like to have cancer.

And have you struck a golden seam, are people interested and actually reading your blog?

Yeah, within, I think it’s not even 4 weeks old yet, and I’ve got 3,000 likes on Facebook. I think, it’s reaching 35,000 people and I have messages from all over different countries, Romania, Australia, USA, all showing their support, and I’ve raised over, probably over ten grand already. So that side of things is really going well.
 

We need to work harder to raise awareness of public involvement and get a wide range of people involved in all research.

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Age at interview: 57
Sex: Male
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But people out there don't know and it's not just from minority ethnic communities’ point of view, I think communities in general, they don't actually know, right, what is the public involvement in health and research yeah. So there needs to be some kind of, I don't want to use the word positive action, but I suppose there needs to be some kind of a work done at the grass root level by health professionals in those particular things – whether it's to do with the health liaison teams or health link workers or whatever they have or community nurses or whatever yeah. – is to encourage people to get involved but before they do that to say, "Well actually what are you getting involved in yeah?" I think what, I mean there was one piece of research that yeah I think, which was not work related was looking at the heart and diabetic, diabetes within the minority ethnic communities. And that was, and I took part I think what nineteen, eighteen/nineteen years ago yeah. And because of my work involvement because I was the Council's Race Relations Officer so I was involved in that particular thing as well. But a) that research was specific to one particular group. But in general my anecdotal evidences and experiences has been that there's a wider research and then some clever clog will say, "You have not addressed the ethnicity issue." OK so we will set up a working, oh sorry, we will set up a, what's the word, a focus group, right? Could you identify half a dozen or a dozen people from minority communities in that particular focus group? No, that's not the way, yeah. 

But I think there needs to be a regular feeding in into that we need people from the community. We are living in a diverse community, yeah. There is an under representation, yeah, so you are not coming in as an ethnic representative, yeah, but you're coming in as a representative who happened to be from a minority group but you're contributing to the research. And the research is not to do with race or gender or ability or disability, you know. It's a piece of research yeah and we want your understanding. And I think that somewhere along the line that message needs to come out because otherwise the feeling is that anything to do with race – we'll come to that particular point. 


Although people felt it was essential to reach out to people from different backgrounds, they were concerned how to do this without being patronising. Helen said she could imagine people saying, “Don't treat us as special cases; we are part of your community.” Nadeem said, “Unfortunately somehow that message comes out as that I am only being asked because I'm different. I'm not asked because I will bring something more.”

There were mixed views about whether researchers not used to involving people should just plunge in and give it a go informally, or whether they needed to choose people carefully and have a more formal process. Having a paid patient and public involvement co-ordinator who can spend time supporting a database of interested volunteers can help. Andrew pointed out that it’s not just patients who may need training and support – researchers need help too.
 

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.
 

Dave G advises researchers to select people carefully. He’d like to see a citizen researcher training course to create a pool of qualified people.

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Age at interview: 67
Sex: Male
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And I believe actually to get a research proposal passed these days you have to have patient participants. That's why I say it's not just, oh you have a token participant, you sit there and you say nothing and you can tick the box and everything's fine. You need to be a genuine researcher but you have to choose your patient participants to take part in research very, very carefully because there are people out there who will, quite frankly, disrupt any research team. They have their own agendas and you will destroy in your research team, you really do have to be careful who you recruit to be a patient participant. They need that level of commitment and professionalism.

And how do you think researchers can go about finding the right people?

I do think there should be some, as I've said, some degree of training, some qualification, if you like, as a citizen researcher either internet-based or perhaps run at universities, and there you have the pool of people who are qualified in a degree to be citizen researchers. And if say this university you have a pool of citizen researchers and I'm at the department and I want to involve patients, then I have a people there I know have been recommended, have been screened, have been trained to a certain degree and are reliable and I can use them, rather than picking someone from the community because, you know, we must have balance here, so we'll pick this one from community, and they turn out to be a disaster. I've actually been Chair of some, of a committee of a group that was running with the PCT before that went down the plughole. And we've had people on there, patient participants on there who quite frankly have been disruptive and it's been an embarrassment as Chair to have to say to someone, "If you don't actually stop being disruptive we'll have to kick you out of the group altogether". And that's really, I find that quite distressing. So I do believe patient participants need to be screened and need to be trained.
 

There should be open recruitment processes to involve a broad range of people - it’s dangerous to assume you have a representative view by involving one person.

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Age at interview: 64
Sex: Male
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I get slightly worried, and again I see this when I'm reading research proposals, where researchers have assumed that because they've got one patient involved they have therefore got a representative view. I think that's always dangerous. I mean, I think it gives a researcher a misguided sense of the degree of patient involvement, and I think it puts the patient themselves in a very vulnerable position. 

INVOLVE guidance I think suggests that there should be at least two patients involved in any particular set in an organisation, research project, and whatever. And I think that's absolutely right and, in a sense, the more the merrier. You know, if you've got five patients in a room, you'll probably get ten different opinions in the course of a meeting, which is fine. I mean that's good, it's important to explore the parameters of any particular set of decisions and decision-making. It's then down to the people who are actually making the decisions, to make a decision, but, they need to be hearing, I think, as wide and diverse a set of users possible. So, we, we shouldn't be seen as representative, we simply represent a commitment to openness and accountability, and a conduit, perhaps, to a range of views, which the professionals, because of their education training, sense of purpose, direction, would not necessarily come up with themselves. 

I think there are a number of consequences that flow from that. One is to do, as I've said, with the whole process of recruitment and development, of PPI representatives and one of the things that we ought to be paying, I think, more attention to is the development and support of anybody that's involved as a PPI representative, as a PPI person and or as a lay member. I think the other side of this, is the training development of researchers themselves, in the use of PPI, and there's actually a lot of joint work, simply around their whole business of development, which could and should go on. And I think should be more proactive and better developed than it is at the moment. There's no shortage in information out there, but I'm not sure how well it's being communicated or how systematic the whole business of researcher development in the area of using PPI is. 
Formal recruitment processes (in which people send in a written application and a CV, and maybe have an interview) are increasingly common. But people had mixed feelings about how to balance the need to encourage others to volunteer and make it easier to get involved with the need to make sure they are ‘right for the job’. Some felt people needed to be computer-literate and know something about science, but others said anyone should be able to do it, no matter what their background. Derek pointed out that he knew nothing about science and joked that his science teachers would be ‘turning in their graves’ if they knew he was involved in such scientific work.
 

Catherine is used to applying for jobs with a CV, but she wonders if it might make it harder for some people to be considered fairly.

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Age at interview: 51
Sex: Female
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I guess because I come from an academic background and I've had a normal business career until I became ill myself a few years ago, I would always apply for a job via a CV and it wasn't a barrier to me to do so.

I also can't imagine the sorts of responses and replies that people get. I have tried to get onto two other committees which I feel very passionate about and haven't made the shortlist despite being able to write a very good CV and despite being able to have a very wide range of experience of medical conditions, and in fact queried one of them as to why I had failed to get on. And it seems that, many letters came out saying the standard was very, very high from all of the applicants and you've failed to achieve it. Given that I've been ill for sixteen years with ME, my disability, although not physically obvious means that I lost out on a career and therefore my CV shows me as self-employed for sixteen years and I don't have a high flying CV, so I've actually complained to one thing that I tried to get onto which is a GP commissioning board – you may know that we're outsourcing the NHS to GP commissioning boards, and I applied to be a lay member on a GP commissioning board and failed, and I said that unless…they weren't able to tell me how many people who were disabled were short-listed because they didn't collect that data and they said that as they interviewed on the telephone, yet again, they couldn't see how many were disabled and I said, "Ooh that's pretty poor because people's disabilities aren't necessarily visible, I suffer from an invisible disability and that answer's not good enough." So they're unfortunately answering under the Freedom of Information Act some questions that I've raised, which they have come back and said, "Your questions have raised some very important issues for us in how we assess potential members and we are looking into it." 

So I think that, it would be very difficult for somebody who hasn't come from such a professional background as my own to apply for these jobs when there is a, a CV plus a questionnaire and so forth to answer because there is , there is a requirement to do so. However I can't say at the other end of the spectrum the people who assess the people to join, what made them choose the various people because I only know myself and I only know my other parent carer in my group and I know that we're both academic. The conversations I've had with other people didn't allow me to find out, you know, whether they had medical degrees or had worked as a pharmacist or a nurse or whatever, and whether they mainly co-opt people who come from medico/legal backgrounds for example.
 

Peter says you need fresh perspectives but also experienced people who understand science and research. He has learnt this through being involved for 8 years.

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Age at interview: 56
Sex: Male
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I think you need both, I think you need both. I think you need because the freshness of someone who’s recently been a patient is always going to be very valuable but, and that input's always very valuable and the passion's always very valuable. But I think also the experience of someone who’s been involved in research for quite a while is also valuable because you do have to learn a certain level of objectivity, which doesn't come easy when you're very recently a patient. So you have to learn that and acquire it and you also have to learn about the research process: about what a protocol is, and what an ethics committee is, and how funding happens. And if you want to contribute you have to understand these things and you have to be realistic about them. So that experience is also valuable. So I think you need both and there's always room for both I think. That's why we have to make sure that we're always doing something to recruit new people in to PPI because at the beginning I didn't have any of those things. I was a patient with my experience and my story and I knew very little about academic research or medical research or the processes or the funding bodies or how it works. But now, eight years down the line, I could argue that I'm not an expert, but I'm reasonably well versed on how it happens.
Many different suggestions were made for good places to find people and ways to encourage them to come along. As Janice said, we need to ‘widen the net’. Maggie had talked to women at her swimming exercise group, and Richard recommended ‘sitting down with patients over a cup of tea in a café. Just ask two or three people there and run an idea past them and see what they say.’ 

Several people talked about using blogs and twitter, and some had used charity fund-raising activities to raise awareness of research at the same time. Reaching out to people where they are already rather than expecting them to come to you was a common theme. Charities, support group meetings, hospital clinics and waiting rooms were all mentioned, and of course people who are already taking part in research as a participant may be particularly interested.

We need more inventive ways to reach out to people where they are – in GP waiting rooms, or at the school gates.
 

Clinical researchers should involve their own patients. It’s harder for researchers who don’t have direct patient contact.

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Age at interview: 54
Sex: Male
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Whenever I've talked to researchers about PPI and how they feel about PPI, it falls into two categories and perhaps I've been very lucky, or very naïve, but it is only two. The first are those researchers who have used it, often used it over and over again, who think it's absolutely wonderful, and I like talking to them because they're full of great stories. But the second, and far more common, especially amongst younger researchers is the acceptance that PPI is a good thing. Not just that they have to do it, that's it part of the process that they won't get funding if they don't have good PPI. The ones I meet tell me they believe in it, it's a good thing, they want help with their research ideas, with their proposals and the question they ask is ‘How do they get hold of it?’ ‘How do we do PPI and where do we find the patients?’ 

And it's a very glib and simple answer, but if you are a clinical researcher then the PPI people are out in your clinic and the way you get hold of them is to ask them. And the way to do it is to talk to them, then listen to them, and that is a glib, simplistic answer but ultimately, that is the reality of the situation. For researchers in laboratories it is much harder. For statisticians, for methodologists, it is much harder because they don't have the face to face contact with patients, but there are plenty of patient groups out there, and there are plenty of hospitals treating patients, and it still can be done. You just have to stop and think, 'Well actually what do I want PPI to do?' And that, to me, is the key – what role do you want the PPI to play? Then, from that, you actually move into, 'Well where will I find someone to do that? Who will help me?' And there are always people around. Just ask the questions and sooner or later someone will come up with a useful answer. It's a little bit like a research project of its own, I suppose. But that's the question I'm asked most often, ‘How do we do PPI?’ And I think increasingly there is an acceptance, not simply that it's now part of the process, but actually it's a good part of the process, it's a good thing to do.
 

Sharon describes fun ways Cancer Research UK brings people together with researchers.

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Age at interview: 44
Sex: Female
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And actually Cancer Research UK which is really interesting because they had a – I thought it was really interesting, I wish I'd kept it – but they had a 'Come for Cake' so engage public and patient and public involvement but there was free cake. So to get people to come along, which is just a bit of a shame that they had to make some cakes. And then I actually went along just to see what they were doing, but it was a really good patient involvement person from Cancer Research UK, she was new in post. But what she had was a way that, so Cancer Research UK is an organisation – how they could get involved with public involvement. So some things they had, for example, were take part in a 5K run and do a talk at the end of the 5K run; or help at social media but they had, so again it's trying to connect the researchers with patient and public involvement, which actually I thought was a different view rather than trying to connect the public with science; it's trying to connect science with the public. And the people involved with science trying to make them see the patient on the 5K run and to have the two together at the end, I thought that was quite a clever idea yeah.
 

Science programmes on TV could help raise awareness. Anne suggests recruiting through University of the Third Age and the Women’s Institute.

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Age at interview: 81
Sex: Female
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Well one thing I'm going to suggest Anne-Marie, and you might think it's strange but it could be very, very helpful. You know that television programmes like Horizon and Panorama deal with the serious side of science. If we could get somebody there to pick up on what PPI does and can do and will do and has done, then you're straight away through to millions of people who will think, 'Ah, well maybe I should be part of this, maybe I can do something.' Ah, yes there are links on the Web but I'm thinking a much greater and a more visual thing with some scientists as well, would be a very good idea. It would take knowledge and maybe a bit of string pulling at the BBC or ITV but it, in my opinion, it could and should be done and could lead to really great things for PPI, yeh.

And do you have any messages for anyone who's thinking about getting involved in PPI?

Yes get on board, join us. Yeah bring your ideas with you.

How would you talk them into it?

Well it would depend on the person and what I picked up from the vibes from the person and what I knew of their interest in research or a condition, but yah, yah.

You can just do it.

There is another source which again has not been picked up to my knowledge. There's something, I'm not involved with it, called U3A which…have you heard for U3A?

Well it's ‘University of the Third Age’ and in [place name] alone we have two branches. One meets in an afternoon of one day and one in the evening and they're mainly scientists, they're mainly retired people but they've got enough brain and interest to go and attend to meetings. I think you could at PPI access U3A head office and go through, thinking of a more local approach. I'm sure you'd get volunteers, absolutely certain you would – U3A. Another one is the WI, again nothing I've ever been associated with, I'm not your jam-making housewife as you know, but you've got people there who are often carers and interested in the condition and maybe worried there might be a familial link, and there are these public bodies with interested people by definition in them. So…then there's the Scientific and Medical Network, don't know if you've heard of that? Well I was a member of that for years and had things published with that. That is, again, they generally meet in counties, have a county meeting often at a university or it might be a public hall, it depends. So you've got all these bodies of interested people, interesting people, you could access and should access.

Anne suggests recruiting through University of the Third Age and the Women’s Institute. See also: 
Representing a range of views and experiences: diversity
Representing a range of views and experiences: being representative
Difficulties and barriers to involvement
Factors which make it easier to get involved
Path to involvement– how did people find out about it?
Training and learning’ 
The costs of being involved and payment

Last reviewed July 2017.
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