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.
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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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.
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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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.
Young people have busy lives but plenty would be willing. Stephen reaches lots of people through a blog and Facebook.
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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.
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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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.
Margaret advises researchers to make a start with any patients they come across.
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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.
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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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.
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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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.
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.
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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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.
Clinical researchers should involve their own patients. It’s harder for researchers who don’t have direct patient contact.
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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.
Sharon describes fun ways Cancer Research UK brings people together with researchers.
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Science programmes on TV could help raise awareness. Anne suggests recruiting through University of the Third Age and the Women’s Institute.
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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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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