As well as asking people what changes they had seen in involvement, we asked them what they thought the future held and how they would like to see involvement develop. Some of the things people raised – such as better training for lay people and researchers, finding ways to measure the impact of involvement, and increasing the numbers and diversity of people involved, are discussed in more detail elsewhere.
People felt there was still a lot to do in terms of embedding involvement in research, and a need for strong strategic leadership. Dave A said he still felt as if ‘I’m preaching to the converted a lot of the time, and I’d like to get away from that.’
Clinical research without patient involvement should be seen as unethical. Roger B wants it to be compulsory for researchers to publish their research.
Clinical research without patient involvement should be seen as unethical. Roger B wants it to be compulsory for researchers to publish their research.
Age at interview: 67
Sex: Male
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The big thing I would like to see happen in fairly short order, the next two to five years, is the universal recognition that medical research, clinical research without patient involvement is actually unethical. I think if we can achieve that point we’ve made a huge step forward. I think the ‘All Trials campaign’ the work that [Ben Goldacre] has done is absolutely superb. You know, all publication, everything should be published. I’m a believer, that, if an organisation has failed to publish the results of a study which has been finished, and has been summarised, ethical committees should actually stop them from running any more research. Let’s keep it as simple as that – you know stick and carrot – there’s a pretty hefty stick there but the carrot is, what we need, and what we want people responding to, and, and you know the idea that, that horrific event at the, you know happened some years ago where, you know, a young member seriously, physically damaged, their lives threatened, you know in the Phase 1 study of a new agent. The fact that that could have been prevented if some research had actually been published, is, a horrible condemnation, of not necessarily secrecy, but, it’s the way it comes across. You know secret publication processes – got to stop, got to stop.
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.
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.
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.
The next thing on the agenda is developing lay people to work strategically at national and international level.
The next thing on the agenda is developing lay people to work strategically at national and international level.
Age at interview: 62
Sex: Male
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So it’s training about are you asking the right questions? Are you asking them in the right place? What are the questions we need to ask and where do you ask them? Because there’s a difference between asking the questions to make sure that policy documents have research in them. The NHS constitution’s a great example. We’ve got a duty to talk about research in there. Getting that into that policy document and getting it honed in the right way takes a lot of time. How do you change policy in Europe? How do you get a group together? So we need to then train people up in that. We need to help them and give them peer support. We need to give them sessions or about master classes – I hate that word because it’s the master. But those, you know, a real sense of ‘Where are you asking questions? What are you asking? Why are we asking them? Are we working across patient groups?’ So that’s the bit for me that’s next on the agenda and I think it will take on.
Some lay people need to get involved at a political level, to push the government and NHS to take involvement really seriously.
Some lay people need to get involved at a political level, to push the government and NHS to take involvement really seriously.
Age at interview: 54
Sex: Male
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I think we're probably at a watershed in terms of PPI. I think the government and the NHS mandarins need to really take PPI seriously and get out of their tick box mentality. And the best way I think for that to happen is for people that are, patients that are heavily involved in PPI to actually get involved in committee work in the political world and I don't…it's not something I aspire to but it probably is the best way of getting the outcomes that I'd like to see. But once there to be treated with respect, it's a very dangerous route to go down. I think I would crumble at the moment even with my new found self-confidence. But I'm a pragmatist and I accept that there are certain routes that you have to go down in order to make change sadly.
Several people mentioned the need for more common approaches to
measuring the impact of involvement, including providing them with feedback about the difference their involvement has made, better working across conditions and organisations, and more sharing of expertise and lessons learned. As Francesco said, ‘There’s a hell of a lot of silo working’; Brin felt getting involved in projects which were not about his condition (stroke) was ‘a bonus for me, you know, to move out of that sort of ghetto.’
Building networks of people involved across different conditions would be valuable.
Building networks of people involved across different conditions would be valuable.
Age at interview: 69
Sex: Female
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The changes in future that will come about should make it more possible for me to be having conversations with people doing this kind of stuff in, say, stroke research. Say well there are probably a lot of things in common. Maybe there could be some joint studies, areas we haven’t gone into yet because we don’t see enough of each other across – I know a lot of the people involved in cancer, but I know hardly any of the other people involved in the other fields and I think it would be really good if we did. Because we probably have this common cause to make about PPI and there may be particular things about particular studies where new ground could be, you know, could be broken. And I think also, you know, the ability to say the skill, if it is a skill, “I was wrong about that,” you know, should be, you know, should be able to do that as well.
Derek gets irritated by researchers keeping ‘their’ lay people in silos. There should be a national register of involvement opportunities so people can spread into other areas.
Derek gets irritated by researchers keeping ‘their’ lay people in silos. There should be a national register of involvement opportunities so people can spread into other areas.
Age at interview: 62
Sex: Male
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So, building research partnerships is a joined-upness, because, fundamentally – and it’s in part of my last answer as well – fundamentally involving people is about a relationship. It’s about changing the relationship both in the culture and climate, how we work, but also about why aren’t we learning from each other. Because patients don’t want, we keep our patients in silos. The PPI leads in all of those areas, most of those say, “Well, I’ve developed these people, I don’t want you pinching them.” Right? Because what they don’t want is them going on to national work because they’ve invested in them. And I was once challenged about that and I said, “Look, learning is about helping people to fly and grow their own wings. That’s what a teacher does, you let people go. She should always be delighted when they’re doing more than you ever expected of them.” And I think that’s what we see. Patients don’t have one disease. What irritates me more is I get asked about swallowing trials. I get asked about eating trials, diet trials. I want to know about trials in cirrhosis, psoriasis. I want it on osteoporosis, which I think, given my mother, I’ll probably develop. I want to know about mental health. I want to know about, you know, living the effects of radiotherapy treatment, radiation, which isn’t just in cancer. So, why do I get fixed in my little box? And researchers, why do they come along and because they can only come to me and ask me about that because they know I’m a cancer, that’s wrong.
We should have a national register where people log on and say, “Here’s what I’m interested in, tell me about the trials.”
People also identified different stages of the research process where they felt involvement needed to improve, such as early on in setting research questions and research design, and dissemination of findings at the other end. There was general agreement that better public awareness was important and people suggested engaging the public using the media, especially social media. They felt the NHS needed to do more to promote research and research participation to all patients.
People suggested there needed to be a culture change within research to ensure involvement wasn’t seen as a box-ticking exercise, but Peter suggested that the enthusiasm he’s seen in younger researchers indicates the future looks good for PPI. Richard said an important part of changing the culture would be to give involvement a better, more accurate name. Andrew felt we need to have some ‘clearer national strategies being implemented at local levels, which will encourage the kind of joining up between the research community, the professional research community, and patients as individuals’. Richard argued that ‘PPI itself doesn't have a future – it's a means to an end. So we have to look at where we're going with research. And to me research should be an integral part of treatment and research into data should be an integral part of the data that we already have - and PPI then simply becomes part of those things.’
There is less of a tick-box approach than there was, but Helen would still like to see more involvement in designing research.
There is less of a tick-box approach than there was, but Helen would still like to see more involvement in designing research.
Age at interview: 41
Sex: Female
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If you're going to involve the public and patients in research they need to have a stake in designing research rather than being - I think the model at the moment, it's moving slowly away from people being engaged, and told that they're participants, and actually being research subjects or, I don't know, proof readers, or whatever else. I think they are beginning to move from being very peripheral and very tick box, towards being actually properly engaged, which includes training; which includes, you know, meetings that aren't about the research but, brings them together. Which includes being you know, being sent things between meetings to keep the interest and to keep the enthusiasm, which includes being told what they have done. But, maybe we need to move it on a little bit more to – ‘OK so you've been engaged, here are seventy five per cent of the research that we want to do, why don't we sit down together and talk about the other twenty five, and what you think might be important to find out by doing all of these things’. What do you, as PPI participants, co-researchers, what do you want to find out?
Sharon would like to see more public awareness of research. Opportunities to take part in research should be just a normal part of clinical care.
Sharon would like to see more public awareness of research. Opportunities to take part in research should be just a normal part of clinical care.
Age at interview: 44
Sex: Female
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What do you see for the future? What is next for research and PPI?
Hopefully through social media. I think the future is probably going to be social media and I think much more of patients viewed as partners. I'd really love to see research and patient experience become more integral. So patient satisfaction surveys don't mention research, you know, they're just almost seen as two separate things and I'd love to see research as expected to be part of your clinical practice, clinical care. I think oncology is ahead of the rest of the specialities, I think it's probably, yeah I'd say it's ten years ahead of , of some other areas. So I would like to see research as viewed as part of your clinical care; good quality research; patients involved in shaping what the research questions are; funding that patients could take, could lead in some research projects and that the results are shared really widely and that there's good access for everybody to find out what's happening in trials and in what other results and just much more easy access of accurate information.
Richard wants to see research and data sharing for research really embedded throughout the NHS. The role of patient involvement is simply to support those goals.
Richard wants to see research and data sharing for research really embedded throughout the NHS. The role of patient involvement is simply to support those goals.
Age at interview: 54
Sex: Male
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What I would like to see next for PPI is two-fold. Firstly, I would like to see a better name for it than PPI. I've no idea what that might be, but already PPI has become, I think, just another three letter acronym and it's too easy, it trips off the tongue. We need to find a better way of describing it. Secondly, I think we need it more embedded in what we do. My personal vision would be of the National Health Service as a national health research service as well. So, research needs to be embedded in the NHS as method of treatment or as a way of treating patient records and patient information. Either way it doesn't really matter, but you have all that data and you have all those opportunities and I think we need to capture them all. So, that's across all illnesses and diseases. So, where we have a situation in cancer where very nearly, very nearly a quarter of all cancer patients will participate in research at some point during their treatment. It will be lovely to see that in all other diseases as well. Yeah, one in four patients in the NHS taking part in research. But actually too it would also be nice to say that all patient records and information are stored in a way that's accessible, that's transferable where we don't have different computer systems or different coding systems, and we can actually start sharing data about massive population numbers and seeing what comes out of that, so I, there are two parts to it. PPI, therefore, the future of PPI is simply to become involved in both those processes. PPI itself doesn't have a future – it's a means to an end. So we have to look at where we're going with research. And to me research should be an integral part of treatment and research into data should be an integral part of the data that we already have and PPI then simply becomes part of those things.
There were some worries about how constant NHS reorganisation might damage involvement networks and relationships that had been carefully built up. Both Francesco and Andrew felt some recent reorganisation might make good involvement more difficult, and Andrew was also critical of an emphasis on medical research as a source of wealth creation for the country. Helena was worried that government commitment to investing in research could be withdrawn at any time, with implications for PPI. On the other hand, Dave G thought some recent events in the NHS had permanently changed the culture in favour of more ‘patient power’.
Publicly funded research must start from the needs of patients. Andrew worries that both organisational change and pressure to make money out of research may damage involvement.
Publicly funded research must start from the needs of patients. Andrew worries that both organisational change and pressure to make money out of research may damage involvement.
Age at interview: 64
Sex: Male
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So, I think that one of the tasks that we really have to do is to work with researchers not just about the mechanism for involving patients, because I get quite a lot of that – I mean I do get, you know, invitations at, at the thirteenth hour of a research proposal to help find some patients to get involved in this because ‘we hadn’t thought about it until now’ kind of thing, you know. We need to start, knock that on its head because, I mean if we’re spending the best part of a billion pounds a year of public money on research that needs to start from the needs of individuals and the population. Patients and the public to be involved in that dialogue.
One of the real concerns at the present time is that the advent of academic health science networks and the reorganisation of clinical research networks might actually distance, this whole process from the actual health and social care needs of the population. Now actually, I think lay and patient and public involvement people involved in this can help to allay some of those concerns and can help to get it right. But, at a time of very significant change, and particularly when the research community is being told that the main driver for medical research is actually economic success, there’s, there’s a real concern that, you know, we might actually be taking a step back rather than step forward in terms of patient involvement. So there’s a lot of education to be done, a lot of lobbying and, upping the expectations about the role of patients in research. Otherwise we’ll simply go on supporting research, which may be economically a money-earner, but might actually not meet the needs of the population. I’m not saying that that is happening, but it is a danger that we need to constantly be guarding against, I think.
INVOLVE is a great organisation, but there’s a need for more independent patient activists to ask challenging questions about research policy.
INVOLVE is a great organisation, but there’s a need for more independent patient activists to ask challenging questions about research policy.
Age at interview: 64
Sex: Male
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INVOLVE is a great organisation I think, the information that comes out from it – publications are good. But, it is enormously reactive, I believe, and I actually think probably that PPI in this area needs something which is rather more proactive, and not sure where that’s coming from. At the moment, by and large, PPI deliberations , at the strategic and national level, are lead from within the organisation, either through the key staff in NIHR, or through INVOLVE. So, well that’s actually quite a, challenge for them I think. You know, lots of very good people with their heart in the right place, but at the end of the day their funders are NIHR and the Department of Health. And the independent charities, I mean look at Cancer Research UK or Age Concern or Age UK – all these other kind of organisations, where, independent leadership might come from. Surprisingly in my view, they’re not, terribly focused, around the research activity. They’re, you know something like Cancer Research UK, yes, it’s entirely wedded to research, but, it funds it, but, it’s not necessarily equipped to ask the key questions about effectiveness, of the way in which, government money and effort is being spent. So perhaps there’s a, there’s a need for active patients to begin to, lobby and become, more in the nature of activists in this area, I don’t know. Certainly been some interesting web based activity recently which shows that some of us are a bit worried but [laughs].
Helena worries whether government investment in health research will continue; ‘the plug could be pulled at any minute’.
Helena worries whether government investment in health research will continue; ‘the plug could be pulled at any minute’.
Age at interview: 43
Sex: Female
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What do you think the future is for PPI?
I don’t know actually. I was thinking about this the other day. I think the plug could be pulled any minute. I would – I hope it's not – but it depresses me how few people really understand why they're doing it and really get it and so I think it could quite easily. All it needs is a change of government that thinks actually, 'Do you know what we're not going to put money into research anymore.' And it's quite surprising that they did in the last budget. It's one of the few things that wasn’t cut was health research. And it was one of the few things that they continued on with, you know, that no decision about me without me. But that’s just a bunch of politicians and they can change at any time and I'm not convinced that it's rooted enough that it wouldn’t just wither. And it does worry me slightly that, career wise, and partly worries me slightly career wise that the plug might be pulled and so those special skills I have are not useful anymore. But also I kind of - I'd like to do some research which involved other people but I wasn’t the patient as well; that actually I was just an ordinary researcher and I needed to ask other people for their expertise because partly that’s just interesting and, partly because it's hard work being the patient as well as the researcher because you're doing two jobs.
Dave G thinks there has been a cultural shift towards empowering patients. Some researchers may feel threatened by it, but partnership with patients is here to stay.
Dave G thinks there has been a cultural shift towards empowering patients. Some researchers may feel threatened by it, but partnership with patients is here to stay.
Age at interview: 67
Sex: Male
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It's a tricky one because a lot of researchers feel threatened by it and it's quite obvious at the [place name] end. They feel that somehow the lay researcher will somehow impinge on their professionalism. Well I don't think that's true, I mean you have teaching assistants in school, you have nursing assistants in the hospital, but they don't impinge in say a qualified nurse’s job or a surgeon’s job.
I think a lot of it is, it's a culture change within the academic community and some people have made this culture change and some people haven't. But I do believe that with the, especially with the Francis report*, I think that's been a whole nest of hornets kicked over and we have a new paradigm now, which is patients will be involved more in monitoring what a hospital does and by implication, monitoring what research does by working as part of a research team. Not as a patient participant who is fed bits of scraps and is there because they are the token participant. 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 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.
* The Francis Inquiry into poor patient care at Mid Staffordshire NHS Hospital Trust, which published its final report in 2013. This led to a number of government policies around listening to patients and improving care.
Last reviewed July 2017.
Last updated March 2016.
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