Joann has worked in biomedical and health research for more than six years, moving from research communications roles to patient and public involvement in research. She has been employed at THIS Institute for the past two years as head of patient and public involvement and engagement, but this blog draws from her experience in earlier roles.
It’s fair to say I didn’t know much about patient and public involvement when I first moved into the field after working in research communications. But it felt like a natural fit. I was excited by the prospect of bringing patients and researchers together, and could see the value of including the lived experiences of patients in the research process.
What I wasn’t expecting were all of the challenges that lay ahead. I found that colleagues were either not clear what patient and public involvement was or not interested in finding out. Systems were not set up to support involvement and there was a lack of funding to promote and raise awareness about it. There was a very narrow spectrum of people who got involved and little diversity. There was also little evidence of how to do patient and public involvement well, and few involvement initiatives were thoroughly evaluated.
I’ve realised over time that I wasn’t alone in dealing with these challenges, and reading THIS Institute’s new report, Involving patients and the public in research, was very cathartic. The findings from the report also underscore some issues that people like me should keep in mind when approaching patient and public involvement:
Not everyone thinks patient and public involvement is a ‘good’ thing
Some researchers I met in my earlier roles were sceptical of asking patients and the public for input into their research. They were not interested in the moral and ethical argument that doing patient and public involvement was the right thing to do, since they felt that their research was inherently aligned with patients’ needs and adhered to ethical practice. Patient and public involvement can require significant investments of time and resources, and with their academic credibility at stake and their value measured in publications and impact scores, they wanted evidence that involvement ‘improved’ the research.
These sceptical researchers find themselves in a world where many funders are mandating that patient and public involvement be included in every research project. Though well-intentioned, this requirement can lead to tokenistic involvement practices. I spoke with a number of patient and public contributors who attended meetings they viewed as tick-box exercises, where they felt their role was to corroborate what had already been agreed. This isn’t good or meaningful involvement, and it’s unfair to the people who gave up their time (often freely) to share their expertise at meetings, hoping to make a difference.
Raising awareness requires time, resources and a coordinated approach
During my early days in patient and public involvement, I was woefully aware of my limited budget to explain, promote and recruit members of the public and patients to our research programmes. Patient and public involvement in research is not an easy concept to explain, especially across the breadth of a biomedical research centre with programmes covering every aspect of mental and physical health. THIS Institute’s report highlights these challenges as well, noting the lack of resources available to successfully promote involvement and the limited awareness among the public about engagement and involvement opportunities.
Communicating about involvement successfully requires time, resources and a coordinated approach. I also think we could work smarter across the healthcare sector and join forces to raise awareness of what contributing to healthcare research looks like, who can get involved (namely, everyone) and how they can contribute. As a research community, we are very good at reaching the motivated and interested altruists but kind of rubbish at reaching everyone else (which probably equates to 90% of us).
Who are patients? What is diversity?
In previous patient and public involvement roles, I was occasionally asked to find ‘patient representatives’ to assist with a research funding application. I remember wondering: who exactly are ‘patients’? Could they be any of us, or just people with certain health conditions? And if the patients we recruit end up being motivated activists, or just whoever was free on the day of our focus group, are they really representative of a whole group? Maybe they are, but we rarely stopped to ask these questions as long as they could make the meeting on Thursday afternoon to review the study protocol.
Though everyone can and should be able to contribute to healthcare research, that isn’t always what happens in practice. Reaching and recruiting under-represented groups to reflect the true diversity of society is challenging, not just because of insufficient funding to raise awareness, but also because of recruitment strategies and bureaucratic processes that work for the system, but not for the people we want to involve.
Moving forward, we will need to be more flexible in our recruitment approaches, using methods like online surveys working with community groups to network and snowball invitations, and running evening and weekend events, which fit their routine and not ours. Whatever methods we use, we should see whether our patient and public involvement activities are in fact representative by employing rigour in our recruitment processes. In doing so we can then establish where the gaps are, who are missing and how we might reach them.
Does patient and public involvement work, and where is the evidence?
Let’s finish with the big, thorny question. The short answer is that we don’t know. Despite clamouring from the literature to evidence patient and public involvement, it is still a relatively new field and, as our report notes, the current evidence base is piecemeal and inconclusive. Some organisations and individuals will argue that you don’t need evidence, since patient and public involvement is ‘the only way’ to do health research. I don’t feel comfortable with that argument. We expect drugs and treatments to be based on evidence. I think we can and should ask for the same of how we design and do research.
At THIS Institute, we are committed to evaluating our engagement and involvement work. As we build the evidence we hope that new ways of doing patient and public involvement will emerge and that researchers and patients begin to see the impact of this work. Only by making what we do transparent and accessible can we begin to build great partnerships and deliver effective research.
Involving patients and the public in research
THIS Institute's new report sheds light on the growing practice of patient and public involvement in research.
It describes the current involvement landscape, and looks at ways to enable involvement in the future. It also explores the impacts of involvement, and suggests that by monitoring and evaluating involvement, we could build a better understanding of what works, what doesn’t and why.