I have handed this week’s blog over to Anne-Marie Boylan, a researcher with the Health Experiences Research Group at the Nuffield Department of Primary Care Health Sciences. As she explains below, for the last 18 months she has been working with Louise Locock, our Patient Experience Research Fellow (and chair of our Patients Active in Research – PAIR – group) to gather in depth accounts of the experiences of those who have been involved in health research, not as study participants, but as active partners working alongside researchers to decide what research should be done, how, and what happens to the results. Indeed, she has got to the very heart of the issues that we deal with in patient involvement on a daily basis.
What is involvement? How do researchers involve patients and members of the public in research? Do people even want to be involved in research? Should they be paid? Who, if anyone, do they ‘represent’?
The new involvement site on Healthtalk.org tackles all these questions and more.
Healthtalk.org contains over 80 collections of patients’ experiences of health and illness topics based on rigorous research by the Health Experiences Research Group at the University of Oxford.
It was founded by Drs Ann McPherson and Andrew Herxheimer who, after becoming ill, realised they wanted more than just medical information – they wanted to know how other people lived after getting a diagnosis and so Healthtalk.org was born. In recent years it’s been expanded to include a section on experiences of medical research, including what it’s like to take part in a clinical trial or to donate to a Biobank.
As well as these studies of research participation, the latest project, funded by the Oxford Biomedical Research Centre, is aimed at patients, carers, members of the public and researchers who are interested in involvement. INVOLVE, the national advisory group supporting involvement, defines it as research done ‘with or by members of the public rather than to, about, or for them’. And Derek, one of our participants defined it as the ‘ability to effectively influence and shape the decision making process’ in research.
Our research is based on interviews with 37 people who have been involved in health research in various ways and for different lengths of time. The analysis of themes from their interviews is illustrated by video and audio clips. The issues covered range from what involvement is, why people get involved, what facilitates and hinders it, and what it can look like in practice.
When I started this research with Louise Locock 18 months ago, I wasn’t really sure what exactly involvement added, how best to do it, who should be involved… Most of the questions at the start of this post (and more!) were mine. There’s no better way to find answers than to immerse oneself in an in-depth qualitative exploration of the subject. But as many of you don’t have the luxury of doing that, I’m very pleased we can share our findings with you.
Involvement is something that has become a requirement with the major health funders and, as Dave G, one of our participants said, it’s ‘now going to be part of academic life’, so it’s something we as researchers need to think about.
So what do I think about it? Recently Kath, a participant and member of our advisory panel, who has been instrumental in publicising the site, tweeted me saying: ‘You’ve created something worth shouting about’. I responded: ‘With lots and lots of help from an amazing community of people’. It hit me then that, for me, that’s what involvement is about – community, increasing the sum of good in the world, trying to make health research better.
Although it’s been an established practice for many years in mental health and cancer, it’s in its infancy in many areas of research. We need to know more about it, so our exploration doesn’t end here. The next phase of the study entails interviewing researchers about their thoughts and experiences of involvement. So watch this space!