Have you ever thought about involving the public in your research? Perhaps you’ve never thought about doing any public involvement because your research just doesn’t seem suited to it? Or perhaps you have thought about it but wondered how on earth to do it?
Patient and public involvement, often referred to as PPI, is now quite common in research where patients are involved. But it is not always easy to see how public involvement can improve research, especially when there is no clear disease focus or patient group. A lot of the research that the Medical Research Council (MRC) funds is preclinical or laboratory-based science, so this is an important issue for us.
Involving patients and the public in my research
I have used public involvement in lots of different ways to improve my research. For example, I have often collaborated with patient support groups. In one case, this was to set up and recruit to an online forum with parents of children with congenital heart disease.
I have also taken my research plans to the local Great Ormond Street Hospital Young Persons Advisory Group (YPAG) for advice. I asked them about designing my study and telling young people about my findings.
Going to the YPAG was a real challenge because the meeting was organised for young people. So, it was up to me to think how to ask the questions that I wanted answered in a way that they found interesting and could respond to.
No one size for all
The public involvement methods that I have used and the kind of support that I have asked for from my public contributors has been different each time. However, each method always has been carefully tailored to the specific needs of the project. It’s never been one size fits all.
Some of my research has been with whole populations and then I’ve found it challenging to know who to work with as a public contributor. I think this is so similar to preclinical research or ‘big data’ studies, when there is no obvious patient group to involve. In such cases, who are the best public contributors and what is their purpose?
A shared commitment
Earlier this year, UK Research and Innovation signed up to the shared commitment to public involvement. This is a commitment to extend and improve the public involvement that we do.
The challenge for MRC is extending our public involvement activities beyond clinical studies, and embedding it within non-clinical research, or in our funding decisions and strategic priority setting.
A shared challenge
MRC recently commissioned not-for-profit organisation, Vocal to help us explore what we already do and to see if we can take our public involvement to a new level.
Vocal have been helping us to discover examples where MRC is supporting innovative public involvement in non-clinical research. They are also helping us to get a better sense of the challenges for researchers. Many researchers are very positive about public involvement but simply don’t know how to go about it.
MRC is taking on this challenge of increasing our public involvement activities and helping our researchers, particularly preclinical researchers, to do the same. If you work in a research environment, right now is the time to look at what you do and think how you might use public involvement to improve research.
Top image: Credit: kali9, E+ via Getty Images
Dr Rachel Knowles is the Medical Research Council (MRC) Programme Manager for Clinical Research, as well as being a public health doctor and researcher in paediatric epidemiology at University College London.
Her key responsibilities at MRC are clinical research policy, ethics and governance.