Working with members of the public at the heart of research is key to success. Professor Lindsay Bearne and her team are champions of public involvement. At King’s College London, they worked in partnership with people with peripheral arterial disease to design a clinical trial.
Public involvement is absolutely crucial to produce relevant research and our advisors helped us in really tangible ways.
Patients are experts about their own condition. For many years, I have been working with older people who experience cramp-like pain in their legs when they walk – called intermittent claudication (IC) – due to a condition called peripheral arterial disease.
Many of them told me they felt that regular supervised exercise therapy – the recommended treatment for IC – is difficult to attend due to time limitations and transport difficulties, among other reasons. A group of people with IC worked together with my team, to design the MOSAIC programme – a physiotherapist-led, home-based walking programme that aimed to help people develop the knowledge, motivation and commitment to doing walking exercise at home.
When the Dunhill Medical Trust funded me to lead a randomised clinical trial to see how well this programme works, I knew the best way to design and deliver the trial was in partnership with people with IC.
Patients are crucial members of a research team
Alongside physiotherapists, health psychologists, and vascular surgeons, a key member of the trial team was Mr Graham Fisher, one of our patient advisors.
Working with a panel of people with IC, Graham provided the patient perspective to help ensure our work was grounded in what people with IC want. He was with us through the whole project and trial, from study design, patient recruitment and trial management through to disseminating the results.
Public involvement is absolutely crucial to produce great research and our advisors helped us in really tangible ways. For example, they were core to how we developed the trial’s questionnaires and interviews. Helping us to refine what we asked so it was easy to follow, making sure that we were asking the right questions in the right way. Graham was also part of the team that trained physiotherapists to deliver the MOSAIC programme.
I’m so grateful that Graham and our other advisors were so willing to contribute their time, expertise and experience to help make the project a success.
Patient involvement drives success
Involving members of the public and being patient-led was really important to this research project. Because the patient perspective was embedded in our design, we had very high adherence with 85% of participants attending at least three out of four MOSAIC physiotherapy sessions.
We also had good trial retention rates (participants provided information to us at six months). This can be difficult to achieve in trials like ours that happen over a long period of time and during a global pandemic! However, there’s always room for improvement and we know where to make further tweaks to MOSAIC and how to make the next research study accessible to everyone.
People are at the heart of research
At the end of the trial, we interviewed participants to discover what they thought about the MOSAIC programme. Many who completed the treatment were positive, saying they liked working with a physiotherapist, learned about their condition, and how to fit regular walking exercise into their daily lives.
Not everyone was as happy, though. Some participants wanted to do their exercises with the physiotherapist watching and have more sessions. The team and I will take this on board when we design and deliver larger trials investigating MOSAIC in the future.
We heard lovely stories about how MOSAIC impacted on participants’ lives. One person shared that they were able to walk to their local park in one go rather than having to stop several times, meaning they can now keep up with their grandchildren. Another participant told us they are planning their first holiday in a long time because they aren’t having to worry as much about how far they can walk.
Involving members of the public in research is important to me and it’s great that the DMT aims to fund projects and teams that put people at the heart of their work. I’m so grateful that Graham and our other public advisors were so willing to contribute their time, expertise and experience to help make the project a success, producing findings that matter to people with peripheral arterial disease.
About the author
Lindsay Bearne is a Professor of Physiotherapy and Rehabilitation at St George’s, University of London. Alongside this, she is a Senior Research Fellow in Knowledge Mobilisation at the National Institute for Health and Care Research.