The pandemic, if anything, has heightened public awareness of health and wellbeing and the role that everyone can play in it. Media reporting has made health an everyday discussion in households around the country. A concerted effort to overcome COVID-19 has led many people to take part in clinical trials, but the opportunities for public involvement in medical research are wider and don’t stop at COVID-19.
Patients, carers and people who use health and social care services can contribute to research in multiple ways through Public Patient Involvement (PPI) initiatives across a range of conditions.
The NDORMS (Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences) PPI group is launching this week. Called OPEN ARMS (the Oxford Patient Engagement Network for Arthritis and Musculoskeletal Conditions) it focuses on research in the areas of musculoskeletal science, or put simply, the causes of pain, swelling and problems with bones, muscles and joints and how to treat them.
Jenny Gould, a Stress Management Consultant has joined OPEN ARMS but has already been involved in PPI in Oxford for five years. “Some years ago, I had quite a few orthopaedic operations at the NOC (Nuffield Orthopaedic Centre). Then a few years later one of the orthopaedic surgeons from the musculoskeletal trauma team invited me to join the PPI group. I knew nothing about it, but I've always been interested in the idea of patients like me being at the heart of the decisions that are made in the NHS.”
PPI groups bring members of the public together with clinicians and researchers to help generate more meaningful research. Patients bring an ‘expert’ insight into research projects through their experiences of living with a particular condition or using health services. Their knowledge can help guide research, bringing about improvements in quality of care and treatment.
During her time in a PPI group, Jenny feels she’s really been able to have an influence on decisions around how to treat patients. “There are a few studies that stand out. There’s the WHiTE study a UK wide project involving over 25,000 patients, investigating different ways of treating hip fractures in people over 60 years. The findings of the WHiTE study showed that it was possible to measure the outcome of a hip fracture from a patient perspective. Following this work, the national hip fracture audit was changed to include quality of life as reported by the patients themselves. Another was the James Lind Alliance project, looking at lower limb fragility fractures and ideas for the kind of research needed. It gave us the opportunity as patients and carers working alongside clinicians, to find out the top questions people wanted researching on that subject.”
“The idea is for patients, medics and researchers to get together so that the research done has input from all the different people that would be involved or benefit from said research,” said David Greenall, an engineer and a new OPEN ARMS patient partner. “So as people are looking into new research areas, looking into how to present findings to the public, and how to get feedback, the PPI group is helping to solve and formulate strategies. Having a mix of people from different backgrounds and diverse walks of life provides a different perspective from the medics view and helps ease into new areas that might not have been considered by just going down the traditional route.”
Barbara Burke, whose background is in advertising and psychology, has also joined OPEN ARMS as a patient partner. One of her hopes is to attract a more diverse range of people to join the group. “There is an ethnically diverse population in Oxford, and it has a really young population too who I’d like to see involved as it is very much their future. PPI is for everybody, you don’t need any specialist knowledge, all you need is enthusiasm.”
OPEN ARMS is looking for 7 patient partners to join 7 health researchers in shaping future research. “I think it's really important to have this balance between patient partners and clinicians/researchers so that people are going to have an equal voice,” said Barbara.
Jenny concluded: “I was apprehensive at first about being out of my comfort zone because I knew nothing about research. But we’re creating better dialogue between the clinicians and the patients and working together to find out what research patients really want, what questions they want answered, and what really matters to them. We're doing things that have the opportunity to influence future treatments and care at both the local and national level.