By Carol Rhodes

The recent drive to include patients in all areas of health and social care has created an increase in patient and public involvement (PPI) jobs across the country. These include a diverse range of roles, paid and voluntary, part-time and full time, spread across charities, health organisations, research networks and universities. Some have been filled by researchers and health service managers, who have a keen interest in PPI, as a percentage of their full time roles. Others have been filled by patients with no research background but lots of patient expertise and a range of other organisational skills. The common theme that links them all is their desire to get the patient voice heard within health and social care services and research, and to develop ways of sharing good practice across the country. In this article I talk about my role in facilitating the Research User Group at the Arthritis Research UK Primary Care Centre, Keele University.

It is now accepted that PPI is an important part of the research process, and evidence of meaningful involvement of patients and the public is required by funders and ethics committees. However, bringing together researchers and the general public requires coordination and a good support system. At the Arthritis Research UK Primary Care Centre there was early recognition of the important role of PPI in research. Funding and an organisational structure for PPI were developed in partnership with the Primary Care Musculoskeletal Consortium Board, and a Research User Group was formed in 2006. We now have a group of 60 members involved in 57 projects.

Initially the Research User Group was involved in research across conditions seen in general practice such as fibromyalgia, shoulder, back and leg pain and osteoarthritis in the hands, hips, knees and feet. Now, as the Arthritis Research UK Primary Care Centre has grown and gained UK Clinical Research Collaboration Clinical Trials Unit (UKCRC CTU) status, it has moved into new areas of research. These include arthritic conditions such as polymyalgia and gout, and other long term conditions treated by general practitioners such as myalgic encephalomyelitis (ME), chronic fatigue syndrome and mental health conditions such as depression and self harm. Our Research User Group has also had to grow to incorporate new members who have the experience of living with these conditions.

While a database of patients could provide the names of PPI members so that requests from researchers could be sent to the right patient, a lot of the success and growth of our group is due to the individualised support they receive. Support is offered by myself and my colleague, Adele Higginbottom, in paid roles, helping with the administration and support of our group. 

Administration forms a large part of the role. Our experience tells us that it’s the simple things that make the most difference to patients: accessible reserved parking; refreshment breaks; rooms pre-booked on the ground floor with access to disabled toilets; lay summaries prepared by researchers and sent out well in advance – these are just some of the basics that patients should be able to expect as standard good practice. Our paid PPI support roles are highly regarded – “the oil that keeps the wheels turning” – supporting lay members alongside the fast-paced, deadline driven world of research.

In addition to administrative tasks, and in order to match the correct patient expertise to a project, you need to know your group. Many members are happy to share what conditions they have, what medication they take, if they are retired or still working (whether paid or voluntary), their hobbies, their family status, or whether they live alone. All of this personal information has to be managed according to good practice guidelines. Our members experience the ups and downs of life just as we all do, including life threatening illnesses, caring for sick grandchildren or elderly parents, and the loss of a user group member. All of these changing circumstances have to be managed with thoughtfulness and kindness. As any PPI facilitator will know, there is a very important emotional-support role to be offered to members and you, yourself sometimes need a listening ear as you support those in your group going through their changing circumstances. 

The role is not without its little challenges. Things do go wrong and mistakes are made but next time the refreshments don’t turn up, or the parking isn’t reserved, or the printer refuses to print your documents, take a breath and just go with it. Because for every meeting like this there will be another where you are completely inspired by the strength of the human spirit. The people who have travelled alone on the bus to attend a meeting in a building they have never been in before, who are willing to tell their story and then listen to the researchers’ ideas for a project, a project they passionately want to be involved in, just because at last someone cares enough to do research into the treatment of this condition that they have struggled with for years – these are the moments to treasure, the moments that make you walk out with your head held high and remember why you love your job!

Contact: Carol Rhodes, PPI Coordinator, Arthritis Research UK Primary Care Centre

Email: c.a.rhodes@keele.ac.uk

Tel: 01782 734834