Rheumatic conditions and therapeutics can rapidly evolve and world events, such as the COVID-19 pandemic, can bring unanticipated issues and new research priorities that require appropriate and timely responses that are best facilitated through established frameworks, supported by academic institutional infrastructure.
Here, we detail the experiences and patient and public involvement models of three academic centres in the UK.
The NIHR Leeds Biomedical Research Centre patient and public involvement (PPIE) group was established in 2010 and is supported by a Manager and an Outreach Officer.
The group has over 250 members comprising patients, carers, and members of the public, whose activities are overseen by a Core Group of ten experienced members within an established infrastructure, including meetings every 2 months, task and finish working groups, and membership of the Biomedical Research Centre’s Board, central to research prioritisation, development, conduct, and review across the centre.
A key aim of the group is to support activities involving under-represented groups and to promote greater diversity, underpinned by a strategy that focuses not only on inclusive communication, but also on taking activities away from the hospital and into appropriate community settings. In response to COVID-19, patient and public involvement activities were temporarily moved to a virtual format, resulting in increased engagement as well as the opportunity for members to engage with and contribute to COVID-19 research and vaccine studies.
Sue Watson, co-chair of the Leeds NIHR BRC PPIE said: ‘It was an interesting and rewarding experience to see how other BRC’s are conducting PPI centered activities especially during these difficult times and to share the commitment that exists within the different groups.’
Amy Rebane, Patient and Public Involvement/Engagement Manager added:
‘This was developed in collaboration across the BRCs, Oxford, Imperial and Leeds, and their approaches to PPIE.
The three groups represented different stages in PPIE maturity: Leeds very established, Oxford with a history of PPIE but not in MSK and Imperial which was new.
The aim of the article was to showcase different approaches to PPIE and the importance of PPIE in ensuring both high quality and impactful research.’
Text in this article includes content from The Lancet Rheumatology, Vol. 3, Issue 8, E540-E542, published: August 2021