It has been shown beyond doubt that involving patients and the public in research provides long term benefits, promoting higher standards of research and improved patient outcomes. Patient participation, and patient engagement are important facets of patient-centred research. Patient involvement (PPI), as defined by INVOLVE, a national advisory group funded by the National Institute for Health Research (NIHR), is 'research being carried out 'with' or 'by' members of the public rather than 'to'.
It's this involvement that has positively influenced the research process; from the initial stages of research with the development of research questions, research design and delivery, data collection and analysis, through to dissemination.
PPI is particularly crucial in rheumatology research, as most rheumatic and musculoskeletal conditions are life-long and life-altering. So how should PPI be undertaken to ensure consistency, quality, and represent patients from a range of demographics to ensure that the research represents the wider community?
In 2020, the Oxford Patient Engagement Network in Arthritis and Musculoskeletal Science (OPEN ARMS) group was launched at NDORMS. Leading the launch, Dr Laura Coates drew on the experience of other established groups in the UK.
NIHR Leeds Biomedical Research Centre
The NIHR Leeds Biomedical Research Centre has over 250 people comprising patients, carers, and members of the public. Alongside bi-monthly meetings, task and finish working groups, the group supports activities to involve under-represented groups and promote diversity within its patient community.
University College London (UCL)
UCL has developed a model of a core patient and public involvement cohort representing various rheumatic conditions who will provide input during virtual meetings, with discussion around research project development and priority setting. Patient-facing literature and other research documentation is written in language that is understandable to the general public.
Oxford Biomedical Research Centre
The Oxford Biomedical Research Centre runs a large and successful advisory group overseeing patient and public involvement across all specialities. OPEN ARMS launched within the musculoskeletal theme aiming to focus on diversity and gain representation from previously harder to reach groups through carefully designed recruitment materials and extensive outreach to different community groups.
The groups faced different challenges through the Covid pandemic. The move to virtual platforms may have had an adverse impact on participation from under-represented groups with lower technology proficiency. For others, online meetings may have appealed to the younger demographics.
The challenge will be to adapt activities to remain inclusive to all patient communities while continuing to apply innovative thinking to develop dynamic, impactful collaborations with patients that also benefit researchers and clinicians.