Background Since 2008, Arthritis Research UK have utilised the valuable experience and perspective of people with arthritis to review and evaluate the research applications we receive, through the USER stakeholder committee. The world of public and patient involvement (PPI) has developed and progressed hugely in that time. So too has Arthritis Research UK, becoming an insight-led charity that can now genuinely say that people with arthritis are at the centre of everything we do, helping those people to be in control, independent and recognised. As such, our approach to PPI must not only meet the new high standards of meaningful PPI set by the research community but also serve to anchor our research activities and the work that we fund in genuine relevance and patient benefit.
Objectives To present our new approach to involving people with arthritis in the decision-making processes of research and the wider charity.
Methods We carried out a UK-wide scoping exercise, consisting of questionnaires and one-to-one interviews, of key stakeholder groups and PPI leaders. This included: our funded researchers and centres of excellence; medical research charities; and people with arthritis including ex- and current USER members. The findings were written up in to a report.
Results The findings of the report highlighted to us that we need to 1) scale up our PPI activities in order to ensure that insight of people with arthritis can be integrated at all stages of the research cycle 2) improve the quality of our PPI ensuring that all the things we do are carried out with clear purpose, that they are meaningful and add mutual value to all involved 3) increase the numbers of people with arthritis in our PPI group to help realise this vision, whilst improving our support, training and guidance processes for those people 4) recognise and support the already excellent PPI activities going on in the musculoskeletal community, and providing resources and training for those also wishing to start or improve PPI activities.
Conclusions After implementing this new approach for over a 18 months, we are now confident that our research activities and the research we fund, have the utmost relevance and potential benefit to people with arthritis.
Disclosure of Interest None declared
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