P097 Launching the Juvenile Idiopathic Arthritis VIP Research Panel - an innovative and unique way to engage with the Juvenile Idiopathic Arthritis community

Abstract

Abstract Background/Aims The volume of survey-based research targeting families affected by Juvenile Idiopathic Arthritis (JIA) has been increasing, leading to respondent fatigue, reduced response rates, repetitive data collection, and consequential reduced robustness of data. In addition, poor quality surveys with no anticipated research outcomes of benefit to the community have further added to the burden on families. There is also increased interest in recruiting patient representatives to help shape and steer research through appropriate Patient and Public Engagement and Involvement (PPIE), but without a robust structure in place the numbers of families involved has been small and their representativeness questioned. This project improves research quality, accessibility for researchers to access motivated survey respondents, reduces the burden on participants, and provides a central solution for accessing JIA research participants. Methods Juvenile Arthritis Research is a charity in the UK, with considerable experience of developing research projects and engaging in PPIE activities, and a highly-engaged network of families affected by JIA. The charity launched the JIA VIP Research Panel in September 2023, inviting members of their network to join. Participants give fully informed consent upon sign-up, and provide demographic details. These are held securely and anonymously. New research, developed in-house or with academic, clinical or industry partners, is shared with the JIA VIP Research Panel. Participants are invited to complete surveys, knowing they have been quality assured and verified, and without the need to re-submit the same demographic data repeatedly over time. The Panel is also available for PPIE activities, with researchers able to access members of the Panel based on diagnosis, demographic or other criteria. Results Within 3 days of launch, over 100 families joined the JIA VIP Research Panel, with a representative spread of participants; recruitment is an ongoing and continuous process. Conclusion The JIA VIP Research Panel (www.jarproject.org/vip) is an innovative resource enabling faster, more flexible, and more efficient access to families with JIA in the UK both for survey-based research and involvement in PPIE. The Panel has begun to improve the quality of research, building upon previous success and continuing to develop high levels of engagement with participants. Disclosure R.P. Beesley: None. R.M. Beesley: None.