AB1661-PARE THE JIA VIP RESEARCH PANEL: AN INNOVATIVE AND UNIQUE WAY TO ENGAGE WITH THE JUVENILE IDIOPATHIC ARTHRITIS COMMUNITY
Authors: R. Beesley, R. Beesley
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> 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. Whilst the focus on family involvement in JIA research is welcomed, the increasing number of poor quality surveys with no anticipated research outcomes of benefit to the community have 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 often lacks diversity and equity. <h3>Objectives:</h3> To improve research quality, increase accessibility for researchers to access motivated survey respondents, reduce the burden on participants, and provide a central solution for accessing JIA research participants. <h3>Methods:</h3> Juvenile Arthritis Research is a charity in the UK, with considerable experience of developing research projects [1] and engaging in PPIE activities, and a network of highly-engaged 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 anonymised. 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. <h3>Results:</h3> Within two months of launch, over 150 families have joined the JIA VIP Research Panel, with a representative spread of participants; recruitment is an ongoing and continuous process to ensure those with a new diagnosis of JIA have an opportunity to join. To date, participants have completed several short online surveys, and are actively involved in academic research projects as research participants and PPIE representatives, supporting academics and clinicians across the UK. <h3>Conclusion:</h3> The JIA VIP Research Panel (www.jarproject.org/vip) is an innovative resource enabling fast, flexible, and 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. Members of the Panel have been highly engaged and provided direct input into research projects as PPIE representatives, and are actively involved as research participants. <h3>REFERENCES:</h3> [1] www.jarproject.org/research/publications. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> <b>None declared.</b>