G268 The james lind alliance and cystic fibrosis: a journey towards co-production of research

Cystic Fibrosis (CF) is the commonest life limiting inherited condition in the UK, affecting 3895 children. Children with CF undertake burdensome, time-consuming treatment, much of which is not evidence-based. Questions for clinical research should reflect patient and clinician priorities because both the number of potential participants and funding are limited. Aims We describe our work over a 4 year period to engage the CF community in prioritisation and co-production of clinical research. Methods In 2016–17 we undertook a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to find the top 10 priorities for clinical research in CF. Through a series of surveys and workshops these were agreed in conjunction with the global CF community. In 2018–2019 we undertook further global surveys to explore 4 of the top 10 questions in more depth (treatment burden, gastrointestinal symptoms, adherence and exercise in place of some airway clearance). To avoid cross-infection and increase global reach, we adapted JLA methodology to use video conferencing and social media. Results During the past four years we have gathered opinions from 3729 respondents across six continents. Our youngest respondents were six years old and the median age of respondents with CF (answering directly or by proxy) was 15 years. On completion we disseminated the top 10 questions widely and worked to raise awareness with research funders such as the NIHR. This has resulted in two NIHR themed calls, featuring many of the JLA CF top 10 questions. Conclusions Encouraging patient participation, including children, in all stages of evidence-based medicine is vital to ensure clinical research is of good quality and relevant to patient needs.