Evaluating patient and public involvement in trial design within EJS ACT-PD: interim findings

<h3>Background</h3> The Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease (EJS ACT- PD) initiative is a UK-wide consortium of &gt;90 members designing a platform disease- modification trial for PD with patient and public involvement and engagement (PPIE) at its heart. <h3>Aim</h3> To improve PPIE within EJS ACT-PD by evaluating members’ perceptions and identify areas for improvement through a mixed methods research-in-action study. <h3>Methods</h3> All consortium members were invited to complete the Patient Engagement in Research Scale-22 (PEIRS-22) at two time-points six months apart; purposively sampled participants were invited to participate in semi-structured interviews conducted after the first survey, which were thematically analysed to identify overall impressions and areas for improvement, and inform action implementation. <h3>Results</h3> 31/72 professional and 10/14 PPIE members completed PEIRS-22 at both time points. Nine PPIE and ten professional consortium members participated in interviews. Actions implemented included: team building (additional in person meetings), improving proactive PPIE-member involvement in meetings, increasing awareness of their skills, improving workload and co-evolving PPIE with project phases. This improved PPIE members’ PEIRS-22 domain scores for contributions, support, feeling valued and benefits. <h3>Conclusions</h3> Ongoing evaluation and iteration of PPIE processes and impact can improve PPIE. Learnings will help inform future patient-centred research.