Objective: To improve patient and public involvement and engagement (PPIE) within EJS ACT-PD by evaluating members’ perceptions of PPIE through a mixed methods research-in-action study.

Background: The Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease (EJS ACT-PD) initiative is a UK-wide consortium with over 90 members designing a platform disease-modification trial for PD. Patient and public involvement and engagement (PPIE) is central to the initiative’s efforts, with PPIE representatives in each of the five working groups delivering different aspects of the project.

Method: All consortium members were invited to complete the Patient Engagement in Research Scale-22 (PEIRS-22) at 12 and 18 months post project launch. Minor adaptations to the scale, allowing its administration to professional members, were made with scale author’s permission. PPIE and professional members of each working group were purposively sampled to include high and low PEIRS-22 scorers in semi-structured interviews. Interviews were conducted after the first survey and thematically analysed to identify overall impressions and areas for improvement. Actionable results were extracted, shared and discussed with the PPIE working group and actions for implementation agreed.

Results:

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. Prioritised emerging themes and implemented actions included: team building (additional in person meetings); feeling valued/enabling contributions (improving proactive PPIE-member involvement in meetings, increasing awareness of their skills); workload management (increased communication and raising capacity awareness); and roles (co-evolving PPIE with project phases). This improved PPIE members’ PEIRS-22 domain scores for contributions, support, feeling valued and benefits. Professional members’ views remained consistent across timepoints.

Conclusion: Evaluation and iteration of PPIE processes within ongoing projects can improve the experience of PPIE contributors. Learnings will help inform future patient-centred research.

Some of this work was also presented at the Annual conference of the Association of British Neurologists 2024.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/interim-results-of-a-mixed-method-research-in-action-study-to-evaluate-and-improve-patient-and-public-involvement-within-the-ejs-act-pd-initiative/