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Lookup NU author(s): Dr Marie-Louise Zeissler, Sally Collins, Professor Camille CarrollORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
Background: Patient and public involvement and engagement (PPIE) in the design of trials is important, as participant experience critically impacts delivery. The Edmond J Safra Accelerating Clinical Trials in PD (EJS ACT-PD) initiative is a UK consortium designing a platform trial for disease modifying therapies in PD. Objective: The integration of PPIE in all aspects of trial design and its evaluation throughout the project. Methods: PwP and care partners were recruited to a PPIE working group (WG) via UK Parkinson's charities, investigator patient groups and participants of a Delphi study on trial design. They are supported by charity representatives, trial delivery experts, researchers and core project team members. PPIE is fully embedded within the consortium's five other WGs and steering group. The group's terms of reference, processes for effective working and PPIE evaluation were co-developed with PPIE contributors. Results: 11 PwP and 4 care partners have supported the PPIE WG and contributed to the development of processes for effective working. A mixed methods research-in-action study is ongoing to evaluate PPIE within the consortium. This includes the Patient Engagement in Research Scale -a quantitative PPIE quality measure; semi-structured interviews -identifying areas for improvement and overall impressions of involvement; process fidelity- recording adherence; project documentation review - identifying impact of PPIE on project outputs. Conclusions: We provide a practical example of PPIE in complex projects. Evaluating feasibility, experiences and impact of PPIE involvement in EJS ACT-PD will inform similar programs on effective strategies. This will help enable future patient-centered research.
Author(s): Zeissler M-L, Bakshi N, Bartlett M, Batla A, Byrom D, Chapman R, Collins S, Cowd E, Deeson E, Ellis-Doyle R, Forbes J, Gonzalez-Robles C, Jewell A, Lane EL, LaPelle NR, Martin K, Matthews H, Miller L, Mills G, Morgan A, Parry M, Pushparatnam K, Ratcliffe N, Salathiel D, Scurfield P, Siu C, Whipps S, Wonnacott S, Foltynie T, Carroll CB, McFarthing K
Publication type: Article
Publication status: Published
Journal: Journal of Parkinson's Disease
Year: 2024
Volume: 14
Issue: 4
Pages: 809-821
Online publication date: 04/06/2024
Acceptance date: 27/03/2024
Date deposited: 17/06/2024
ISSN (print): 1877-7171
ISSN (electronic): 1877-718X
Publisher: IOS Press
URL: https://doi.org/10.3233/JPD-230444
DOI: 10.3233/JPD-230444
Data Access Statement: Data sharing is not applicable to this article as no datasets were generated or analyzed during this study.
PubMed id: 38701161
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