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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2025 The Author(s). Statistics in Medicine published by John Wiley & Sons Ltd.Patient and Public Involvement (PPI) is well-established in applied health research but remains under utilised in statistical methodology research due to perceived irrelevance and communication challenges. This paper summarises a one-day workshop held in February 2024 in Leicester, organised by the University of Leicester and the NIHR Statistics Group, aimed at addressing barriers to meaningful PPI in statistical methodology. The workshop brought together statisticians and experienced public contributors to discuss strategies, share case studies, and offer practical guidance on conducting effective PPI. Key barriers identified included: (1) uncertainty about the relevance of PPI in methodology-focused research; (2) public contributors' anxiety over mathematical complexity; and (3) mismatched expectations due to different backgrounds in applied versus methodological research. Case studies showcased how PPI led to improved model structures, identification of data issues, and enhanced study materials. The importance of communication was a recurrent theme, with recommendations including use of plain English, regular updates, and visual storytelling tools. Feedback from attendees indicated increased confidence and motivation to engage in PPI. Public contributors emphasised the need for respectful, non-patronising interactions and flexible roles within projects. Recommendations include managing expectations, enhancing accessibility, co-developing materials, and fostering diversity among contributors. This paper highlights the need for tailored strategies to integrate PPI into statistical methodology, including the development of resources (e.g., glossaries, animations) and further case study collection. Future work will focus on expanding these resources, addressing challenges of equity and inclusion, and supporting PPI in complex methodological areas like simulation and model development.
Author(s): Smith A, Worboys H, Begum S, Bennett D, Broomfield J, Cro S, Evans-Hill L, Greenwood J, Henley A, Mancini M, Royle K-L, Saul H, Sergeant J, Stewart D, Tyrer F, Wason J, Yau C, Gray LJ
Publication type: Note
Publication status: Published
Journal: Statistics in Medicine
Year: 2025
Volume: 44
Issue: 15-17
Print publication date: 01/07/2025
Online publication date: 15/07/2025
Acceptance date: 29/05/2025
ISSN (print): 0277-6715
ISSN (electronic): 1097-0258
Publisher: John Wiley and Sons Ltd
URL: https://doi.org/10.1002/sim.70159
DOI: 10.1002/sim.70159
Data Access Statement: Data sharing not applicable to this article as no datasets were generated or analysed during the current study.
