Incorporation of patient and public involvement in statistical methodology research: summary of workshop proceedings
Author(s)
Type
Journal Article
Abstract
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.
Date Issued
2025-07-01
Date Acceptance
2025-05-29
Citation
Statistics in Medicine, 2025, 44 (15-17)
ISSN
0277-6715
Publisher
Wiley
Journal / Book Title
Statistics in Medicine
Volume
44
Issue
15-17
Copyright Statement
© 2025 The Author(s). Statistics in Medicine published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
License URL
Publication Status
Published
Article Number
e70159
Date Publish Online
2025-07-15