University of Leicester
Browse

Incorporation of patient and public involvement in statistical methodology research: Summary of workshop proceedings

Download (245.12 kB)
Version 2 2025-07-30, 10:53
Version 1 2025-06-30, 10:41
journal contribution
posted on 2025-07-30, 10:53 authored by Aiden SmithAiden Smith, Hannah WorboysHannah Worboys, Samina Begum, Derrick Bennett, Jonathan BroomfieldJonathan Broomfield, Suzie Cro, Laura Evans-Hill, Justin Greenwood, Ania Henley, Mary Mancini, Kara-Louise Royle, Helen Saul, Jamie SergeantJamie Sergeant, Derek Stewart, Freya TyrerFreya Tyrer, James Robert Wason, Christopher Yau, Laura GrayLaura Gray
<p dir="ltr">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.</p><p><br></p>

Funding

NIHR Leicester Biomedical Research Centre

National Institute for Health Research

Find out more...

NIHR Applied Research Collaboration East Midlands. Grant Number: NIHR22824

National Institute for Health and Care Research

History

Author affiliation

College of Life Sciences Population Health Sciences

Version

  • VoR (Version of Record)

Published in

Statistics in Medicine

Volume

44

Issue

15-17

Pagination

e70159

Publisher

Wiley

issn

0277-6715

eissn

1097-0258

Copyright date

2025

Available date

2025-07-30

Language

en

Deposited by

Professor Laura Gray

Deposit date

2025-06-04

Data Access Statement

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.

Usage metrics

    University of Leicester Publications

    Licence

    Exports

    RefWorks
    BibTeX
    Ref. manager
    Endnote
    DataCite
    NLM
    DC