Medicine

H. Evans, Olivia C Robinson, L. von Nerée, B. Smith, Rosamund Yu, Ester Bellavia, Jan Speechley, Julia Walsh, S. Stanworth, R. Foy

2026.2.1HEALTH EXPECTATIONS

DOI: 10.1111/hex.70578

tlooto Summary

This work aimed to develop actionable, task‐focused guidance for PPIE in health data research by defining specific tasks to reduce the likelihood of tokenistic involvement in patient and public involvement and engagement.

Abstract

Patient and public involvement and engagement (PPIE) is essential throughout the research cycle, but a one‐size‐fits‐all approach does not suit all study types. Health data research presents several unique challenges, including ensuring data transparency and security. Thus, PPIE guidance should ideally define specific tasks to reduce the likelihood of tokenistic involvement. We therefore aimed to develop actionable, task‐focused guidance for PPIE in health data research.

Citation format

EVANS, H., et al. Defining patient and public involvement and engagement tasks in health data research: A consensus study. HEALTH EXPECTATIONS, 2026, 29(1): e70578.