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Lookup NU author(s): Eugenie JohnsonORCiD, Sean GillORCiD, Madeleine StillORCiD, Daisy TrenchardORCiD, Professor Jane McDermott, Fiona Pearson
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2025 The Author(s). Health Expectations published by John Wiley & Sons Ltd.Introduction: The United Kingdom National Institute for Health and Care Research (NIHR) allocates funding and provides infrastructure, training and capacity building for research. NIHR expects that patient and public involvement (PPI) is embedded within research it supports. There is a need to understand more about what guidance is offered to researchers across PPI frameworks. This rapid scoping review aimed to identify and clarify PPI frameworks for health and care research. Objective: To identify and explore the scope and key features of frameworks for PPI in health and social care research. Methods: We undertook a rapid scoping review, conducing searches on MEDLINE, CINAHL and PsycInfo for relevant records indexed from 2013 to August 2024. After piloting to refine eligibility and ensure consistent decision-making, a single reviewer screened titles and abstracts and then full-texts, with another checking a proportion for accuracy. A data charting form was piloted. Two reviewers charted all eligible frameworks, and a third checked accuracy. We synthesised data using graphs and tables and provided a narrative of results. Results: We included 53 frameworks from 55 reports. Most suggested they were applicable across types of health or social care research (N = 30), influencing different stages of the research process (N = 39). Most were developed in the UK (N = 28). Most frameworks did not specify how to find patients or members of the public (N = 36), whether PPI should be one-time or continuous (N = 34), or how direct any interaction between patients and the public and researchers should be (N = 33). Eighteen frameworks suggested that patients and the public could have different levels of control over research. Most frameworks (N = 49) suggested ways to meet one or more of the UK Standards for Public Involvement. Few suggested ways in which equity or diversity could be considered in PPI, according to PROGRESS-Plus domains. Conclusions: Future frameworks should provide clear, practical guidance to researchers on how to involve people in different types of health and social care research, including how to approach different groups and consider equity and inclusivity within PPI.
Author(s): Johnson EE, Gill S, Still M, Trenchard D, Smith D, Harmston R, McDermott J, Pearson F
Publication type: Review
Publication status: Published
Journal: Health Expectations
Year: 2025
Volume: 28
Issue: 5
Print publication date: 01/10/2025
Online publication date: 04/09/2025
Acceptance date: 12/08/2025
ISSN (print): 1369-6513
ISSN (electronic): 1369-7625
Publisher: John Wiley and Sons Inc
URL: https://doi.org/10.1111/hex.70425
DOI: 10.1111/hex.70425
Data Access Statement: The data that support the findings of this study are available from the corresponding author upon reasonable request
