Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Oct;28(5):e70425.
doi: 10.1111/hex.70425.

Understanding the Scope, Intent and Extent of Published Conceptual Frameworks of Frameworks for Patient and Public Involvement in Health and Social Care Research: A Rapid Scoping Review

Eugenie Evelynne Johnson  1   2 , Sean Gill  1   2 , Madeleine Still  1   2 , Daisy Trenchard  1   2 , Debbie Smith  3 , Rebecca Harmston  3 , Jane McDermott  1 , Fiona Pearson  1   2
Affiliations

Understanding the Scope, Intent and Extent of Published Conceptual Frameworks of Frameworks for Patient and Public Involvement in Health and Social Care Research: A Rapid Scoping Review

Eugenie Evelynne Johnson et al. Health Expect. 2025 Oct.

Abstract

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.

Keywords: patient engagement; patient involvement; public involvement and engagement; scoping review.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflicts of interest.

Figures

Figure 1
Figure 1
PRISMA flow diagram.
Figure 2
Figure 2
UK Standards for public involvement reported by identified frameworks.
Figure 3
Figure 3
Frequency of integration of PROGRESS‐Plus characteristics in included frameworks.
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. National Institute for Health and Care Research . Briefing Notes for Researchers—Public Involvement in NHS, Health and Social Care Research, 2021, updated 5 July 2021, https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-i....
    1. Agyei‐Manu E., Atkins N., Lee B., et al., “The Benefits, Challenges, and Best Practice for Patient and Public Involvement in Evidence Synthesis: A Systematic Review and Thematic Synthesis,” Health Expectations 26, no. 4 (2023): 1436–1452. - PMC - PubMed
    1. Greenhalgh T., Hinton L., Finlay T., et al., “Frameworks for Supporting Patient and Public Involvement in Research: Systematic Review and Co‐Design Pilot,” Health Expectations 22, no. 4 (2019): 785–801. - PMC - PubMed
    1. Boylan A.‐M., Locock L., Thomson R., and Staniszewska S., “‘About Sixty Per Cent I Want to Do It’: Health Researchers' Attitudes to, and Experiences of, Patient and Public Involvement (Ppi)—A Qualitative Interview Study,” Health Expectations: An International Journal of Public Participation in Health Care and Health Policy 22, no. 4 (2019): 721–730. - PMC - PubMed
    1. Abell L., Maher F., Begum S., et al., “Incorporation of Patient and Public Involvement in Statistical Methodology Research: A Survey Assessing Current Practices and Attitudes of Researchers,” Research Involvement and Engagement 9, no. 100 (2023): 100. - PMC - PubMed

Publication types

MeSH terms

LinkOut - more resources