Evidence map›Paper›PMID 40908648›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2025

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, Sean Gill, Madeleine Still, Daisy Trenchard, Debbie Smith, Rebecca Harmston, Jane McDermott, Fiona Pearson

Abstract readScoping Review
PubMed Full text at PMC Publisher
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Eugenie Evelynne JohnsonNIHR Innovation Observatory, Newcastle University, Newcastle upon Tyne, UK.ORCID 0000-0003-3324-7141
Sean GillNIHR Innovation Observatory, Newcastle University, Newcastle upon Tyne, UK.
Madeleine StillNIHR Innovation Observatory, Newcastle University, Newcastle upon Tyne, UK.
Daisy TrenchardNIHR Innovation Observatory, Newcastle University, Newcastle upon Tyne, UK.
Debbie SmithPublic Research Team Member, UK.
Rebecca HarmstonPublic Research Team Member, UK.
Jane McDermottNIHR Innovation Observatory, Newcastle University, Newcastle upon Tyne, UK.ORCID 0000-0001-9039-504X
Fiona PearsonNIHR Innovation Observatory, Newcastle University, Newcastle upon Tyne, UK.

Funding

This study is funded by the National Institute for Health Research (NIHR) [NIHRIO/project reference HSRIC-2016-10009]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
6 · The paper itself

Abstract

introductionThe 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.

objectiveTo identify and explore the scope and key features of frameworks for PPI in health and social care research.

methodsWe 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.

resultsWe 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.

conclusionsFuture 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.

Indexed as

Community ParticipationHealth Services ResearchPatient ParticipationHumansUnited Kingdompatient engagementpatient involvementpublic involvement and engagementscoping review

Identifiers

PMID40908648
PMCPMC12411563

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.