Mapping the impact of patient and public involvement on health and social care research: a systematic review
Open accessAbstract
Background: There is an increasing international interest in patient and public involvement ( PPI ) in research, yet relatively little robust evidence exists about its impact on health and social care research. Objective: To identify the impact of patient and public involvement on health and social care research. Design: A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS C entre for R eviews and D issemination 2009 and the C ritical A ppraisal S kills P rogramme ( CASP ). Grey literature was assessed using the D ixon‐ W oods et al . (2005) checklist. Inclusion criteria: All study types that reported the impact PPI had on the health and/or social care research study. Main results: A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. Conclusion: This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.
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The original GRIPP checklist's development drew on systematic review evidence, without broader input from the international PPI research community.
“While the original GRIPP checklist represented an important starting point in creating high quality PPI reporting, its development drew on systematic review evidence, without broader input from the international PPI research community [2–4].”
From GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017) · cites this paper as [2]
The quality of reporting of patient and public involvement in research papers is often inconsistent and partial, with little information about context, process, and impact.
“While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why.”
From GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017) · cites this paper as [2]
Inadequate reporting of PPI creates problems for systematic reviews that attempt to synthesise PPI evidence.
“Inadequate reporting can create problems for systematic reviews that attempt to synthesise PPI evidence [2–4].”
From GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017) · cites this paper as [2]
It is not possible to be prescriptive about the exact content of each GRIPP2 item because the current evidence base is not advanced enough.
“While GRIPP2-LF and GRIPP2-SF aim to guide consistent reporting, it is not possible to be prescriptive about the exact content of each item, as the current evidence base is not advanced enough to make this possible [2–4, 21].”
From GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017) · cites this paper as [2]
The relatively small amount of empirical evidence on the impact of PPI in research has been criticised as poorly reported and methodologically weak, often failing to fully explore the contextual factors surrounding PPI as a complex intervention.
“The relatively small amount of empirical evidence on the impact of PPI in research 29 has been criticised as poorly reported 21 and methodologically weak, often failing to fully explore the contextual factors surrounding PPI as a complex intervention.30”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
The PIRICOM review included 90 papers published between 1995 and 2009.
“Ninety papers published between 1995 and 2009 were included.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
Of the 83 papers, 2 were randomised controlled trials (RCTs), 52 qualitative studies, 15 case study methodology, 4 cross-sectional studies and 10 structured reviews.
“Of the 83 papers, 2 were randomised controlled trials (RCTs), 52 qualitative studies, 15 case study methodology, 4 cross-sectional studies and 10 structured reviews.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
They did not find any evidence around systematic measurement of PPI outcomes, and furthermore found a lack of clarity on the differences between PPI impact and outcomes.
“They did not find any evidence around systematic measurement of PPI outcomes, and furthermore found a lack of clarity on the differences between PPI impact and outcomes.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
Providing a more robust evidence base for PPI policy requires moving beyond observational evaluations of PPI.
“Providing a more robust evidence base for PPI policy requires moving beyond observational evaluations of PPI.29,30”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
While there appears to be a reasonably robust level of evidence around the 'architecture of PPI', reporting of outcomes continues to be poor.
“Hence, while there appears to be a reasonably robust level of evidence around the 'architecture of PPI', reporting of outcomes continues to be poor.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
The evidence on PPI impact tends to be descriptive, largely qualitative, often retrospective case studies, with only a few exceptional prospective longitudinal case studies, comparative multiproject evaluations or studies employing quantitative designs.
“What evidence there is tends to be descriptive, largely qualitative, often retrospective case studies, 19,29,106 with only a few exceptional prospective longitudinal case studies, 15 comparative multiproject evaluations 107 or studies employing quantitative designs.108”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
Data were extracted from 83 papers (the remaining seven were not written in a format suitable for data extraction but were deemed sufficiently important to include within the conceptualisation of PPI).
“Data were extracted from 83 papers (the remaining seven were not written in a format suitable for data extraction but were deemed sufficiently important to include within the conceptualisation of PPI).”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
Brett et al. argue that most studies have attempted to conceptualise PPI mainly around context and process and have not sufficiently theoretically grasped the complexities of PPI.
“Brett et al. 29 argue that most studies have attempted to conceptualise PPI mainly around context and process and have not sufficiently theoretically grasped the complexities of PPI.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
As in Staley's review, the papers provided more evidence around the processes of PPI rather than impact and outcomes, and found scant evidence of PPI impact on funding decisions.
“As in Staley's review, 19 the papers provided more evidence around the processes of PPI rather than impact and outcomes, and found scant evidence of PPI impact on funding decisions.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
Drawing on the findings of the PIRICOM study, a validated online survey tool (Bristol Online Surveys) was designed to collect data to assess how PPI is operationalised and its perceived impact on each study.
“Drawing on the findings of the PIRICOM study, 29 a validated online survey tool (Bristol Online Surveys, University of Bristol, Bristol, UK) was designed to collect data to assess how PPI is operationalised and its perceived impact on each study.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
Although the PIRICOM study found little evidence of PPI being theoretically conceptualised, there has been some work to develop a consensus on the principles and indicators of successful PPI, and this was used to underpin the survey design.
“Although the PIRICOM study found little evidence of PPI being theoretically conceptualised, there has been some work to develop a consensus on the principles and indicators of successful PPI, 133 and this was used to underpin the survey design.”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [29]
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The PCORI Engagement Rubric: Promising Practices for Partnering in Research
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- Authors
- Brett, J., Staniszewska, S., Mockford, C., Herron‐Marx, S., Hughes, J., Tysall, C., & Suleman, R.
- Affiliations
- University of Warwick (GB)
- Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick Coventry UK
- United Kingdom Clinical Research Collaboration (GB)
- Corresponding author
- Brett, Jo
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2012-07-19
- Volume
- 17
- Issue
- 5
- Pages
- 637-650
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC5060910
- OpenAlex
- W2049504028
- Cited by
- 1,598
- References
- 71
- Citations by year
- 2026: 140 · 2025: 167 · 2024: 201 · 2023: 171 · 2022: 151 · 2021: 154 · 2020: 158 · 2019: 133 · 2018: 119 · 2017: 78 · 2016: 55 · 2015: 39 · 2014: 15 · 2013: 16
- FWCI
- 3.41
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Health Expectations (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Open Research Online - ORO (The Open University) (submittedVersion)
- Funders
- London School of Hygiene and Tropical Medicine
- United Kingdom Clinical Research Collaboration
- University of Warwick
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
- Keywords
- patient and public involvement, health research, social care research, research quality, research questions, research recruitment, research dissemination, implementation of research findings, research stages
- MeSH terms
- Health Services Research, Humans, Patient Participation, Social Welfare, Community-Based Participatory Research
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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