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
Review
. 2014 Oct;17(5):637-50.
doi: 10.1111/j.1369-7625.2012.00795.x. Epub 2012 Jul 19.

Mapping the impact of patient and public involvement on health and social care research: a systematic review

Jo Brett  1 , Sophie Staniszewska, Carole Mockford, Sandra Herron-Marx, John Hughes, Colin Tysall, Rashida Suleman
Affiliations
Review

Mapping the impact of patient and public involvement on health and social care research: a systematic review

Jo Brett et al. Health Expect. 2014 Oct.

Abstract

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 Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods 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.

Keywords: health and social care research; impact on research; patient and public involvement; user involvement.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Search results.
Figure 2
Figure 2
Affects of Context and Process on impact of patient and public involvement in research.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Involve . Colliding Worlds – report of the experiences service user involvement in research, 2004. Available at: www.invo.org.uk, accessed 10 June 2009.
    1. Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: advantages for health research. British Medical Journal, 1998; 316: 463–466. - PMC - PubMed
    1. Chalmers I. What do I want from health research and researchers when I am a patient?. British Medical Journal, 1995; 310: 1315–1318. - PMC - PubMed
    1. Oliver S. How can health service users contribute to the NHS research and development agenda?. British Medical Journal, 1995; 310: 1318–1320. - PMC - PubMed
    1. Goodare H, Smith R. The rights of patients in research. British Medical Journal, 1995; 310: 1277–1278. - PMC - PubMed

MeSH terms