Review Article
Mapping the impact of patient and public involvement on health and social care research: a systematic review
Jo Brett MSc MA BSc(hons),
Sophie Staniszewska DPhD BSc(hons),
Carole Mockford DPhil MA BSc(hons),
Sandra Herron-Marx PhD BA DPSN RGN,
John Hughes, Colin Tysall,
Rashida Suleman,
Corresponding Author
Jo Brett MSc MA BSc(hons)
Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, UK
Correspondence
Jo Brett MSc, MA, BSc(hons)
Royal College of Nursing Research Institute
School of Health and Social Studies
University of Warwick
Coventry
CV4 7AL
UK
E-mail: [email protected]
Search for more papers by this authorSophie Staniszewska DPhD BSc(hons)
Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, UK
Search for more papers by this authorCarole Mockford DPhil MA BSc(hons)
Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, UK
Search for more papers by this authorSandra Herron-Marx PhD BA DPSN RGN
Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, UK
Search for more papers by this authorColin Tysall
Patient Partners from University/Users Teaching and Research Action Partnership (UNTRAP), University of Warwick, Coventry, UK
Search for more papers by this authorRashida Suleman
Patient Partners from University/Users Teaching and Research Action Partnership (UNTRAP), University of Warwick, Coventry, UK
Search for more papers by this authorJo Brett MSc MA BSc(hons),
Sophie Staniszewska DPhD BSc(hons),
Carole Mockford DPhil MA BSc(hons),
Sandra Herron-Marx PhD BA DPSN RGN,
John Hughes, Colin Tysall,
Rashida Suleman,
Corresponding Author
Jo Brett MSc MA BSc(hons)
Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, UK
Correspondence
Jo Brett MSc, MA, BSc(hons)
Royal College of Nursing Research Institute
School of Health and Social Studies
University of Warwick
Coventry
CV4 7AL
UK
E-mail: [email protected]
Search for more papers by this authorSophie Staniszewska DPhD BSc(hons)
Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, UK
Search for more papers by this authorCarole Mockford DPhil MA BSc(hons)
Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, UK
Search for more papers by this authorSandra Herron-Marx PhD BA DPSN RGN
Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, UK
Search for more papers by this authorColin Tysall
Patient Partners from University/Users Teaching and Research Action Partnership (UNTRAP), University of Warwick, Coventry, UK
Search for more papers by this authorRashida Suleman
Patient Partners from University/Users Teaching and Research Action Partnership (UNTRAP), University of Warwick, Coventry, UK
Search for more papers by this authorAbstract
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.
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