A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities

Abstract

Objective

Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.

Data Sources

Searches were undertaken from 1995 to April 2012 in the electronic databases MEDLINE, EMBASE, PsycINFO, Cochrane library, CINAHL, HMIC and HELMIS. Searches were undertaken for grey literature using the databases InvoNet and NHS Evidence.

Study Selection

Studies were included if they included the impact of PPI on individual service users, researchers or communities under research. Studies were excluded if they were in a foreign language (unless they were deemed critical to the systematic review) or were in children and adolescent services.

Study Appraisal

Data were extracted using a narrative synthesis, and quality was assessed using the Critical Appraisal Skills Programme.

Main Results

Service users reported feeling empowered and valued, gaining confidence and life skills. Researchers developed a greater understanding and insight into their research area, gaining respect and a good rapport with the community. The community involved in research became more aware and knowledgeable about their condition. However, lack of preparation and training led some service users to feel unable to contribute to the research, while other service users and communities reported feeling overburdened with the work involved. Researchers reported difficulties in incorporating PPI in meaningful ways due to lack of money and time.

Conclusion

This is the first international systematic review to focus on the impact of PPI on the people involved in the process. The beneficial and challenging impacts reported highlight the importance of optimising the context and processes of involvement, so creating the potential for PPI to impact positively on the research itself.

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Acknowledgments

The authors would like to say thank you to the advisory board who assisted through the project. They were Philippa Yeeles from the UKCRC, Rosemary Barber from Sheffield University, Mary-Rose Tarpey from INVOLVE, Jacqueline Chandler Oatts from Cochrane Collaboration, UK, and Mark Petticrew from the London School of Hygiene and Tropical Medicine. We would also like to thank the UK CRC for funding this systematic review, Diane Clay, an information specialist with Warwick University Medical School, for her help with the literature searches, and Kate Seers, for supporting the project through the RCN RI at Warwick University.

Author contributions

Jo Brett: primary researcher on the project and first author; involved at all stages of the research. Sophie Staniszewska: principal investigator and fund holder; involved at all stages of the research and second author. Carole Mockford: assisted at all stages of the research, with advice on search terms, selection of papers, and identification of themes for the narrative review; commented on drafts of the paper. Sandra Herron-Marx: assisted in the development of the project, advising throughout the project, and commented on draft papers. John Hughes, Colin Tysall and Rashida Suleman: patient partners who provided advice throughout the project, were critical to the identification and development of themes for the project, and commented on drafts of the paper.

Conflicts of interest

The authors have no conflicts of interest to report (no relationship with entities that have a financial interest in the subject).

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Brett, J., Staniszewska, S., Mockford, C. et al. A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities. Patient 7, 387–395 (2014). https://doi.org/10.1007/s40271-014-0065-0

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Keywords

  • Service User
  • Grey Literature
  • Social Care Service
  • Critical Appraisal Skill Programme
  • Research Excellence Framework