A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities
- 2.4k Downloads
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.
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.
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.
Data were extracted using a narrative synthesis, and quality was assessed using the Critical Appraisal Skills Programme.
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.
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.
KeywordsService User Grey Literature Social Care Service Critical Appraisal Skill Programme Research Excellence Framework
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.
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).
- 1.Department of Health. The Local Government and Public Involvement in Health Act; 2007.Google Scholar
- 2.Coulter A, McGee H. The European patient of the future. Maidenhead: Open University Press; 2003.Google Scholar
- 3.NIHR RDS. http://www.rds-yh.nihr.ac.uk/patient-and-public-involvement. Accessed 2012.
- 5.NETCC. http://www.netscc.ac.uk/getting_involved/. Accessed 2012.
- 6.NIHR. http://www.rds-nw.nihr.ac.uk/public-involvement/. Accessed 2012.
- 7.HTA: http://www.hta.ac.uk/PPIguidance/. Accessed 2012.
- 10.HEFCE. http://www.ref.ac.uk/users/. Accessed 2012.
- 11.Critical Appraisal Skills Programme. http://www.phru.nhs.uk/Pages/CASP.htm. Accessed 1 April 2009.
- 12.Dixon-Woods M, Kirk D, Agarwal S, et al. Vulnerable groups and access to health care. A critical interpretative review. London: National Co-ordinating Centre for NHS Service; 2005.Google Scholar
- 14.Popay J, Roberts H, Sowden A, et al. Guidance on the conduct of narrative synthesis in systematic reviews. ESRC methods Programme; 2006.Google Scholar
- 15.Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H. The PIRICOM Study: a systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. London: UK Clinical Research Collaboration (UKCRC); 2010.Google Scholar
- 17.Nierse C, Schipper K, van Zadelhoff E, van de Griendt J, Abma A. Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expect. 2011. doi: 10.1111/j.1369-7625.2011.00661.x.
- 21.Barnard A, Carter M, Britten N, Purtell R, Wyatt K, Ellis A. The PC11 Report. An evaluation of consumer involvement in the London Primary Care Studies Programme 2005; Peninsula Medical School, Exeter.Google Scholar
- 23.Clark M, Glasby J, Lester H. Cases for change: user involvement in mental health services and research. Res Policy Plan. 2004;22(2):31–8.Google Scholar
- 26.UK CRC. An evaluation of the process and impact of patient and public involvement in the advisory groups of the UK Clinical Research Collaboration; 2009.Google Scholar
- 31.Hassey Dow K, Ferrell BR, Leigh S, Melancon CH. The cancer survivor as co-investigator. The benefits of collaborative research with advocacy groups. Cancer Pract. 1997;5:255–7.Google Scholar
- 37.Bryant L, Beckett J. The practicality and acceptability of an advocacy service in the emergency department for people attending following self-harm. Leeds: Academic Unit of Psychiatry, University of Leeds; 2006.Google Scholar
- 43.Faulkner A. Involving clients in counselling and psychotherapy research. Healthc Counsel Psychother J. 2008;8(3):16–8.Google Scholar
- 45.Beer D, Keeble P, MacInnes D, Rees D, Reid L. Development of a questionnaire to measure service user satisfaction within in-patient forensic services—the Forensic Satisfaction Scale. Liverpool: National Programme on Forensic Mental Health Research and Development (R&D); 2005.Google Scholar
- 57.Sainsbury Centre for Mental Health. A review of service user involvement in prison mental health research; 2008.Google Scholar
- 61.Johns T, Miller P, Kopp K, Carter Z, Cooper G, Johnston J, Nicholas Z, Wright N. Equal lives? Disabled people evaluate and independent living strategy for Essex Social Services. Res Policy Plan. 2004;22(2):51–7.Google Scholar
- 64.Paterson C. Consumer involvement in research into complementary therapies. Bristol: Medical Research Council Health Services Research Collaboration; 2003.Google Scholar
- 67.Ghulam S, Shah S, Robinson I. Benefits of and barriers to involving users in medical device technology development and evaluation. Int J Technol Assess Health Care. 2007;23(1):131–7.Google Scholar
- 82.Carr S. Has service user involvement made a difference to Social Care Services. Social Care Institute for Excellence (SCIE); 2004.Google Scholar
- 84.TwoCan Associates. An evaluation of the process and impact of patient and public involvement in the advisory groups of the UK Clinical Research Collaboration. UK Clinical Research Collaboration; 2009.Google Scholar