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.
This is a preview of subscription content, log in to check access.
Buy single article
Instant access to the full article PDF.
Price includes VAT for USA
Department of Health. The Local Government and Public Involvement in Health Act; 2007.
Coulter A, McGee H. The European patient of the future. Maidenhead: Open University Press; 2003.
NIHR RDS. http://www.rds-yh.nihr.ac.uk/patient-and-public-involvement. Accessed 2012.
NETCC. http://www.netscc.ac.uk/getting_involved/. Accessed 2012.
NIHR. http://www.rds-nw.nihr.ac.uk/public-involvement/. Accessed 2012.
HTA: http://www.hta.ac.uk/PPIguidance/. Accessed 2012.
Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement in health and social car research: a systematic review. Health Expect. 2012;. doi:10.1111/j.1369-7625.2012.00795.x.
Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care. 2012;24(1):28–38.
HEFCE. http://www.ref.ac.uk/users/. Accessed 2012.
Critical Appraisal Skills Programme. http://www.phru.nhs.uk/Pages/CASP.htm. Accessed 1 April 2009.
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.
Hubbard G, Kidd L, Donaghy E, McDonald C, Kearney N. A review of literature about involving people affected by cancer in research, policy and planning and practice. Patient Educ Couns. 2007;65(1):21–33.
Popay J, Roberts H, Sowden A, et al. Guidance on the conduct of narrative synthesis in systematic reviews. ESRC methods Programme; 2006.
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.
Walmsley J, Mannan H. Parents as co-researchers: a participatory action research initiative involving parents of people with intellectual disabilities in Ireland. Br J Learn Disabil. 2009;37:271–6.
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.
Hewlett S, de Wit M, Richards P, et al. Patients and professionals as research partners: challenges, practicalities and benefits. Arthritis Rheum. 2006;55(4):676–80.
Coupland H, Maher L, Enriquez J, Le K, Pacheco V, Pham A, Carroll C, Cheguelman G, Freeman D, Robinson D, Smith K. Clients or colleagues? Reflections on the process of participatory action research with young injecting drug users. Int J Drug Policy. 2005;16:191–8.
Minogue V, Boness J, Brown A, Girdlestone J. The impact of service user involvement in research. Int J Health Care Qual Assur. 2005;18(2):103–12.
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.
McCormick S, Brody J, Brown P, Polk R. Public involvement in breast cancer research: an analysis and model for future research. Int J Health Serv. 2004;34(4):625–46.
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.
Dickson G, Green KL. Participatory action research: lessons learned with Aboriginal grandmothers. Health Care Women Int. 2001;22(5):471–82.
Burrus BB, Liburd LC, Burroughs A. Maximizing participation by black Americans in population-based diabetes research: the Project DIRECT pilot experience. J Community Health. 1998;23(1):15–27.
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.
Wyatt K, Carter M, Mahtani V, Barnard A, Hawton A, Britten N. The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme. Family Pract. 2008;25(3):154–61.
Cornes M, Peardon J, Manthorpe J. Wise owls and professors: the role of older researchers in the review of the National Service Framework for Older People. Health Expect. 2008;11(4):409–17.
Cotterell P. Exploring the value of service user involvement in data analysis: ‘our interpretation is about what lies below the surface’. Educ Action Res. 2008;16(1):5–17.
McLaughlin H. Involving young service users as co-researchers: possibilities, benefits and costs. Br J Soc Work. 2006;36:1395–410.
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.
Collins K, Stevens T, Ahmedzai SH. Can consumer research panels become an integral part of the cancer research community? Clin Effect Nursing. 2005;9(3–4):112–8.
Davenport-Ennis N, Cover M, Ades TB, Stovall E. An analysis of advocacy: a collaborative essay. Semi Oncol Nurs. 2002;18:290–6.
Gooberman-Hill R, Horwood J, Calnan M. Citizens’ juries in planning research priorities: process, engagement and outcome. Health Expect. 2008;11(3):272–81.
Williamson T, Brogden J, Jones E, Ryan J. Impact of public involvement in research on quality of life and society: a case study of research career trajectories. Int J Consum Stud. 2010;34(5):551–7.
Newell C, South J. Participating in community research: exploring the experiences of lay researchers in Bradford. Community Work Family. 2009;12(1):75–89.
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.
Schneider B, Scissons H, Arney L, Benson G, Derry J, Misurelli N, Nickerson D, Sunderland M. Communication between people with schizophrenia and their medical professionals: a participatory research project. Qual Health Res. 2004;1494:562–77.
Rhodes P, Nocon A, Booth M, Chowdrey MY, Fabian A, Lambert N, Mohammed F, Walgrove T. A service users’ research advisory group from the perspectives of both service users and researchers. Health Soc Care Community. 2002;10(5):402–9.
Shea B, Santesso N, Qualman A, Heiberg T, Leong A, Judd M, Robinson V, Wells G, Tugwell P, Cochrane Musculoskeletal Consumer Group. Consumer-driven health care: building partnerships in research. Health Expect. 2005;8(4):352–9.
Royle J, Oliver S. Consumer involvement in the health technology assessment program. Int J Technol Assess Health Care. 2004;20(4):493–7.
Dobbs L, Moore C. Engaging communities in area-based regeneration: the role of participatory evaluation. Policy Stud. 2002;23(3):157–71.
Faulkner A. Involving clients in counselling and psychotherapy research. Healthc Counsel Psychother J. 2008;8(3):16–8.
Caldon L, Marshall-Cook H, Speed G, Reed M, Collins K. Consumers as researchers—innovative experiences in UK National Health Service Research. Int J Consum Stud. 2010;34(5):547–50.
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.
Plumb M, Price W, Kavanaugh-Lynch M. Funding community-based participatory research: Lessons learned. J Interprof Care. 2004;18(4):428–39.
O’Donnell M, Entwistle V. Consumer involvement in decisions about what health-related research is funded. Health Policy. 2004;70(3):281–90.
Ross F, Donovan S, Brearley S, et al. Involving older people in research: methodological issues. Health Soc Care Community. 2005;13(3):268–75.
Tuffrey-Wijne I, Butler G. Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expect. 2010;13(2):174–84.
Meyer M, Torres S, Cermeno N, MacLean L, Monzon R. Immigrant women implementing participatory research in health promotion. West J Nursing Res. 2003;25(7):815–34.
Oliver S, Milne R, Bradburn J, et al. Involving consumers in a needs-led research programme: a pilot project. Health Expect. 2001;4(1):18.
Langston AL, McCallum M, Campbell MK, Robertson C, Ralston SH. An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial. Clin Trials. 2005;2(1):80–7.
Sutton J, Weiss M. Involving patients as advisers in pharmacy practice research: what are the benefits? Int J Pharm Pract. 2008;16(4):231–8.
Stevens T, Wilde D, Hunt J, Ahmedzai SH. Overcoming the challenges to consumer involvement in cancer research. Health Expect. 2003;6(1):81–8.
Bengtsson-Tops A, Svensson B. Mental health users’ experiences of being interviewed by another user in a research project. A qualitative study. J Mental Health. 2010;19(3):234–42.
Rowe A. The effect of involvement in participatory research on parent researchers in a Sure Start programme. Health Soc Care Community. 2006;14(6):465–73.
Sainsbury Centre for Mental Health. A review of service user involvement in prison mental health research; 2008.
Godfrey M. More than ‘involvement’: how commissioning user interviewers in the research process begins to change the balance of power. Practice. 2004;16(3):223–31.
Reed J, Weiner R, Cook G. Partnership research with older people—moving towards making the rhetoric a reality. J Clin Nursing. 2004;13(3a):3–10.
Minkler M, Fadem P, Perry M, Blum K, Moore L, Rogers J. Ethical dilemmas in participatory action research: a case study from the disability community. Health Educ Behav. 2002;29(1):14–29.
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.
Krieger J, Allen C, Cheadle A, et al. Using community-based participatory research to address social determinants of health: lessons learned from Seattle Partners for Healthy Communities. Health Educ Behav. 2002;29(3):361–82.
Ong BN, Hooper H. Involving users in low back pain research. Health Expect. 2003;6:332–41.
Paterson C. Consumer involvement in research into complementary therapies. Bristol: Medical Research Council Health Services Research Collaboration; 2003.
Andejeski Y, Bisceglio IT, Dickersin K, et al. Quantitative impact of including consumers in the scientific review of breast cancer research proposals. J Women’s Health Gender Based Med. 2002;11(4):379–88.
Howe A, MacDonald H, Barrett B, Little B. Ensuring public and patient participation in research: a case study in infrastructure development in one UK Research and Development consortium. Prim Health Care Res Dev. 2006;7(1):60–7.
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.
Truman C, Raine P. Involving users in evaluation: the social relations of user participation in health research. Crit Public Health. 2001;11:215–29.
Abma T. Patient participation in health research: research with and for people with spinal cord injuries. Qual Health Res. 2005;15(10):1310–28.
Dewar BJ. Beyond tokenistic involvement of older people in research—a framework for future development and understanding. J Clin Nursing. 2005;14(3a):48–53.
Dyer S. Rationalising public participation in the health service: the case of research ethics committees. Health Place. 2004;10:339–48.
Maslin-Prothero S. Developing user involvement in research. J Clin Nursing. 2003;12(3):412–21.
Elliott E, Watson A, Harries U. Harnessing expertise: involving peer interviewers in qualitative research with hard-to-reach populations. Health Expect. 2002;5:172–8.
Morris MC, Nadkarni VM, Ward FR, Nelson RM. Exception from informed consent for pediatric resuscitation research: community consultation for a trial of brain cooling after in-hospital cardiac arrest. Pediatrics. 2004;114(3):776–81.
Taylor S. A new approach to empowering older people’s forums: identifying barriers to encourage participation. Practice. 2006;18(2):117–28.
Belam J, Harris G, Kernick D, et al. A qualitative study of migraine involving patient researchers. Br J Gen Pract. 2005;55:87–93.
Morgan L, Chambers R, Banerji J, Gater J, Jordan J. Consumers leading public consultation: the general public’s knowledge of stroke. Family Pract. 2005;22:8–14.
Trivedi P, Wykes T. From passive subjects to equal partners—qualitative review of user involvement in research. Br J Psychiatry. 2002;181:468–72.
Guarino P, Elbourne D, Carpenter J, Peduzzi P. Consumer involvement in consent document development: a multicenter cluster randomized trial to assess study participants’ understanding. Clin Trials. 2006;3(1):19–30.
Angell K, Kreshka M, McCoy R, Donnelly P, Turner-Cobb J, Graddy K, Kraemer H, Kooperman C. Psycho-social intervention for rural women with breast cancer in isolated rural areas. J Gen Intern Med. 2003;18:499–507.
Hanley B, Truesdale A, King A, Elbourne D, Chalmers I. Involving consumers in designing, conducting and interpreting randomised controlled trials: questionnaire survey. Br Med J. 2001;322:519–23.
Carr S. Has service user involvement made a difference to Social Care Services. Social Care Institute for Excellence (SCIE); 2004.
Blair T, Minkler M. Participatory action research with older adults: key principles in practice. Gerontologist. 2009;49(5):652–62.
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.
Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. Int J Health Technol Assess. 2011;27(4):391–9.
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).
About this article
Cite this article
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
- Service User
- Grey Literature
- Social Care Service
- Critical Appraisal Skill Programme
- Research Excellence Framework