The Patient - Patient-Centered Outcomes Research

, Volume 7, Issue 4, pp 387–395 | Cite as

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

  • Jo BrettEmail author
  • Sophie Staniszewska
  • Carole Mockford
  • Sandra Herron-Marx
  • John Hughes
  • Colin Tysall
  • Rashida Suleman
Systematic Review



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.


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.


Service User Grey Literature Social Care Service Critical Appraisal Skill Programme Research Excellence Framework 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



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).


  1. 1.
    Department of Health. The Local Government and Public Involvement in Health Act; 2007.Google Scholar
  2. 2.
    Coulter A, McGee H. The European patient of the future. Maidenhead: Open University Press; 2003.Google Scholar
  3. 3.
  4. 4.
  5. 5.
  6. 6.
  7. 7.
  8. 8.
    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.PubMedGoogle Scholar
  9. 9.
    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.PubMedCrossRefGoogle Scholar
  10. 10.
    HEFCE. Accessed 2012.
  11. 11.
    Critical Appraisal Skills Programme. Accessed 1 April 2009.
  12. 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
  13. 13.
    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.PubMedCrossRefGoogle Scholar
  14. 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. 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
  16. 16.
    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.CrossRefGoogle Scholar
  17. 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.
  18. 18.
    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.PubMedCrossRefGoogle Scholar
  19. 19.
    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.CrossRefGoogle Scholar
  20. 20.
    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.CrossRefGoogle Scholar
  21. 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
  22. 22.
    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.PubMedCrossRefGoogle Scholar
  23. 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
  24. 24.
    Dickson G, Green KL. Participatory action research: lessons learned with Aboriginal grandmothers. Health Care Women Int. 2001;22(5):471–82.PubMedCrossRefGoogle Scholar
  25. 25.
    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.PubMedCrossRefGoogle Scholar
  26. 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
  27. 27.
    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.CrossRefGoogle Scholar
  28. 28.
    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.PubMedCrossRefGoogle Scholar
  29. 29.
    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.CrossRefGoogle Scholar
  30. 30.
    McLaughlin H. Involving young service users as co-researchers: possibilities, benefits and costs. Br J Soc Work. 2006;36:1395–410.CrossRefGoogle Scholar
  31. 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
  32. 32.
    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.CrossRefGoogle Scholar
  33. 33.
    Davenport-Ennis N, Cover M, Ades TB, Stovall E. An analysis of advocacy: a collaborative essay. Semi Oncol Nurs. 2002;18:290–6.CrossRefGoogle Scholar
  34. 34.
    Gooberman-Hill R, Horwood J, Calnan M. Citizens’ juries in planning research priorities: process, engagement and outcome. Health Expect. 2008;11(3):272–81.PubMedCrossRefGoogle Scholar
  35. 35.
    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.CrossRefGoogle Scholar
  36. 36.
    Newell C, South J. Participating in community research: exploring the experiences of lay researchers in Bradford. Community Work Family. 2009;12(1):75–89.CrossRefGoogle Scholar
  37. 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
  38. 38.
    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.CrossRefGoogle Scholar
  39. 39.
    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.PubMedCrossRefGoogle Scholar
  40. 40.
    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.PubMedCrossRefGoogle Scholar
  41. 41.
    Royle J, Oliver S. Consumer involvement in the health technology assessment program. Int J Technol Assess Health Care. 2004;20(4):493–7.PubMedCrossRefGoogle Scholar
  42. 42.
    Dobbs L, Moore C. Engaging communities in area-based regeneration: the role of participatory evaluation. Policy Stud. 2002;23(3):157–71.CrossRefGoogle Scholar
  43. 43.
    Faulkner A. Involving clients in counselling and psychotherapy research. Healthc Counsel Psychother J. 2008;8(3):16–8.Google Scholar
  44. 44.
    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.CrossRefGoogle Scholar
  45. 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
  46. 46.
    Plumb M, Price W, Kavanaugh-Lynch M. Funding community-based participatory research: Lessons learned. J Interprof Care. 2004;18(4):428–39.PubMedCrossRefGoogle Scholar
  47. 47.
    O’Donnell M, Entwistle V. Consumer involvement in decisions about what health-related research is funded. Health Policy. 2004;70(3):281–90.PubMedCrossRefGoogle Scholar
  48. 48.
    Ross F, Donovan S, Brearley S, et al. Involving older people in research: methodological issues. Health Soc Care Community. 2005;13(3):268–75.PubMedCrossRefGoogle Scholar
  49. 49.
    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.PubMedCrossRefGoogle Scholar
  50. 50.
    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.CrossRefGoogle Scholar
  51. 51.
    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.PubMedCrossRefGoogle Scholar
  52. 52.
    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.PubMedCrossRefGoogle Scholar
  53. 53.
    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.CrossRefGoogle Scholar
  54. 54.
    Stevens T, Wilde D, Hunt J, Ahmedzai SH. Overcoming the challenges to consumer involvement in cancer research. Health Expect. 2003;6(1):81–8.PubMedCrossRefGoogle Scholar
  55. 55.
    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.CrossRefGoogle Scholar
  56. 56.
    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.PubMedCrossRefGoogle Scholar
  57. 57.
    Sainsbury Centre for Mental Health. A review of service user involvement in prison mental health research; 2008.Google Scholar
  58. 58.
    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.CrossRefGoogle Scholar
  59. 59.
    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.CrossRefGoogle Scholar
  60. 60.
    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.PubMedCrossRefGoogle Scholar
  61. 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
  62. 62.
    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.PubMedCrossRefGoogle Scholar
  63. 63.
    Ong BN, Hooper H. Involving users in low back pain research. Health Expect. 2003;6:332–41.PubMedCrossRefGoogle Scholar
  64. 64.
    Paterson C. Consumer involvement in research into complementary therapies. Bristol: Medical Research Council Health Services Research Collaboration; 2003.Google Scholar
  65. 65.
    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.CrossRefGoogle Scholar
  66. 66.
    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.CrossRefGoogle Scholar
  67. 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
  68. 68.
    Truman C, Raine P. Involving users in evaluation: the social relations of user participation in health research. Crit Public Health. 2001;11:215–29.CrossRefGoogle Scholar
  69. 69.
    Abma T. Patient participation in health research: research with and for people with spinal cord injuries. Qual Health Res. 2005;15(10):1310–28.PubMedCrossRefGoogle Scholar
  70. 70.
    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.CrossRefGoogle Scholar
  71. 71.
    Dyer S. Rationalising public participation in the health service: the case of research ethics committees. Health Place. 2004;10:339–48.PubMedCrossRefGoogle Scholar
  72. 72.
    Maslin-Prothero S. Developing user involvement in research. J Clin Nursing. 2003;12(3):412–21.CrossRefGoogle Scholar
  73. 73.
    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.PubMedCrossRefGoogle Scholar
  74. 74.
    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.PubMedCrossRefGoogle Scholar
  75. 75.
    Taylor S. A new approach to empowering older people’s forums: identifying barriers to encourage participation. Practice. 2006;18(2):117–28.CrossRefGoogle Scholar
  76. 76.
    Belam J, Harris G, Kernick D, et al. A qualitative study of migraine involving patient researchers. Br J Gen Pract. 2005;55:87–93.PubMedCentralPubMedGoogle Scholar
  77. 77.
    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.CrossRefGoogle Scholar
  78. 78.
    Trivedi P, Wykes T. From passive subjects to equal partners—qualitative review of user involvement in research. Br J Psychiatry. 2002;181:468–72.PubMedCrossRefGoogle Scholar
  79. 79.
    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.PubMedCrossRefGoogle Scholar
  80. 80.
    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.PubMedCentralPubMedCrossRefGoogle Scholar
  81. 81.
    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.CrossRefGoogle Scholar
  82. 82.
    Carr S. Has service user involvement made a difference to Social Care Services. Social Care Institute for Excellence (SCIE); 2004.Google Scholar
  83. 83.
    Blair T, Minkler M. Participatory action research with older adults: key principles in practice. Gerontologist. 2009;49(5):652–62.CrossRefGoogle Scholar
  84. 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
  85. 85.
    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.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2014

Authors and Affiliations

  • Jo Brett
    • 1
    Email author
  • Sophie Staniszewska
    • 1
  • Carole Mockford
    • 1
  • Sandra Herron-Marx
    • 1
  • John Hughes
    • 2
  • Colin Tysall
    • 3
  • Rashida Suleman
    • 3
  1. 1.Royal College of Nursing Research Institute, Health Sciences, Warwick Medical SchoolUniversity of WarwickCoventryUK
  2. 2.Patient Partner from UKCRCLondonUK
  3. 3.Patient Partners from University/Users Teaching and Research Action Partnership (UNTRAP)University of WarwickCoventryUK

Personalised recommendations