From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement

BMJ Quality and Safety

Volumn 25, Issue 8, 2016, Pages 626-632

  Ocloo, Josephine ^a   Matthews, Rachel ^b  

^a IMPERIAL COLLEGE LONDON   (United Kingdom)

^b Imperial College London ^*  (United Kingdom)

Author keywords

Health policy; Healthcare quality improvement; Patient centred care

Indexed keywords

ADOPTION; ATTENTION; CONSENSUS DEVELOPMENT; DOCTOR PATIENT RELATION; EMPOWERMENT; HEALTH CARE POLICY; HUMAN; MODEL; NARRATIVE; ORGANIZATION; PUBLICATION; SOCIAL CARE; UNCERTAINTY; BEHAVIOR; COMMUNITY PARTICIPATION; HEALTH CARE DELIVERY; NONBIOLOGICAL MODEL; ORGANIZATION AND MANAGEMENT; PATIENT PARTICIPATION; PROCEDURES; STANDARDS; TOTAL QUALITY MANAGEMENT; UNITED KINGDOM;

COMMUNITY PARTICIPATION; DELIVERY OF HEALTH CARE; HUMANS; MODELS, ORGANIZATIONAL; PATIENT PARTICIPATION; POWER (PSYCHOLOGY); QUALITY IMPROVEMENT; UNITED KINGDOM;

EID: 84982965356     PISSN: 20445415     EISSN: None     Source Type: Journal    
DOI: 10.1136/bmjqs-2015-004839     Document Type: Review

References (74)

1. Bristol Royal Infirmary Inquiry. The Report of the Public Inquiry into Children's Heart surgery at the Bristol Royal Infirmary 1984-1995. London: HMSO, 2001
2. Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. London: Stationery Office, 2013
3. Kohn LT, Corrigan JM, DonaldsonMS. To err is human: building a safer health system.Washington: National Academies Press, 1999
4. WHO. World Alliance for Patient Safety forward programme. Geneva: World Health Organization, 2008-2009
5. Walshe K, Shortell SM. When things go wrong: how Health Care Organizations deal with major failures. Health Aff (Millwood) 2004;23:103-11
6. WHO. European regional patients for patient safety workshop report. Geneva: World Health Organization, 2007
7. (APPG) APPG. Patient empowerment: for better quality, more sustainable health services globally. London: House of Commons, 2014
8. Edgman-Levitan S, Brady C, Howitt P. Partnering with patients, families, and communities: a global imperative. Doha: World Innovation Summit for Health (WISH), 2013
9. Church J, Saunders D, Wanke M, et al. Citizen participation in health decision-making: past experience and future prospects. Health Policy 2002;23:12-32
10. Tritter JQ. Revolution or evolution: The challenges of conceptualizing patient and public involvement in a consumerist world. Health Expect 2009;12:275-87
11. Wait S, Nolte E. Public involvement policies in health: exploring their conceptual basis. Health Econ Policy Law 2006;1:149-62
12. Coulter A, Ellins J. Patient focused interventions: a review of the evidence. London: The Health Foundation, 2006
13. Lyons M. Should patients have a role in patient safety? A safety engineering view. QSHC 2007;16:140-2
14. Parsons S, Winterbottom A, Cross P, et al. The quality of patient engagement and involvement in primary care. London: The King's Fund, 2010
15. Healthcare Commission. Listening, learning, working together? London: Healthcare Commission, 2009
16. National Institute for Health Research. Going the Extra Mile: improving the Nation's health and wellbeing through public involvement in research. London: National Institute for Health Research, 2015
17. 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 2014;7:387-95
18. Crawford MJ, Rutter D, Manley C, et al. Systematic review of involving patients in the planning and development of health care. BMJ 2002;325:1263
19. Mockford C, Staniszewska S, Griffiths F, et al. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care 2012;24:28-38
20. Green B, Johnson C, Adams A. Writing narrative literature reviews for peer-reviewed journals: secrets of the trade. J Sports Chiropr Rehabil 2001;15:5-19
21. Vincent CA, Coulter A. Patient safety: what about the patient? Qual Saf Healthc 2002;11:76-80
22. Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect 2012;17:637-50
23. Coulter A, Ellins J. Effectiveness of strategies for informing, educating and involving patients. BMJ 2007;335:24-7
24. Irvine D. The Doctors' Tale. London: Routledge, 2004
25. Davies HTO, Shields AV. Public trust and accountability for clinical performance: lessons from The National press reportage of the Bristol Hearing. J Eval Clin Pract 1999;5:335-42
26. Staniszewska S, Adebajo A, Barber R, et al. Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact. Int J Consum Stud 2011;35:628-32
27. Beresford P. Beyond the usual suspects. London: Shaping Our Lives, 2013
28. Trivedi P. Black service 'user involvement'-rhetoric or reality. In: Fernando S, Keating F, eds. Mental Health in a Multi-Ethnic Society. 2nd edn. London: Routledge, 2009:136-46
29. Martin GP. Representativeness, legitimacy and power in public involvement in health-service management. Soc Sci Med 2008;67:1757-65
30. Gibson A, Britten N, Lynch J. Theoretical directions for an emancipatory concept of patient and public involvement. Health (London) 2012;16:531-47
31. Faulkner A, Yiannoullou S, Kalathil J, et al. Involvement for Influence. 4PI National Involvement Standards. London: National survivor User Network (NSUN), 2015
32. INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh: Hampshire INVOLVE, 2012
33. Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood) 2013;32:223-31
34. Arnstein SR. A ladder of citizen participation. J Am Plann Assoc 1969;35:216-24
35. Ocloo JE. Harmed patients gaining voice: challenging dominant perspectives in the construction of medical harm and patient safety reforms. Soc Sci Med 2010;71:510-16
36. Ocloo JE, Fulop NJ. Developing a critical approach to patient and public involvement in patient safety in the NHS: learning lessons from other parts of the public sector? Health Expect 2012;15:424-32
37. Royal College of General Practitioners. Health Literacy. London: Royal College of General Practitioners, 2014
38. National Voices. Supporting shared decison-making. Secondary Supporting shared decison-making 11th September 2015. http://www.nationalvoices.org.uk/evidence
39. Andersson E, Tritter J, Wilson R. Healthy Democracy: the future of involvement in health and social care. London: Involve and NHS National Centre for Involvement, 2012
40. Coulter A. Engaging patients in healthcare. Maidenhead: Open University Press, 2011
41. Barnes M, Cotterell P. Critical perspectives on user involvement. Bristol: The Policy Press, 2012
42. Brown P, Zavestoski S. Social movements in health: an introduction. Sociol Health Illn 2004;26:679-94
43. Freidson E. Professional dominance: the social structure of medical care. Chicago: Aldine Publishing Company, 1970
44. Oakley A. 'Wisewoman and medicine man: changes in the management of childbirth. In: Mitchell J, Oakley A, eds. The rights and wrongs of woman. Harmondsworth: Penguin, 1976:17-58
45. Rogers A, Pilgrim D. Pulling down churches: accounting for the British mental health users' movement. Sociol Health Illn 1991;13:129-48
46. Charles C, Gafni A, Whelan T. Decision-making in the physician patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med 1999;49:651-61
47. Rutter D, Manley C, Weaver T, et al. Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London. Soc Sci Med 2004;58:1973-84
48. Acheson D. Independent Inquiry into inequalities in health report. London: The Stationery Office, 1998
49. Townsend P, Davidson N, Whitehead M. Inequalities in health: the black report and the health divide. London: Penguin, 1988
50. Illich I. Medical Nemesis. Lancet 1974;1:918-21
51. Schon D. The reflective practitioner. London: Temple Smith, 1983
52. Donaldson L. The challenge of quality and patient safety. J R Soc Med 2008;101:338-41
53. Stuart O. User participation in health care services. London: Race Equality Foundation, 2008:1-7
54. Boote J, Wong R, Booth A. 'Talking the talk or walking the walk?' A bibliometric review of the literature on public involvement in health research published between 1995 and 2009. Health Expect 2012;18:44-57
55. Fernando S. Multicultural mental health services: projects for minority ethnic communities in England. Transcult Psychiatry 2005;42:420-36
56. Bécares L. Which ethnic groups have the poorest health? Ethnic health inequalities 1991 to 2011. Manchester: University of Manchester, Joseph Rowntree Foundation, 2013
57. Szczepura A. Access to health care for ethnic minority populations. Postgrad Med J 2005;81:141-7
58. White S. What does good care look like for a deafblind person?. London: Sense, 2014
59. Mencap. Death by indifference. London: Mencap, 2007
60. Beresford P, Branfield F. Building solidarity, ensuring diversity: lessons from service users' and disabled people's movement. In: Barnes M, Cottererell P, eds. Critical perspectives on user involvement. Bristol: The Policy Press, 2012:33-45
61. Peat M, Entwistle V, Hall J, et al. Scoping review and approach to appraisal of interventions intended to involve patients in patient safety. J Health Serv Res Policy 2010;15 (Suppl 1):17-25
62. Greenhalgh T, Humphrey C, Woodard F. User involvement in health care. Oxford: Wiley-Blackwell, 2011
63. Tritter JQ, McCallum A. The snakes and ladders of user involvement: moving beyond Arnstein. Health Policy 2006;76:156-68
64. The Health Foundation. Leading the way to shared decison making. London: The Health Foundation, 2012
65. Coulter A, Collins A. Making shared decision-making a reality. No decision about me, without me. London: The King's Fund, 2011
66. McLean A. Empowerment and the psychiatric consumer/ ex-patient movement in the United States: contradictions, crisis and change. Soc Sci Med 1995;40:1053-71
67. Boyle D, Slay J, Stephens L. Public services inside Out. Putting co-production into practice. London: NESTA, 2010
68. Batalden M, Batalden P, Margolis P, et al. Coproduction of healthcare service. BMJ Qual Saf 2016;25:501-17
69. Slay J, Robinson B. In this together; Building knowledge about co-production. London: New Economics Foundation, 2011
70. Alakeson V, Bunnin A, Miller C. Coproduction of health and wellbeing outcomes: the new paradigm for effective health and social care. London: OPM, 2013
71. Mulley A, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients' preferences matter. BMJ 2012;345:e6572
72. Social Care Institute for Excellence (SCIE). Co-production: an emerging evidence base for adult social care transformation. London: SCIE, 2009
73. Herrin J, Harris KG, Kenward K, et al. Patient and family engagement: a survey of US hospital practices. BMJ Qual Saf 2016;25:182-9
74. Health Foundation. Evaluation: what to consider. London: Health Foundation, 2015