What can you do in your practice to engage and empower patients and families

Internet Citation: Guide to Patient and Family Engagement in Hospital Quality and Safety. Content last reviewed February 2017. Agency for Healthcare Research and Quality, Rockville, MD.
https://www.ahrq.gov/patient-safety/patients-families/engagingfamilies/index.html

1. Darzi A. High quality care for all: our journey so far. London: Department of Health; 2008.

   Google Scholar 

2. Ontario Health Quality Council. QMonitor: 2009 report on Ontari’s health system. Toronto: Government of Ontario; 2009.

3. Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy of Sciences; 2001.

   Google Scholar 

4. Bradshaw PL. Service user involvement in the NHS in England: genuine user participation or a dogma-driven folly? J Nurs Manag. 2008;16(6):673–81.

   Article  PubMed  Google Scholar 

5. Say RE, Thomson R. The importance of patient preferences in treatment decisions—challenges for doctors. BMJ. 2003;327(7414):542–5.

   Article  PubMed  PubMed Central  Google Scholar 

6. Coulter A. What do patients and the public want from primary care? BMJ. 2005;331(7526):1199–201.

   Article  PubMed  PubMed Central  Google Scholar 

7. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ. 2007;335(7609):24–7.

   Article  PubMed  PubMed Central  Google Scholar 

8. Bate P, Robert G. Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care. 2006;15(5):307–10.

   Article  PubMed  PubMed Central  Google Scholar 

9. Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, et al. Systematic review of involving patients in the planning and development of health care. BMJ. 2002;325(7375):1263.

   Article  PubMed  PubMed Central  Google Scholar 

10. Johnson B, Abraham M, Conway J, Simmons L, Edgman-Levitan S, Sodomka P, et al. Partnering with patients and families to design a patient- and family-centered health care system. Bethesda: Institute of Family-Centered Care; 2008.

    Google Scholar 

11. Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. 2013;32(2):223–31.

    Article  Google Scholar 

12. Boivin A, Lehoux P, Lacombe R, Burgers J, Grol R. Involving patients in setting priorities for healthcare improvement: a cluster randomized trial. Implement Sci. 2014;9:24.

    Article  PubMed  PubMed Central  Google Scholar 

13. Parand A, Dopson S, Renz A, Vincent C. The role of hospital managers in quality and patient safety: a systematic review. BMJ Open. 2014;4(9):e005055.

    Article  PubMed  PubMed Central  Google Scholar 

14. Pomey MP, Flora L, Karazivan P, Dumez V, Lebel P, Vanier MC, et al. The Montreal model: the challenges of a partnership relationship between patients and healthcare professionals. Sante Publique. 2015;27(1 Suppl):S41–50.

    Article  PubMed  Google Scholar 

15. Nelson EC, Batalden PB. Patient-based quality measurement systems. Qual Manag Health Care. 1993;2(1):18–30.

    Article  PubMed  CAS  Google Scholar 

16. Nelson EC, Wasson JH. Using patient based information to rapidly redesign care. Healthc Forum J. 1994;37(4):25–9.

17. DLB S. Engaging patients as vigilant partners in aafety a systematic review. Med Care Res Rev. 2010;67(2):119–48.

    Article  Google Scholar 

18. Uding N, Kieckhefer G, Trams C. Parent and community participation in program design. Clin Nurs Res. 2009;18(1):68–79.

    Article  PubMed  Google Scholar 

19. Vincent CA, Coulter A. Patient safety: what about the patient? Qual Saf Health Care. 2002;11(1):76–80.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

20. Cornwell J. Exploring how to improve patients’ experience in hospital at both national and local levels. Nurs Times. 2009;105:26.

    Google Scholar 

21. Coulter A, Elwyn G. What do patients want from high-quality general practice and how do we involve them in improvement? Br J Gen Pract. 2002;52:22–5.

    Google Scholar 

22. Hibbard JH. Engaging health care consumers to improve the quality of care. Med Care. 2003;41(1):61–70.

    Google Scholar 

23. Conway J, Johnson B, Edgman-Levitan S, Schlucter J. Partnering with patients and families to design a patient and family centred health care system: a roadmap for the future—a work in progress. Bethesda: Institute for Family Centered Care; 2006.

    Google Scholar 

24. Pomey M-P, Pierre M, Veronique G. La participation des usagers à la gestion de la qualité des CSSS : un mirage ou une réalité ? La revue de l’innovation : La Revue de l’innovation dans le secteur. Publica. 2009;14(2):1–23.

25. Goodrich J, Cornwell J. Seeing the person in the patient: the point of care review paper. The King’s Fund: London; 2008.

    Google Scholar 

26. Elwyn G, Buetow S, Hibbard J, Wensing M. Measuring quality through performance. Respecting the subjective: quality measurement from the patient’s perspective. BMJ. 2007;335(7628):1021–2.

    Article  PubMed  PubMed Central  Google Scholar 

27. Simpson EL, House AO. Involving users in the delivery and evaluation of mental health services: systematic review. BMJ. 2002;325(7375):1265.

    Article  PubMed  PubMed Central  Google Scholar 

28. Favod J. Taking back control... giving patients information about their drug regimes improves compliance. Nurs Times. 1993;89:68–70.

    Google Scholar 

29. Sheppard M. Client satisfaction, extended intervention and interpersonal skills in community mental health. J Adv Nurs. 1993;18(2):246–59.

    Article  PubMed  CAS  Google Scholar 

30. Beech P, Norman IJ. Patients’ perceptions of the quality of psychiatric nursing care: findings from a small-scale descriptive study. J Clin Nurs. 1995;4(2):117–23.

    Article  PubMed  CAS  Google Scholar 

31. Connor H. Collaboration or chaos: a consumer perspective. Aust N Z J Ment Health Nurs. 1999;8(3):79–85.

    Article  PubMed  CAS  Google Scholar 

32. Arnstein SR. A ladder of citizen participation. J Am Plan Assoc. 1969;35(4):216–24.

    Google Scholar 

33. Berwick DM. What patient centered care should mean: confessions of an extremist. Health Aff. 2009;28(4):555–65.

    Article  Google Scholar 

34. Kastner M, Tricco AC, Soobiah C, Lillie E, Perrier L, Horsley T, et al. What is the most appropriate knowledge synthesis method to conduct a review? Protocol for a scoping review. BMC Med Res Methodol. 2012;12:114.

    Article  PubMed  PubMed Central  Google Scholar 

35. Pare G, Trudel MC, Jaana M, Kitsiou S. Synthesizing information systems knowledge: a typology of literature reviews. Inf Manage. 2015;52(2):183–99.

    Article  Google Scholar 

36. Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. J Clin Epidemiol. 2009;62(10):1006–12.

    Article  PubMed  Google Scholar 

37. Lavis J, Davies H, Oxman A, Denis JL, Golden-Biddle K, Ferlie E. Towards systematic reviews that inform health care management and policy-making. J Health Serv Res Policy. 2005;10(Suppl 1):35–48.

    Article  PubMed  Google Scholar 

38. Hawker S, Payne S, Kerr C, Hardey M, Powell J. Appraising the evidence: reviewing disparate data systematically. Qual Health Res. 2002;12(9):1284–99.

    Article  PubMed  Google Scholar 

39. Iedema R, Merrick E, Piper D, Britton K, Gray J, Verma R, Manning N. Codesigning as a discursive practice in emergency health services: the architecture of deliberation. J Appl Behav Sci. 2010;46(1):73–91.

    Article  Google Scholar 

40. Barnes M, Wistow G. Achieving a strategy for user involvement in community care. Health Social Care. 1994;2:347–56.

    Article  Google Scholar 

41. Coad J, Flay J, Aspinall M, Bilverstone B, Coxhead E, Hones B. Evaluating the impact of involving young people in developing children’s services in an acute hospital trust. J Clin Nurs. 2008;17(23):3115–22.

    Article  PubMed  Google Scholar 

42. Frazier SL, Addul-Adil J, Atikins MS, Gathright T, Jackson M. Can’t have one without the other: mental health providers and community parents reducing barriers to services for families in urban poverty. J Community Psychol. 2007;35(4):435–46.

    Article  Google Scholar 

43. Lofters A, Virani T, Grewal G, Lobb R. Using knowledge exchange to build and sustain community support to reduce cancer screening inequities. Prog Community Health Partnersh. 2015;9(3):379–87.

    Article  PubMed  Google Scholar 

44. Murphy L, Wells JS, Lachman P, Bergin MA. Quality improvement initiative in community mental health in the Republic of Ireland. Health Sci J. 2015;9(13):1–11.

    Google Scholar 

45. Macdonell K, Christie K, Robson K, Pytlik K, Lee SK, O'Brien K. Implementing family-integrated care in the NICU: engaging veteran parents in program design and delivery. Adv Neonatal Care. 2013;13(4):262–9. quiz 70-1

    Article  PubMed  Google Scholar 

46. Weinstein J. Involving mental health service users in quality assurance. Health Expect. 2006;9(2):98–109.

    Article  PubMed  PubMed Central  Google Scholar 

47. Todd S, Felce D, Beyer S, Shearn J, Perry J, Kilsby M. Strategic planning and progress under the All Wales Strategy: reflecting the perceptions of stakeholders. J Intellect Disabil Res. 2000;44(Pt 1):31–44.

    Article  PubMed  Google Scholar 

48. Elwell R. Developing a nurse-led integrated ‘red legs’ service. Br J Community Nurs. 2014;19(1):12. 4-9

    Article  PubMed  Google Scholar 

49. Tooke J. Involving people with dementia in the work of an organisation: service user review panels. Qual Ageing Older Adults. 2013;14(1):56–65.

    Article  Google Scholar 

50. Berg RC, Gamst A, Said M, Aas KB, Songe SH, Fangen K, et al. True user involvement by people living with HIV is possible: description of a user-driven HIV clinic in Norway. J Assoc Nurses AIDS Care. 2015;26(6):732–42.

    Article  PubMed  Google Scholar 

51. Carlson A, Rosenqvist U. Locally developed plans for quality diabetes care: worker and consumer participation in the public healthcare system. Health Educ Res. 1990;5(1):41–52.

    Article  Google Scholar 

52. Hopkins C, Niemiec S. The development of an evaluation questionnaire for the Newcastle Crisis Assessment and Home Treatment Service: finding a way to include the voices of service users. J Psychiatr Ment Health Nurs. 2006;13(1):40–7.

    Article  PubMed  CAS  Google Scholar 

53. Tollyfield R. Facilitating an accelerated experience-based co-design project. Br J Nurs. 2014;23(3):136–41.

    Article  PubMed  Google Scholar 

54. Xie A, Carayon P, Cartmill R, Li Y, Cox ED, Plotkin JA, et al. Multi-stakeholder collaboration in the redesign of family-centered rounds process. Appl Ergon. 2015;46 Pt A:115–23.

    Article  PubMed  Google Scholar 

55. Swarbrick MP, Brice GH Jr. Sharing the message of hope, wellness, and recovery with consumers psychiatric hospitals. Am J Psychiatr Rehabil. 2006;9:101–9.

    Article  Google Scholar 

56. Owens C, Farrand P, Darvill R, Emmens T, Hewis E, Aitken P. Involving service users in intervention design: a participatory approach to developing a text-messaging intervention to reduce repetition of self-harm. Health Expect. 2011;14(3):285–95.

    Article  PubMed  Google Scholar 

57. Factor SH, Galea S, de Duenas Geli LG, Saynisch M, Blumenthal S, Canales E, et al. Development of a “survival” guide for substance users in Harlem, New York City. Health Educ Behav. 2002;29(3):312–25.

    Article  PubMed  Google Scholar 

58. Ferreira-Pinto JB, Ramos R. HIV/AIDS prevention among female sexual partners of injection drug users in Ciudad Juarez, Mexico. AIDS Care. 1995;7(4):477–88.

    Article  PubMed  CAS  Google Scholar 

59. Pilgrim D, Waldron L. User involvement in mental health service development: how far can it go? J Ment Health. 1998;7(1):95–104.

    Article  Google Scholar 

60. Gibson F, Aslett H, Levitt G, Richardson A. Follow up after childhood cancer: a typology of young people’s health care need. Clin Eff Nurs. 2005;9:133–46.

    Article  Google Scholar 

61. Wistow G, Barnes M. User involvement in community care: origins, purposes and application. Public Adm. 1993;71:279–99.

    Article  Google Scholar 

62. Jones SP, Auton MF, Burton CR, Watkins CL. Engaging service users in the development of stroke services: an action research study. J Clin Nurs. 2008;17(10):1270–9.

    Article  PubMed  Google Scholar 

63. Lord J, Ochocka J, Czarny W, MacIlivery H. Analysis of change within a mental health organization: a participatory process. Psychiatr Rehabil J. 1994;21(4):327–39.

64. Brooks F. “When I was on the ward”: the contribution of patient narratives to public involvement in health care decision-making. Neurol Rehabil. 2008;14(1):24–30.

    Google Scholar 

65. Acri M, Olin SS, Burton G, Herman RJ, Hoagwood KE. Innovations in the identification and referral of mothers at risk for depression: development of a peer-to-peer model. J Child Fam Stud. 2014;23(5):837–43.

    Article  PubMed  Google Scholar 

66. van Staa A, Jedeloo S, Latour JM, Trappenburg MJ. Exciting but exhausting: experiences with participatory research with chronically ill adolescents. Health Expect. 2010;13(1):95–107.

    Article  PubMed  Google Scholar 

67. Enriquez M, Cheng AL, Kelly PJ, Witt J, Coker AD, Kashubeck-West S. Development and feasibility of an HIV and IPV prevention intervention among low-income mothers receiving services in a Missouri Day Care Center. Violence Against Women. 2010;16(5):560–78.

    Article  PubMed  Google Scholar 

68. Thomson A, Rivas C, Giovannoni G. Multiple sclerosis outpatient future groups: improving the quality of participant interaction and ideation tools within service improvement activities. BMC Health Serv Res. 2015;15:105.

    Article  PubMed  PubMed Central  Google Scholar 

69. Cawston PG, Mercer SW, Barbour RS. Involving deprived communities in improving the quality of primary care services: does participatory action research work? BMC Health Serv Res. 2007;7:88.

    Article  PubMed  PubMed Central  Google Scholar 

70. Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic personal health record for people with severe and enduring mental health problems. BMC Psychiatry. 2014;14:305.

    Article  PubMed  PubMed Central  Google Scholar 

71. Erwin K, Martin MA, Flippin T, Norell S, Shadlyn A, Yang J, et al. Engaging stakeholders to design a comparative effectiveness trial in children with uncontrolled asthma. J Comp Eff Res. 2016;5(1):17–30.

    Article  PubMed  Google Scholar 

72. Coker TR, Moreno C, Shekelle PG, Schuster MA, Chung PJ. Well-child care clinical practice redesign for serving low-income children. Pediatrics. 2014;134(1):e229–39.

    Article  PubMed  PubMed Central  Google Scholar 

73. Godfrey M, Smith J, Green J, Cheater F, Inouye SK, Young JB. Developing and implementing an integrated delirium prevention system of care: a theory driven, participatory research study. BMC Health Serv Res. 2013;13:341.

    Article  PubMed  PubMed Central  Google Scholar 

74. Reeve C, Humphreys J, Wakerman J, Carroll V, Carter M, O’Brien T, et al. Community participation in health service reform: the development of an innovative remote aboriginal primary health-care service. Aust J Prim Health. 2015;21(4):409–16.

    Article  PubMed  Google Scholar 

75. Barnes D, Carpenter J, Bailey D. Partnerships with service users in interprofessional education for community mental health: a case study. J Interprof Care. 2000;14(2):189–200.

    Article  Google Scholar 

76. Buck DS, Rochon D, Davidson H, McCurdy S. Involving homeless persons in the leadership of a health care organization. Qual Health Res. 2004;14(4):513–25.

    Article  PubMed  Google Scholar 

77. Mendenhall T, Berge JM, Harper P, GreenCow B, LittleWalker N, WhiteEagle S, BrownOwl S. The Family Education Diabetes Series (FEDS): community-based participatory research with a midwestern American Indian community. Nurs Inq. 2010;17(4):359–72.

    Article  PubMed  Google Scholar 

78. Fitzgerald MM, Kirk GD, Bristow CA. Description and evaluation of a serious game intervention to engage low secure service users with serious mental illness in the design and refurbishment of their environment. J Psychiatr Ment Health Nurs. 2011;18(4):316–22.

    Article  PubMed  CAS  Google Scholar 

79. Forbat L, Hubbard G, Kearney N. Patient and public involvement: models and muddles. J Clin Nurs. 2009;18(18):2547–54.

    Article  PubMed  Google Scholar 

80. Barnes M, Wistow G. Learning to hear voices: listening to users of mental health services. J Ment Health. 1994;3:525–40.

    Article  Google Scholar 

81. Government HMs. No health without mental health: a cross-government outcomes strategy. In: Health Do. London: Her Majesty's (HM) Government; 2011.

82. Munro K, Ross KM, Reid M. User involvement in mental health: time to face up to the challenges of meaningful involvement? Int J Ment Health Promot. 2006;8:37–44.

    Article  Google Scholar 

83. Hunter R, Cameron R, Norrie J. Using patient-reported outcomes in schizophrenia: the Scottish Schizophrenia Outcomes Study. J Psychiatr Serv. 2009;60(2):240–5.

84. Coulter A. The Autonomous Patient: Ending Paternalism in Medical Care. London: Stationery Office (for the Nuffield Trust); 2002.

85. Groene O, Sunol R, Klazinga NS, Wang A, Dersarkissian M, Thompson CA, et al. Involvement of patients or their representatives in quality management functions in EU hospitals: implementation and impact on patient-centred care strategies. Int J Qual Health Care. 2014;26(Suppl 1):81–91.

    Article  PubMed  PubMed Central  Google Scholar 

86. Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S. Supporting quality public and patient engagement in health system organizations: development and usability testing of the public and patient engagement evaluation tool. Health Expect. 2016;19(4):817–27. https://doi.org/10.1111/hex.12378.

87. 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.

    Article  PubMed  Google Scholar 

88. van C, McInerney P, Cooke R. Patients’ involvement in improvement initiatives: a qualitative systematic review. JBI Database System Rev Implement Rep. 2015;13(10):232–90.

    Article  PubMed  Google Scholar 

89. Bee P, Price O, Baker J, Lovell K. Systematic synthesis of barriers and facilitators to service user-led care planning. Br J Psychiatry. 2015;207(2):104–14.

    Article  PubMed  PubMed Central  Google Scholar 

90. Liang L, Cako A, Urquhart R, Straus SE, Wodchis WP, Baker GR, et al. Patient engagement in hospital health service planning and improvement: a scoping review. BMJ Open. 2018;8(1):e018263.

    Article  PubMed  PubMed Central  Google Scholar 

91. De Vries R, Stanczyk A, Wall IF, Uhlmann R, Damschroder LJ, Kim SY. Assessing the quality of democratic deliberation: a case study of public deliberation on the ethics of surrogate consent for research. Soc Sci Med. 2010;70(12):1896–903.

    Article  PubMed  PubMed Central  Google Scholar 

92. Blickem C, Kennedy A, Vassilev I, Morris R, Brooks H, Jariwala P, et al. Linking people with long-term health conditions to healthy community activities: development of Patient-Led Assessment for Network Support (PLANS). Health Expect. 2013;16(3):e48–59.

    Article  PubMed  PubMed Central  Google Scholar 

93. Bone LR, Edington K, Rosenberg J, Wenzel J, Garza MA, Klein C, et al. Building a navigation system to reduce cancer disparities among urban black older adults. Prog Community Health Partnersh. 2013;7(2):209–18.

    Article  PubMed  PubMed Central  Google Scholar 

94. Hall SJ, Samuel LM, Murchie P. Toward shared care for people with cancer: developing the model with patients and GPs. Fam Pract. 2011;28(5):554–64.

    Article  PubMed  Google Scholar 

95. Higgins A, Hevey D, Gibbons P, O’Connor C, Boyd F, McBennett P, et al. A participatory approach to the development of a co-produced and co-delivered information programme for users of services and family members: the EOLAS programme (paper 1). Ir J Psychol Med. 2016;34(01):19–27.

    Article  Google Scholar 

96. Jones EG, Goldsmith M, Effken J, Button K, Crago M. Creating and testing a deaf-friendly, stop-smoking web site intervention. Am Ann Deaf. 2010;155(1):96–102.

    Article  PubMed  Google Scholar 

97. MacNeill V. Forming partnerships with parents from a community development perspective: lessons learnt from sure start. Health Soc Care Community. 2009;17(6):659–65.

    Article  PubMed  Google Scholar 

98. Rose D. Partnership, co-ordination of care and the place of user involvement. J Ment Health. 2003;12(1):59–70.

    Article  Google Scholar 

99. Walsh M, Hostick T. Improving health care through community OR. J Oper Res Soc. 2005;56:193–201.

    Article  Google Scholar 

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