Partnering with Patients for Change and Improvement: An Australian Perspective

  • Jeffrey BraithwaiteEmail author
  • Kate Churruca
  • Leanne Wells
  • Frances Rapport
  • Tony Lawson
  • Paula Arro
  • Jo Watson
Part of the Organizational Behaviour in Healthcare book series (OBHC)


Australia has had long-standing involvement in engaging with consumers, encouraging their participation in a multiplicity of ways, across policy, organizational, and service delivery levels. The Consumers Health Forum of Australia is at the forefront in coordinating activities and making progress. Gains have not been made across the board, and there is lack of a coordinated, national approach in part because Australia has a federated health system. Nevertheless, there are many initiatives under way, and research to support progress is increasingly compelling. Barriers to participation include institutional, attitudinal, social, and professional constraints, but there is also evidence of increased momentum for further involving consumers in healthcare. It is hard to see how progress could be arrested but we must be vigilant as further gains are not guaranteed.


Consumer engagement Patient engagement Patient involvement Health services Planning Systems of care 


  1. Australian Commission on Quality and Safety in Health Care. 2017a. Factsheet 2: Partnering with consumers. Sydney: ACSQHC.Google Scholar
  2. ———. 2017b. National safety and quality health service standards. 2nd ed. Sydney: ACSQHC.Google Scholar
  3. Australian Council on Healthcare Standards. 2018. What is accreditation? Accessed 30 Aug.
  4. Australian Government. 2014. Australian national preventive health agency. Accessed 13 Aug.
  5. Australian Institute of Health and Welfare. 2017. Health expenditure Australia 2015–2016. In In Health and welfare expenditure series. Canberra: AIHW.Google Scholar
  6. ———. 2018. Australia’s health 2018. Canberra: AIHW.Google Scholar
  7. Bate, Paul, and Glenn Robert. 2006. Experience-based design: From redesigning the system around the patient to co-designing services with the patient. BMJ Quality & Safety 15 (5): 307–310.CrossRefGoogle Scholar
  8. Baume, Peter. 1991. A question of balance: Report on the future of drug evaluations in Australia. Canberra: Australian Government Publishing Service.Google Scholar
  9. Boivin, Antoine, Kay Currie, Béatrice Fervers, Javier Gracia, Marian James, Catherine Marshall, Carol Sakala, Sylvia Sanger, Judi Strid, Victoria Thomas, Trudy van der Weijden, Richard Grol, and Jako Burgers. 2010. Patient and public involvement in clinical guidelines: International experiences and future perspectives. Quality and Safety in Health Care 19 (5): e22–e22. Scholar
  10. Bombard, Yvonne, G. Ross Baker, Elaina Orlando, Carol Fancott, Pooja Bhatia, Selina Casalino, Kanecy Onate, Jean-Louis Denis, and Marie-Pascale Pomey. 2018. Engaging patients to improve quality of care: A systematic review. Implementation Science 13 (1): 98. Scholar
  11. Boyd, Hilary, Stephen McKernon, Bernie Mullin, and Andrew Old. 2012. Improving healthcare through the use of co-design. The New Zealand Medical Journal 125 (1357): 76–87.Google Scholar
  12. Braithwaite, Jeffrey, Robert L. Wears, and Erik Hollnagel, eds. 2017. Resilient health care: Reconciling work-as-imagined and work-as-done. Vol. III. Boca Raton, FL: Taylor & Francis.Google Scholar
  13. Braithwaite, Jeffrey, Kate Churruca, Janet C. Long, Louise A. Ellis, and Jessica Herkes. 2018. When complexity science meets implementation science: A theoretical and empirical analysis of systems change. BMC Medicine 16 (1): 63. Scholar
  14. Brisbane North PHN. 2018a. About us.
  15. ———. 2018b. Recovery: Mental health, suicide prevention, alcohol and other drugs news from your PHN.
  16. Chamberlain, Paul, and Rebecca Partridge. 2017. Co-designing co-design: Shifting the culture of practice in healthcare. The Design Journal 20 (sup1): S2010–S2021.CrossRefGoogle Scholar
  17. Clinical Excellence Commission. 2017. Person-centred care. Accessed 6 Aug.
  18. Consumers Health Forum of Australia. 2015. The real people real data toolkit. Accessed 8 Aug.
  19. ———. 2016. About CHF. Accessed 8 Aug.
  20. ———. 2017. Collaborative Pairs Australia. Accessed 6 Aug.
  21. Davis, Rachel E., Rosamond Jacklin, Nick Sevdalis, and Charles A. Vincent. 2007. Patient involvement in patient safety: What factors influence patient participation and engagement? Health Expectations 10 (3): 259–267. Scholar
  22. Dawda, P., and A. Knight. 2017. Experience based co-design—A toolkit for Australia. Deakin West, ACT: Prestantia Health, Consumers Health Forum of Australia and Australian Healthcare and Hospitals Association.Google Scholar
  23. Department of Health. 2015a. Australia primary health networks. Australian Government. Accessed 27 Aug.
  24. ———. 2015b. Biosimilar awareness initiative. Australian Government. Accessed 22 Aug.
  25. Department of Health and Ageing. 2000. National medicines policy. Canberra, ACT: Australian Government.Google Scholar
  26. Domecq, Juan Pablo, Gabriela Prutsky, Tarig Elraiyah, Zhen Wang, Mohammed Nabhan, Nathan Shippee, Juan Pablo Brito, Kasey Boehmer, Rim Hasan, Belal Firwana, Patricia Erwin, David Eton, Jeff Sloan, Victor Montori, Noor Asi, Abd Moain Abu Dabrh, and Mohammad Hassan Murad. 2014. Patient engagement in research: A systematic review. BMC Health Services Research 14 (1): 89. Scholar
  27. Frampton, Susan, Sara Guastello, Carrie Brady, Maria Hale, Sheryl M. Horowitz, Susan Bennett Smith, and Susan Stone. 2008. Patient-centered care improvement guide. Derby, CT: Planetree, Inc. and Picker Institute.Google Scholar
  28. Freeman, Toby, Frances E. Baum, Gwyneth M. Jolley, Angela Lawless, Tahnia Edwards, Sara Javanparast, and Anna Ziersch. 2014. Service providers’ views of community participation at six Australian primary healthcare services: Scope for empowerment and challenges to implementation. The International Journal of Health Planning and Management 31 (1): E1–E21. Scholar
  29. Gagliardi, Anna R., Louise Lemieux-Charles, Adalsteinn D. Brown, Terrence Sullivan, and Vivek Goel. 2008. Barriers to patient involvement in health service planning and evaluation: An exploratory study. Patient Education and Counseling 70 (2): 234–241. Scholar
  30. Greenfield, David, Jeffrey Braithwaite, and Marjorie Pawsey. 2008. Health care accreditation surveyor styles typology. International Journal of Health Care Quality Assurance 21 (5): 435–443. Scholar
  31. Greenfield, David, Marjorie Pawsey, Justine Naylor, and Jeffrey Braithwaite. 2009. Are accreditation surveys reliable? International Journal of Health Care Quality Assurance 22 (2): 105–116. Scholar
  32. Greenfield, David, Anne Hogden, Reece Hinchcliff, Virginia Mumford, Marjorie Pawsey, Deborah Debono, Johanna I. Westbrook, and Jeffrey Braithwaite. 2016. The impact of national accreditation reform on survey reliability: A 2-year investigation of survey coordinators’ perspectives. Journal of Evaluation in Clinical Practice 22 (5): 662–667. Scholar
  33. Ham, C, and R Murray. 2018. The NHS ten year plan: How should the extra funding be spent?. The King’s Fund.
  34. Hollnagel, Erik, Jeffrey Braithwaite, and Robert L. Wears, eds. 2013. Resilient health care. Farnham, Surrey: Ashgate Publishing, Ltd.Google Scholar
  35. ———, eds. 2019. Delivering resilient health care. London: Routledge.Google Scholar
  36. International Association for Public Participation Australasia. 2016. IAP2’s public participation spectrum. Accessed 8 Aug.
  37. Janamian, Tina, Lisa Crossland, and Leanne Wells. 2016. On the road to value co-creation in health care: The role of consumers in defining the destination, planning the journey and sharing the drive. The Medical Journal of Australia 204 (7): 12.Google Scholar
  38. Kitson, Alison, Amy Marshall, Katherine Bassett, and Kathryn Zeitz. 2012. What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. Journal of Advanced Nursing 69 (1): 4–15. Scholar
  39. Liang, Laurel, Albina Cako, Robin Urquhart, Sharon E. Straus, Walter P. Wodchis, G. Ross Baker, and Anna R. Gagliardi. 2018. Patient engagement in hospital health service planning and improvement: a scoping review. BMJ Open 8 (1): e018263. Scholar
  40. Nathan, Sally, Elizabeth Harris, Ben Harris-Roxas, and Lynn Kemp. 2006. Health service staff attitudes to community representatives on committees. Journal of Health Organization and Management 20 (6): 551–559. Scholar
  41. Nathan, Sally, Lynda Johnston, and Jeffrey Braithwaite. 2011. The role of community representatives on health service committees: Staff expectations vs. reality. Health Expectations 14 (3): 272–284.CrossRefGoogle Scholar
  42. Nathan, Sally, Jeffrey Braithwaite, and Niamh Stephenson. 2013. Facilitating the action of community representatives in a health service: The role of a community participation coordinator. BMC Health Services Research 13 (1): 154. Scholar
  43. Nathan, Sally, Niamh Stephenson, and Jeffrey Braithwaite. 2014. Sidestepping questions of legitimacy: How community representatives manoeuvre to effect change in a health service. Health 18 (1): 23–40. Scholar
  44. National Health Service England. 2014. Five year forward view.
  45. National Health and Medical Research Council, and Consumers Health Forum. 2016. Statement on consumer and community involvement in health and medical research.
  46. New South Wales Agency for Clinical Innovation (ACI). 2015. Patient experience and consumer engagement: A framework for action. Chatswood, NSW: ACI.Google Scholar
  47. NPS MedicineWise. 2016. Choosing wisely Australia.
  48. Ocloo, Josephine, and Rachel Matthews. 2016. From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement. BMJ Quality & Safety 25 (8): 626–632. Scholar
  49. Oliver, Sandy, L. Clarke-Jones, R. Rees, R. Milne, P. Buchanan, J. Gabbay, G. Gyte, A. Oakley, and K. Stein. 2004. Involving consumers in research and development agenda setting for the NHS: Developing an evidence-based approach. Tonbridge Wells: Gray Publishing.Google Scholar
  50. Parsons, Suzanne, Anna Winterbottom, Peter Cross, and Don Redding. 2010. The quality of patient engagement and involvement in primary care. London: The King’s Fund.Google Scholar
  51. Pomey, Marie-Pascale, and Paule Lebel. 2016. Patient engagement: The Quebec path∗. HealthcarePapers 16 (2): 80–85.CrossRefGoogle Scholar
  52. Rapport, Frances, Jeffrey Braithwaite, Rebecca Mitchell, Johanna Westbrook, and Kate Churruca. 2017. Transitional care in a federated landscape. In Researching quality in care transitions: international perspectives, 179–200. Cham: Palgrave Macmillan.CrossRefGoogle Scholar
  53. Robert, Glenn, Jocelyn Cornwell, Louise Locock, Arnie Purushotham, Gordon Sturmey, and Melanie Gager. 2015. Patients and staff as codesigners of healthcare services. BMJ 350: g7714. Scholar
  54. Sarrami-Foroushani, Pooria, Joanne Travaglia, Deborah Debono, and Jeffrey Braithwaite. 2014a. Implementing strategies in consumer and community engagement in health care: Results of a large-scale, scoping meta-review. BMC Health Services Research 14 (1): 402.CrossRefGoogle Scholar
  55. ———. 2014b. Key concepts in consumer and community engagement: A scoping meta-review. BMC Health Services Research 14 (1): 250.CrossRefGoogle Scholar
  56. Schneider, Eric C., Dana O. Sarnak, David Squires, Arnav Shah, and Michelle M. Doy. 2017. Mirror, mirror 2017: International comparison reflects flaws and opportunities for better US health care. New York, NY: The Commonwealth Fund.Google Scholar
  57. Scholz, Brett, Julia Bocking, Michelle Banfield, Chris Platania-Phung, and Brenda Happell. 2018. “Coming from a different place”: Partnerships between consumers and health services for system change. Journal of Clinical Nursing 27 (19–20): 3622–3629. Scholar
  58. Smith, Sian K., Ann Dixon, Lyndal Trevena, Don Nutbeam, and Kirsten J. McCaffery. 2009. Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Social Science & Medicine 69 (12): 1805–1812. Scholar
  59. Stankevicius, Adam. 2014. Consumers and copayments: Implications for health and Medicare. The Medical Journal of Australia 200 (9): 517–518. Scholar
  60. The King’s Fund. 2018. Our work on the role of patients and the public in health and care and service design. The King’s Fund.
  61. Wears, Robert L., Erik Hollnagel, and Jeffrey Braithwaite, eds. 2015. Resilient health care: The resilience of everyday clinical work. Vol. II. Farnham, Surrey: Ashgate Publishing, Ltd.Google Scholar
  62. Wellcome Trust. 2011. Community engagement–under the microscope. London: Wellcome Trust.Google Scholar
  63. Wells, Leanne. 2016. Patient first—Innovation in consumer-centred care. Health Voices: Journal of the Consumers Health Forum of Australia 17: 1–2.Google Scholar
  64. ———. 2018. The paradox of consumer-centred care. In Australian healthcare and hospitals association: The health advocate, April 13.
  65. Wiley, Janice, Mary Westbrook, Janet Long, Jerry R. Greenfield, Richard O. Day, and Jeffrey Braithwaite. 2014. Diabetes education: The experiences of young adults with type 1 diabetes. Diabetes Therapy 5 (1): 299–321. Scholar
  66. Wiseman, V., G. Mooney, G. Berry, and K.C. Tang. 2003. Involving the general public in priority setting: Experiences from Australia. Social Science & Medicine 56 (5): 1001–1012. Scholar
  67. World Health Organization. 2016. Patient engagement: Technical series on safer primary care. Geneva: World Health Organization.Google Scholar

Copyright information

© The Author(s) 2019

Authors and Affiliations

  • Jeffrey Braithwaite
    • 1
    Email author
  • Kate Churruca
    • 1
  • Leanne Wells
    • 2
  • Frances Rapport
    • 1
  • Tony Lawson
    • 2
  • Paula Arro
    • 3
  • Jo Watson
    • 2
  1. 1.Centre for Healthcare Resilience and Implementation ScienceMacquarie UniversityNorth RydeAustralia
  2. 2.Consumers Health Forum of AustraliaDeakinAustralia
  3. 3.Brisbane North Primary Health Network (PHN)BrisbaneAustralia

Personalised recommendations