Stories support consumer partnership and engagement

Listening to, and acting on, consumer stories are ways to engage and partner with consumers. Consumer engagement and partnership are not just requirements of the National Safety and Quality Health Standards (and state and territory legislative and policy frameworks), they are proven means of delivering better health outcomes. The outcomes that flow from consumer partnership include: improved clinical quality and outcomes, more cost effective service delivery, and better consumer experiences of care. Specific benefits include: 

Decreased mortality, decreased readmission rates, decreased rates of healthcare acquired infections, reduced length of stay, improved adherence to treatment regimes [and]… improved functional status… lower costs… and increased workforce satisfaction and retention rates.[11]

Listening to and acting on consumer stories can deliver all the essential benefits of consumer engagement: 

  • It is one way to learn from and work with people to deliver better health outcomes. 
  • Listening to stories regards consumers as people with knowledge and experience to share about their health and healthcare. 
  • It provides information about consumer circumstances, choices, and preferences that can help to tailor service delivery to actual needs and situations. 
  • Sharing stories can allow consumers to contribute to, and to shape, the design, planning, delivery and evaluation of care.[12]

Stories can build empathy and drive change 

Stories can demonstrate the personal and emotional impacts of health policies and services, on people. They show the ‘human side’ of policy debates and service challenges.  A well-told story can help listeners or readers ‘walk in the shoes’ of a patient or carer. This builds empathy for the consumer experience. It can encourage willingness to make changes to improve consumer experience. Stories can “build understanding, create a platform for discussion and motivate people” to act for an improved health system and better health outcomes.[13]

Telling a story can be empowering, but can also present risks.

Inviting consumers to share their stories can be an important way of acknowledging that they have knowledge that is important to health services, and that can benefit other consumers. People often find it satisfying to share a story that contributes to a better experience for others.[14] Sharing a health experience can contribute to a sense of control over difficult or challenging experiences of ill-health.[15] In turn this has been found to increase the likelihood of effective self-management of health[16] and some chronic conditions.[17]

When care is taken to ensure stories are heard from marginalised or excluded people, storytelling projects can also help to ensure that “a diversity of voices is heard in public debate”.[18]

This can assist in ensuring that health debates reflect the issues for health consumers, and in particular those whose voices are less often heard by decision-makers. 

However, it is important to recognise that sharing a story can pose risks to consumers. It can be distressing, or traumatic, to share a story about difficult health experience. Sharing certain stories can expose storytellers to stigma or discrimination. Consumers may fear reprisals or reduced quality of care if they share a negative story about a health professional or service. It is important to recognise and manage these risks to consumers. This respects consumers, and acknowledges the value of their stories as a powerful source of evidence for better decision-making. This toolkit provides guidance and support in this area.

References:

[11] Australian Commission on Safety and Quality in Health Care (ACSQHC) (2011) National Safety and Quality Health Service Standards (ACSQHC: Sydney

[12] Consumers Health Forum of Australia (2013) Consumer and Community Engagement <http://ourhealth.org.au/consumer-rep-support/consu...

[13] Ball, Rachel (2013) When I tell my story, I’m in charge: Ethical and effective storytelling in in advocacy (Victoria Law Foundation: Melbourne).

[14] Palmer, David, Lucy Williams, Sue White, Charity Chenga, Verusca Calabria, Dawn Branch, Sue Arundal, Linda Storer, Chris Ash, Claire Cuthill, Haile Bezuayehu, Eleni Hatzidimitriadou (1999) ‘ “No one knows like we do”, the narratives of mental health service users trained as researchers’ Journal of Public Mental Health 8(4):1999; The Kings Fund (2012) Experience Based Co-Design Toolkit <http://www.kingsfund.org.uk/projects/ebcd>

[15] Centre for Ageing Studies, Flinders University (2006) The Australian longitudinal study of ageing: 15 years of ageing in South Australia (Flinders University and South Australian Department of Families and Communities: Adelaide)

[16] Centre for Ageing Studies, Flinders University (2006) The Australian longitudinal study of ageing: 15 years of ageing in South Australia (Flinders University and South Australian Department of Families and Communities: Adelaide), p87-88

[17] Weingarten, S, J Henning, E Badamgarav, E Knight, K Hasselbald, V Gano and J Ofman (2002) ‘Interventions used in disease management programmes for patients with chronic illness – which ones work? Meta-analysis of published reports’, British Medical Journal, 325, 925

[18] Ball, Rachel (2013) When I tell my story, I’m in charge: Ethical and effective storytelling in in advocacy (Victoria Law Foundation: Melbourne), p50

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