Learning from and acting on health consumer experience is a powerful way to work toward patient-centred care. 

Stories are different to more commonly gathered kinds of evidence about health service and system performance. Unlike statistical measures of clinical safety and effectiveness, and surveys of patient experience, people’s stories about health and care provide information about whole of life and whole of system experiences of health, healthcare and health outcomes. 

Personal accounts of lived experience draw attention to what matters most to people, for example about:

  • The healthcare they receive (or cannot access); and
  • Their experiences of continuity (or discontinuity) in care.

Stories can also provide information about the link between the health services people receive and their health outcomes. Personal experiences can provide evidence about the powerful role that policies, services and experiences outside the health system can play in shaping health outcomes. Telling a story can allow people to provide their perspectives on what changes would improve their own, and others’, health experiences and outcomes. 

There is strong evidence that consumer narratives provide valuable information for improving health. Yet it remains relatively uncommon for health services and health policy agencies to gather and use this information in a systematic way. 

Consumer stories are sometimes dismissed as “mere” anecdote. In reality our stories contain valuable evidence about the performance of health policies, services and systems. The robust but practical approach in this toolkit will help you to elevate stories from “anecdote” to practical evidence that you can use to guide better decision-making and work toward better health outcomes.