That the lived experience of patients has not been included in health care planning and delivery, and that this exclusion can negatively impact patients’ health and well-being is established in existing literature about patient engagement. When patients receive support to reflect on and share their health care experiences with their care providers, however, mutual learning and a strengthened care relationship can result. The author uses autoethnographic research to tell and analyze her own patient story and to examine how the model of transformation through writing can help patients move from a “first” (disempowered, suffering) story to a “second” story of empowerment and new perspective.1 The author explores to what extent expressive and reflective writing may play a role in helping patients to “re-narrate” what has happened to them within the health care context, and to spark dialogue with health care leaders that may result in improved care for others.
University of California Press