Illness narratives as evidence for healthcare policy

Abstract

Individual narratives about patient/family experiences of illness, and needs for information and support, can exert a powerful influence on policy formulation, particularly when a sensational story captures the attention of the media or general public. In this chapter, we situate the use and potential value of the narrative evidence within the messy world of policy making when trying to privilege evidence that brings diversity of voice and experiences on a topic, rather than individual stories. We explore the challenges associated with this type of experiential evidence, and the gap in translating such evidence to decision makers. We argue that both researchers and policy makers would benefit from a deeper understanding of each other’s worlds, and present examples of strategies to bridge this gap. We conclude by offering advice for policy makers regarding communication of their needs for experiential evidence, and advice for qualitative researchers regarding the translation of narrative-based findings for policy.