Expert Patients and Networks of Expertise and Ignorance

Patients with rare or understudied diseases often encounter a lack of medical answers about diagnosis or treatment and might seek new ways to obtain answers. The conceptual framework of “networks of expertise” helps analyze such encounters with a lack of medical answers as situations of medical ignorance, which are not necessarily accidental and have been shown to reflect the bias and organization of related networks of expertise. In this context, the paper analyzes and compares public narratives of patients’ experiences and suggests three possible patient strategies for responding to the lack of answers. These strategies include establishing external ties with experts and non-experts outside of one’s healthcare teams, engaging with patient organizations to affect medical research, and engaging with online communities as an alternative or supplementary network of expertise. In all three cases, patients’ efforts are both epistemic and organizational, seeking to (re)shape broader networks of expertise so that they are more likely to generate answers. These organizational dimensions of patients’ knowledge production work can be overlooked by the debates on “expert patients” and the relationship of patients’ expertise to that of credentialed experts.