Andrea Hartzler (Civan)

A fundamental part of becoming an empowered patient is learning to engage in the day-to-day management of personal health. Yet learning to manage personal health can take substantial time and effort when patients do so through trial and error on their own. Although health informatics support has the potential to help patients overcome this challenge by facilitating patient expertise sharing, we lack the knowledge necessary to meet this potential. Prior work provides little clarity about the nature of patients' personal health expertise and has not explored the practices patients use to leverage this experiential knowledge offered by other patients in similar situations. This dissertation contributes foundational knowledge about what patient expertise is and how patients share this valuable resource. Within the context of breast cancer, I (1) describe the characteristics of patient expertise through a comparative content analysis that demonstrates how this unique form of knowledge significantly differs from the expertise obtained from health professionals in topic, form, and style, (2) describe practices patients use to share their expertise in their everyday lives during cancer treatment through a naturalistic field study, and (3) employ a user-centered approach, informed by specific design recommendations I propose for enhancing health-related social software, to design a patient expertise locator to facilitate patient expertise sharing. This work provides substantial guidance on new ways to think about the design of supportive tools for patients. Patients need help from peers and this work provides the understanding and guidance necessary to empower patients by facilitating patient expertise sharing.