Locating Patient Expertise in Everyday Life

Abstract

Coping with a new health issue often requires individuals to acquire knowledge and skills to manage personal health. Many patients turn to one another for experiential expertise outside the formal bounds of the health-care system. Internet-based social software can facilitate expertise sharing among patients, but provides only limited ways for users to locate sources of patient expertise. Although much prior research has investigated expertise location and systems to augment expertise sharing in workplace organizations, the transferability of this knowledge to other contexts, such as personal health, is unclear. Guided by expertise locating frameworks drawn from prior work, we conducted a field study to investigate expertise locating in the informal and everyday context of women diagnosed with breast cancer. Similarities between patients' expertise locating practices and practices of professionals in workplace organizations suggest similar support strategies could apply in both contexts. However, unlike professionals, unsolicited advice often triggered patients to locate expertise. They identified expertise through various forms of gatekeeping. The high-stakes nature of problems patients faced also led them to use triangulation strategies in anticipation of breakdowns in expertise location. Based on these key differences, we explored five design additions to social software that could support patients in their critical need to locate patient expertise.