Blowing in the Wind: Unanchored Patient Information Work during Cancer Care.

Abstract

Patients do considerable information work. Technologies that help patients manage health information so they can play active roles in their health-care, such as personal health records, provide patients with effective support for focused and sustained personal health tasks. Yet, little attention has been paid to patients' needs for information management support while on the go and away from their personal health information collections. Through a qualitative field study, we investigated the information work that breast cancer patients do in such 'unanchored settings'. We report on the types of unanchored information work that patients do over the course of cancer treatment, reasons this work is challenging, and strategies used by patients to overcome those challenges. Our description of unanchored patient information work expands our understanding of patients' information practices and points to valuable design directions for supporting critical but unmet needs.