The strongInvisiblestrong Work of Being a Patient and Implications for.pdfVIP

The Invisible Work of Being a Patient and Implications for Health Care: “[the doctor is] my business partner in the most important business in my life, staying alive.” KENTON T. UNRUH Division of Biomedical and Health Informatics, University of Washington WANDA PRATT Information School Division of Biomedical and Health Informatics, University of Washington In a distributed system of care, patients shuffle among many clinicians and spend the majority of their time away from the treatment center. Although we see the results of patients’ work (e.g., medication taken, arrived at appointment) we do not see the work itself. By failing to see this work, industry overlooks issues with vital implications for their business. To lift the veil of invisibility from patients’ work, we conducted a longitudinal field study to uncover the invisible work breast canc er patients do to obtain information, bridge inter- institutional care, manage dependencies and resolve inconsistent recommendations. In this paper we provide detailed examples of this work and explore the impact on patients and health-care operations; identify patterns of work with implications for patient-centere d research and design; and propose common information spaces to improve patients’ work through designs that highlight dependencies, preserve state information, link recommendations to justifications, and track task progress. Motivation: Why Study Patient Work? In a distributed system of outpatient care, patients shuffle among many clinicians and spend the majority of their time away from the treatment center. Although we see the results of patients’ work (e.g., medication taken, arrived at appointment), we do not see the work itself. Consequently, patients do what Star and Strauss call background work: a type of invisible work where “the workers themselves are quite visible, yet the work they perform is invisible or relegated to a background of