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”

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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 cancer 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-centered 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.

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