ARI SHAPIRO
With the proliferation of oral therapies (in place of injectables) for many chronic conditions, the locus of medical treatment is shifting from the surveilled context of the clinic to the private space of the home. In the home, compliance and persistency – the extent to which patients take medications over time – have become pressing concerns. Non-compliance adversely affects health outcomes, and costs manufacturers millions. The medical community has difficulty understanding non-compliance, often relegating it to individual irrationality or dysfunction in the doctor-patient relationship. Ethnography opens up the issue by entering the private space of pill-taking to understand the beliefs, relationships, and activities that contribute to patient (non-)compliance....
cancer
Intelligences
Human API as a Research Source in Health Care
Susan Faulkner • 1 Comment
KNOWL BAEK, KYLE DUKE, ROY LUO, MONICA LEE and ANIJO MATHEW
This paper illustrates how the concept of “Human API” can help cancer post-treatment cancer patients with challenges they face once they are released from the hospital. The results and implications of this semester long graduate project will help illuminate how the Human API through its various data collection methods could potentially play a larger role in extended cancer care. The research will also attempt to determine if hyper-connected networks of individual patients could become effective sources of information for health institutions to engage and connect with patients after treatment or surgery....
Intelligences
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”
EPIC People • 0 Comments
KENTON T. UNRUH and WANDA PRATT
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,...