Care Frictions: A Critical Reframing of Patient Noncompliance in Health Technology Design
Eleanor R. Burgess, Elizabeth Kaziunas, Maia L. Jacobs
摘要
Patient work encompasses a challenging set of activities necessary for learning about and managing chronic conditions over time. Many patient-centered health technology interventions focus on supporting types of patient work, such as symptom tracking, medication adherence, and information sharing between patients and providers. However, people may not always follow, or may actively resist, the activities prescribed by their formal patient role. In this paper, we present three case studies about patients with different chronic conditions to critically reflect on the types of patient behavior commonly taken up in health technology design as acts of "noncompliance." Detailing conflicts that emerge when patients are caught between meeting their personal needs and following clinical best practices, we show how everyday life and health system goals are often misaligned in ways that can't be easily reconciled through current design approaches. As a way forward, we argue for alternative ways of understanding the tensions routinely shaping people's healthcare experiences. We introduce the term care frictions as a sensitizing concept useful for helping designers reframe "noncompliant" behaviors as legitimate forms of patient work. Our paper also offers design considerations-both on challenges and generative possibilities-for future CSCW research seeking to support a wider breadth of patient behavior. In this, we call attention to the value of designer and researcher reflexivity in making visible the problematic assumptions in health technology design that can lead to social and emotional patient harms.
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