204. Endangered Healthcare Ecologies: Understanding and Addressing Patient Work
Samantha Whitman, Arizona State University; Kathleen Pine, Arizona State University; John Harlow, Arizona State University;
Patients are unpaid, untrained, and often unprepared laborers undergirding healthcare systems. Research from a variety of disciplines has examined Patient Work (PW)-the activities required to access healthcare and manage illness and treatment-as well as the effects of PW on patients and society (e.g., Boehmer 2016; May et al., 2014; Gui et al., 2018; Gui & Chen, 2019; Star, 1990; Strauss et al., 1982; Whitman et al., 2021). For example, research has examined how patients establish credibility when attempting to receive a diagnosis for a health condition (a crucial and often elusive step to receiving treatment and other services) (Epstein, 1996), and health services research suggests that excessive patient workload leads to non-adherence to medical treatment (rather than simple noncompliance as is often suggested) (Demain et al., 2015). However, PW remains largely invisible to clinicians, healthcare organizations, policymakers, designers, and society as a whole (Unruh & Pratt, 2008; Oudshoorn, 2008; Ancker et al., 2015), and research on PW tends to remain siloed in different academic disciplines. STS provides an ideal disciplinary space in which to examine research on and interventions to address PW across the healthcare spectrum, especially perspectives articulated by patients themselves (Lewis et al., 2022). This panel seeks submissions from those studying or working to address PW in a variety of forms. Potential topics include (but are not limited to) how patients navigate authoritative knowledge; information work; (in)visibility of PW in healthcare organizations, institutions, and policy; bottom-up responses to PW; and design of sociotechnical systems to support PW.
Keywords: Disciplines and the Social Organization of Science and Technology, Feminist STS, Medicine and Healthcare, Patient Work; Information work; Invisible work; Health Informatics; STS; Credibility; Health Care; Health Policy; Chronic Illness