Digital Health Humanities
Digital health technologies are transforming public health, medicine, and wellness ecosystems through consumer-facing wearables, environmental sensors, and new approaches to telemedicine. This seminar session will explore the benefits and potential harms of understanding human well-being as data-driven and mediated by digital interfaces, and we will consider the tensions between corporate and consumer ownership over the meanings of personal health data. We will analyze how risk-stratification through patient-generated data and population management through community-based virtual social networks reframe health disparities, bringing uncertain benefits to patients. Because the novel achievements of user-generated health data from apps and wearables rely heavily on participants’ willingness to share their data, we will consider how doing so may subject users to increased surveillance, financial penalties, or disease profiling. We will conclude by discussing how our attitudes toward human connection and sharing in digital culture shape the meaning we make of healthcare experiences, providing new insights on the ethical implications of self-tracking for health surveillance and social well-being.
Kirsten Ostherr, PhD, MPH is the Gladys Louise Fox Professor of English at Rice University, in Houston, Texas, where she is a media scholar, health researcher, and founding director of the Medical Humanities program. She is the author of Medical Visions: Producing the Patient through Film, Television and Imaging Technologies (Oxford, 2013) and Cinematic Prophylaxis: Globalization and Contagion in the Discourse of World Health (Duke, 2005), co-editor of Science/Animation, a special issue of the journal Discourse (2016), and editor of Applied Media Studies (Routledge, 2017). Her current research is on information and communication technologies in medicine, patient narratives, trust and privacy in digital health ecosystems, and the role of simulation as a mediator between human and technological forms of medical expertise. Her current book project is called Quantified Health: Learning from Patient Stories in the Age of Big Data. She is Director of the Medical Futures Lab and has spoken to audiences at the White House, the World Health Organization, the National Library of Medicine, TEDx, the mHealth Summit, Medicine X, the Louisville Innovation Summit, the Bauhaus, and universities and conferences worldwide.