What happens when lived experience is converted into data? This talk critically examines the effects of such “datafication” in healthcare. Data-driven systems such as clinical decision-support tools often implement a narrow definition of wellbeing. Through the case of epilepsy, I show that these narrow definitions lead to adverse health outcomes and prolonged delays in the provision of medical attention and resources to marginalized people. Healthcare professionals can (and do) circumvent the harmful effects of datafication for individual patients, but an overloaded health system provides little opportunity to do so. These findings advance our understanding of how experts navigate data-driven systems and of the gap between theory and practice in medicine. They also highlight opportunities for information systems to reduce healthcare disparities in service of a more just society.

Bio: Megh Marathe is a PhD candidate in the School of Information at the University of Michigan. Their research is situated at the intersection of human-computer interaction (HCI), science and technology studies, and disability studies. Their work has led to eight first-authored publications at top HCI venues, including a CHI best paper award; and earned prestigious grants and awards including a Microsoft Research fellowship. Marathe holds a master's degree in Computer Science from the University of Toronto and spent several years working at Apple, Microsoft, and Oracle.

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