Caring through data: attending to the social and emotional experiences of health datafication

摘要

Since everyday health experiences have been increasingly mediated through shared personal and health data, it is important to consider how the trend affects the meanings of self-care and to reconsider the emotional impacts of sharing personal data beyond the individual. Kaziunas et al. call the sharing of health data among people "health datafication." They studied the experiences of parents of children with type 1 diabetes (T1D) using Nightscout, an open-source system that remotely monitors and tracks blood glucose levels in real-time via mobile devices. Before Nightscout, taking care of children with T1D was often described as exhaustive, as patients with T1D are constantly at risk for dangerously high or low blood glucose levels. Both extremes can be life threatening. For example, managing T1D often involves multiple night checks by parents to measure their child's blood glucose levels.