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.

Kaziunas et al. performed 21 semi-structured interviews with members of the Nightscout community. They followed the situational analysis approach to grounded theory. The main findings from the parents were that Nightscout could really help to give back their ability to live life more fully, and provide parents with greater peace of mind. With Nightscout, many parents can relax and finally sleep through the night. They can develop plans with schools to coordinate care based on real-time blood glucose levels. Being able to remotely monitor blood glucose data can be a liberating experience for both parents and children. While Nightscout enables people to experience short-term freedom, long-term use can lead to concerns about how this freedom will be used. Many parents expressed a need for guidance and support in anticipating an uncertain future.

Although the parents’ experiences with Nightscout demonstrate the varied ways that care can be enacted through data, Nightscout also results in a sense of extreme monitoring and a sense of control. The studies provide evidence of the unintended social and emotional consequences of a design focused on finding a technological solution to a chronic illness. To solve the problem, Kaziunas et al. propose the concept of caring through data as an alternative to data as care. With caring through data, they attempt to shift the lens from the technosolutionism of data back to the practices of care-giving so that data acts in ways that promote empathy, relational intimacy, and compassion.