Lived Data: Tinkering With Bodies, Code, and Care Work

Human–computer interaction research on personal informatics in health care has focused on systems that aim to support patient empowerment and enable better health outcomes with data monitoring and tracking. Through examining the lived experience of personal data used to manage chronic illness, we show how such technology design is also the site of radical dependencies, collaborative care arrangements, and wider sociopolitical concerns tied to new forms of technical labor and shifts in medical expertise. Drawing from ethnographic research with open source, do-it-yourself collectives engaged in opening up corporate-controlled type 1 diabetes devices and data, we propose the analytical lens of lived data. Lived data emphasize data as an integral way of living, enacted through a multiplicity of things, relations, and practices, from bodies and needles, social media support groups, and legal processes to writing code, making visualizations, and hacking devices. Building on critical and feminist scholarship of human–machine relations, we articulate the work that goes into producing and living personal data, the physical and emotional costs of data tracking, and the consequences of do-it-yourself as a form of individual empowerment in health and wellness.