Reparative Design: A Study of Collective Practices for Generating and Redistributing Care Online

Abstract

Online content produced by sick bodies, outside of clinical trials, is increasingly studied as real world evidence. US policy and biomedical companies are designing ways to make patient input legible and useful to their evidence-based medical system. My design study suggests an ethic of repair that might learn from the political agency of people with chronic autoimmune conditions. It brings feminist materialist studies into dialogue with two collective care groups who devise tools for reciprocal, collaborative intra-action. Their tools offer different ways to study illness online and negotiate boundaries (of bodies/expertise/space). Together they articulate the values and risks in generating embodied knowledge and redistributing data through digital communities.