Living with Brain Data: Collaboration and Equity in Data-Intensive Brain Implants

This paper examines the lived experience of implanted medical devices through the case of brain implants for epilepsy. These data-driven devices record brain signals to detect and interrupt seizures, introducing new forms of technology-mediated care. Drawing on interviews with 17 patients and caregivers, we examine how data-intensive implants reshape medical interactions and everyday life. Participants reported shifts in doctor-patient collaboration, including the integration of a new expert-an engineer responsible for device-related concerns-into clinical visits. The preparatory and ongoing work of data transfer posed challenges for participants who were low-income, aging, traveling, or busy. Participants expressed a strong desire to access implant data to better understand and manage their condition. They were satisfied with the device unless their medications and/or seizures increased. We discuss emerging considerations for collaborative care and design justice introduced by medical implants that, unlike wearables, deliver treatment and cannot be easily set aside.