Transparent Patients: Addressing Risk in Health Information Exchanges

In the United States (US), Health Information Exchanges (HIEs) are emergent initiatives designed to pool the personal health information of individual patients in order to facilitate care. Proponents also hope that HIEs will support diverse secondary uses of health information (e.g. biomedical research, public health surveillance, comparative effectiveness research, etc.), thereby improving quality while also lowering care costs. Yet, while HIEs stand to transform systems care in some significant ways, they also generate new risks associated with the ubiquitous flows of personal health information. Using documentary evidence (and informed by debates in content- and discourse-analysis), this paper considers how HIEs are conceptualizing, addressing, and attempting to manage emergent risks. With particular attention to the ways that patients are rendered transparent—and focusing on how they are made responsible for managing the risks associated with flows of their personal health information—this paper critically examines potential the unintended consequences of HIEs in the US.