How to build an HIV out of care watch list: Remaking HIV surveillance in the era of treatment as prevention

This paper describes how state and local departments of public health (DPHs) in the United States build HIV “out of care” lists using “Data to Care” guidance from the Centers for Disease Control and Prevention (CDC). DPHs use these lists in prevention outreach and contact tracing. DPHs build out of care lists using data sent to them by laboratories every time a clinician orders routine HIV-related bloodwork for a patient. If a person does not report bloodwork, or shows poor results, they can be placed on an out of care list. The processes DPHs use to construct and refine lists show how HIV care data changed during the 2010s, transforming from a class of sensitive information with many restrictions governing its exchange into a class of data that is accompanied by a mandate for public health actors to exchange and utilize it in a variety of programs. Re-uses of HIV care data for prevention follow confirmation that antiretroviral therapy for HIV is an effective way to prevent transmission, a paradigm called “treatment as prevention.” DPH personnel enhance lists by conducting investigations, matching lists against medical records, utilizing people search tools such as LexisNexis, searching social media platforms, and other methods. This can include collaboration with correctional and law enforcement agencies — a concern in jurisdictions where HIV nondisclosure is criminalized. Public health re-uses of HIV data are done without consent. This paper focuses on the labor and ethics of building HIV out of care lists, drawing on archival health policy data, fieldwork with the HIV/AIDS workforce in metropolitan Atlanta, and a literature review.