Shifting the paradigm: using HIV surveillance data as a foundation for improving HIV care and preventing HIV infection

Abstract

Context: Reducing HIV incidence in the United States and improving health outcomes for people living with HIV hinge on improving access to highly effective treatment and overcoming barriers to continuous treatment. Using laboratory tests routinely reported for HIV surveillance to monitor individuals' receipt of HIV care and contacting them to facilitate optimal care could help achieve these objectives. Historically, surveillance-based public health intervention with individuals for HIV control has been controversial because of concerns that risks to privacy and autonomy could outweigh benefits. But with the availability of lifesaving, transmission-interrupting treatment for HIV infection, some health departments have begun surveillance-based outreach to facilitate HIV medical care.

Methods: Guided by ethics frameworks, we explored the ethical arguments for changing the uses of HIV surveillance data. To identify ethical, procedural, and strategic considerations, we reviewed the activities of health departments that are using HIV surveillance data to contact persons identified as needing assistance with initiating or returning to care.

Findings: Although privacy concerns surrounding the uses of HIV surveillance data still exist, there are ethical concerns associated with not using HIV surveillance to maximize the benefits from HIV medical care and treatment. Early efforts to use surveillance data to facilitate optimal HIV medical care illustrate how the ethical burdens may vary depending on the local context and the specifics of implementation. Health departments laid the foundation for these activities by engaging stakeholders to gain their trust in sharing sensitive information; establishing or strengthening legal, policy and governance infrastructure; and developing communication and follow-up protocols that protect privacy.

Conclusions: We describe a shift toward using HIV surveillance to facilitate optimal HIV care. Health departments should review the considerations outlined before implementing new uses of HIV surveillance data, and they should commit to an ongoing review of activities with the objective of balancing beneficence, respect for persons, and justice.

Keywords: HIV prevention; HIV surveillance; HIV treatment; ethical data use.