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.

Using HIV Surveillance Laboratory Data to Identify Out-of-Care Patients

“…HIV-associated laboratory tests that are reported to public health surveillance have been used as a proxy measure of care engagement of HIV? individuals [3][4][5].…”

Barriers to HIV Care and Treatment Among Participants in a Public Health HIV Care Relinkage Program

“…Prior to launching CAPP, we consulted HIV medical and social service providers, community representatives, relevant government entities, and individual PLWHA identified through surveillance to inform the development of the intervention. 12,14,15 Intervention components…”

“…12,13 Most CAPP participants are identified by use of public health HIV laboratory surveillance data. During the period of this study, persons were eligible if they were diagnosed with HIV for ‡ 6 months and met one of two criteria: (1) no CD4 count or plasma HIV RNA [viral load (VL)] results reported for ‡ 12 months, or (2) a VL > 500 copies/mL and CD4 £ 500 cells/ mm 3 at the time of last report in the preceding 12 months.…”

Addressing the Challenges of the HIV Continuum of Care in High-Prevalence Cities in the United States

“…One important shift in HIV prevention since 2010 is that surveillance and programmatic activities, once very separate domains, are increasingly becoming linked and interdependent as surveillance data are being used for programmatic purposes at both the individual level (for patient tracking through the care continuum) and the jurisdictional level (for monitoring of outcomes along the care continuum). 6 Recent funding announcements have supported this linkage and have also directed grantees to focus on highest impact activities, learn how to bill for services now covered by the ACA such as HIV testing, implement systems that allow complete reporting of surveillance data, including HIV care indicators, and explore how to share those data safely for program use.…”