title: Shifting the paradigm: using HIV surveillance data as a foundation for improving HIV care and preventing HIV infection.
abstract: BACKGROUND
  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.
  
  
  RESULTS
  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.
authors.affiliation: Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention.
authors.forename: Patricia
authors.initials: P
authors.lastname: Sweeney
authors.forename: Lytt I
authors.initials: LI
authors.lastname: Gardner
authors.forename: Kate
authors.initials: K
authors.lastname: Buchacz
authors.forename: Pamela Morse
authors.initials: PM
authors.lastname: Garland
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Mugavero
authors.forename: Jeffrey T
authors.initials: JT
authors.lastname: Bosshart
authors.forename: R Luke
authors.initials: RL
authors.lastname: Shouse
authors.forename: Jeanne
authors.initials: J
authors.lastname: Bertolli
mesh_terms: D003142:Communication; D003219:Confidentiality / Q000941:ethics*; D057286:Electronic Health Records / Q000941:ethics; D015658:HIV Infections / Q000453:epidemiology / Q000517:prevention & control* / Q000628:therapy; D006291:Health Policy / Q000331:legislation & jurisprudence; D006297:Health Services Accessibility / Q000458:organization & administration; D006801:Humans; D011159:Population Surveillance; D058996:Quality Improvement / Q000941:ethics; D018570:Risk Assessment / Q000941:ethics; D012941:Social Responsibility; D014481:United States / Q000453:epidemiology
keywords: HIV prevention; HIV surveillance; HIV treatment; ethical data use
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