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

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.

Missed connections: HIV-infected people never in care.

OBJECTIVE: Clinical interventions that lengthen life after HIV infection and significantly reduce transmission could have greater impact if more HIV-diagnosed people received HIV care. We tested a surveillance-based approach to investigating reasons for delayed entry to care. METHODS: Health department staff in three states and two cities contacted eligible adults diagnosed with HIV four to 24 months previously who had no reported CD4+ lymphocyte (CD4) or viral load (VL) tests. The staff conducted interviews, performed CD4 and VL testing, and provided referrals to HIV medical care. Reported CD4 and VL tests were prospectively monitored to determine if respondents had entered care after the interview. RESULTS: Surveillance-based follow-up uncovered problems with reporting CD4 and VL tests, resulting in surveillance improvements. However, reporting problems led to misspent effort locating people who were already in care. Follow-up proved difficult because contact information in surveillance case records was often outdated or incorrect. Of those reached, 37% were in care and 29% refused participation. Information from 132 people interviewed generated ideas for service improvements, such as emphasizing the benefits of early initiation of HIV care, providing coverage eligibility information soon after diagnosis, and leveraging other medical appointments to provide assistance with linkage to HIV care. CONCLUSIONS: Surveillance-based follow-up of HIV-diagnosed individuals not linked to care provided information to improve both surveillance and linkage services, but was inefficient because of difficulties identifying, locating, and recruiting eligible people. Inefficiencies attributable to missing, incomplete, or inaccurate surveillance records are likely to diminish as data quality is improved through ongoing use.

Medication-related barriers to entering HIV care.

Early entry to HIV care and receipt of antiretroviral therapy improve the health of the individual and decrease the risk of transmission in the community. To increase the limited information on prospective decisions to enter care and how these decisions relate to beliefs about HIV medications, we analyzed interview data from the Never in Care Project, a multisite project conducted in Indiana, New Jersey, New York City, Philadelphia, and Washington State. From March 2008 through August 2010, we completed structured interviews with 134 persons with no evidence of HIV care entry, 48 of whom also completed qualitative interviews. Many respondents believed that HIV care entails the passive receipt of medications that may be harmful or unnecessary, resulting in reluctance to enter care. Respondents voiced concerns about prescription practices and preserving future treatment options, mistrust of medications and medical care providers, and ambivalence about the life-preserving properties of medications in light of an assumed negative impact on quality of life. Our results support the provision of information on other benefits of care (beyond medications), elicitation of concerns about medications, and assessment of psychosocial barriers to entering care. These tasks should begin at the time a positive test result is delivered and continue throughout the linkage-to-care process; for persons unwilling to enter care immediately, support should be provided in nonmedical settings.

The influence of perceptions of HIV infection, care, and identity on care entry.

The benefits of accessing HIV care after diagnosis (e.g., improved clinical outcomes and reduced transmission) are well established. However, many persons who are aware that they are HIV infected have never received HIV medical care. During 2008-2010, we conducted 43 in-depth interviews in three health department jurisdictions among adults who had received an HIV diagnosis but who had never accessed HIV medical care. Respondents were selected from the HIV/AIDS Reporting System, a population-based surveillance system. We explored how respondents perceived HIV infection and HIV medical care. Most respondents associated HIV with death. Many respondents said that HIV medical care was not necessary until one is sick. Further, we explored how these perceptions may have conflicted with one's identity and thus served as barriers to timely care entry. Most respondents perceived themselves as healthy. All respondents acknowledged their HIV serostatus, but many did not self-identify as HIV-positive. Several respondents expressed that they were not ready to receive HIV care immediately but felt that they would eventually attempt to access care. Some stated that they needed time to accept their HIV diagnosis before entering care. To improve timely linkage to care, we suggest that during the posttest counseling session and subsequent linkage-to-care activities, counselors and service providers discuss patient perceptions of HIV, particularly to address beliefs that HIV infection is a "death sentence" or that HIV care is necessary only for those who exhibit symptoms.

HIV counseling, testing and referral experiences of persons diagnosed with HIV who have never entered HIV medical care.

The HIV counseling, testing, and referral (CTR) encounter represents an important opportunity to actively facilitate entry into medical care for those who test positive for HIV, but its potential is not always realized. Ways to improve facilitation of linkage to care through the CTR encounter haven't been explored among HIV-infected persons who have not entered care. We conducted 42 structured and qualitative interviews among HIV-infected persons, diagnosed 5-19 months previously, in Indiana, Philadelphia and Washington State, who had not received HIV medical care. Respondents related individual and system-level barriers, as well as recommendations for improving the effectiveness of CTR as a facilitator of linkage to HIV medical care through more active referrals, and for strengthening the bridge between CTR and linkage to care services. Our findings suggest that standards for active case referral by CTR staff and integration of CTR and linkage to care services are needed.