Acceptance of the Use of HIV Surveillance Data for Care Engagement

Abstract

Background Use of surveillance data including laboratory results (e.g. CD4 and HIV RNA) by public health departments to facilitate linkage, retention, and re-engagement of HIV-infected individuals in health care is on the rise. This is part of the goal of increasing the proportion of infected persons achieving virologic suppression. However, this use of surveillance data is not without controversy, particularly among some providers and people living with HIV. Methods We conducted informal discussions with key stakeholders and a literature search, and held a national think tank in November 2012, bringing together 31 representatives of the federal government, county and state officials, health care providers, and community-based organizations. A follow-up community consultation specific to San Francisco was held January 24, 2014, with 10 participants. Notes from these activities were used as data for this analysis. Results The think tank identified three strategies utilizing HIV surveillance data to aid in care engagement: 1) provider-mediated – where health department staff work with the provider of record on re-engagement, 2) electronic linkages between surveillance databases and medical records databases, and 3) direct outreach – where trained health department staff reach out to persons out of care. Participants also developed recommendations for minimizing harm, guidance on meaningful stakeholder involvement, and a consensus statement in support of the use of HIV surveillance data in care engagement. Conclusions Acceptance of the use of surveillance data for HIV care linkage, retention, and re-engagement is achievable, particularly if stakeholders have been engaged in the design, conduct, and evaluation of programs.

“Closing the Loop” Developing State-Level Data Sharing Interventions to Promote Optimum Outcomes Along the HIV Continuum of Care

“…Finally, SDoH worked closely with legal advisors and collaborators to ensure that data sharing interventions protected patient privacy and complied with all state regulations in this area. Our findings build on previous research showing that data sharing interventions are acceptable to patients and other stakeholders, as potential improvements in care outcomes outweigh concerns around privacy [23,24]. We hope that these lessons learned can help future states to "close the loop" between SDoH and providers.…”

Examining Clinic-Based and Public Health Approaches to Ascertainment of HIV Care Status

“…Concurrent with the development of our study, colleagues at Project Inform, a San Francisco-based HIV treatment advocacy organization, and the UCSF Center for AIDS Prevention Studies convened a national think tank with representatives from federal, state, and county government, health care, and community-based organizations to discuss existing models for the use of surveillance data to re-engage HIV-infected individuals in care and define best practices for meaningful stakeholder engagement. As described in this supplement, 27 community representatives believed provider-led outreach to those lost to follow up maximized benefits while minimizing risks to HIV-infected individuals. We employed this approach in our study and among the patients located by the ascertainer, this type of in person outreach was highly acceptable.…”

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

“…Multiple strategies, each with their own benefits and drawbacks, were deemed acceptable including provider-mediated outreach, electronic data linkages, and direct outreach by trained patient navigators. 41 …”