Advocacy Group Issues Recommendations on Using Surveillance Data for HIV Care Linkage and Retention

Project Inform, an HIV and hepatitis advocacy and education group has published recommendations drafted by a diverse group of advocates and public health professionals guiding the use of laboratory data collected by public health surveillance agencies to link and retain people with HIV in health care. These recommendations were developed at a Think Tank held by Project Inform November 6 and 7 in San Francisco.

“The CDC has confirmed that only about half of all people with HIV are in consistent care in the United States. That’s a shameful figure for a country of our wealth and technological prowess, and one that demands new tools to reverse this trend,” said David Evans, Director of Research Advocacy for Project Inform. That’s what prompted Project Inform to host this gathering and bring community leaders and public health officials to tackle this problem.”

For several years now a majority of states and U.S. territories have mandated that labs report the results of CD4 and viral load tests to public health departments. Put in place originally to monitor the health of people living with HIV, in more recent years public health departments have used the data to identify people with HIV who were never linked to care or who have fallen out of care, and then reach out to those individuals directly or through a provider.

Such activities are not without controversy or risks to the person being contacted. Stigma and discrimination remain a constant in the United States and potential breaches of privacy could have profound consequences.

“The risks of harm to individuals from improper use of HIV information can indeed be very real, especially in states with punitive laws related to HIV status disclosure,” said Walt Senterfitt, a Think Tank attendee and long time activist, public health epidemiologist and ethicist.  “The group decided, however, that there is a potentially much greater harm in not doing everything possible to ensure access to treatment, care and support of those with HIV who are marginalized by the system.  The keys to mitigate harms and optimize benefits are careful planning, community engagement and full-throated advocacy to change punitive and non-evidence-based HIV criminal laws.”

The recommendations lead off by urging public health departments who are contemplating putting such programs into place to meaningfully reach out to and consult with a range of stakeholders, especially people living with HIV. In this case, meaningful engagement means reaching out to key individuals early in the planning process and throughout the development and conduct of programs, and to use stakeholder engagement to monitor and evaluate the success of programs.

The group also issued recommendations for policies and procedures to ensure that health departments—whether they are reaching out to health care providers about patients who may be out of care or in reaching out directly to patients—are conducting activities in such a way that the privacy and safety of individuals is preserved.

“There was unanimous agreement by all attendees that while quite promising, new public health activities require feedback from the community and especially from people with HIV who are most at risk for being out of care,” said Daniel Montoya, Deputy Executive Director of the National Minority AIDS Council and one of the meetings attendees. “Engaging properly with the community will not only ensure that programs are successful, but that the rights and dignity of people with HIV are fully respected.”

The Think Tank participants, which included representatives from AIDS service organizations, academics and health departments, voted on and unanimously accepted a consensus statement affirming that the potential benefits of these activities are sufficient that stakeholder engagement should take place. That statement reads:

“The benefits [to more active uses of collected data] potentially outweigh the risks so that we encourage local jurisdictions to actively engage stakeholders in considering the use of surveillance data along with other tools to systematically increase access to care, ensure better linkages to services, and improve retention in care.”

“I was impressed that with such diverse perspectives and experience, our group came to agreement in supporting the central concept of using public health surveillance data to improve engagement in HIV care,” said Dr. Julie Dombrowski, from the Public Health – Seattle & King County HIV/STD Program and the University of Washington, “Everyone learned something from our discussions about what health departments need to consider and how they can most effectively engage stakeholders in the process of developing and implementing surveillance-based outreach programs.

The report may be found online at:

Source: Project Inform

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