On November 5 and 6, Project Inform convened a meeting in San Francisco, bringing together community advocates and public health professionals to answer a complex question: When and how should surveillance data be used to help find those who aren’t linked to HIV medical care and re-engage them?
Nearly two years ago Edward Gardner from Denver Public Health and his colleagues published the first national estimates for HIV care linkage, retention and viral suppression and the results weren’t good. Only about half of people with HIV in the United States are retained in HIV care and roughly three-quarters do not have suppressed HIV levels. The negative impact of this reality on the lives and health of people living with HIV and on the epidemic at large is profound.
Experts are scrambling to turn these numbers around and one strategy is to use HIV surveillance data—specifically CD4 and viral load lab results—to determine who is out of care and to do something about it. Using surveillance data in this way is not without risk or controversy and there remain questions about how and when to use data for HIV care linkage and retention.
At the meeting in November, participants considered a variety of methods for using surveillance data to engage or re-engage people with HIV in care. One approach involves the department of health communicating only with providers. Another approach involves protected electronic communication between public health databases and the electronic medical records of health care systems. A third approach involves using public health workers to track people down who’ve been lost to care and re-engage them.
The meeting had several goals, which included:
- identifying ways that public health departments should consult with key stakeholders, including people living with HIV, before engaging in any of these activities;
- identifying methods that could be employed to safeguard the privacy and wellbeing of people living with HIV and to minimize the risks for harms, including inadvertent disclosure of HIV status and increased stigma; and
- attempting to reach consensus on whether any of these methods should ever be considered or employed.
The meeting successfully accomplished each of these goals and the results of the meeting will be published in several weeks. In short, however, the participants felt that at least some of these methods do hold genuine promise for improving the health and wellbeing of people with HIV and of reversing the negative cascade that Gardner and his colleagues identified. There was also consensus that there could be harms and that different geographic regions may require different approaches.
Project Inform is dedicated to continuing this important discussion on both a national and a local level. Please look for the report from the meeting and let us know what you think!