Identification and Reporting of Gender Identity in HIV Surveillance Data in the Deep South

Although studies have identified high prevalence of HIV among individuals who are transgender, HIV surveillance data regarding gender identity is incomplete, resulting in uncertainty regarding the gender identity, including transgender and other diverse gender identities, of individuals diagnosed with HIV. This information is critical to planning strategies for HIV prevention and care.

From August 2018 to March 2019, interviews were conducted with HIV surveillance leadership (including Surveillance Directors, Epidemiologists, and HIV/STI Prevention Staff) at offices of epidemiology from eight US Deep South states regarding their practices related to gender identity documentation in HIV surveillance data and the barriers encountered in these documentation processes as well as their recommendations for improving gender identity data collection.

Interview findings indicated significant barriers to collection of accurate gender identity information in HIV surveillance data including lack of standardized data systems for collecting gender identity; difficulty obtaining gender identity information from HIV testing sites, laboratories, and medical databases; and need for enhanced cultural sensitivity and gender identity knowledge at all levels of the data collection process. Recommendations from the state HIV surveillance staff, leaders, and epidemiologists are included in the findings.

Effective, well-coordinated strategies are needed to improve gender identity information in HIV surveillance reporting. Recommendations include standardizing and enhancing data collection strategies, providing cultural sensitivity training at all levels of HIV testing/reporting, and developing formal guidance and providing technical assistance that targets and educates laboratories and medical organizations to implement systems of data collection that routinely and safely capture gender identity data.