• SchusterAnne L RALR0000-0003-4391-1712Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH, USA., Ashley Folta, Juli Bollinger, Gail Geller, Sanjay R Mehta, Susan J Little, Travis Sanchez, Jeremy Sugarman, and BridgesJohn F PJFP0000-0002-3082-5535Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH, USA.Department of Health Behavior and Society, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, .
• Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH, USA.
• Curr Med Res Opin. 2024 Nov 1; 40 (11): 187318831873-1883.

ObjectiveHIV molecular epidemiology (HIV ME) is a tool that aims to improve HIV research, surveillance, and cluster detection and response. HIV ME is a core pillar of the U.S. initiative to End the HIV Epidemic but faces some challenges and criticisms from stakeholders. We sought to assess user experience to identify the current needs for HIV ME.MethodsUsers of HIV ME, including researchers and public health practitioners, were engaged via a structured survey. Needs were assessed via open-ended questions about HIV ME. Data were analyzed using reflexive thematic analysis; the concordance of results was assessed semi-quantitatively.ResultsOf 90 possible HIV-ME end-users, 57 completed the survey (response rate = 63%), which included users engaged in research (n = 29) and public health (n = 28). Respondents identified current imperatives, challenges, and strategies to improve HIV ME. Imperatives included characterization of the virus, identification of HIV hotspots, and tailoring of HIV interventions. Challenges encompassed technological issues, ethical concerns, and implementation difficulties. Strategies to improve HIV ME involved improving data access and analysis, enhancing implementation guidance and resources, and fostering community engagement and support. Researchers and public health practitioners prioritized different imperatives, but similarly emphasized the ethical concerns with HIV ME.ConclusionThe imperatives identified by users underscore the necessity of HIV ME, while the challenges highlight the hurdles to be overcome, including ethical concerns which emerged as a shared emphasis across user groups. The strategies outlined offer a roadmap for overcoming these challenges. These insights, drawn from user experience, present a valuable opportunity to inform the development of guidelines for the ethical application of HIV ME in research, surveillance, and cluster detection and response.

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