“I’d Feel Like Someone Was Watchin’ Me… Watching for a Good Reason”: Perceptions of Data Privacy, Access, and Sharing in the Context of Real-Time PrEP Adherence Monitoring Among HIV-Negative MSM with Substance Use
Author ORCID iD
https://orcid.org/0000-0002-5718-3982
Document Type
Article
Publication Date
2022
Abstract
Once-daily oral tenofovir/emtricitabine is highly effective as pre-exposure prophylaxis (PrEP) against HIV but is dependent on adherence, which may be challenging for men who have sex with men (MSM) and use substances. Digital pill systems (DPS) permit the direct, real-time measurement of adherence, though user perceptions of data privacy in this context are unknown. Thirty prospective DPS users – HIV-negative MSM with non-alcohol substance use – completed in-depth qualitative interviews exploring preferences around privacy, access, and sharing of DPS adherence data. Participants discussed some concerns about the impact of DPS use on personal privacy, and emphasized the need for robust data protections in the technology. Participants were interested in having on-demand access to their adherence data, and were most willing to share data with primary care providers and long-term relationship partners. Future investigations exploring bioethical frameworks around DPS use are warranted, and user preferences should inform best practices for protecting DPS data.
Publication Title
AIDS and Behavior
Recommended Citation
Georgia Goodman, Anna Kikut, Maria J. Bustamante, Lizette Mendez, Yassir Mohamed, Carmel Shachar, I. Glenn Cohen, Sara Gerke, Edward W. Boyer, Rochelle K. Rosen, Kenneth Mayer, Conall O'Cleirigh, and Peter Chai, “I’d Feel Like Someone Was Watchin’ Me… Watching for a Good Reason”: Perceptions of Data Privacy, Access, and Sharing in the Context of Real-Time PrEP Adherence Monitoring Among HIV-Negative MSM with Substance Use, 26 AIDS and Behavior 2981 (2022).