Sangam: A Confluence of Knowledge Streams

“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

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dc.creator Goodman, Georgia R.
dc.creator Kikut, Anna
dc.creator Bustamante, Maria J.
dc.creator Mendez, Lizette
dc.creator Mohamed, Yassir
dc.creator Shachar, Carmel
dc.creator Cohen, I. G.
dc.creator Gerke, Sara
dc.creator Boyer, Edward W.
dc.creator Rosen, Rochelle K.
dc.creator Mayer, Kenneth H.
dc.creator O’Cleirigh, Conall
dc.creator Chai, Peter R.
dc.date 2022-08-12T11:58:25Z
dc.date 2022-08-12T11:58:25Z
dc.date 2022-03-18
dc.date 2022-08-12T03:16:58Z
dc.date.accessioned 2023-02-17T20:06:51Z
dc.date.available 2023-02-17T20:06:51Z
dc.identifier https://hdl.handle.net/1721.1/144337
dc.identifier Goodman, Georgia R., Kikut, Anna, Bustamante, Maria J., Mendez, Lizette, Mohamed, Yassir et al. 2022. "“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."
dc.identifier.uri http://localhost:8080/xmlui/handle/CUHPOERS/242110
dc.description 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.
dc.format application/pdf
dc.language en
dc.publisher Springer US
dc.relation https://doi.org/10.1007/s10461-022-03614-8
dc.rights Article is made available in accordance with the publisher's policy and may be subject to US copyright law. Please refer to the publisher's site for terms of use.
dc.rights The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature
dc.source Springer US
dc.title “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
dc.type Article
dc.type http://purl.org/eprint/type/JournalArticle


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