“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
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 m...
| Main Authors: | , , , , , , , , , , , , |
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| Other Authors: | |
| Format: | Article |
| Language: | English |
| Published: |
Springer US
2022
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| Online Access: | https://hdl.handle.net/1721.1/144337 |
| _version_ | 1826188228524244992 |
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| author | Goodman, Georgia R. Kikut, Anna Bustamante, Maria J. Mendez, Lizette Mohamed, Yassir Shachar, Carmel Cohen, I. G. Gerke, Sara Boyer, Edward W. Rosen, Rochelle K. Mayer, Kenneth H. O’Cleirigh, Conall Chai, Peter R. |
| author2 | Koch Institute for Integrative Cancer Research at MIT |
| author_facet | Koch Institute for Integrative Cancer Research at MIT Goodman, Georgia R. Kikut, Anna Bustamante, Maria J. Mendez, Lizette Mohamed, Yassir Shachar, Carmel Cohen, I. G. Gerke, Sara Boyer, Edward W. Rosen, Rochelle K. Mayer, Kenneth H. O’Cleirigh, Conall Chai, Peter R. |
| author_sort | Goodman, Georgia R. |
| collection | MIT |
| 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. |
| first_indexed | 2024-09-23T07:56:30Z |
| format | Article |
| id | mit-1721.1/144337 |
| institution | Massachusetts Institute of Technology |
| language | English |
| last_indexed | 2024-09-23T07:56:30Z |
| publishDate | 2022 |
| publisher | Springer US |
| record_format | dspace |
| spelling | mit-1721.1/1443372023-04-05T05:53:26Z “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 Goodman, Georgia R. Kikut, Anna Bustamante, Maria J. Mendez, Lizette Mohamed, Yassir Shachar, Carmel Cohen, I. G. Gerke, Sara Boyer, Edward W. Rosen, Rochelle K. Mayer, Kenneth H. O’Cleirigh, Conall Chai, Peter R. Koch Institute for Integrative Cancer Research at MIT 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. 2022-08-12T11:58:25Z 2022-08-12T11:58:25Z 2022-03-18 2022-08-12T03:16:58Z Article http://purl.org/eprint/type/JournalArticle https://hdl.handle.net/1721.1/144337 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." en https://doi.org/10.1007/s10461-022-03614-8 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. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature application/pdf Springer US Springer US |
| spellingShingle | Goodman, Georgia R. Kikut, Anna Bustamante, Maria J. Mendez, Lizette Mohamed, Yassir Shachar, Carmel Cohen, I. G. Gerke, Sara Boyer, Edward W. Rosen, Rochelle K. Mayer, Kenneth H. O’Cleirigh, Conall Chai, Peter R. “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 |
| 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 |
| title_full | “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 |
| title_fullStr | “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 |
| title_full_unstemmed | “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 |
| title_short | “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 |
| title_sort | 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 |
| url | https://hdl.handle.net/1721.1/144337 |
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