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“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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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.

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Acknowledgements

We would like to acknowledge etectRx for manufacturing and providing the DPS used in this study, the ID-Cap™ System developed by etectRx.

Funding

This work was supported by Gilead Sciences under ISR 17-1018. PRC is funded by NIH K23DA044874, R44DA051106 and research funding from Gilead Sciences (ISR-17-1018), Hans and Mavis Psychosocial Foundation and e-ink corporation, KM and CO are funded by NIAID P30AI060354, EWB and RKR are funded by NIH R01DA047236. CS, SG, and IGC were supported by a grant from the Collaborative Research Program for Biomedical Innovation Law, a scientifically independent collaborative research program supported by a Novo Nordisk Foundation grant (NNF17SA0027784).

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Authors and Affiliations

  1. The Fenway Institute, Fenway Health, Boston, MA, USA

    Georgia R. Goodman, Maria J. Bustamante, Lizette Mendez, Yassir Mohamed, Edward W. Boyer, Kenneth H. Mayer, Conall O’Cleirigh & Peter R. Chai MD, MMS

  2. Department of Emergency Medicine, Brigham and Women’s Hospital, Boston, MA, USA

    Georgia R. Goodman, Edward W. Boyer & Peter R. Chai MD, MMS

  3. Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Georgia R. Goodman, Anna Kikut & Conall O’Cleirigh

  4. The Petrie Flom Center for Health Law Policy, Biotechnology and Bioethics, Harvard Law School, Boston, MA, USA

    Carmel Shachar, I. Glenn Cohen & Sara Gerke

  5. Penn State Dickinson Law, Carlisle, PA, USA

    Sara Gerke

  6. Center for Behavioral and Preventive Medicine, The Miriam Hospital, Providence, RI, USA

    Rochelle K. Rosen

  7. Department of Behavioral and Social Sciences, Brown University School of Public Health, Providence, RI, USA

    Rochelle K. Rosen

  8. Infectious Diseases, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA

    Kenneth H. Mayer

  9. The Koch Institute for Integrated Cancer Research, Massachusetts Institute of Technology, Boston, MA, USA

    Peter R. Chai MD, MMS

  10. Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA, USA

    Peter R. Chai MD, MMS

Authors
  1. Georgia R. Goodman
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  2. Anna Kikut
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  3. Maria J. Bustamante
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  4. Lizette Mendez
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  5. Yassir Mohamed
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  6. Carmel Shachar
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  7. I. Glenn Cohen
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  8. Sara Gerke
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  13. Peter R. Chai MD, MMS
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Contributions

Peter R. Chai was the principal investigator and was responsible for the study conception and design. Conall O’Cleirigh, Kenneth H. Mayer, Rochelle K. Rosen, and Edward W. Boyer contributed to the study conception and design. Georgia R. Goodman, Maria J. Bustamante, and Yassir Mohamed contributed to the study methodology, data collection, and data management. Georgia R. Goodman, Maria J. Bustamante, Yassir Mohamed, and Lizette Mendez conducted the qualitative analyses, with oversight from Peter R. Chai and Rochelle K. Rosen. Carmel Shachar, I. Glenn Cohen, and Sara Gerke contributed subject matter and field expertise throughout the process of manuscript preparation. Georgia R. Goodman, Peter R. Chai, and Anna Kikut drafted the manuscript, with contributions and editing from all authors. All authors reviewed and approved the final manuscript.

Corresponding author

Correspondence to Peter R. Chai MD, MMS.

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Conflicts of Interest/Competing Interests

Glenn Cohen serves as a bioethics consultant to Otsuka on its Abilify MyCite product. The other authors have no relevant financial or non-financial interests to disclose.

Ethics Approval

Approval was obtained from the Fenway Health Institutional Review Board (IRB). The procedures used in this study were in accordance with the Declaration of Helsinki.

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Informed consent was obtained from all participants in this study.

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Goodman, G.R., Kikut, A., Bustamante, M.J. et al. “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. AIDS Behav 26, 2981–2993 (2022). https://doi.org/10.1007/s10461-022-03614-8

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