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Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV

Authors:

Adrian Bussone,

Bakita Kasadha,

Abigail C. Durrant,

Karen C. Lloyd,

Jon BirdAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 4, Issue CSCW2

Article No.: 173, Pages 1 - 27

https://doi.org/10.1145/3415244

Published: 15 October 2020 Publication History

Abstract

Resulting from treatment advances, the Human Immunodeficiency Virus (HIV) is now a long-term condition, and digital solutions are being developed to support people living with HIV in self-management. Sharing their health data with their peers may support self-management, but the trust, identity, privacy and security (TIPS) considerations of people living with HIV remain underexplored. Working with a peer researcher who is expert in the lived experience of HIV, we interviewed 26 people living with HIV in the United Kingdom (UK) to investigate how to design a peer data sharing platform. We also conducted rating activities with participants to capture their attitudes towards sharing personal data. Our mixed methods study showed that participants were highly sophisticated in their understanding of trust and in their requirements for robust privacy and security. They indicated willingness to share digital identity attributes, including gender, age, medical history, health and well-being data, but not details that could reveal their personal identity. Participants called for TIPS measures to foster and to sustain responsible data sharing within their community. These findings can inform the development of trustworthy and secure digital platforms that enable people living with HIV to share data with their peers and provide insights for researchers who wish to facilitate data sharing in other communities with stigmatised health conditions.

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Cited By

Mahalie RAngula PMitonga KOladimeji O(2024)Patterns of availability and accuracy of risk factor data for cardiovascular diseases among people initiated on antiretroviral therapy at selected health facilities in Khomas region, Namibia: a retrospective, cross-sectional, quantitative studyThe Pan African Medical Journal10.11604/pamj.2024.47.33.2534047Online publication date: 2024
https://doi.org/10.11604/pamj.2024.47.33.25340
Chopra SOrii LJuarez KTieanklin NFogarty JMunson S(2024)Menopause Legacies: Designing to Record and Share Experiences of Menopause Across GenerationsProceedings of the ACM on Human-Computer Interaction10.1145/36869758:CSCW2(1-37)Online publication date: 8-Nov-2024
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Thompson LCharitos SBeaumont KBrigden ABird J(2024)Exploring Young Children's Views on Sharing Personal Health Data Between Ages 7-14Proceedings of the 23rd Annual ACM Interaction Design and Children Conference10.1145/3628516.3659397(800-805)Online publication date: 17-Jun-2024
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Index Terms

Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV
1. Human-centered computing
  1. Human computer interaction (HCI)
2. Security and privacy
  1. Human and societal aspects of security and privacy
    1. Social aspects of security and privacy

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 4, Issue CSCW2

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October 2020

2310 pages

EISSN:2573-0142

DOI:10.1145/3430143

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Apple Inc.

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Published: 15 October 2020

Published in PACMHCI Volume 4, Issue CSCW2

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Cited By

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https://doi.org/10.11604/pamj.2024.47.33.25340
Chopra SOrii LJuarez KTieanklin NFogarty JMunson S(2024)Menopause Legacies: Designing to Record and Share Experiences of Menopause Across GenerationsProceedings of the ACM on Human-Computer Interaction10.1145/36869758:CSCW2(1-37)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686975
Thompson LCharitos SBeaumont KBrigden ABird J(2024)Exploring Young Children's Views on Sharing Personal Health Data Between Ages 7-14Proceedings of the 23rd Annual ACM Interaction Design and Children Conference10.1145/3628516.3659397(800-805)Online publication date: 17-Jun-2024
https://dl.acm.org/doi/10.1145/3628516.3659397
Taylor JSimpson ETran ABrubaker JFox SZhu H(2024)Cruising Queer HCI on the DL: A Literature Review of LGBTQ+ People in HCIProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642494(1-21)Online publication date: 11-May-2024
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