City Research Online

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 atitudes 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. Tey indicated willingness to share digital identity atributes, 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. Tese 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.

Publication Type:	Article
Additional Information:	© Bussone, A., Kasadha, B., Stumpf, S. , Durrant, A., Tariq, S., Gibbs, J., Lloyd, K. and Bird, J | ACM, 2020. This is the author's version of the work. It is posted here for your personal use. Not for redistribution. The definitive Version of Record is published in Proceedings of the ACM on Human-Computer Interaction
Subjects:	H Social Sciences > HN Social history and conditions. Social problems. Social reform H Social Sciences > HV Social pathology. Social and public welfare Q Science > QA Mathematics > QA75 Electronic computers. Computer science R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Departments:	School of Science & Technology > Computer Science > Human Computer Interaction Design
SWORD Depositor:	Symplectic Administrator

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