Studies on Personal Data Sharing with Peers
Part of the INTUIT research programme was to investigate the sharing of personal health information within the HIV community, with others who also live with this condition (peers). Two linked studies were led by City, University of London, in close collaboration with the Terrence Higgins Trust (THT) to address the following research questions.
- How do people living with HIV understand the terms Trust, Privacy and Security for sharing data with others? How familiar are they with these terms in relation to digital tools?
- What attributes of their digital identity are people living with HIV willing to share with others? What data are especially sensitive and private?
- What Trust, Identity, Privacy and Security (TIPS) considerations do people living with HIV make when sharing data with peers? What are the implications for designing digital technologies for sharing personal health data amongst peers?
Interviews and workshop about data sharing between peers
Researchers at City and THT peer researcher interviewed 26 adults living with HIV to understand concerns about sharing their health information with others also living with HIV. This study focused on gaining a rich understanding of peer-to-peer sharing context and understanding how comfortable people felt sharing, related to TIPS concerns. A follow-up workshop with a smaller sample explored different needs and considerations around using a proposed digital platform for sharing their personal information. Workshop activities included a co-design element, where participants made recommendations for design features.
A. Bussone, B. Kasadha, S. Stumpf, A.C. Durrant, S. Tariq, J. Gibbs, K.C. Lloyd, J. Bird (2020) ‘Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV’. Proceedings of the ACM on Human-Computer Interaction 4 (CSCW2), 1-27. Link to publication
This study is now closed. This video has information about the study and what taking part involved. This study was supported by the THT User Involvement Programme (user.involvement@tht....
Studies on Health Data Sharing Ethics and Values
We have worked with a diverse group of stakeholders to discuss the sharing of personal health data by people with HIV for healthcare provision, and with peer support organisations and...