This study investigates the values underlying digital trust in health data sharing technology to specify norms and design requirements for technology design, using Value Sensitive Design (VSD) as a guiding framework. The norms and design requirements developed in this study provide a concrete contribution to the design of trust-centered health data sharing technologies.

An online questionnaire survey was conducted with 124 participants, reflecting the views of potential users of health data sharing technology. The respondents were predominantly young adults (aged 25-45), highly educated, and with higher income levels. Additionally, 5 semi-structured expert interviews were conducted to reflect the views and attitudes of organizations involved in collecting and sharing health data. Our analysis shows that potential users of health data sharing technology prioritize values such as transparency, data privacy and control over health data both prior to and following its sharing over other investigated values. The willingness to share health data decreases as the involvement of a data collector becomes more removed from the direct care of a potential technology user. Similarly, the willingness to share health data diminishes as the type of health data is perceived to be more personal to the user.

We conceptualized digital trust in health data sharing as a set of core values that become important when health data is exchanged in a technology-mediated, co-operative relationship characterized by uncertainty. We conclude that digital trust in health data sharing technology is founded on the presence of transparency in data-sharing practices, the assurance of consent, and the provision of user control over health data both prior to and following its sharing. We further conclude that digital trust in health data sharing is shaped by the perception of a balanced exchange of value, which addresses the uncertainty and risks associated with technology-driven health data sharing.