Examining Trust and Consent Models for Patient-Generated Health Data-sharing and Incentives

Examining Trust and Consent Models for Patient-Generated Health Data-sharing and Incentives
Brian Thoms, Nathan Botts, Evren Eryilmaz
Proceedings of the 58th Hawaii International Conference on System Sciences, 7 January 2025
Abstract
This research explores mitigating factors that influence personal health information sharing as it relates to the adoption of personal health information systems (PHIS). We examine the willingness of online users to share specific types of health data, their general concerns about sharing their health data, and what incentives might exist to motivate health data-sharing in the future. Findings across 336 survey respondents identify an overall sense of concern towards online data-sharing and privacy policies, and yet a willingness to share information, including personal health data, and the potential for health incentives to affect their willingness to share various types of health data. The implications of this research will play an important role as organizations and individuals increasingly adopt personal health information systems. This research also addresses the need for established guidelines and frameworks that address patient privacy as more data is captured and stored within cloud computing environments.