Trust perspective on “MyData” health ecosystem: Citizen-centered data management solution in Finland (Preprint)

BACKGROUND MyData principles for delivering health services aims to utilize citizen-centered data and engage individuals in managing personal health data, evaluating their health conditions, gaining healthcare support, changing their behavior and lifestyle accordingly, and sharing their data across boundaries among individuals, private and public organizations, and research institutions. In this context, the issue of the trust and trustworthiness of institutions involved is becoming more important than in the traditional digital health ecosystems due to the sensitivity of personal health data. OBJECTIVE This study aims to identify factors that influence the MyData ecosystem’s trustworthiness and create appropriate conditions for optimizing the effects of trust and risk on the data sharing perceived by multiple stakeholders to build the trustworthiness of the MyData digital health ecosystem in Finland. METHODS The empirical analysis was primarily based on 30 semi-structured interviews with multiple stakeholders conducted in Finland in November 2021 and February 2022. Iterative workshops from two large-scale Finnish digital healthcare research projects on health data management, artificial intelligence (AI) solutions in future healthcare, and cooperative digital health solutions adoption were also utilized as secondary materials to understand the complex phenomenon of trust in the MyData digital health ecosystem. RESULTS The perceived technological and data trust, institutional trust, and legitimated trust were found to be relevant and important through perceived communication, empowerment, and social influence to build the MyData digital health ecosystem for securing personal health management and sharing. CONCLUSIONS The findings emphasize the critical role trust plays in engaging multiple stakeholders in the MyData health ecosystem and promoting the fair and secondary uses of personal health data in digital health, particularly for preventive healthcare purposes.