Creating value from the secondary use of health data: International examples, best practices, and opportunities to scale

Abstract

The secondary use of health data is associated with enormous opportunities to improve healthcare efficiency and the creation of novel data-driven value propositions. Information Systems research has recognized this potential and focuses on that topic from various perspectives, such as data-driven value creation through health analytics or data platform ecosystems to facilitate data sharing. However, with emerging regulatory initiatives, such as the European Health Data Space, rules for the secondary use are changing, with implications for researchers, innovators, and healthcare organizations. The outcomes of data value creation efforts are mainly dependent on available data, with the assurance of high data quality remaining a challenge. To discuss how value can be created from the secondary use of health data, what challenges may arise, and how they can be addressed, a workshop on this topic was organized in November 2023, in which 19 academic researchers and 18 practitioners from 27 organizations participated. This workshop report highlights the challenges of and potential solutions for the secondary use of health data. While current Information Systems research often focuses on utilizing Electronic Health Records, the field could be enriched by understanding the secondary use of health data on an individual, organizational, and societal level.