Data Sovereignty in Data Donation Cycles - Requirements and Enabling Technologies for the Data-driven Development of Health Applications

Abstract

Personalized healthcare is expected to increase the efficiency and the effectiveness of health services using different kinds of algorithms on existing data. This approach is currently confronted with the lack of digital data and the desire for self-determined personal data handling. However, the issue of health data donation is on the political agenda of some governments. Within this work, a knowledge base will be created by reviewing existing approaches and technologies regarding this topic with the focus on chronic diseases. A list of requirements will be derived from which we conceptualize a data donation cycle to demonstrate the challenges and opportunities of health data sovereignty and its future possibilities concerning data-driven health application development. By linking the requirements to technological approaches, the baseline for future open ecosystems will be presented.