PPM1 Development of a DATA Infrastructure That Combines Top-Tier Danish Registry DATA with Real-World DATA, to Create More Complete Personalized Medical DATA, While Allowing for Commercialization While Upholding Gdpr Legislation

Abstract

Creating a patient-centric health data infrastructure that successfully combines superior Danish registry data with data from patients’ apps and wearables. Thus, generating personalized medical data, while upholding strict ethical and GDPR guidelines, creating value for patients through targeted medical solutions, improved ability for commercial leverage and accessible health data overview. The Hedax and OSCAR projects bring together the relevant Danish consortiums to collaborate on bridging the political and technical gap between the personal app & wearable data, Danish health data, and GDPR. The project partners have developed the technology to process Danish health registry data, e.g. economic, statistical, geo-demographic data, private data (with consent from the user) from smart devices, medical devices, insurance claim data, pseudonymized CPR registry data, and genome data. The data sources are connected to a Personal Data Store (PDS) and a virtual platform for a GDPR compliant, encrypted analysis. The outcome is a patient-centric health data infrastructure that is GDPR compliant while commercializing the extracted combination of high-quality Danish health registry data and real-world data. The result will be enhanced patient health data insights, integrated clinical pathways, personalized medicine for citizens, access to 3rd party data for healthcare providers, a GDPR data hotel, sandbox, and enhanced access to enriched health data for clinical trials and research-based innovation. Hedax & OSCAR’s new health data infrastructure that combines registry data with apps & wearables paves the way for a level of medical data integration yet to be seen on the world market and promises a wealth of societal and commercial benefits.