A concept for a federated research data infrastructure for personal health data
Access to detailed information on a large and unselected number of patients is pivotal to advance patient stratification, to support personalized medicine, find new therapy options and to improve patient care. In Germany, there exist a high number of different health data resources such as clinical, epidemiological or public health studies distributed over various research institutions and public authorities.
Access to and use of this data is restricted by data protection laws due to the legitimate interests of the study subjects. Besides these important restrictions, access to research data is still hampered mainly by missing interoperability of data types, poor data linkage opportunities, and the lack of protected data sharing environments and settings, which would allow automatic access to data.
In the interest of improving population health through better and broader data re-use in Germany, we map out a national research strategy focusing on personal health data.
Main objectives of NFDI4Health are:
(1) the implementation of a federated health data infrastructure in Germany for searching and accessing health care data and health databases,
(2) to enhance data sharing and data linkage of personal health data in compliance with privacy regulations and ethics principles,
(3) to enable the development and deployment of new consent management mechanisms and augmented data access services, and
(4) to foster data sharing and cooperation between clinical research, epidemiological and public health communities.