A portal to federated metadata
The portal will provide researchers with a clear overview of what is available, allow searching for specific data and make access to such data easier when the necessary ethical and legal conditions have been met. The portal will be built using a so-called federated data model. Metadata describing the content of the collections and type of data as well as access policies will be publicly available in the portal, while the underlying data remains at the source, whenever possible.
The first health care data sets in the portal will come from observational studies funded by ZonMw, UMC COVID-19 clinical research data, collaborating top clinical hospitals (STZ), as well as other regional hospitals. However, the portal is open to any health care provider wishing to make their COVID-19 data available for research.
Optimal access to patient data
Medical research on COVID-19 needs much information. There is much information available about risk factors, prognostic factors, the course of the disease. The development of such a knowledge base requires good access to as much patient data as possible.
Clinical data, samples and images from patients may be collected at different times in different medical centers. Datasets are thus often dispersed across medical centers and in different formats. It is crucial to streamline the collection of such health data in a coherent manner, and consider privacy and other ethical, legal and social issues.
Integrating and sharing patient data is considerably easier if standards for collecting, sharing and analyzing data would be available. The GO FAIR Foundation will develop the standards and technologies to support researchers with creating FAIR research outputs.
A Dutch health data portal
The COVID-19 data portal is the first step towards a generic Dutch national health data portal with which researchers can gain access to FAIR research data while adhering to legal conditions and the privacy of patient’s data. The portal will support reusability of crucial datasets across stakeholders in the health field.
For more information and for organizations that would like to submit their data to the portal, please contact the COVID-19 health data portal project leads.