NFDI4Health creates innovative procedures and developes services for FAIR health studies - without compromising data protection.
Health data, as collected in clinical trials and epidemiological, as well as public health studies, cannot be freely published, but are valuable datasets whose reuse is of high importance for health research.
NFDI4Health has established a metadata standard and process for the publication of health studies to make health data FAIR:
Based on existing international standards, NFDI4Health has developed a generic information model for describing health-related studies and is in communication with various groups to establish this information model as a national and international standard. Read more. Read more about the implementation guideline of the information model.
This information model also includes information on data sharing possibilities and the corresponding access conditions. Together with a persistent identifier, all (meta)data are thus published in order to speak of a data publication. The data itself remains under the full control of its primary custodians and access can be requested through the established application procedures. Read more about the publication guidelines and the metadata schema.
For health study publication, NFDI4Health has developed the German Central Health Study Hub as an infrastructure. It allows study metadata to be collected via a user-friendly web-based data collection template or application programming interface. The German Central Health Study Hub also provides the ability to publish study documents individually, with the publication of questionnaires and variable catalogues being particularly desirable, as these contain the most detailed information about available data. In this way, health studies with associated data become more discoverable, and researchers can use the information to evaluate the content of data collections and learn about access conditions and requirements for the data. Read more.
Building blocks to enable publication of personal health data as well as training and information material about the publication process are available to the community. Acceptance and usage of publication process are key to a success and hence further close interaction with the community is curial.