Researchers: using data

In order to use data for a clinical research project, researchers must first submit an application to the local MEDIZUKR (probably possible from the end of 2022) or to the German health research data portal Forschungsdatenportal für Gesundheit.

A local application is followed by a two-stage examination by MEDIZUKR as well as by the Datennutzungskommission DUAC (Data-Use-and-Access-Commitee).

If the application receives a positive opinion, the researcher is offered a data use contract. The data requested will be provided after the contract has been signed.

Detailed publication is expected as of Autumn 2022 following the completion of the application process at the RUH, as soon as all organisational requirements have been fulfilled.

Further information on the cross-location use of donated patient data will also follow.

Patient health data originate from various clinical application systems at the individual locations, are partly unstructured and vary in scope, data formats and content. The locations of the data integration centres therefore not only face the technical challenge of merging data from different sources, but also of standardising them to such an extent that they can be analysed in assessable data quality and with justifiable effort, enabling them to be used for various medical research issues. The set of core data Kerndatensatz der Medizininformatik-Initiative was developed for this purpose.

The set of core data determines not only the scope of data, but also the medical content in conformity with international standards.

• Technical standard: HL 7 FHIR
• Terminologies: depending on the module, semantic coding with suitable terminologies (for example, LOINC in the laboratory findings module).