Press release, November 29, 2019
The German Data Forum (RatSWD) supports the passing of the Digital Healthcare Act (Digitale-Versorgung-Gesetz), an important societal milestone in innovative health research. The law includes the establishment of a Research Data Centre (RDC), which will enable independent science to analyse healthcare data in strict compliance with data protection regulations.
The unique collection of current healthcare data, stemming from all of the statutory health insurances (for example, for researching rare diseases or the comprehensiveness and quality of healthcare) can be accessed in the future. The German Data Forum (RatSWD) will continue to closely monitor the implementation of this reform.
The German Data Forum (RatSWD) welcomes the Digital Healthcare Act (DVG), passed by the Bundestag on 7 November 2019 and by the Federal Council on 29 November 2019. The proposed establishment of a Research Data Centre (RDC) will significantly improve the access of healthcare data, and facilitate socially relevant research. An RDC enables data evaluation for independent, scientific research in strict compliance with data protection. Therefore, the suitable data access path is tailored to the respective research projects, and with sensitivity of the data required for the respective research question.
The German Data Forum (RatSWD) has been committed to improving access to healthcare data for several years, and will closely monitor the implementation of this law. As soon as the RDC is established, the German Data Forum (RatSWD) is prepared to start the accreditation process. This accreditation leads to valuable professional networking opportunities with the currently 34 accredited RDCs; they regularly exchange information on best practices in data protection, the re-use of research data, and quality assurance. The German Data Forum (RatSWD) finds the direct transfer of data from statutory health insurances to the RDC- via a trust centre- to be an important step for faster data availability and guaranteeing the privacy of anonymised data. The Act creates a foundation for information and standardised interfaces to be exchanged faster and more easily within the healthcare sector. The more immediate supply of the data should now also result in faster re-use in the RDC; this requires adequate data processing and data supply concept, as well as sufficient staffing and resources for the RDC.
The use of selected healthcare data is currently possible, but only after delays of sometimes several years, as well as unforeseeable organizational preparation, which can be a considerable problem for research projects. Previously, only individually selected research collaborations with statutory health insurances could be reached, and often provided only a geographically or socio-economically focused section of the insured. Now, healthcare research developments and accessibility can improve through the new collective access platform of healthcare data across all statutory health insurances. For example, the health effects of state-specific policy measures, regional differences in healthcare, as well as the quality of healthcare and the risk structures of the statutory health insurance funds, can all be analysed. For some questions, large amounts of cases are required, which can now be accessed through this new platform.
Established in 2004, the German Data Forum (Rat für Sozial- und Wirtschaftsdaten, RatSWD) is an independent council. It advises the German federal government and the federal states (Länder) in matters concerning the research data infrastructure for the empirical social, behavioural, and economic sciences. The German Data Forum (RatSWD) has 16 members. Membership consists of eight elected representatives of the social, behavioural, and economic sciences and eight appointed representatives of Germany’s most important data producers. The German Data Forum (RatSWD) offers a forum for dialogue between researchers and data producers, who jointly issue recommendations and position papers.
The council furthers the development of a research infrastructure that provides researchers with flexible and secure access to a broad range of data. The German Data Forum (RatSWD) has accredited 34 research data centres and fosters their interaction and collaboration.