The Health Data Use Act – Potential for better research and healthcare
30.03.2023 15:58
The German Network for Healthcare Research (DNVF) sees great potential for better, more scientifically based healthcare in the planned Health Data Usage Act (GDNG). In the position paper “The Health Data Use Act – Potential for better research and health care”, the DNVF, together with the working group on the collection and use of secondary data (AGENS), formulated requirements and key recommendations for the design of the GDNG. The position paper was co-signed by more than 70 medical-scientific societies and scientific institutes.
The paper shows how, in the spirit of data solidarity, data protection and data benefits can be weighed up by developing clearly definable criteria for both data protection risks and benefit opportunities and anchoring them in the GDNG. It is essential that a uniform legal regulation of data protection and access to research data be established across federal states in the GDNG.
Provide current and complete data
For many research fields, it is essential that the necessary data quality and current and complete data are made available as quickly as possible. The legislature should also provide for the prospective inclusion of care data from private health insurance (PKV) in the Health Research Data Center (FDZ).
Implement early warning systems
In the future, the FDZ Health will play a central role in research with healthcare-related data (VeDa). It is therefore recommended to create optimal framework conditions for the operation of the FDZ Health in the GDNG. The GDNG is intended to enable simple, low-bureaucracy and transparent access for researchers and multiple use of existing data resources. The GDNG should therefore provide for suitable measures to accelerate the availability of GKV routine data in the FDZ Health. An important goal is to create a “fast lane” procedure in which critical events are reported on a daily basis. The increase in respiratory diseases in outpatient care, for example, is an early warning system for future pandemics.
Create transparency through supply and quality monitoring
The paper sees particular potential for improving health care and the health of the population in the linkage of GKV routine data with other VeDa. In addition to primary data, register data and data collected as part of quality assurance, this includes many other data that are created in the administrative processing of institutions. Linkage options should exist regardless of whether the linkage was already planned at the time of data collection and also regardless of the basis on which the data is used. The error-free personal linkage of health data is a basic requirement for the quality of the linked data and thus for scientifically sound health care and quality research.
About this one link go directly to the position paper.