In a recent statement, the “Interdisciplinary Commission for Pandemic Research” (IKP) of the German Research Foundation (DFG) demands that data for health-related research must be more accessible and easier to link.

>> According to the DFG Commission, the coronavirus pandemic has made visible the deficit in health-related data for research in Germany. In order to be able to answer health-related questions, as in the current situation, experts believe that, on the one hand, access to and linking of data from a variety of different sources is required. This included, for example, data collected in epidemiological or clinical studies or data resulting from the care and treatment of illnesses. In addition, according to the DFG Commission, this data must be supplemented by information such as that collected as part of the population-representative survey programs in the social and economic sciences, mobility data or climate and environmental parameters.
While urgent current questions about the transmission dynamics of the virus, the interaction with other diseases or the recording and evaluation of vaccination reactions in other European countries, such as Denmark, the Netherlands and Great Britain, can already be intensively investigated and answered in science, this is only possible in Germany delayed, with great effort or not possible at all.
In the DFG's opinion, the reason for this limitation is not a lack of data or a lack of methodological requirements. The German research landscape is characterized by a rich repertoire of data from different sources. Accordingly, the currently observed backlog in German research cannot be overcome primarily by collecting additional data sets. The underlying problem is often insufficient access to existing data, and there are significant organizational and legal hurdles in linking them.
For the IKP, a lack of access to and difficulty linking data are the central obstacles that prevent urgently needed progress in health-related research.
However, from the perspective of the Commission for Pandemic Research, there are a variety of starting points on the way to better data access and more data linkage options.
The resulting fields of action shown below would differ in their complexity, but would interact with each other in terms of fact and time. Therefore, a significant improvement in the situation will only be possible through coordinated and integrative progress in all areas of action.” <<

Area of action 1: Systematic consent concept
Educating the population and further developing a systematic consent concept are highly relevant for legally compliant and trust-based use of data from routine care and other process-generated data for research. The electronic patient file offers an important opportunity for a systematic approach. With regard to the experiences in other countries, e.g. B. Denmark and France, an opt-out approach for consent to data collection should be provided here. The implementation and further development of the electronic patient record absolutely requires scientific support.

Field of action 2: Gain an overview and use what is available
The overview of existing data sets and their searchability must be improved in order to avoid incomplete data evaluations or duplication, to identify gaps and to exploit linking potential. National disease registers or epidemiological registers are important data sources. Ensuring regulated access and scientific usability, among other things. through linkability with other data sources, must be taken into account more than before when setting up and expanding registers and when harmonizing data sets. The political side must take appropriate care of this. Scientific support for this process is recommended.

Area of action 3: Central data integration
tion point
In recent years, many efforts have been made to create the methodological and content-related requirements for better data access and data linking through project-based funding initiatives. There are now a number of temporary-financed structures and initiatives that cover certain sub-areas of health-related data.
The Commission for Pandemic Research suggests bringing together and establishing a sustainably financed central data integration point. It must be legally and organizationally able to enable data access and link various data sets in the function of a trust office. Scientists should be able to turn to this point with their data needs. This gives researchers legally secure access to urgently needed data. Successful role models for such a one-stop shop, which will significantly increase the performance of data-based research, exist in Finland and the United Kingdom.

Area of action 4: Creating legal certainty for research
In order to create the conditions and legal certainty for access to and linking health-related data, uniform nationwide regulations are required.
The interpretation of current data protection law must be standardized across countries. This is the absolutely necessary minimum for internationally efficient research, which is still not achieved in Germany.
The Commission for Pandemic Research is therefore convinced of the need for a research data law for Germany that creates comprehensive legal certainty for data-based research.

Area of action 5: Unique identifier
Health-related questions can only be answered by linking different individual personal data. In many other countries in the European Union, this is achieved by using a consistent and uniform reference value, e.g. B. a GDPR-compliant “Unique Identifier”, which enables interoperability of different personal data sets and represents a key element for the harmonization and merging of data sets. Here, the experience of other countries should be used more than before for implementation.