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Results of the 38th meeting of the German Data Forum: Health Data, Big Data, and Accreditation Criteria for Research Data Centers

The German Data Forum’s 38th meeting took place on 17 April 2014 in Berlin. A range of issues regarding the further development of the research data infrastructure in Germany were on the agenda including health data, big data, and accreditation criteria for research data centers.

For 10 years now, the German Data Forum has been accrediting data centers in order to secure the high-quality of research data access. The accreditation procedure safeguards that data centers work according to minimum standards and binding criteria. Additionally, in the last 5 years, accredited data centers have been obliged to write an annual report evaluating their activities. In order to secure the sustainable development and high quality of the research data infrastructure in Germany, the acreditation criteria and the reporting system are currently being revised. The German Data Forum has agreed upon the fundamentals during its last meeting. A special focus will be on including smaller data centers and projects in their start-up phase.

Moreover, the German Data Forum has initiated the implementation of its strategic agenda:

The German Data Forum is working towards better access to health data for researchers. Many institutions such as hospitals have extensive data from the health system at their disposal that are either completely unavailable to researchers or only at considerable expenditure. The aim is to provide access to these sensitive data – in accordance with data protection regulation – in the same way as the German Pension Insurance and the German Federal Employment Agency. The first step will be a meeting with important stakeholders on possible access paths to health data for researchers.

The German Data Forum has decided to put the big data issue on the agenda. Future activities will focus on data access and quality assurance. The German Data Forum will contact large data producers in order to assess access paths and the potential for analysis in social, behavioural, and economic research. This was decided upon following the 10-year-anniversary event “Big Data – Big Trouble: The Benefit of Big Data for Research, Policy, and Society” which took place on 16. April 2015 in Berlin. About 200 participants discussed chances and risks produced by the Big Data phenomenon.

The German Data Forum plans to strengthen its position on an international level. It is currently monitoring the ongoing legislative process on the EU General Data Protection Regulation. As matters stand, the trilogue between the European Council, the European Parliament, and the European Commission will begin in summer 2015. These interinstitutional negotations will result in a joint draft of the regulation. The German Data Forum is carefully monitoring this process and is coordinating actions of researchers, data providers, and policy makers. By issueing statements on certain aspects of the planned regulation, the German Data Forum calls attention to the needs of empirical researchers and data producers during negotiations. Moreover, a round table debate with important stakeholders is planned.

The German Data Forum’s next meeting will take place on June, 11-12 2015 in Berlin.