German Data Forum agrees on new cooperation activities and initiatives to improve the research data infrastructure
The German Data Forum (RatSWD) agreed on new cooperation activities and initiatives to improve research data infrastructure at its 43rd meeting on 10/11 November 2016. The RatSWD liaised with the ADM Arbeitskreis Deutscher Markt- und Sozialforschungsinstitute, a business association representing market and social research agencies, and agreed on further steps for monitoring and supporting current developments in data protection law and evaluated activities to gain access to health data for research.
The German Data Forum liaised with the ADM Arbeitskreis Deutscher Markt- und Sozialforschungsinstitute, a business association representing market and social research agencies, which also represents numerous institutes of large German panel surveys. Topics of discussion included the protection of personal data and quality standards for scientific surveys. A cooperation agreement was reached, which will consist of regular workshops and academic conferences together with the Federal Statistical Office.
Following the passage of the European General Data Protection Regulation in May 2016, the German Data Forum has confirmed its strategy for strengthening the position of science in data protection law. The strategy consists of monitoring and supporting national legislation in order to align German national law with EU regulations. The aim is to represent the needs of empirical research into the political process together with partnering institutions. In addition, the German Data Forum is committed to institutionally representing the interests of science and research on the European level. It will expand existing transnational cooperation to this end. The German Data Forum will host a joint workshop with the UK Data Forum in December 2016, which will deal with the legal and research ethical requirements of data access.
The German Data Forum agrees with the recommendations published by the Leibniz Institute for Prevention Research and Epidemiology (BIPS) on the modernization of the legal foundation of empirical research, particularly the the amendment of § 75 SGB X (Social Code, Book 10) proposed in early 2016. Existing legal regulation should be aligned with the conditions of data protection and science today. The German Data Forum agrees that the social and medical data, which are subject to this paragraph of the Social Code, should not go unused due to continuous deletion. On the contrary, the data should be made available on a long-term basis in strict adherence to data protection regulation. Moreover, the linking with other datasets should be enabled. Changing the legal foundation would do justice to the great scientific interest in these data and the great benefit they would have for society.
The experience from the US and the UK underscores that a national mortality database bears great potential for research. The German Data Forum has recommended the establishment of a national mortality register as early as 2010. It supports a recent initiative by Prof. Dr. Dr. med. Mueller (University of Marburg) to pursue the issue. Only a few of the German Länder, including Rhineland-Palatinate, Berlin, Mecklenburg-Western Pomerania, and Bremen, have made initial steps to establish mortality registers. A first, sensible step would be to examine these systematically and draw up a roadmap for national implementation.