100th Meeting of the TMF’s Data Protection Workgroup
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In nationwide medical network research, a coherent data protection concept often poses a challenge: researchers are typically faced with the question of how data and samples can be evaluated across regions in a data protection-compliant manner, which legal framework is relevant, and how to meet the requirements and expectations of various data protection supervisory authorities. Against this background, the Data Protection Workgroup of the Technology and Methods Platform for Networked Medical Research (TMF) was founded in 2000 to provide continuous support to researchers in their projects. Today marks the 100th meeting of the Data Protection Workgroup. "Many collaborative research projects have successfully developed their data protection concepts with the support of the workgroup. The workgroup is now the most important national point of contact for data protection concepts in medical network research," explains Prof. Dr. Klaus Pommerening, spokesperson for the Data Protection Workgroup.
Generic Data Protection Concepts Help Researchers Implement Data Protection Concepts More Quickly
For more than 20 years, the TMF’s Data Protection Workgroup has been advising research networks and institutions on the development of data protection concepts, providing opinions, and developing guidelines for researchers. The basis for the consultation is the generic solutions for data protection concepts developed by the workgroup, which were recently recommended for use in medical research by the Conference of Independent Data Protection Authorities of the Federal Government and the States. Concrete solutions can be derived from these concepts and implemented in their projects and infrastructures. TMF members can also present and discuss their concepts in the workgroup and ultimately align them with data protection officers through a vote of the workgroup in an expedited process. "The vote of the Data Protection Workgroup saved me a lot of work and time. As the project leader of a multicenter project involving eight university hospitals, I would have had a lot of coordination effort to merge the votes of eight data protection officers from different federal states into a final concept. The data protection officers recognized our data protection concept without changes based on the vote of the Data Protection Workgroup, for which I am very grateful," explains Achim Hekler, project leader of the Skin Classification Project at the German Cancer Research Center in Heidelberg.
Medical Informatics Initiative: Coordination of Legal Foundations for Data Use Supported
The Medical Informatics Initiative (MII) also used the dialogue and coordination procedure established by the Data Protection Workgroup with the data protection authorities. A nationally uniform model text for patient consent was developed and accepted by the Conference of Independent Data Protection Commissioners of the Federal Government and the States in April 2020. The acceptance of the consent documents enables medical research for the first time to obtain broad consent for the use of clinical data nationwide based on the EU General Data Protection Regulation. With this data, projects for various medical research purposes can be carried out – a milestone for the initiative and the medical research landscape in Germany.
The TMF Mediates Between the Interests of Data Protection and Research
Over the past two decades, the TMF's work has significantly contributed to improving collaboration between data protection and research. The TMF's task has always been to build bridges and demonstrate by example that there are ways for data protection, on the one hand, and medical and epidemiological research, on the other hand, to be implemented as effectively as possible in the spirit of practical concordance. "The TMF thus makes an essential contribution to the success of networked medical research in Germany. Researchers from different disciplines learn from each other in the context of workgroups and develop solutions for collaborative research. Many offerings with high acceptance and visibility, such as the generic TMF’s Data Protection Guide, are developed jointly," concludes Prof. Dr. Michael Krawczak, Chairman of the TMF Board.
Press Contact
Wiebke Lesch, Sophie Haderer
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About the TMF
The TMF is the umbrella organization for collaborative medical research in Germany. It serves as a platform for interdisciplinary exchange and cross-project and cross-location collaboration, with the aim of jointly identifying and solving the organizational, legal, ethical, and technological problems of modern medical research. The solutions range from expert opinions, generic concepts, and IT applications to checklists, guidelines, training, and consulting services. TMF makes these solutions available free of charge and to the public.
