TA6 - Privacy & Data Access in Concert

TA6 “Privacy & Data Access in Concert”

Data protection regulations have to be considered on many levels of the infrastructure developed by NFDI4Health. Moreover, the health data managed by NFDI4Health belong to the so-called special categories of personal data, the processing of which is subject to particularly strict data protection requirements. But nevertheless, data protection law contains a variety of regulatory approaches of data processing for scientific research purposes, which are all aimed at a privileged treatment of such data processing. They include a relaxation of the principle of purpose limitation, legal exceptions from the general prohibition of data processing, the option of so-called broad consent as well as numerous exceptions regarding the rights of the persons concerned.
Data protection and data security are overarching challenges for all consortia which process personal data and thus synergies can be exploited by close coordination with other consortia (e.g. and GHGA and KonsortSWD). Data protection and data security are also cross-sectional issues within NFDI4Health that have to be observed by all TAs. A main focus of TA6 will therefore lie on ensuring that data protection concerns are adequately addressed on all levels of the consortium. This applies in particular to the work in TA3, TA4 (T4.2, T4.5) and TA5.

Furthermore, TA6 will analyse state-of-the-art organizational structures and technical tools. It will develop concepts and solutions required to implement the use cases and adequately protect the various types of data provided by the local data access points (LAPs) (see T3.5). For this, we will subsequently evaluate and roll out governance structures and technical solutions in close collaboration with the MII, NFDI4MED and other consortia. The use cases will serve as test beds for the design and implementation of solutions, in particular T5.4 concerning record linkage.

Contact

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Prof. Dr. Ulrich Sax

TA6-Lead
Measure-Lead: T6.1 “Generic concept and services for data sharing and data protection”
Phone: +49 (0)551 3961529
                                          
University Medical Center Göttingen,
Department of Medical Informatics
Robert-Koch-Straße 40
37075 Göttingen
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Prof. Dr. Benedikt Buchner

TA6-Lead
Measure-Lead: T6.2 “Legal framework, esp. common consent standards and data access procedures”
Phone: +49 (0)421 218-66040
                                          
University of Bremen,
Institute for Information, Health and Medical Law
Universitätsallee GW1
28359 Bremen
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Dr. Harald Kusch

Measure-Lead T6.1 “Generic concept and services for data sharing and data protection”
E-Mail: harald.kusch@med.uni-goettingen.de
Phone: +49 (0)551 3961539
                                          
University Medical Center Göttingen,
Department of Medical Informatics
Robert-Koch-Straße 40
37075 Göttingen
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Prof. Dr. Fabian Prasser

Measure-Lead T6.3 “Development of concepts and methods for privacy risk assessment”
E-Mail: fabian.prasser@charite.de
Phone: +49 (0)30 450 528 781
                                         

Medical Informatics Group
Berlin Institute of Health @ Charité - Universitätsmedizin Berlin
Charitéplatz 1
10117 Berlin

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Prof. Dr. Holger Fröhlich

Measure-Lead T6.4 “Synthetic health data”
Phone: +49 (0)2241 14-4206
                                          
Fraunhofer Institute for Algorithms and Scientific Computing SCAI
Schloss Birlinghoven
53757 Sankt Augustin
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Prof. Dr. Wolfgang Ahrens

Measure-Lead T6.5 “Best practice of record/data linkage with regard to data privacy and data protection requirements”
Phone: +49 (0)421 218-56822
                                          
Leibniz Institute for Prevention Research and Epidemiology – BIPS GmbH
Achterstraße 30
D-28359 Bremen 
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Sebastian C. Semler

Measure-Lead T6.5 “Best practice of record/data linkage with regard to data privacy and data protection requirements”
Phone: +49 (0)30 22 00 24 70
                                          

TMF - Technology, Methods, and Infrastructure for Networked Medical Research
Charlottenstraße 42/Ecke Dorotheenstraße
10117 Berlin