Important Milestone Reached: Initial HiGHmed Privacy Concept Approved by TMF Data Protection Working Group

Currently, making clinical and research data accessible and re-usable for advanced data analyses in a cross-enterprise environment poses significant challenges. In addition to technical issues, ethical and privacy concerns have to be taken into account when setting up a technical infrastructure.

HiGHmed puts privacy and patients’ right of self-determination at the forefront of all project activities and efforts. Nowadays, new and courageous protection models are needed, as complex, publicly available data sets always bear the risk of re-identification. Consequently, in the initial networking and development phase (2018-2021) of the project all medical data remains securely stored in the local medical data integration centers (MeDICs). Medical data may only be saved and used in HiGHmed if the individual gives his/her informed consent. Consent can be revoked at any time. Access to the data is regulated unambiguously and in a transparent and traceable process.

Recently, the HiGHmed Data Security and Privacy Working Group have reached an important milestone for shaping the local MeDICs’ privacy concepts in the future: The group succeeded in delivering the overarching HiGHmed privacy concept describing the current project phase as well as future challenges. The TMF Data Protection Working Group approved this privacy concept in a dedicated meeting on November 13th, 2019 in Berlin. The HiGHmed Data Security and Privacy Working Group leaders Prof. Dr Ulrich Sax (University Medicine Göttingen) and Hauke Hund (Heilbronn University) happily received the TMF vote after their Berlin presentation.

The TMF Data Protection Working Group in Berlin signed off the TMF Generic Privacy Concepts with data protection officers at state and federal level in order to accelerate the approval processes.

From l2r: Hauke Hund, HiGHmed partner Heilbronn University and co-leader of the HiGHmed Data Security and Privacy work package; Prof. Dr Ulrich Sax, HiGHmed partner University Medicine Göttingen and leader of the HiGHmed Data Security and Privacy work package; Prof. Dr Klaus Pommering, Head of the Working Group Data Protection at the TMF, umbrella organization for networked medical research in Germany; Jürgen Eils, HiGHmed partner University Hospital Heidelberg; Dr Josef Schepers, HiGHmed partner Charité – Universitätsmedizin Berlin and Berlin Institute of Health after the TMF Data Protection Working Group meeting on November 13th in Berlin.

For more information on the activities of the HiGHmed Data Security and Privacy Working Group please contact:
Prof. Dr Ulrich Sax, University Medicine Göttingen
Email: Ulrich.Sax@med.uni-goettingen.de

For general information on HiGHmed, please use the following contacts.