Patient-Oriented Data Use
While health data contains highly sensitive information that has to be protected, it is also essential for good medical care, personalised treatment and research. The European General Data Protection Regulation therefore in principle allows the use of health data, but makes it subject to strict conditions.
In practice, however, the effective use of health data still faces numerous obstacles. Among other things, there is much uncertainty about how and to what extent patient data may be used. The fear of making mistakes often leads to an overly restrictive handling of data privacy. As a result, health data is often not used, although this would be legally permissible and in the interest of patient welfare even required.
In this event, the German Ethics Council aims to identify problems and search for solutions. The goal is explicitly not to weaken data privacy, but to improve research conditions to the benefit of patients. In its Opinion “Big Data and Health – Data Sovereignty as the Shaping of Informational Freedom” published in 2017, the German Ethics Council already provided fundamental considerations on this topic.
At the Bioethics Forum, a patient representative and a physician first describe the challenges they face in using health data. An ethicist, a legal expert and an information and communication scientist then comment on these problems. Finally, a panel discussion addresses how data protection law and the research infrastructure can be improved to enable a more effective, patient-oriented use of data in medical research and healthcare.
Please switch to the German version of this website for more information on the programme.