Ethics Council: Make better use of health data without weakening data protection
27.04.2023 14:26
On March 22, 2023, the German Ethics Council invited people to a public evening event in the Bioethics Forum series on the topic of “Patient-oriented data use”. According to the Ethics Council, the aim is to have a constructive dialogue about how health data can be made more usable for medical care, the personalization of treatments and for research in accordance with data protection.
Health data is still used far too little for research, even though it is legally permitted and even required in the interest of patient well-being. The German Ethics Council would like to identify the relevant problems and look for solutions. To this end, he invited experts from data protection, politics, ethics, law and technology to discuss concrete practical examples and improvements for the future.
Alena Buyx, Chairwoman of the German Ethics Council, said: “Health data holds enormous potential for patient well-being if only it can be used. For this to be possible, we don’t need less data protection, but better implementation of it.”
At the beginning of the event, the doctor Tobias B. Huber and the patient representative Patrick Schloss reported on the challenges data protection poses to them in practice: For example, it is difficult to establish contact between self-help groups and those affected in accordance with data protection regulations. Another problem: declarations of consent for data use are so long that most patients sign them without reading them or reject them.
The examples were then classified technically: legally by Anne Riechert (Frankfurt UAS), technically and organizationally by Sylvia Thun (Charité) and ethically by Dirk Lanzerath (DRZE). Finally, possible solutions were discussed. Tobias B. Huber and Patrick Schloss talked to the Federal Commissioner for Data Protection and Freedom of Information Ulrich Kelber and the Head of Digital Affairs in the Federal Ministry of Health Susanne Ozegowski.
The German Ethics Council has already presented fundamental considerations on the topic in its 2017 statement “Big Data and Health – Data Sovereignty as a Form of Informational Freedom”.
Volker Lipp, deputy chairman of the German Ethics Council, emphasized: “The use of health data is subject to high requirements because such data contains highly sensitive information that is worthy of protection. At the same time, their use for medical research and care is very important.”
Ursula Klingmüller, member of the German Ethics Council, added: “Better use of data benefits everyone and is also wanted by the vast majority of patients. Unfortunately, data protection in research practice is often handled too restrictively due to uncertainty.”