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Responsible Handling of Patient Data

Congress Session

April 10, 2019

09:30 - 11:00

_Stage C, Hall 4.2

The structured collection, exchange and use of digital health data already holds great potential in the short term for more effective, better patient care and for medical research.

Their findings will also enable completely individual therapies in the medium term and provide new innovative treatment approaches, for example for extremely rare diseases. At the same time, health data are part of people´s highly personal sphere of life. Their routine processing must be measured against the highest data protection and ethical standards.

Patients themselves are at the heart of this debate: As data donors, as sick people with all the associated hopes and fears, and as self-determined individuals who autonomously decide the level of knowledge about their own health.

Therefore, the session asks in conversation with those affected, industry and science under which conditions patients can effectively manage their health data.

  • What basic demands and expectations do patients have of the storage and management of their data?
  • Is there a right not to know? How can unauthorised data access be effectively prevented technically, organisationally and legally?
  • What concrete opportunities does research with care data, for example from the future electronic patient file, offer for human health?
  • How can a data donation be used best and as quickly as possible to improve care, for example in the field of rare diseases?



Sebastian Claudius Semler, Scientific Director, Technology, Methods and Infrastructure for Networked Medical Research (TMF)


Gerlinde Bendzuck, Vorsitzende, Landesvereinigung Selbsthilfe Berlin e.V.


Bernhard Calmer, Director Business Development, Cerner Health Services Deutschland GmbH


Dr Peter Gocke, Head of Digital Transformation Unit, Charité – Universitätsmedizin Berlin


Holger Langhof, Research Fellow, Charité, Berlin Institute of Health (BIH), QUEST- Center for Transforming Biomedical Research