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Privacy and Patient Involvement in e-Health Worldwide: An International Analysis

: Appenzeller, Arno

Fulltext urn:nbn:de:0011-n-6383703 (194 KByte PDF)
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Created on: 28.7.2021

Beyerer, Jürgen (Ed.); Zander, Tim (Ed.):
Joint Workshop of Fraunhofer IOSB and Institute for Anthropomatics, Vision and Fusion Laboratory 2020. Proceedings : 27th to the 31st of July 2020, Karlsruhe
Karlsruhe: KIT Scientific Publishing, 2021 (Karlsruher Schriften zur Anthropomatik 51)
ISBN: 978-3-7315-1091-8
DOI: 10.5445/KSP/1000130397
Fraunhofer Institute of Optronics, System Technologies and Image Exploitation and Institute for Anthropomatics, Vision and Fusion Laboratory (Joint Workshop) <2020, Karlsruhe>
Conference Paper, Electronic Publication
Fraunhofer IOSB ()

Nearly every nation is actively working on an e-Health policy or already has one. Personal Health Records (PHR) are considered as one of the key elements in the digitisation of the health sector. While nearly every e-Health agenda mentions privacy and data protection, the real world implementation can differ. A recent example is the planned launch of the German “Elektronische Patientenakte” (ePA), which has only limited data control features for the patient in its first version. This paper gives an overview of how the e-Health policies of the G7nations handle patient involvement and privacy for their PHR projects. With this analysis we show that privacy and patient involvement are crucial for the acceptance of such projects. Finally we propose a data sovereignty framework with guidelines for PHRs to give a user control over his data and establish trust in such systems through broad access, fine granular control, informed decision making, intuitive user experience and comprehensible transparency.