Abstract
The health care sector can benefit considerably from developments in digital technology. Consequently, eHealth applications are rapidly increasing in number and sophistication. For successful development and implementation of eHealth, it is paramount to guarantee the privacy and safety of patients and their collected data. At the same time, anonymized data that are collected through eHealth could be used in the development of innovative and personalized diagnostic, prognostic, and treatment tools. To address the needs of researchers, health care providers, and eHealth developers for more information and practical tools to handle privacy and legal matters in eHealth, the Dutch national Digital Society Research Programme organized the “Mind Your Data: Privacy and Legal Matters in eHealth” conference. In this paper, we share the key take home messages from the conference based on the following five tradeoffs: (1) privacy versus independence, (2) informed consent versus convenience, (3) clinical research versus clinical routine data, (4) responsibility and standardization, and (5) privacy versus solidarity.
Highlights
The Association of Universities in the Netherlands (VSNU) has brought together scientists from all 14 universities in the Netherlands to address the pressing questions raised by the emergence of a digital society
The Digital Society Health & Well-Being team organized a conference on September 26, 2019 titled “Mind Your Data: Privacy and Legal Matters in eHealth” with the aim to learn from each other’s approaches to tackle privacy and legal matters in the development of eHealth
Marie-José Bonthuis is an external privacy lawyer who is connected to the Medical Biobank Lifelines and to the University Medical Center Groningen
Summary
Dr Bonthuis presented a talk titled “Overview of data protection principles in research: bringing practice and legislation together.” Niels Chavannes is a professor of Public Health and Primary Care at Leiden University Medical Centre, a general practitioner, and the founder of the National eHealth living lab (NeLL).
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