How Private Individuals Maintain Privacy and Govern Their Own Health Data Cooperative
MIDATA in Switzerland
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Author / Producer
Date
2021-03
Publication Type
Book Chapter
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yes
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Abstract
Diverse and increasingly comprehensive data about our personal lives is collected. When these personal data are linked to health records or linked to other data collected in our environment, such as that collected by state administrations or financial systems, the data have huge potential for public health research and society in general. Precision medicine, including pharmacogenomics, particularly depends on the potential of data linkage. With new capacities to analyze linked data, researchers today can retrieve and assess valuable and clinically relevant information. One way to develop such linked data sets and to make them available for research is through health data cooperatives. An example of such a health data cooperation is MIDATA – a health data cooperative recently established in Switzerland and the main focus of this chapter. In response to concerns about the present health data economy, MIDATA was founded to provide a governance structure for data storage that supports individual’s digital self-determination by allowing MIDATA members to control their own personal data flow and to store such data in a secure environment.
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Publication status
published
Book title
Governing Privacy in Knowledge Commons
Journal / series
Volume
Pages / Article No.
53 - 69
Publisher
Cambridge University Press
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Edition / version
Methods
Software
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Organisational unit
09614 - Vayena, Eftychia / Vayena, Eftychia