2024
DOI: 10.1145/3637293
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Advocating Values through Meaningful Participation: Introducing a Method to Elicit and Analyze Values for Enriching Data Donation Practices in Healthcare

Peter Sörries,
David Leimstädtner,
Claudia Müller-Birn

Abstract: The secondary use of routinely collected patient data made possible by the broad consent form is seen as a prerequisite for developing data-driven health technologies. In Germany, relevant stakeholder groups (e.g., ethics committees and data protection authorities) specified the broad consent form; however, only one group of patient representatives was consulted, which may indicate asymmetries in engagement. This situation informed our research on medical data donation and emphasized foregrounding patient valu… Show more

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