WiDS Maastricht Conference 2023

Dr. Isabelle de Zegher: Data for the common good, but what about "me"?

Isabelle de Zegher is founder of b!loba, focusing on health data sharing solutions and currently the clinical coordinator of the AIDAVA Horizon Europe project. Isabelle is a Medical Doctor from the University of Louvain and a Master of Sciences in Medical Information Sciences from Stanford University. She has extensive experience in health information technology, data standards, data integration, semantic interoperability, and application of AI in clinical research.



Dr. Isabelle de Zegher introduces a paradigm shift in the way we manage and share health data:
With the emergence of the Data Governance, the Data Act and mainly the European Health Data Space regulations, the focus on health data in Europe has very much been on “Data altruism”, as regulated in the Data Governance Act. While Data altruism is good for the “common good” it does not bring anything to "me" as a patient, and it does not help my physician to develop preventive and personalized medicine for "me".  I will argue that the best way to support the common good, is to start with "me", with my data. By curating my data across multiple messy data sources into an interoperable and reusable longitudinal health record (a personal knowledge graph), I can then share high quality data for the common good while securing quality data for my clinical care. And this enables to replace the “curate health data anew for each clinical research question (and then dump them)” principle by the “curate once, use many times” paradigm. 

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