Presenters: Linda Van Horn, Leslie Kelly Hall, Jim St.Clair, Hernando Giraldo
Session host: Moira Schieke
Goal: During this session, our panelists will present short talks and discuss their perspectives on best strategies to generate ecosystem collaborations for patient-centric international health data sharing, with an emphasis on enabling technologies.
Description: International health data sharing has been thrust into the spotlight with the recent pandemic as a critical-need public health initiative. Many leading organizations such as the United Nations and UNESCO, the National Academy of Medicine and the National Institutes of Health in the United States, and the European Union have issued recent reports or statements to promote health data sharing. New laws such as Europe’s GDPR create a legal impetus for health data sharing that protects the rights of each patient to control their own personal health data. However, the majority of health data sharing in the world is not subject to similar regulations. Further, while state-of-the-art decentralised key management and semantic technologies will pave the way for data sharing that protects patients’ ability to control their data, many barriers exist to adoption.
The current international landscape for data sharing thus reflects a complex patchwork of ethical, technical, and business standards and stakeholder incentives. A full grasp of this complexity requires the input of a broad range of domain expertise across clinical medicine, translational research, and public health, as well as technology. Given this complexity, how can we best promote international patient-centric health data sharing in keeping with MyData principles?
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