Isabelle de Zegher, founder of AIDAVA beneficiary b!lo, will be first speaker of the day on “Tech Talk 1: Data for the common good, but what about "me"?”
In this talk, she will introduce a paradigm shift in the way health data are managed and shared. 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 physicians to develop preventive and personalized medicine for "me". Therefore, it can be argued 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), high quality data can be shared for the common good, while securing quality data for my own personal clinical care. This enables the replacement of the “curate health data anew for each clinical research question" (and then dump them)” principle with the “curate once, use many times” paradigm.
You can register for the WiDS Maastricht conference here
Visit the event page.