In May 2022, the European Commission published a proposal for European Health Data Space (EHDS) to regulate the sharing of health data across the European Member states. The aims of EHDS are two-fold, relating to health and research: to improve healthcare across EU by sharing data across its member states; and to establish a legal framework for the re-use of data for research, innovation, policy making and regulation.
As Tamar Sharon argues in her talk, the EHDS will enable easy access to data to BigTech: "innovation" implies industry, and industry includes private corporations such as Apple, Google, IBM and others. How may this happen, and why is it problematic?
The central criteria to access health data for secondary use, outlined in EHDS, are data protection and societal interest. By offering past examples of corporations obtaining public health data, Sharon maintains that there is
"no reason to believe that these two criteria would actually present much of a difficulty for tech actors interested in accessing the EHDS and its treasure trove - high-quality data."
Many of BigTech companies are already heavily invested in healthcare, developing initiatives to tackle illnesses such as Parkinsons' disease. Sharon believes that they can indeed help to improve health, but why does it still make sense worry about them?
The problem is not so much privacy: as a response to this concern, BigTech corporations have started developing "privacy-friendly initiatives" that make them look like better privacy protectors than some governments. Rather, Sharon is more concerned about several other risks, with the greatest one among them being
the rising dependency on private corporations to provide and maintain the critical digital infrastructure which could become indispensable for healthcare provision in the future.
The hypersensitivity regarding privacy has, by now, obscured the new dependencies that are in the making, not only in health, but across all sectors, from education to agriculture. Regulators, then, should focus more on how to collaborate with BigTech to improve health and well-being of people while making sure that each public sector remains autonomous rather than increasingly reliant on private corporations.
See full speech by Tamar Sharon and discussion with Bart de Witte (Hippo AI Foundation):