The European Health Data Space Give Patients Real Control Over Their Data

The aims of the European Commission’s European Health Data Space (EHDS) are twofold: to improve people’s access to, and control over their personal electronic health data in the context of healthcare (primary use) and to better use health data for other purposes that would benefit society, such
as research, policy-making and innovation (secondary use).
Unfortunately, the attainment of these goals is under threat. Instead, there is a risk that patients will lose control over their health data, that their data are exploited and that people, particularly those in vulnerable situations, will be negatively impacted. However, the EHDS legislation does provide an opportunity for Member States to introduce stronger protections of patients’ rights. Concrete measures are sorely needed to ensure patients are truly in control of their data.
This brief describes scenarios to demonstrate the consequences
of failure to act on specific
policy choices for the rights and health of patients, and provides recommendations for national governments to give patients control over their own health data