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27 Feb 2024


EU: Civil society coalition urges negotiators to include safeguards regarding use of health data in European Health Data Space

"Civil society coalition urges EU to put the interests of patients and citizens at the heart of the European Health Data Space", 27 Feb 2024

Seventeen civil society organisations, including patient organisations and trade unions, call upon EU member states and the European Parliament to ensure a number of safeguards regarding the use of patient data and digital health infrastructures are included in the final design of the European Health Data Space (EHDS).

While the signatories welcome the intention of the EHDS to promote health data and patient record sharing within the frame of direct medical treatment of patients (primary use), it is essential to include strong and meaningful safeguards regarding the use of health data for secondary purposes, such as research and product development by companies, and policy-making by governments.

Although the EHDS aims to improve EU citizens’ access to personal health information, patients in fact risk losing control over the sharing of their own medical data due to the absence of a consent requirement. Moreover, with the EHDS proposal, the EU is rolling out the red carpet for Big Tech companies such as Amazon, Google, and Microsoft, by offering them an unprecedented opportunity to use EU citizens’ health data to expand their already problematic monopolistic market power into the health sector...