This comment, published in The Lancet Regional Health – Europe, was written in collaboration with EPHA members representing diverse positions around the European Health Data Space (EHDS) and was co-authored by Jaisalmer de Frutos Lucas (EPHA) and Hans Torvald Haugo (ECOO).
The European institutions reached an agreement on the regulation of the EHDS on March 15th, 2024, after months of extended negotiations that prolonged beyond the original deadline. During the trilogues between the European Commission, the European Parliament, and the Council of the European Union, the main point of conflict revolved around consent mechanisms. Although a provisional agreement has been established, this agreement points towards a fragmented solution. Here, we critically argue how fear-based negotiations, rather than strengthening trust, might have hampered it, potentially discouraging citizens from using healthcare services due to a lack of reassurance in data protection.
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