Following political agreement in March 2024 on the regulation of the European Health Data Space (EHDS), a new article in The Lancet Regional Health – Europe, by Hans Torvald Haugo (ECOO) and Jaisalmer de Frutos Lucas of the European Public Health Alliance (EPHA), considers what the long process of negotiation has meant for trust in the system.
They conclude that transparency, security and equity should be at the bases of the design of the EHDS and at the core of the current conversations. Empowering citizens goes beyond enabling consent, it implies guaranteeing sufficient levels of digital health literacy and facilitating equitable access to healthcare and innovative treatments. The burden of responsibility should not be simply transferred from the institutions to patients. Neither should it fall on healthcare professionals.
Hans Torvald Haugo is General Secretary of ECOO member Norges Optikerforbund (the Norwegian Association of Optometry). He provides support and advice to ECOO on health technology matters and represents ECOO in work with EPHA on the European Health Data Space.
You can access the article online here, and download a PDF here.