BioMed Alliance, as part of a multi-stakeholder group consisting of 32 European patient organisations, medical associations, research organisations, data collaborations and industry associations met EU officials, including MEP Tomislav Sokol, Co-Rapporteur, as well as several permanent representations that will hold upcoming Presidencies of the Council of the European Union, to discuss how the European Health Data Space (EHDS) can facilitate health research and innovation to create tangible benefits for patients in the EU. In line with their consensus statement of June 2023, the multi-stakeholder group expressed concern about the possible scope of an opt-out mechanism, the challenges of ensuring inclusivity and equity, and related operational challenges. The group reiterated its concern that the risk posed by an opt-out or opt-in is that it may amplify rather than help to correct data bias – exaggerating inequalities and disparities through incorrect inferences from the data, leading to health strategies and treatments that are poorly suited to certain groups.
Report
11 June 2023