European Health Data Space – an opportunity now to grasp the future of data-driven healthcare

Work has already started among policymakers and officials on fine-tuning the European health data space proposed by the European commission in May 2022. The outcomes envisaged from exploiting the constantly growing mass of health data in Europe include: better diagnosis and treatment; improved patient safety and continuity of care; greater healthcare efficiency and enhanced opportunities for research and innovation. This is an ambitious project, and discussions to determine its final form will occupy much of 2023. There are still many aspects of the plan that require clarification, as became apparent during an expert panel on the subject organised by the European Alliance for Personalised Medicine (EAPM) in June 2022. The proposal represents a huge opportunity for enabling better use of the vast amounts of health data that are currently neglected – which could mean improved access for citizens to their own data, and also improved access for researchers and public health authorities to large-scale data sets for secondary use. It also represents another opportunity, as a precedent for more effective EU policy-making on health: it holds out the prospect of creating a more sensitive governance approach responsive to real need, instead of a rigid legislative approach allowing little scope for innovation. But seizing these opportunities will require both the EU and the health sector to adopt a more sophisticated approach to dialogue, with an engaged spirit of co-creation. We believe the potential benefits to Europe and to Europeans make the effort worthwhile. This paper sets out some of the issues that will need to be tackled