European Union needs reliable and secure access to health data to build strategic autonomy

When planning strategic autonomy in health, policymakers face a problem known in behavioural science as hyperbolic discounting. This means that just as objects far away seem smaller, so do things far into our future. As a result, we are inclined to choose immediate rewards over long-term ones even when they are far more modest. With health this is tangible in the aftermath of the Covid-19 pandemic. We have tended to give greater priority to things that have helped us deal with the pandemic, rather than things that would yield the most health benefits in the long run.

Within the first hundred days, the current European Commission published its data strategy, which highlighted health sector and health data. Even in the midst of pandemic the German presidency of the EU Council strongly committed to building the European health data space in the Council conclusions (2020).

The European Parliament also urged the faster development of the European health data space in its response to the data strategy (2021). But when the time comes to make decisions, have the life-saving actions the EU and the member states have taken during the pandemic worn us out? Or are we ready to strengthen Europe as planned?

The elephant in the room is the interpretation of the Lisbon Treaty.

TFEU 168(5) allows the EU Council and the European Parliament to take measures to protect and improve human health, excluding any harmonisation of the laws and regulations of the member states. Initiatives that come close to that face a hesitant first reaction from European capitals.

Some important papers have recently dealt with this topic. In her policy contribution Anne Bucher (2022) highlights the importance of the European Health Data Space and especially the part of it that deals with health research, regulation and policymaking. Henrique Martins (2021) has contributed a study to European Parliamentary Research Services in which he echoes the same view and among other things proposes a reinforced role for the ECDC in non-communicable diseases and a common health data strategy for the EU. Interestingly, these interventions do not see the current treaties as showstoppers when it comes to deepening the EU co-operation in health.

Europe’s Beating Cancer Plan with its 4-billion euro budget is ambitious. But even such a bold flagship initiative may be in danger of not getting off the ground if health data related to cancer cannot be efficiently used.

The plan states that the health sector is data-rich but information poor and it calls for the European Health Data Space to bring interoperability and sharing across EU borders. It could be said that the fight against cancer is further complicated by 27 different legal interpretations of the GDPR in health data sharing. Understanding that regulating health data is not only a matter of public health (TFEU168(5), but also a question of internal market (TFEU114) could be the push we need to harmonise practices.

For me, strategic autonomy in health and bringing health benefits to EU citizens boils down to making the EU the best location to do research and innovation. It means that the brightest minds stay here or relocate from elsewhere because of the opportunities we offer.

Innovative start-ups and established pharmaceutical companies should also find the EU the place to do business and hire a skilled workforce. And it all starts with data. We need to create a foundation for future generations to work seamlessly throughout Europe. A joint action Towards the European Health Data Space, of which I am a coordinator, is working to meet this goal and provide recommendations for the European Commission and the member states to build an ambitious European Health Data Space.

The legal proposal for the European Health Data Space is due in the coming months. Although European Institutions seem to share the same goal, there is a final hurdle. We often spend the most time on the decisions that matter least. With health data there are many details that the Council of the EU and the European Parliament could debate for years. My hope is that each party keeps their eye on the ball and together scores one for Europe.