The proposed budget for the European Health Data Space (EHDS) is “misaligned” and “falls short” of what is needed to successfully implement the initiative, according to a new report from the European Institute of Innovation and Technology (EIT) Health Think Tank.
The authors say Member States must increase their commitment to fund EHDS initiatives to maximise its impact on healthcare outcomes and innovation.
The EHDS has been designed to deliver an EU-wide system for sharing citizens’ health data to improve care across borders. The aim to make it possible for an Irish tourist to pick up a prescription in a German pharmacy, or for doctors to access the health information of a Belgian patient undergoing treatment in Italy.
The EC hopes it will also boost opportunities for research and innovation by supplying academics and industry with valuable health data.
The project picked up speed in March when the Council of the EU and the European Parliament reached a provisional agreement on new legislation, making it easier to exchange and access health data at EU level.
The proposed regulation requires all electronic health record systems to comply with the specifications of the European EHR exchange format (EEHRxF), ensuring that they are interoperable at EU level.
However, the new Implementing the European Health Data Space across Europe report, released recently at the EIT Health Summit in Rotterdam, found that the budget allocated by the European Commission (EC) to implement the EHDS was “significantly misaligned with the ambition level of the proposed regulation”.
The report provides insights for those involved in the implementation of EHDS initiatives, including EU and national policymakers, health data access bodies, and healthcare providers.
It sets out a number of recommendations on six key issues: governance; capacity and skills; resources and funding; data quality; the relationship between primary and secondary data; and the creation of a data-driven culture in healthcare.
It recommends that EU policymakers should “provide adequate EU funding and better coordination of funding allocation for projects through which healthcare providers can invest in infrastructure for the EHDS and an integrated European implementation”.
It also recommendeded that financial incentives be created for EU Member States and regions to encourage collaboration and resource pooling on projects of common interest. In addition to EU and national public funds, it suggests that healthcare payers and the life sciences industry should contribute to the cost of implementation in light of the expected gains from access to data.
It also points out that, although most Member States have shown political will to implement the EHDS, the lack of a culture of data-sharing among health system actors as well as low awareness and control of health data among citizens could hinder the collective effort necessary to realise the goals in practice.
The report calls for “meaningful patient and civil society input and representation” at the EU-level data governance bodies, including the EHDS Board, and highlights the need to build the right capacity for data gathering in healthcare workflows, automating primary data collection processes as much as possible with technology solutions.
There will also be a need to upskill current staff and develop career pathways promoting skill acquisition and development for data management and data science.
