HealthData@EU pilot project - Deliverable 4.1 Recommendations for establishing Health data access bodies

The D4.1 Recommendations Report from work package 4 of the HealthData@EU Pilot project provides actionable recommendations for establishing Health Data Access Bodies (HDABs) across EU Member States. The report aims to support effective implementation, ensure compliance with the EHDS Regulation, and promote interoperability. It draws on insights from packages 5-9 of the Pilot, integrating feedback from stakeholders.

Key recommendations include:

• Hiring skilled personnel.

• Deploying national IT components.

• Implementing a standardized metadata catalogue using HealthDCAT-AP.

• Utilizing common data access forms to streamline data requests.

Specifically, the recommendations emphasize the need for Member States to deploy robust national IT components, including Cross-border Engines, the National Connector, and the Cross-border Gateway, to enable seamless integration with the HealthData@EU infrastructure. They also highlight the development of HealthDCAT-AP, a standardized descriptive metadata model, as a significant achievement of the Pilot, with Member States recommended to implement National Dataset Catalogues compliant with HealthDCAT-AP. Adopting the common data application forms developed in the Pilot is recommended to harmonize the processing of data permit applications and requests across borders. Additionally, recommendations about organization and governance are added to establish comprehensive HDABs.

The report acknowledges the need for further efforts beyond the Pilot to ensure the sustainability of its outputs and highlights the importance of balancing technological and non-technological factors in the implementation process. It also emphasizes multidisciplinary efforts to manage diverse data types and the potential for future integration with other data spaces to drive innovation in healthcare and research. Public trust and transparent communication are deemed crucial for the success of the EHDS. By focusing on these key elements, HDABs can create a sustainable framework to support the long-term success of the EHDS, fostering a collaborative, efficient, and trustworthy health data ecosystem across Europe.