First HealthData@EU Pilot Stakeholder Forum – 19 October 2023

The HealthData@EU pilot project invited experts, professionals and decision-makers in the (digital) health sector across Europe to the first stakeholder forum of the project. This was the opportunity to present and discuss the progress of the pilot project testing a first implementation of the European health data space for the secondary use of health data.

The event took place on 19 October 2023, 9h30 – 12h30 (UTC+2), as a hybrid event at PariSanté Campus, Paris, France and online, and gathered more than 300 participants.








Key Insights into the HealthData@EU pilot project

The first session was dedicated to Health Data@EU Pilot Project Progress. Irene ZITTLAU and Lionel GRONDIN provided a glimpse into the first achievement of WP5. The project’s core objective is to establish a robust IT network infrastructure that streamlines data sharing. Substantial progress has been made in the realms of data discovery and data permits. The project is now in the final stages of preparing the Minimum Viable Product (MVP).

Pascal DERYCKE and Truls KORSGAARD delved into the need for a unified language for health data. Their vision is to enhance data findability, accessibility, interoperability, and reusability following the FAIR data principles. To this end, they advocate for the use of DCAT-AP, and the creation of an extension for health data. 

As highlighted by Irene SCHLÜNDER, the HealthData@EU pilot also aims to study and compare the regulatory and ethical intricacies surrounding health data access within EU Member States, research infrastructures and European Agencies. By identifying best practices and harmonizing legal and ethical standards, WP7 aims to establish a common ground essential for the EHDS’s success.

Finally, Petr HOLUB shed light on the critical work of WP8, whose goal is to ensure data exchange standards, controlled vocabularies, and ontologies align with EHDS requirements. They are also actively seeking feedback from multiple sources to ensure that data is shared efficiently and securely, while also maintaining high data quality.

Learning from Cross-Border Use Cases

The event also featured a panel discussion with key participants representing diverse areas of healthcare research and policy, including Anna-Leena VUORINEN, Senior Scientist at the Institute for Molecular Medicine Finland; Daniel MORALES, Senior Expert in Epidemiology at EMA; Luis Alves de Sousa, Expert in General Surveillance and eHealth at ECDC; Charles-Andrew VANDE CATSYNE, Scientist at Sciensano; and Juan ARENAS, Head of Project Management Unit at ELIXIR.

They shared their experiences from various fields, discussing challenges in areas like cardiometabolic diseases, COVID-19 thrombosis, infectious disease surveillance, COVID-19 testing, vaccination, and colorectal cancer. These experts discussed how lessons learned and barriers the EHDS can help overcome, including AI’s role, standards, antimicrobial resistance, handling data from multiple sources, and showcasing research infrastructure’s value. These discussions offered invaluable insights into the future of healthcare and how EHDS can drive progress.

Unlocking Synergies and Opportunities for the Pilot Project in Europe

The closing panel explored the synergies between the pilot project and other European initiatives. The conversation emphasized the need to connect with ongoing work in Europe, promoting collaboration to address health data challenges in the region.

Ander ELUSTONDO JAUREGUI, Policy officer at the European Commission, emphasized the importance of aligning and connecting various projects to maximize their collective impact. The discussion also covered, with an intervention from Markus KALLIOLA, Project Director at Sitra, the timeline and focus of TEHDAS2, highlighting the drafting of guidelines and technical specifications to support the effective implementation of the EHDS. Inclusivity and openness were emphasized, with plans to open each output of the project to public consultations. Petr HOLUB adressed the critical role of European Research Infrastructures in EHDS-related projects. He also stressed the need to simplify data governance. Additionally, the panel explored the opportunities EHDS brings to European Agencies, such as the European Medicines Agency (EMA), enhancing its ability to make informed and timely decisions and ensure a safer and more efficient healthcare landscape in Europe. 

Finally, RWD, commonly understood as “Real-World Data,” was succinctly redefined by Denise Uhumire, Epidemiology/RWE specialist at EMA with just three words: “Rapid, Wide, Deep.”

These insights reflect the collaborative spirit driving the EHDS initiative, with a shared vision of a more interconnected and data-driven healthcare future in Europe among the European Commission, Member States European Research Infrastructure, and European Agencies.

Detailed programme here

Replay of the introduction and first session on the project first results and next steps available here

Replay of the closing panel “Work ahead and interaction with other EU projects” available here.