Published on 24.05.2021 24.05.2021

TEHDAS forum showcases European health data projects

Connecting and engaging with European projects remains a priority for TEHDAS.

The first TEHDAS project forum held online on 18-19 May gathered over 100 European health data specialists representing more than 50 projects and initiatives. The event aimed at bringing together initiatives for dialogue about the European Health Data Space and to ensure that TEHDAS builds on cutting edge knowledge.

We are thrilled such an impressive number of projects came together to discuss the value of sharing health data for secondary use across Europe. We need this cooperation to achieve the ambitious aims set for the European Health Data Space: better healthcare, better research and better health policy making.

PETRONILLE BOGAERT, SCIENTIFIC PROJECT MANAGER AND HEAD OF UNIT AT SCIENSANO, THE TEHDAS PARTNER RESPONSIBLE FOR OUTREACH AND ENGAGEMENT

“I want to thank the participants for making the first project forum a success,” continued Bogaert.

The participants echoed the need for collaboration and took part in the forum to gain a better understanding of the role of TEHDAS in shaping the European Health Data Space and the links between different projects.

“We have heard the message and accepted the challenge. Connecting projects and engaging stakeholders remains a priority for TEHDAS. We want to encourage everyone to keep up the open dialogue.”

SAARA MALKAMÄKI, SPECIALIST AT SITRA AND PART OF THE TEHDAS COORDINATION TEAM

Project pitches inspired discussion on different aspects of health data

The forum covered four aspects of health data corresponding to TEHDAS’ main themes.

During the session on the governance models for the exchange of health data, the Beyond 1 Million Genomes project leaders introduced their experience of the requirements and infrastructure for cross-border sharing of genomic data. The activities of the European Medicines Agency were also presented, including the Data Analytics and RealWorld Interrogation Network project. Finally, the key findings of the “Assessment of the EU Member States’ rules on health data in the light of GDPR” study, which sets the baseline for various activities in TEHDAS, were presented.

The session on data quality and semantic interoperability, included presentations from Systematized Nomenclature of Medicine Clinical Terms, European Health Data and Evidence Network and Rare Diseases Code. The projects examined different standards for the exchange, integration and sharing of health data, such as GA4GH, HL7 FHIR and DCAT2 used to define terminology in their area.

In the discussion about technical interoperability, the participants emphasised that conducting EU-wide research on health data is a socio-technical construct that requires the technical aspects, governance, ethical and legal aspects to be aligned. The participants were presented solutions by in4aha from Proud Engineers, InteropEHRate and the Population Health Information Research Infrastructure.

The last session, which featured pitches by MyData Global, Personal Health Train, Health outcomes observatory H2O and Gravitate Health, focused on the importance of encouraging public involvement in sharing health data, preserving people’s privacy, promoting trust and underlining the value and benefits of sharing data for secondary use.

The discussions will be taken forward in the next project forum in October 2021, where the initial outcomes of TEHDAS will be presented. TEHDAS will organise altogether four project forums.

Meeting agenda

TEHDAS boosts knowledge-based decision-making, sustainable healthcare and smart innovations by developing common practices for the cross-border sharing and wider use of health data in Europe.