Exploring the European Health Data Space: A Journey Guided by the HealthData@EU Pilot Project
Date: 12 November 2024, 13:30 – 17:00
Location: Lisbon, Portugal
Join us for an insightful pre-conference on the European Health Data Space (EHDS), led by the HealthData@EU pilot project taking place during the pre-conference day of the 17th Edition of the EPH conference. Launched in October 2022, this pilot aims to create a secure, cohesive framework for health data reuse across Europe, supporting research, innovation, and policy-making. Over two years, 17 partners, including national data platforms and research bodies, have been developing an EHDS-inspired infrastructure to enable cross-border health data use.
This event will showcase the HealthData@EU pilot’s progress and insights, demonstrating its potential to unlock health data benefits for researchers, citizens, and policymakers across Europe. The sessions will guide attendees through the journey of using health data for secondary purposes, covering topics such as data discovery, access, preparation, and scaling.
Register
Agenda Overview
- 13:30 – Welcome
Marianne Benderra, European Project Manager, Health Data Hub (France) - 13:40 – Introduction to the EHDS
Jérôme de Barros, Policy Officer, DG Sante C1, European Commission - 13:55 – Data Discovery
Learn about Health DCAT-AP, the new metadata standard facilitating data discoverability in the EHDS framework. Featuring a live demonstration of EU and national health data catalogues.
Speakers: Pascal Derycke (Sciensano), Truls Korsgaard (Norwegian Institute of Public Health), Charles-Andrew Vande Catsyne (Sciensano) - 14:30 – Data Access
A standardised data application form aims to streamline cross-border health data requests in compliance with GDPR and EHDS guidelines.
Speakers: Rosa Juuti (Findata/THL), Emanuel Brađašević and Pero Ivanko (Croatian Institute for Public Health) - 15:30 – Data Preparation
This session delves into data preparation strategies to ensure compliance and usability for cross-border research.
Speakers: Eva Garcia Alvarez and Petr Holub (BBMRI-ERIC), Rachel Bedenis Forster (Norwegian Institute of Public Health) - 16:00 – Scaling up the EHDS
Recommendations for scalable EHDS node models and establishing Health Data Access Bodies (HDABs) across Member States.
Speaker: Katrine Højen Vad (Danish Health Data Authority) - 16:25 – Panel Discussion
Experts discuss the future potential of health data within the EHDS.
Speakers: Dr Mélodie Bernaux (European Commission), Irene Schlünder (BBMRI-ERIC), Elina Drakvik (Sitra)
