From Strategy to Implementation: Bridging EHDS Ambitions and IDERHA’s Vision with Clinical Realities.

The session explored how Europe can move from policy to practice regarding the European Health Data Space (EHDS) and how projects such as IDERHA could leverage its implementation. 

• Prof. Dr. Matthias Rose (Charité Berlin, Head of Clinic of Medical Psychosomatics) underscored both the promise and the practical hurdles of capturing patient-reported data in day-to-day care.
• Prof. Dr. Torsten Blum (HELIOS Klinikum Emil von Behring Berlin, Head of Sleep and Respiratory Medicine) demonstrated how structured documentation tools already improve workflows and facilitate data use for research, but warned that siloed data still limit impact.
• Prof. Dr. Sylvia Thun (Charité Berlin, Head of Core-Unit eHealth and Interoperabily) called interoperability “the make-or-break factor” for the EHDS, stressing that Europe needs rapid, coordinated training and uniform terminology adoption.
• Dr. Rebecca Graebig-Rancourt (Berlin Medical School, project manager and research coordinator) steered a panel debate that converged on one conclusion: Only collaboration can solve current obstacles in data collection and harmonization across Europe.

The main hurdle of European Member States is a system that is still not ready to support hospitals and clinicians in routine, standardized cross-border data sharing. Inconsistent adoption of terminologies and standards keeps clinical data fragmented. Numerous data-protection authorities and the EU’s 24 official languages add human and regulatory complexity that technology alone cannot fix. Despite these challenges, pilot projects show that secondary use of clinical data already works where standards are enforced. Speakers agreed these proofs of concept could be mainstream within five years—provided stakeholders act quickly.

• “Currently we are not ready for the EHDS; with little time left, we need coordinated education for clinicians and IT specialists and a system-wide push for common tools.” — Prof. Dr. Sylvia Thun
• “Different disciplines in medicine hardly talk to each other—let alone to IT—but by learning one another’s language and showing patience, we will succeed.” — Prof. Dr. Matthias Rose
• “We must break up silos, find consensus and collaborate on shared ground for research.” — Prof. Dr. Torsten Blum

Wrapping up, Dr Philip Gribbon (Fraunhofer ITMP), IDERHA project lead, positioned IDERHA as “a bridge between those who ask research questions and those who hold the data,” blending industry and academic expertise, patient input and regulatory insight to create IDERHA as a future-proof, EHDS-aligned infrastructure with a strong legal framework and a “true investment in the future of health data”.

A warm thank-you to our panelists, organizers and all attendees for an energizing exchange—and for helping to turn EHDS and IDERHA ambitions into practice.

We also took the opportunity during the webinar to highlight our survey. We would appreciate to hear your thoughts—take part and share your feedback:

Do you work with health data at a university, hospital, pharma/med-tech firm, insurer or disease registry—and understand how your organization decides when to share those data for secondary purposes? Then your perspective matters. Our short, 12-question survey (≈ 15 minutes) explores the practical “if, when and how” of sharing data for research, innovation, regulation and policymaking. Whether you help set the rules or simply know how they play out, your anonymous input will feed into policy recommendations and flagship projects such as the European Health Data Space—making secondary data use simpler, safer and more rewarding across Europe. 

Add your voice today: https://s2survey.net/iderha2025/  

The survey is open until 4^th of July!