The Regulation on the European Health Data Space (EHDS) establishes the legal and technical foundations for the cross-border use of health data across the EU by 2029. The EHDS Regulation defines both the primary use of health data – to support the diagnosis, treatment and care of individuals – and secondary use, where health data is used for purposes such as research, innovation, public health, policy-making or regulation, typically in anonymised or pseudonymised form and not for direct patient care.

Whilst the EHDS aims to harmonise access and governance at EU and Member State level, where activities are already in full swing, health data continues to be generated locally – by providers, regions and citizens themselves.

How patients can become active participants in research and innovation

The symposium “Building the European Health Data Space Together: Empowering Patients, Strengthening Regions” explores how regions, organisations and, above all, patients can become active contributors to research and innovation through the secondary use of the EHDS. With a focus on regional readiness and use cases in the field of rare diseases, participants will exchange strategies, identify needs and shape patient-driven collaboration for the coming years.

The symposium is organised byDIG‑in‑HEALTH - Verein zur Förderung der Digitalisierung im Gesundheitswesen, BioCon Valley^® GmbH, ScanBalt MTÜ andNetzwerk Deutsche GesundheitsRegionen e. V. to mark the 25th anniversary of ScanBalt – and also serves as a supporting event on the eve of the 21. National Conference on Health Economy 2026, which will also take place in Rostock from 11 to 12 June.
By registering for the symposium, participants will receive free access to the National Conference on Health Economy, an exclusive two-day high-level event that also celebrates 25 years of cooperation and innovation in the Baltic Sea region.

// Programme

08:30	Registration and welcome for participants coffee/tea
09:00	Welcome by the Organisers Opening remarks and overview of ScanBalt’s 25 years of regional innovation. Thomas Karopka, BioCon Valley^® GmbH Jaanus Pikani, ScanBalt MTÜ Dr. Lutz Groh, DIG‑in‑HEALTH Prof. Dr. Josef Hilbert, Netzwerk Deutsche Gesundheitsregionen e. V. (Association Network of German Health Regions e. V.)
09:15	Introduction to the EHDS Framework Moderator: Jaanus Pikani, ScanBalt MTÜ Short overview of the regulation, timeline (full secondary use by 2029), and main structures. Implementing the EHDS regulation on national level in Germany Lukas Wrosch, EU & Innovation Policy Manager, gematik GmbH Implementing citizen-centred health data spaces in Europe Dennis Appelt, CEO of European Health Data Alliance e. V. (EHDA e. V.)
09:45	Session 1:  From Patient Orientation to Human-Centric Moderator: Dr. Lutz Groh, DIG-in-HEALTH organised by DIG‑in‑HEALTH // integrating patient perspectives in data‑driven research HCM Patient Platform Europe Emil Tsenov, General Manager at HCM Patient Foundation Patientenstiftung Aktion Niere (Patient Foundation Action for Kidney) Dr. Gabriele Angenendt, Patientenstiftung Aktion Niere Nursing and Caring – Future Prospects from the Perspective of Patients and Nurses Susanne Wied, Nurse Educator (Dipl. equiv. MA), Editor of “Pschyrembel Pflege” (german Nursing Dictionary), Chamber Ambassador of the Nursing Chamber NRW, Member of V-DIG Deutsche Schlaganfallbegleitung Corinna von Büdingen, CEO Deutsche Schlaganfallbegleitung (DSB) gGmbH open discussion on: How to create trust, transparency, and participation in the secondary use of health data.
11:15	Coffee Break & Networking
11:45	Session 2: Regional EHDS‑Readiness Moderator: Jennifer Bonn, CEO Netzwerk Deutsche Gesundheitsregionen e. V. (Association Network of German Health Regions e. V.) organised by NDGR // preparing for EHDS Secondary Use at the Regional Level Data Integration Center of University Medicine Greifswald Dr. Judith Wodke, University Medicine Greifswald Introducing the Nursing Care Innovation Ecosystem TPG Dr. Karsten Schwarz, Central Coordination TPG, Medical Faculty of Martin-Luther-University Halle-Wittenberg open discussion on: Which stakeholders drive EHDS readiness regionally? How can regions collaborate and learn from one another?
13:00	Networking Lunch
13:45	What is European Health? Views of a Futurist Dr. Karlheinz Steinmüller, Scientific Director, Z_punkt GmbH - The Foresight Company
14:00	Session 3: Use Cases for EHDS: Rare Diseases and Nursing Data Moderator: Thomas Karopka, BioCon Valley^® GmbH Rare diseases exemplify the need for cross‑border research and data exchange. Nursing data are important for research but not standardized yet. NUM4Rare – Turning Fragmented Data into Actionable Evidence Dr. Ines Reinecke, Research Lead, International Secondary Use of Health Data at Medizinische Universität Lausitz-Carl Thiem Bridging the Care Continuum with Interoperable Nursing Data Pascal Müller, Digital Hub Care:ecoHUB, Medical Faculty of Martin-Luther-University Halle-Wittenberg Stealth Startup Simon Romanski, CEO and co-founder of Stealth Startup open discussion on: How can secondary use of health data accelerate rare disease research and treatment?
15:15	Coffee Break & Networking
15:30	Session 4: Results & Needs Synthesis Moderator: Dr. Lutz Groh, DIG-in-HEALTH Moderated synthesis session summarising key insights. Patient priorities for EHDS 2029 Regional roles in governance and data access Next steps toward EHDSU2 implementation
16:00	Closing & Next Steps Moderator: Jaanus Pikani, ScanBalt MTÜ und Thomas Karopka, BioCon Valley^® GmbH Launch of Working Group “Patient Use Cases – EHDS” Outline of follow‑up activities and deliverables
16:30	Networking with coffee, tea & snacks
17:00	End of symposium

ThomasKaropka

Referent Gesundheitswirtschaft // KI & Digitale Transformation

tk{at}bcv.org
+49 175 43 70 029

// WHEN: Wednesday, 10 June 2026, 9.00 am – 5.30 pm
// WHERE: Pentahotel Rostock | Schwaansche Str. 6, 18055 Rostock (in-person only)
// WHO: entrepreneurs, researchers and other interested parties

Building the EHDS Together:

The patients’ perspective in the EHDS

How patients can become active participants in research and innovation

// Programme

Contact

Facts

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