The patients’ perspective in the EHDS

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 GesundheitswesenBioCon 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 (Draft)

08:30Registration and welcome for participants
coffee/tea/light breakfast 
09:00

Welcome by the Organisers
Opening remarks and overview of ScanBalt’s 25 years of regional innovation.

 

  • Lars Bauer, 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
    Ira Mießler, Senior Policy Advisor, Referat 511 – Grundsatzfragen neuer Technologien, Sekundärdatennutzung und Ethik im Gesundheitswesen (Key issues relating to new technologies, the use of secondary data and ethics in healthcare), Bundesministerium für Gesundheit (Federal Ministry of Health)
  • N. N.
    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:  Patient Engagement
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

thereafter discussion: 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: N. N.
organised by NDGR // preparing for EHDS Secondary Use at the Regional Level

 

  • Data Integration Center of University Medicine Greifswald
    Prof. Dr. Dagmar Waltemath, University Medicine Greifswald
  • Valo Project (Nordic perspective on data access and sharing)
    Mikael Rinnetmäki, Finnish Innovation Fund Sitra
  • Introducing the Nursing Care Innovation Ecosystem TPG
    Dr. Karsten Schwarz, Central Coordination TPG, Medical Faculty of Martin-Luther-University Halle-Wittenberg

thereafter Panel discussion: Which stakeholders drive EHDS readiness regionally? How can regions collaborate and learn from one another?

13:00Networking Lunch
 
13:45What 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: Jennifer Bonn, CEO Netzwerk Deutsche Gesundheitsregionen e. V. (Association Network of German Health Regions e. V.)
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

thereafter discussion: 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

Final Panel: Preparing for EHDS secondary use
Moderator: Jaanus Pikani, ScanBalt MTÜ
How to Empower Patients and Engage Regions? Key takeaways, policy recommendations, and next actions for European and regional cooperation.

 

16:30

Closing & Next Steps

  • Launch of Working Group “Patient Use Cases – EHDS” 
  • Outline of follow‑up activities and deliverables
 
16:45

Networking with coffee, tea & snacks
 

17:30

End of symposium
 

 

Contact

ThomasKaropka

Referent Gesundheitswirtschaft // KI & Digitale Transformation


+49 175 43 70 029

Facts

// 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

Organised by: