The recording of the conference “Toward a shared European data health infrastructure” is now available

The recording of the conference “Toward a shared European data health infrastructure” is now available

On June 8, ScanBalt and Genopole organised a conference called “Towards a shared European infrastructure for health data, interoperability and recovery”. On the occasion of the French Presidency of the Council of the European Union, Genopole and ScanBalt BioRegion highlighted the latest advances in the European Health Data Area.

Watch the recording of the conference here:


9.30 – 9.35 Introduction: Opening speech David Bodet – Genopole director

Jaanus Pikani – Scanbalt Representative


9.35 – 10.55 Toward a shared data space: Overview on state of the art, ambition, and strategy
9.35 – 09.50 What initial vision for the European health data space, a perspective from TEHDAS.


The TEHDAS initiative started in 2021 is building a common European model to frame the use of “secondary” health data. Why do we need a common European health data space? What are the missions of TEHDAS? What European principles will govern this use? Boundaries and policy barriers to the creation of this space?

Where do we stand, what are the short-, medium- and long-term perspectives?

Markus Kalliola

TEHDAS – Project director, The Finnish innovation fund Sitra.

09.50 – 10.05 The French Strategy toward the EHDS: A perspective from Health Data hub


France is actively participating in the implementation of the EU’s “EU4Health” strategic program adopted in July 2021. It aims to finance the strategic axes of this ambition, including the implementation of the European Health Data Space (EHDS).

What is the French Strategy for the implementation of the Data space? Why do we need a common European health data space? What is your vision for this EHDS? What could be technical and policy barriers to the creation of this space? Where do we currently stand, what are the short-, medium- and long-term perspectives? What were the initial ambitions at the beginning of the presidency? How has the Presidency been able to drive and guide the regulatory and technical work for the creation of this space?

Mario Jendrossek –

Health Data Hub – European projects lead



10.05 – 10.20 Focus on the 1+billion project: European common policy for sharing data infrastructures


Access and management of genomics data is now more of a challenge than generation of the data itself. To enable effective, cross-border access to data, a coordinated, secure, federated environment that enables population-scale genomic, phenotypic and biomolecular data to be accessible across international borders will be required.

What opportunities could represent the EHDS to enable secure and compliant transnational access to controlled-access human genomic data that has been consented for secondary use?

Review of the project’s progress and the process of building an effective common space.


Andres Metspalu –

Estonian Genome Center of the University of Tartu – Head of the Estonian biobank



Panel discussion

10.20 – 10.55

What governance model for European cross-border co-operation in the use of health data?


This round table will focus on the objectives of cross-border exchanges and joint European strategy. Open discussion and exchange of views between institutions in charge of implementing institutional data sharing policies and strategies, addressed under the specific regime of genetic, genomic, and proteomic data.

What institutional (local, national, European) plans and strategies have been put in place to implement genomic data collection infrastructure for primary use and secondary use?

What are the major legal and technical barriers to implementation?

How can transnational convergence between countries with disparate standards and capabilities be achieved?

 What technical means are envisaged to enable the collection, storage, and exchange of this data? 

The potential role and impact of the EHDS on the implementation of collaborative policies.


Moderator: Alexis Biton – Genopole


Markus Kalliola

TEHDAS – Project director, The Finnish innovation fund Sitra.


Andres Metspalu

Estonian Genome Center of the University of Tartu – Head of the Estonian biobank


Mario Jendrossek

Health Data Hub – European projects lead


Inês Amado

International Affairs Manager – Plan France Medecine Genomique



11.05 – 12.25 Practical views and perspectives from citizens, health professionals, researchers, and industry
11.05 – 11.20 Access and use of patient data, to finally achieve the development of therapeutic solutions for rare diseases, innovative therapies.




Hadrien Delattre

AFM Telethon, BDDSaN team – bioinformatician

11.20 – 11.35 Perspective from a clinician, how can health data be used for research purposes in hospitals?


There are numerous advantages of the secondary use of clinical data (ie, data derived from patient care) for research and learning activities. (Clinical data are readily available, no need for any physical intervention or data collection, costs for data aggregation, staff, and materials are low; data can be collected quickly… EHDS will allow large sample sizes to be obtained by aggregating the data from different European sites, benefiting research on rare diseases for instance. On another hand, ethical and regulatory issues arise to protect patients’ rights.

How is the current use of available health data? To what extent can we access European data for clinical purposes? What is the interest in a European data sharing space? What are the prospects? What are the current technical or other obstacles?


Charles Vesteghem,

Department of Hematology, Aalborg University Hospital – Head of Data integration

11.35 – 11.50 Perspective from BIOME Paris, Novartis France digital innovation lab, on European data space as an opportunitiy to scale start-ups accross Europe


The Novartis Biome is a network of innovation hubs, able to use this global platform to democratize access to tech innovation and expertis in digital health.

Biome will introduce user cases related to the current difficulties to duplicate at European level entrepreneurial projects and digital solution, and therefore the need to rely on a common European framework (EHDS) to allow the scale up of high-tech companies at European level.

Timothe Cynober

Novartis, digital & data innovation lab BIOME Paris – Project manager


Panel discussion

11.50 – 12.25

EHDS to frame European health democracy: How to reach a transparent, safe, and trustful primary and secondary use of citizen’s health data.


The COVID-19 pandemic has clearly demonstrated the importance and need for health digital services area. However, the complexity of rules, structures, and processes within and across Member States makes it difficult to access and share health data, especially cross-border. In addition, health systems are now the target of increasing cyberattacks and a relationship of trust between the healthcare community and citizens/patients must be built, to engage society. The EHDS aims to ensure that natural persons in the EU have increased control in practise over their electronic health data. It also aims to ensure a legal framework consisting of trusted EU and Member State governance mechanisms and a secure processing environment. This would allow researchers, innovators, policymakers and regulators at EU and Member State level to access relevant electronic health data to promote better diagnosis, treatment and well-being of natural persons, and lead to better and well- informed policies.


Citizens, health professionals, researchers, and industry:

–        Experience feedback: What is the present condition of the rapport for the sharing and use of health data?

–        How to better involve the patient in the cycle of use of his data, how to raise awareness?

–        What institutional and legal safeguards can be envisaged to resolve the current lack of trust and enable better collaboration?

–        What technical and legal solutions can be found to ensure respect for personal data and improve research?


Moderator: Dr. Laurent Pepin Genopole – Director Business and Partnership department


Jean-François Deleuze 

Centre National Recherche en Génomique Humaine (CNRGH) – Director


Peter Villax

Mediceus – CEO


Sandrine de Montgolfier 

IRIS, Université Paris 13 – Professor of Epistemology and Ethics of Science


Nathalie Jullian

UCB Pharma – Data transparency lead

12.25 – 13.15  Technical/practical recommendation to connect European data infrastructures


12.25 – 12.35


Preamble, and key aspects of Scanbalt joint positioning position paper Jaanus Pikani (Chairman of ScanBalt)


Panel discussion

12.35 – 13.05


Round table: Toward an integrated EU infrastructure ecosystem to allow primary and secondary use of health data for clinical routine, research, and development. The future of health care?

·       Patient-centered health care systems and data altruism for a fair use of data and an improved cross-border use of primary data

·       Semantic and technical interoperability, FAIR data standardization, and accessibility as important key performance indicators

·       Key aspects to consider for cross border sharing and secondary use of the health data

·       Institutionalization of a European Digital and Health Data Board: chances and risks.

Moderator: Jaanus Pikani


Alexia Zurkuhlen (Board member of German Network of Health Regions / CEO of HealthRegion ColoneBonn, Germany)


Christophe Lanneau, (Director research and platformsGenopole, France)


Hille Hinsberg (Product manager,Proud Engineers, Estonia)


Lars Lindsköld (Regional development officer at Vastra Gotaland Region

VGR / Health data expert at AI Sweden/ Board member at Umeå University, Centre for transdisciplinary AI)


James Kennedy (Policy director, European Society of Cardiology)





ScanBalt members: