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[Session 6b] A flexible and reliable circle of trust between organisations: best practice implementations

With the support of UNICOM.

To support continuity of care and innovative clinical practice, implementations like artificial intelligence (AI) require large amounts of harmonised data. Increasingly, healthcare organisations also need to establish structural collaborations with other clinical actors/entities and innovative companies in the health sector. In this session, the focus was on three initiatives, with different levels of maturity and various starting points – both public and private, but which are all very much rooted in reality.

Towards a trusted federated network to support Population Health in Europe

Frederic Coppens, ELIXIR, Belgium



Frederik Coppens presented ELIXIR, an intergovernmental organisation that brings together life science resources from across Europe. Frederik is the head of ELIXIR's Belgian node. ELIXIR’s resources include databases, software tools, training materials, cloud storage, and supercomputers. Its goal is to coordinate these resources so that they form a single infrastructure as a permanent structure or framework which makes it easier for scientists to find and share data, exchange expertise, and agree on best practices. Ultimately, the initiative will help them gain new insights into how living organisms work.


The Genomic Data Infrastructure project, coordinated by ELIXIR, will deploy the infrastructure to store and share sensitive data across borders on a permanent basis. Now in 2023, the ELIXIR community is a very lively, engaged community, with more than 13,000 users: it is credited with having built a very high level of trust.

A German Health Data Space in the making

Julien Adelberger and Olga Galanets, IDSA

The International Data Spaces Association (IDSA) is an active promoter and facilitator of Data Spaces in Europe in different strategic sectors. IDSA has an original perspective on data space creation which emphasises a strong connection to business cases and industry.

HEALTH X dataLOFT - Vision of a European Health Data Space

Julien Adelberger, IDSA, Germany



In his presentation, Julien Adelberger highlighted that data lakes (data repositories) can emerge even in the absence of a fully mature public infrastructure. He used the example of the patient-centric DataLOFT platform created in Germany by the Health-X project in compliance with Gaia-X standards. The use cases proposed are targeted at two aspects of women’s health (on prevention and care) and on personalised drug therapy, and bring together both medication data and pharmacogenetics data.



VELES Excellence Hub: Strengthening the South-East Europe Smart Health Regional Excellence and Boosting the Innovation Potential

Olga Galanets, IDSA, Germany



Olga Galanets then presented the VELES project, a European coordination and support action which will run until 2027. VELES aims at establishing a Regional Smart Health Data Space that is targeted at South East European countries with a focus on both cancer and various brain-related conditions.


Overall, through these three presentations, the session showed how trust can be created among organisations involved in building data spaces, and how best practice can be developed.



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