Intelligent ecosystem to improve
the governance, the sharing,

and the re-use of health data for rare cancers


November 17, 2023

Newsletter #2


the IDEA4RC project has just entered its second year. In this issue we take a look at what we have accomplished during the first year and at the challenges we are taking up now. These challenges will be discussed in person by consortium members on 22 and 23 November in Madrid during the third plenary meeting.

If you missed the first issue, where we introduced the project, its motivations and objectives, you can read it here.

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Wrapping-up the first year of IDEA4RC

During the first year, the reference architecture of the IDEA4RC data ecosystem has been designed, after a thorough review of the privacy and security requirements imposed by regulations on health data sharing in the EU and of the users’ stories.

Rare cancers researchers have identified a number of questions that they wish to address with the data that IDEA4RC will provide, and this led to the identification of a set of relevant variables that clinical centers should contribute with.

The logical organization of these variables, the so-called common data model, has been defined and the variables have been mapped to widely adopted health data standards to maximize interoperability.

The social scientists involved in the consortium have also identified and weighed the expectations of the different stakeholders and potential users of IDEA4RC and formulated possible implementation scenarios that should inform the development work since the early stages.

Now we are ready to start the system development phase with the objective of running simple tests with synthetic data by the end of this second year.

In parallel, we are starting to work on the Natural Language Processing models that will extract relevant information from unstructured data, such as clinicians notes and pathology reports. The first step will be the annotation of texts available in the clinical centers, following the annotation guidelines based on the IDEA4RC common data model.

The third plenary meeting that will take place in Madrid on 22 and 23 November will be the occasion to kick-off the development and deployment phases, and to discuss the progresses of NLP activities. At the end of the plenary meeting, participants will be invited to take part in the second co-creation workshop, organized by the researchers of the University of Utrecht.

Meetings, results and updates

IDEA4RC consortium will gather in Madrid on 22 and 23 November for the third plenary meeting. The meeting will be held at the Universidad Politécnica de Madrid, you can read the agenda here.

The scenario validation workshop will take place at the end of the plenary meeting on 23 November, 11.30-13.30. It will validate the three implementation scenarios that emerged from the first co-creation workshop and the stakeholders’ interviews conducted by University of Utrecht researchers. You can find the agenda of the second co-creation workshop here.

At the end of August, IDEA4RC finalized four new deliverables that sum up much of the work done during the first year. At the links below you can find a short summary for each deliverable.

  • Data ecosystem baseline value positions, value analysis, and scenarios (D2.1).
  • Ethical data governance and reuse incentivization approach (D2.3).
  • Data Ecosystem reference architecture (D2.4).
  • Metadata Taxonomy (D2.5).

What’s up in health data sharing and reuse in the EU

  • On 19 October, the EHDS2pilot initiatives led by the French public agency Health Data Hub, organized a stakeholder forum. Beside summing up the results of the first year of the project and presenting the use cases, the event gathered experts in the secondary use of health data. They shared their experiences and provided advice. The key insights from the meeting can be read here. A video recording of the event is also available at the same link.
  • The negotiations on the proposal for the European Health Data Space are going on and they are supposed to end in one year from now. EURACTIV talked with Tomislav Sokol, member of the European Parliament and co-rapporteur of the file. You can listen to the interview here.
  • The TEHDAS project ended in July this year and SITRA, the Finnish Innovation Fund that led TEHDAS, has been appointed to lead a new project of 29 countries with the objective of preparing for the reuse of health data as proposed in the EHDS. The new project will start in 2024.


That’s all for this issue. See you in a month with the key insights from the plenary meeting in Madrid!

THE IDEA4RC consortium