How an intelligent data ecosystem could help patients with rare cancers

Treating rare forms of cancer often proves challenging due to the lack of knowledge and resources available, even though these types of cancer affect 20% of all cancer patients.
– This is why international collaboration is so crucial, says Andreas Muth (right in the image), the Swedish lead for IDEA4RC, an EU-funded project aimed at tackling this issue. Preliminary results from the project will be presented at Vitalis 2025.

The four-year IDEA4RC project, which launched in autumn 2022, includes 12 EU countries working together. Now, halfway through the project, they will be showcasing their progress at the Vitalis conference in May next year. Around 50 international specialists involved in the project will come to Gothenburg for both their annual meeting and to present a keynote speech on May 19, followed by a conference track on May 21.
The keynote speakers will include Annalisa Trama (left in the image) from the Istituto Nazionale dei Tumori in Milan and Eugenio Gaeta (middle in the image) from the Universidad Politécnica in Madrid.

A crucial issue

Andreas Muth, senior physician at Sahlgrenska University Hospital and Swedish lead for the project, emphasizes the importance of broadening the conversation.
– This is the first time we’re addressing a larger audience, and we’re hoping to engage healthcare professionals, researchers, decision-makers in health and social care, and especially those responsible for health data registries. Ideally, we’d also like to involve policymakers, he says.
– This is a highly important issue for cancer care, both in Sweden and across Europe.

Helping patients by 2026

The project aims to raise awareness of the scale of the problem and highlight the significant potential if their goals are met.
– We hope to have the new data ecosystem in place by the end of the project in late 2026. By that time, it could be benefiting the first patients by providing healthcare professionals with better decision-making tools, Andreas explains.
He believes the system has the potential to be groundbreaking and could revolutionize how health data is used. However, he cautions that it won’t immediately help all patients with rare cancers:
– Unfortunately, no. There are hundreds of rare cancer types, and together they account for around 20% of all cancer cases. It’s a huge challenge.
– In our pilot project, we’re focusing on gathering information on two groups of rare cancers. However, the system is scalable and can be expanded to include more over time.

More cases lead to better knowledge

One of the biggest challenges in treating rare cancers is the lack of similar cases to learn from. By collaborating across multiple countries, more data can be pooled, creating a larger, more robust dataset.
The ecosystem aims to facilitate the reuse of health-related data from various sources, including medical records and registries, regardless of national borders.
– A key part of the project involves extracting data from all these sources and consolidating it into a decentralized database, where the data remains at its original source—such as hospitals, Andreas explains.

AI breaks down language barriers

The project’s solution relies on federated data analysis, allowing healthcare professionals and researchers to gain insights that were previously out of reach. A large part of the system’s AI capabilities focuses on advanced language models, which gather data from a variety of languages.
– We’ve made great strides and now have the technical solution in place. We’re continually adding data, sorting it, and refining the language models. Hopefully, at Vitalis, we’ll be able to demonstrate the potential of these tools, says Andreas.

Patient privacy in focus at Vitalis

When using health data that is not directly linked to individual patients, patient privacy becomes a major concern.
– Patient privacy is absolutely critical. Patient data is contained within a secure environment at each hospital, and only aggregated data is shared. This ensures no individual can be identified, while still allowing us to learn more about these diseases, Andreas explains.
– But across Europe, there are different views on what qualifies as anonymized data. This will be a key topic at Vitalis—how do we approach this in a European context? What kind of safeguards do we need around aggregated data? We need to move forward in this area, he adds.
However, Andreas does not see any conflict with the European Health Data Space (EHDS) initiative.
– When we developed the project’s requirements, we closely aligned them with the EHDS framework. Our project can actually serve as a potential pilot for the secondary use of health data under the EHDS.

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