The ninth issue of the IDEA4RC newsletter
Hello,
In this newsletter, we provide an update on the fifth plenary meeting of the IDEA4RC consortium, held at ENG headquarters in Rome on 21-22 November.
If you missed the previous issue, where we interviewed Unai Zulaika Zurimendi, a computer engineer at the University of Deusto in Bilbao, and Soumitra Ghosh, a researcher at Fondazione Bruno Kessler in Trento, about the Natural Language Processing tools they are developing to extract data from clinician notes, you can find it here.
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Hot takes from the fifth consortium meeting in Rome |
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IDEA4RC members gathered in Rome on 21 and 22 November for the fifth consortium meeting, which was held at the headquarters of ENG, Engineering Ingegneria Informatica.
Now we need data!
“Over the last two years we learned how to work together, and found a common language”, said Annalisa Trama, epidemiologist at the National Cancer Institute of Milan and project coordinator, during her opening remarks. “We have developed innovative tools; now we need data to fully demonstrate their potential. Data will be the focus of the third year of IDEA4RC”, she added.
Eugenio Gaeta, a software engineer at the Technical University of Madrid and leader of work package 3, which is devoted to the deployment of the data infrastructure, reinforced this point. “During year one, we developed and refined user stories, from which we derived user requirements. During year two we developed infrastructure services, virtual assistants, and data navigators. Now we need data. In the pilot projects selection, use cases have been outlined, and some of them involve very specific data extraction. We need to ensure that we can support these extractions by the end of year three.
As a first step in this direction, centres will be sharing samples of real data that will be used as test for the extraction-transform-load (ETL) tools developed so far to harmonise them according to the common data model of IDEA4RC. Furthermore, centres will be sharing samples of annotated clinician notes to train and test the NLP pipeline that is currently under development.
Data: as open as possible, and closed when necessary
Gaeta then presented a high-level overview of the functionalities of the system and how they are being implemented at the user level. “We started IDEA4RC with the motto ‘open data as possible and closed when necessary’ adding ‘with local processing always available’ and we employed several technologies to implement this motto”, Gaeta said. “Several of the services we have developed are aligned with the user journey identified by TEHDAS for the European Health Data Space”, he added.
Unai Zulaika, a computer engineer at the University of Deusto, presented the latest developments of the IDEA4RC data model for head and neck cancers and sarcomas.
Laura Lopez, researcher at the Technical University of Madrid and leader of the development of RAVEN, IDEA4RC data navigator, demonstrated the tool.
To proceed with the data analysis, the users will be directed to the data governance tool that will guide them through the data access application process.
To manage accesses within IDEA4RC data navigator and the governance tool, a self-sovereign identity approach will be adopted.
Frank Martin, a software engineer at the Netherlands comprehensive cancer organisation (IKNL), showed a demonstration of how Vantage6, the set of federated AI tools for cancer data analyses developed at IKNL, will be integrated into the IDEA4RC user interface.
Community of Interest
During the second day of the meeting Lidia Villanova, a project manager at Alliance Against Cancer and leader the engagement work with IDEA4RC stakeholders, outlined the activities carried out to build the Community of Interest and plan future engagement initiatives. The Community of Interest started with representatives of rare cancer patients, thanks to the involvement of EURACAN, the European Reference Network for Rare Adult Solid Cancers, who participated in discussion meetings and a survey to help plan the next steps.
Vasiliki Tsiompanidou, a legal researcher at ECCP and lead on the legal aspects of the IDEA4RC data space, updated the consortium about the status of the legal agreements between the clinical centres required to deploy the pilot projects in 2025.
Franco Mercalli, an IT engineer at the consultancy company MultiMed Engineers, led a lively discussion on the implementation of the pilot projects deployment plan, where various professionals from each clinical centre need to collaborate to put everything in place.
The meeting ended with a discussion about the participation of IDEA4RC to the next Vitalis conference, the Nordic region’s largest conference and exhibition focused on transforming healthcare and social welfare. Andreas Muth, oncological surgeon at Sahlgrenska University Hospital in Gothenburg, will act the point of contact with Vitalis.
Co-creation workshop on the sustainability of the IDEA4RC rare cancer data space
In a parallel session held during the first day, Claudia Egher, a sociologist at Utrecht University, led the third co-creation workshop of the IDEA4RC project. It involved clinicians and legal experts from the Centres of Expertise who shared their perspectives on what would favour or inhibit the wide adoption of the IDEA4RC rare cancer data space.
As the first activity, participants were asked to discuss in small groups what sustainability meant to them, both in general and in relation to IDEA4RC in particular. The second activity encouraged them to get creative by writing a story about the IDEA4RC data space, starting from an image selected from those proposed by consortium members during preparatory activities held online before the workshop.
“The purpose of these activities is to identify general as well as context-specific factors that can encourage or prevent the wide adoption of IDEA4RC and to better understand how these factors are inter-related”, Egher explains and adds that the data collected in this workshop, along with data from the second co-creation co-creation workshop held in Madrid in November 2023, will be the basis for the forthcoming deliverable that will focus on the self-sustainability of IDEA4RC.
Meetings, results
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On December 4, 2024, the European Patient Advocacy Groups of EURACAN, the European Reference Network for Rare Adult solid CANcers, where invited to join a webinar where Annalisa Trama explained how IDEA4RC is contributing to the EURACAN registry. Find out more here. |
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The webinar organized for EURACAN patient representatives marked the beginning of a series of webinar which will start in January and will be open to the public. IDEA4RC researchers will present the main feature of the rare cancers data ecosystem they are developing, from the data model and the federated architecture to the legal and data governance aspects. The schedule is available here. |
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Annalisa Trama presented IDE4RC during the real-world evidence projects session at the Connect to Win conference, the annual meeting of Digicore, held in Utrecht from November 25 to 27. Find out more here. |
What’s up in health
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A research team at the Memorial Sloan Kettering Cancer Center developed MSK-CHORD, a large-scale clinicogenomic dataset integrating AI and natural language processing to analyse diverse data streams, improving cancer outcome predictions and uncovering new biomarkers for therapy response. The results were published in Nature, available here. |
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The OECI emphasizes the importance of gender equality in science, showcasing female researchers like Dr. Annalisa Trama and highlighting initiatives like the EURACAN collaboration to tackle workplace inequalities and inspire future generations. Read the full paper here. |
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The text of the European Health Data Space is now available in all the 27 EU languages. You can access it here. |