The IDEA4RC project participated in Vitalis 2025, the leading eHealth event in Scandinavia, taking place in Gothenburg from May 19 to 22.
Project partners presented ongoing work and share insights into the solutions being developed to support the secondary use of health data for rare cancers research and care.
On May 19th, 15:00-17:00, Annalisa Trama and Eugenio Gaeta, IDEA4RC coordinator and technical manager respectively, gave a keynote speech during the opening event titled Transforming Healthcare with Digital Innovation. A recording is available at this link: https://youtu.be/lhPKlE1nny8
On May 21st, 9:00-11:50, technical partners showcased IDEA4RC components developed so far in the IDEA4RC Open@Vitalis Technical track. A recording is available at this link: https://www.youtube.com/playlist?list=PLIoRqAHzgfsKEr0VRtOyFaGUHbvaNGHWH
On May 21st, 13:00-15:30, IDEA4RC presented its vision and solutions the public in Gothenburg, during the track A real-world solution to secondary health data use in cancer: the IDEA4RC project. A recording of the is available at this link: https://www.youtube.com/playlist?list=PLIoRqAHzgfsKn11rIpB6tvizgCAAY0dxb
The detailed program of this track is the following:
- 13:00-13:15 – “Intelligent ecosystem to improve the governance, the sharing, and the re-use of health data for rare cancers (IDEA4RC): an introduction”, Andreas Muth (Sahlgrenska University Hospital). Watch the video here.
- 13:15-13:30 – “The need for data in rare cancer – a patient perspective”, Magnus Carlsson (former chairman of the Swedish Sarcoma Association). Watch the video here.
- 13:30-15:00 – “Showcase Data-reuse challenges tackled with IDEA4RC solutions”. The video, available here, contains the chapters below.
- “Data re-use for research: which challenges?”, Annalisa Trama (National Cancer Institute of Milan)
- “The data holder journey in IDEA4RC”, Eugenio Gaeta (Universidad Politécnica de Madrid)
- “Security, privacy and trust in IDEA4RC”, Eugenio Gaeta (Universidad Politécnica de Madrid)
- “Extract transform and load (ETL) for IDEA4RC. A new paradigm for data gathering”, Vincenzo Falanga (Engineering Ingegneria Informatica S.p.a.)
- “Data modelling, interoperability and NLP for data extraction”, Unai Zulaika (Universidad de Deusto)
- “The user journey with IDEA4RC solutions”, Itziar Alonso (Universidad Politécnica de Madrid)
- “Data findability and understanding: solutions by IDEA4RC”, Adrián Dantas (Universidad Politécnica de Madrid)
- “Federated analysis”, Frank Martin (Netherlands Comprehensive Cancer Organisation)
- “Breaking barriers to collaboration: IDEA4RC access”, Ioanna Drympeta (Centre for Research & Technology, Hellas)
The track ended with a session focused on the legal and ethical challenges in the secondary use of health data in cancer research. Project partners discussed with representatives of health data authorities from with representatives of health data authorities from the EU and Northern European countries, moderated by Sébastien Ziegler, co-chair of the Europrivacy International Board of Experts and IDEA4RC member. A recording of the is available at this link: https://www.youtube.com/playlist?list=PLIoRqAHzgfsKBM-KMWpCh_VvrNJraskkG
The detailed program of this track is the following:
- 15:30-15:50 – “Legal/privacy challenges of today: EU perspective”, Guillaume Byk (European Commission). Watch the video here.
- 15:50-16:10 – “Danish perspectives on secondary use – moving towards EHDS”, Sigrun Gyrtrup (Danish Health Data Authority). Watch the video here.
- 16:10-16:30 – “Legal/privacy challenges of today in Sweden”, Tina Chavoshi (Swedish eHealth Agency). Watch the video here.
- 16:30-17:00 – “Round Table The way ahead from a Nordic countries and European perspective”, moderated by Sébastien Ziegler (European Center for Certification and Privacy). Watch the video here.