The CANDLE team spent two days at the EUnetCCC – European Network of Comprehensive Cancer Centres Annual Meeting in Paris, engaging deeply with cancer data stakeholders from across Europe.
Learning from Stakeholders
At our dedicated booth, stakeholders from multiple sectors highlighted the most impactful barriers to cancer data sharing across their home countries. Infrastructure fragmentation emerged as the most frequently cited challenge, reflecting a system where technical, legal and institutional silos prevent smooth data exchange. Attendees also pointed to legal uncertainty as a major deterrent to collaboration across borders and disciplines.
Additional issues surfaced through conversations:
- Lack of a robust sharing culture inhibits open exchange and leads to project isolation.
- Limited access to non-government data sources means many valuable grassroots or multi-sector initiatives remain hidden or fragmented.
- Issues of trust, especially around data ownership, led some stakeholders to avoid sharing survey results or even discussing ongoing projects, with particular caution expressed by those from rural areas.
- Persistent fragmentation and siloes—both public and private—were noted as technical and organizational obstacles that require systemic attention.
- Data inequalities and participation gaps mean communities outside main metropolitan areas rarely have their perspectives reflected in national or European cancer data efforts.
Despite the challenges, stakeholders spotlighted promising initiatives for overcoming siloes, such as new cross-sectoral collaborations and multi-stakeholder projects. These examples, although non-government-led and sometimes hard to access, offer important lessons for establishing trust, transparency, and FAIR principles in future cancer data platforms.
Contributing to Critical Discussions
The panel discussion titled “Unlocking Cancer Data” placed CANDLE’s work supporting National Cancer Data Nodes (NCDNs) in the spotlight. Tomi P. Mäkelä delivered an overview of how NCDNs are positioned to bridge gaps and make cancer data infrastructure interconnected and robust. Fellow panellists—Divya Sri Priyanka Tallapragada, Marc Van den Bulcke, Juan Gonzalez-Garcia, and Annelies Verbiest—joined the dialogue to address questions about the evolving role of NCDNs in supporting data holders and working collaboratively with Health Data Access Bodies.
Exchanging with Projects and Partners
One of the meeting’s strengths was vibrant collaboration not only within the EUnetCCC network but with parallel and complementary initiatives. We exchanged with representatives from UNCANCAN, UNCAN-Connect, ECHoS | Establishing of Cancer Mission Hubs: Networks and Synergies, and more, learning directly from projects pioneering multi-country data harmonization and joint research efforts.
CANDLE project partners were well represented, with BBMRI-ERIC, European Cancer Organisation, ECRIN (European Clinical Research Infrastructure Network), empirica Communication and Technology Research, FICAN Instituto Aragonés de Ciencias de la Salud (IACS) and Sciensano all contributing expertise in technology, research, and stakeholder engagement.
