Understanding who shapes the future of cancer data in Europe starts with one question: who are the users behind federated research, National Cancer Data Nodes, and cancer information services? To address this, UNCAN-Connect, CANDLE, and EU-CiP launched a series of workshops to define Personas – fictional characters that represent different user groups and help capture their real needs.
The first Persona Workshop laid the foundation for this work by introducing four key user groups: Research Organizations, Cancer Registries, Patients, and Research Infrastructures. These discussions led to the development of the first set of personas.
On March 6th the European cancer stakeholder community came together again for their second joint workshop, bringing together 45 participants. During this session, four additional personas were created to reflect the roles of National Cancer Data Nodes within the broader European Health Data Space. These included Healthcare Providers, NCDN Representatives, Industry, and Health Data Access Bodies and Policymakers.
Participants worked collaboratively to define each persona by exploring their goals, motivations, challenges, needs, and existing skills. This structured approach enabled a deeper and more nuanced understanding of the diverse stakeholders shaping the European cancer data ecosystem.
Thank you to all participants for their active engagement and valuable contributions. More insights and results will be shared soon.
Access the session slides here and watch the workshop recording to learn more.