More Than a Statistic
Patients
Cancer affects millions across Europe, but behind every diagnosis is a life interrupted. UNCAN‑Connect is a European effort to bridge isolated data systems, ensuring that every patient’s journey contributes to better outcomes, faster treatments, and personalized care for all.
Data Ecosystem
Understanding the Importance of Cancer Data
Cancer affects millions of people across Europe every year. Behind each diagnosis is a person, a family, and a journey that can be complex, emotional, and often uncertain. While science has made important progress, the reality is that outcomes still vary greatly depending on where someone lives, the type of cancer they have, and how quickly they receive care. Many patients face delays, fragmented pathways, or limited access to the latest treatments. Rare cancers often lack the evidence needed to guide care, simply because not enough data exist.
In the WHO European Region, around one in four people will develop cancer before the age of 75, and the risk of dying from cancer is 11.5%, making it one of the leading causes of illness and death. In 2020 alone, 2.7 million people in the European Union were diagnosed with cancer and 1.3 million lost their lives, including more than 2,000 young people. Without decisive action, cancer cases are expected to increase by 24% by 2035, potentially making cancer the leading cause of death in the EU. These are not just numbers. Behind every statistic is a person, a family, a life interrupted.
2.7M
People diagnosed in the EU (2020)
1.3M
Lives lost annually
+24%
Expected increase by 2035
Across hospitals, clinics, and research centres, a vast amount of information is generated every day about cancer diagnosis, treatments, and long-term outcomes. However, much of this information remains isolated within individual institutions or national systems. When data remain fragmented, opportunities to learn from the experiences of many patients are lost.
The UNCAN-Connect project aims to help address this challenge. It is a European initiative designed to improve how cancer data are used, shared, and protected so that knowledge from across Europe can support better research and, ultimately, better patient care.
Why Cancer Data Matter
Every time a patient receives a diagnosis, undergoes treatment, or attends a follow-up appointment, valuable information is created. When this information is responsibly combined and analysed securely across countries, it becomes a powerful source of knowledge.
Better use of cancer data can help:
Detect cancer earlier
By analysing patterns among many patients, doctors can identify early signs of cancer and improve screening strategies.
Guide treatment decisions
Learning from previous patient outcomes helps clinicians understand which treatments are most effective and which may cause unnecessary side effects.
Personalise care
Cancer affects each person differently. Combining clinical information with patient-reported experiences can support care tailored to individual needs and priorities.
Improve survivorship
Long-term data help health systems understand the late effects of cancer and improve support during follow-up care and life after treatment.
Advance research on rare and advanced cancers
For rare cancers, a single country may not have enough cases to generate strong evidence. Sharing data across Europe makes meaningful research possible.
Cancer data are not just numbers—they are stories that, when combined, can lead to better care for all.
A Unified European Vision
What UNCAN Connect Is Working To Achieve
UNCAN-Connect aims to strengthen cancer research and knowledge in Europe by improving the quality, consistency, and accessibility of cancer data. Because cancer includes many different diseases, researchers and clinicians need reliable and comparable information to better understand how these diseases develop and respond to treatment.
The project is building a secure and trustworthy framework that allows cancer data to be analysed across Europe while remaining under the control of the organisations that collect them, such as hospitals, registries, and research institutions. This approach protects patient privacy while enabling researchers to work with large and diverse datasets.
UNCAN-Connect focuses on several key elements:
- strong data protection and privacy safeguards aligned with European regulations
- transparent governance structures defining how data can be accessed and used
- ethical oversight ensuring responsible use of health data
- technical solutions that enable interoperability between research infrastructures and health databases
A number of research use cases are also being developed within the project to demonstrate how this framework can support meaningful research. These studies address areas such as cancer prevention, early detection, diagnostic pathways, treatment response, and long-term outcomes. They include both common cancers with a large population impact and rare cancers where evidence remains limited. Through these activities, the project aims to create a stronger foundation for collaborative cancer research across Europe.
Active Partnership
The Role of Patients in UNCAN-Connect
Patients are not merely subjects of research – they are essential partners in shaping its direction. Within the UNCAN-Connect initiative,patient organisations serve as the collective voice of those affected by cancer, ensuring that research priorities, digital infrastructures and data governance reflect the real experiences and needs of patients.
Through active participation in consultations, workshops, and stakeholder dialogues, patients engage directly with researchers, clinicians, policymakers, and legal experts. This collaborative approach ensures that patient perspectives are embedded in every decision concerning how cancer data are used, shared, and protected.
Involving patients in meaningful ways improves transparency, strengthens accountability, and builds trust in how health data is managed.
Governance and Ethical Frameworks
Patient representatives are integral to the co-design of the governance principles underpinning UNCAN-Connect. Their expertise informs foundational discussions on ethics, privacy, transparency, and the responsible use of sensitive health information.
Beyond advisory roles, patients actively contribute to the development of ethical guidelines, impact assessments, and policy recommendations ensuring that governance structures remain anchored in the values and expectations of those they are designed to protect.
Policy and Stakeholder Engagement
Patient voices are represented at the highest levels of strategic decision-making through formal participation in policy discussions and stakeholder events, helping shape cancer research and data governance across Europe.
Structured partnerships with patient organizations facilitate the systematic capture of insights into patient needs and expectations, directly informing the evolution of the UNCAN platform and its data management architecture.
Co-design of Tools and Information Materials
Clarity and accessibility are essential. Patients take part in the co-design of patient information materials, helping ensure that communications are accurate, meaningful, and understandable for diverse audiences. Through continuous review, patient contributors refine the content, so it reflects community perspectives and helps bridge the gap between complex scientific work and the people it serves.
Development of Research Use Cases
Through workshops and consultations, patients help shape the design of research use cases and the development of digital tools and infrastructures. Their input supports the development of platforms and research infrastructures that are understandable, relevant, and responsive to patient perspectives.
Communication, Awareness, and Engagement
Patient organisations play a vital role in amplifying the reach and impact of UNCAN-Connect. Through strategic communication and dissemination activities, they help raise awareness about the project and promote trust in data-driven cancer research.
These activities include awareness campaigns, representation at conferences and public forums, and targeted outreach initiatives, all designed to strengthen understanding of cancer research and encourage sustained engagement with the scientific community.
Building Trust Through Collaboration
By involving patients and patient organisations throughout the research process, the initiative promotes a collaborative approach that values patient expertise and upholds the highest standards in the responsible use of health data.
Through continuous dialogue among patients, researchers, healthcare professionals, and policymakers, UNCAN-Connect is helping to forge a European cancer research ecosystem that is more transparent, more inclusive, and unequivocally patient-centred.
The Power of Evidence
Why This Matters for Patients and Families
Progress in cancer care often happens gradually through the accumulation of knowledge and scientific evidence. UNCAN-Connect represents an investment in the infrastructure, collaboration, and governance needed to support future discoveries.
By improving how cancer data are used today, the project helps support a future in which treatments are more personalised, research progresses more rapidly, and inequalities in cancer outcomes across Europe are reduced. It also ensures that knowledge gained from one patient’s experience can contribute to better care for many others.
For patients and families, this means greater confidence that cancer care decisions are informed by the best available knowledge from across Europe and that research continues to move toward more effective, patient-centred care.
Useful Resources for Patients and Families
If you would like to learn more about cancer, prevention, healthy living, and how data and research can improve care, the following trusted resources may be helpful:
Participation
Get Involved
The voice of the patient is vital to the success of UNCAN-Connect. If you are a patient advocate or represent a citizen organisation interested in contributing to the future of European cancer research, we want to hear from you.