European Common Cancer Data Model
One shared model for cancer data across Europe.
The ECCDM gives hospitals, registries and researchers one way to describe a patient's cancer history, so data can be exchanged for care and reused for research without being remodelled each time.
Why now
Reducing the impact of cancer takes more than data. It takes interoperable data.
- 21 millionnew cancer cases worldwide in 2024
- 10 milliondeaths worldwide in 2024
- 34 millionnew cases a year projected for 2050
Patients travel, and so must their data
Care crosses hospitals, regions and borders. Sharing within direct patient care only works if everyone agrees how to exchange information and how to interpret it.
A research foundation to build on
IDEA4RC, PanCareSurPass and FLUTE started a common data model for (rare) cancer research, and showed how much international collaboration is needed.
A policy window
The European Health Data Space promotes cross-border exchange and reuse of health data, and sets requirements such as the European EHR exchange format.
The model
One backbone, multiple representations
Europe's cancer projects share the same concepts but model them differently, so every link between FHIR and OMOP ends up as an ad hoc mapping. The ECCDM is a model rather than a dataset: a minimal, extensible backbone for cancer history that stays independent of any one standard.
Principles
- Scope
- Non-exhaustive and cancer-type agnostic
- Use
- Primary and secondary use aligned
- Feasibility
- EHR-aware and realistic
- Development
- Incremental and community-driven
Where it stands
- DoneConceptual model
Completed, agreed by the working group - DoneLogical model
Completed, agreed by the working group - In progressImplementation guide
Ballot closed, comment reconciliation pending - In progressOMOP mapping
Started - NextFHIR profiling and mapping
Pending
Developed in the open by the HL7 Europe cancer working group, in collaboration with the OHDSI Oncology working group and mCODE/CodeX. Read the implementation guide →
Get involved
Four steps, each one optional
Start by using the model. Go as far as you like from there.
Use the ECCDM
Read the implementation guide and map your cancer data to the model. The conceptual and logical models are agreed; FHIR and OMOP representations are being built on top.
Open the guideGive feedback on the model
Tried it on real data? Tell us what fits and what is missing. The first version is a milestone, and feedback decides what comes next.
Raise an issueJoin the PHOENIX calls
Sit in on the working calls where clinicians, researchers and standards experts discuss, test and extend the model.
Get the inviteBecome a PHOENIX member
Join the founding organisations in steering the work: set priorities, add capacity and represent your organisation.
Ask about membership
PHOENIX
The cancer community, together, making health data interoperable
First for care, then for research and other uses. PHOENIX, the Patient Health Oncological Expertise Network for International eXchange, is an HL7 Europe initiative that brings care providers, standards developers and implementers together around shared oncology requirements.
Why an initiative
Standards take time to develop, and adoption is never quick enough. Hospitals, EHR vendors, researchers and insurers each have their own goals: hard to align within one country, harder across Europe.
HL7 accelerators such as CodeX, Vulcan and Helios have shown that consortia speed this up. PHOENIX applies the same idea to European oncology, and moves the ECCDM from a project-based effort to shared, lasting capacity.
What the model should enable
- Data exchange for direct patient care
- Computable guidelines
- Cancer registry reporting
- EHR endpoints for clinical trials
- Trial matching
Founding members
- HL7 Europe
- Institut National du Cancer (INCa)
- Netherlands Comprehensive Cancer Organisation (IKNL)
- Paris-Saclay Cancer Cluster (PSCC)
- Berlin Institute of Health at Charité (BIH)
- Centre Antoine Lacassagne (CAL)
- InterSystems Belgium
- Assistance Publique – Hôpitaux de Paris (AP-HP)
- Charité Berlin
- Charleroi Hospital
The only way forward is together.
Help us shape the oncology standards of the future.