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Cancer Data Collaboration WG

Cancer Data Collaboration WG

Background

The working group was initiated under the openEHR Clinical Program Board to support collaboration on cancer data modeling within the openEHR community and with relevant external initiatives.

Its plan of work is closely connected to the openEHR Fellowship project “From a Common Cancer Core to a Comprehensive openEHR Oncology Model.” The fellowship will provide the main capacity for analysis, coordination, documentation, and initial modeling, while the working group will contribute clinical, modeling, implementation, and strategic expertise.

The European Cancer Common Data Model initiative will serve as an important starting point, but the scope of the group is broader than collaboration with the ECCDM alone. Relevant oncology initiatives, existing openEHR implementations, professional communities, and clinical requirements across the broader cancer-care domain will also be considered.

Mission

To support international collaboration on reusable, clinically meaningful, and interoperable openEHR models for cancer care.

Aim

To develop a structured understanding of the oncology domain, starting from the ECCDM and other relevant initiatives, and to identify how cancer-care information can be represented more comprehensively in openEHR.

Scope

The working group will:

  • review the clinical concepts represented in the ECCDM;

  • identify essential and desirable information not currently covered;

  • develop a structured overview of the wider oncology domain;

  • review existing oncology-related content in the openEHR Clinical Knowledge Manager;

  • identify which archetypes can be reused, revised, extended, or need to be created;

  • support the development and review of prioritised openEHR archetypes;

  • provide structured feedback from the openEHR community to the ECCDM initiative;

  • coordinate with the Clinical Program Board, International Editorial Board, and relevant external communities.

Working group organization

WG lead

  • Olha Nikolaieva

WG members

  • Ana Pascual Segura

  • Koray Atalag

  • John Powderly

  • Severin Kohler

  • Michael Schnell

  • Amanda Herbrand

  • Laia Humbert Vidan

 

Websites

HL7 Europe Common Cancer Model

Minimal Common Oncology Data Elements (mCODE)

 

Regular meeting schedule: biweekly on Wednesdays at 15:00 CEST

Recurrent meeting link: https://teams.microsoft.com/meet/336694671684880?p=BxIpGcXeYlfyjOsaOc

Short plan of work

  1. Establish the working group and involve experts from relevant oncology domains.

  2. Review the ECCDM and identify conceptual gaps and possible extensions.

  3. Define the overall structure of the oncology domain in openEHR.

  4. Review existing CKM content and create a prioritized modeling backlog.

  5. Develop and iteratively review selected archetypes.

  6. Consolidate the results into recommendations and a roadmap for continued work.

Phase 1: Establishment and domain review Establish the working group and regular meeting format. Identify experts in related domains (systemic therapy, radiotherapy, surgery, pathology, molecular diagnostics, clinical trials, research and other relevant areas if applicable). Review the ECCDM structure, concepts, intended use cases and current clinical coverage. Identify related oncology models, projects and implementation experience. Create an initial structured overview of the oncology domain. Phase 2: Conceptual analysis Collect expert input on the information required across cancer care. Assess which ECCDM concepts are sufficiently represented. Identify essential missing concepts and desirable extensions. Define relationships between concepts and their reuse across cancer types and workflows. Prepare structured feedback for the ECCDM initiative. Phase 3: openEHR structure and gap analysis Determine how the identified concepts should be represented in openEHR. Consider the appropriate use of different classes of archetypes for identified concepts. Review relevant CKM archetypes. Identify content that can be reused, constrained, revised, extended or created de novo. Coordinate proposed changes to international archetypes with the International Editorial Board. Create and prioritize a modeling backlog. Phase 4: Modeling and review Develop or revise selected priority archetypes. Present draft models and modeling decisions to the working group. Collect and incorporate clinical, technical and implementation feedback. Submit relevant artifacts for wider community or CKM review where appropriate. Document open questions, decisions and recommendations. Phase 5: Consolidation Consolidate the conceptual analysis, CKM gap analysis, modeling outputs and expert feedback. Provide final structured feedback to the ECCDM initiative. Define priorities and recommendations for continued oncology modeling. Prepare a roadmap for the next phase of the working group.

Working approach

The main analysis, documentation, coordination, and initial modeling work will be prepared within the fellowship project. Findings and proposals will be brought to the working group for discussion, validation, and refinement. This approach is intended to make participation practical while ensuring that the outputs are shaped by broad clinical and modeling expertise.

Participants and domain experts are invited to attend regular meetings where possible, review the presented analyses and modeling proposals, and contribute their clinical, modeling, implementation, research, or standards expertise. Participation may be ongoing or limited to specific topics, and no substantial work between meetings is expected unless someone volunteers for a particular task.

Tasks