HL7 Europe Common Cancer Model, published by HL7 Europe. This guide is not an authorized publication; it is the continuous build for version 0.1.0 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/hl7-eu/cancer-common/ and changes regularly. See the Directory of published versions

The Cancer Journey 2

A patient’s cancer journey is a longitudinal sequence of events that starts with presentation and evidence gathering, continues through condition assertion and staging, proceeds to treatment (often in overlapping episodes), and is followed by ongoing assessment of response and disease status. Capturing dates consistently for each step is essential so the timeline can be accurately reconstructed for care and research.

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1. Initial Entry into Care

• The journey starts with Symptoms / Screening that lead the patient to seek medical attention.
• The first formal step is an Initial Visit, where the patient is evaluated and initial data (e.g., basic demographics, initial concerns) are captured.

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2. Clinical Assessment and Diagnostic Work-up

• After the initial visit, the patient undergoes a Clinical Assessment.

  • Key data elements recorded include:

    • Patient information
    • Cancer Condition (suspected or confirmed)
    • Cancer Stage (if available or preliminary)

• The clinician then proceeds to Order Procedures for further investigation.

Procedures ordered may include:

• Imaging (e.g., CT, MRI, PET)
• Laboratory Tests
• Biomarker studies
• Biopsy
• Surgery (diagnostic or therapeutic)

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3. Diagnosis

• Results from the ordered procedures feed into the formal Diagnosis step.

• At this point, the following data are typically updated:

  • Patient record
  • Cancer Condition (confirmed diagnosis)
  • Cancer Stage (based on established staging criteria)

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4. Treatment Planning

• A formal Treatment Plan is created, including:

  • Intent Definition (e.g., curative, palliative)
  • Target Site (tumor location)
  • Start Date and End Date for treatment

• Treatments may consist of:

  • Surgery
  • Radiotherapy
  • Drug Administration (e.g., chemotherapy, immunotherapy)
  • Active Surveillance (for cases where immediate intervention is not required)

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5. Follow-up and Response Assessment

• After treatments begin or after a treatment cycle completes, the patient enters a Follow-up phase.
• Follow-up Visits are scheduled (via a Follow-up Timer).

• During these visits, data are collected:

  • Evidence (e.g., imaging, biomarker results)
  • Treatment Response Type
  • Updated Patient, Cancer Condition, and Cancer Stage information

• A Response Assessment is performed to evaluate:

  • Whether the disease is stable, progressing, or responding positively to treatment.

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6. Decision Based on Response

Depending on the outcome of the response assessment:

• If the response is positive and disease is stable:

  • Move to Continue Monitoring.

• If there is progression of the disease:

  • Options include:

    • Adjust Treatment (e.g., switch therapies)
    • Palliative Care if disease is advanced or refractory.

• If the disease status is terminal:

  • The care focus shifts toward End of Life care.

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7. Disease Evolution

• At each decision point, the patient’s disease status (e.g., stable, progression, terminal) determines the next steps in the journey.
• The cycle of treatment → follow-up → response assessment may repeat until either long-term stability is achieved or the disease progresses to a terminal stage.

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Key Data Entities Throughout the Journey

• Patient record
• Cancer Condition
• Cancer Stage
• Intent Definition
• Target Site
• Treatment Response Type
• Evidence collected during follow-up