NPCR Anmälan FHIR Implementation Guide

Introduction

Version 0.1.1-draft, updated on 2026-04-28
Pre-implementation feasibility study
Karolinska Institutet
Master's thesis in Health Informatics
In collaboration with Cambio Healthcare Systems


About This Guide

This Implementation Guide (IG) documents a pre-implementation feasibility study for mapping prostate cancer clinical data from electronic health records (EHR) to the Swedish National Prostate Cancer Register (NPCR) Anmälan (cancer notification) form, using the HL7 FHIR R4 standard.

The IG is the technical artifact of a Master's thesis investigating whether NPCR reporting can be represented using standardized FHIR profiles to support future semi-automated data reuse from EHR systems.


Key Artifacts

Category Count Status
StructureDefinition (Profiles) 24 All verified
StructureDefinition (Extensions) 8 All verified
CodeSystem 11 Published
ValueSet 17 Published
Example instances 20 Validated

Variable Coverage

The full NPCR Anmälan reporting form contains 101 variables, partitioned into clinical content and supplementary metadata.

Variable set Addressed Total %
Anmälan clinical (registrar-entered) 68 86 79.1%
Supplementary (system-populated + administrative metadata) 7 15 46.7%
Combined 75 101 74.3%

The 15 supplementary variables comprise two groups: 8 system-populated fields auto-filled by INCA from external Swedish registries (Skatteverket / Folkbokföring / Dödsorsaksregistret, covered by NPCRPatient and NPCRCauseOfDeathObservation), and 7 administrative reporting metadata fields (Monitor-entered or auto-generated identifiers and timestamps that fall outside the clinical mapping scope of this thesis).

Feasibility Assessment

The 86 clinical Anmälan variables were scored on three criteria from thesis Methods Section 2.4.5: structuredness (F1), terminology binding (F2), and NKRR extraction rule completeness (F3).

Score distribution High Medium Low N/A
F1: Structuredness 79 (91.9%) 5 (5.8%) 2 (2.3%)
F2: Terminology 33 (38.4%) 14 (16.3%) 7 (8.1%) 32 (37.2%)
F3: Extraction Rules 8 (9.3%) 78 (90.7%)
Classification Count %
Readily mappable 6 7.0%
Requires further investigation 77 89.5%
Outside scope of FHIR-based representation 3 3.5%

Constraint Statistics

Metric Value
Total profile constraints 363
Constraints traceable to NPCR documentation (A) 280 (77.1%)
Constraints derived from NPCR business rules (B) 43 (11.8%)
Constraints added for FHIR best practice (C) 40 (11.0%)
NPCR-documentation-required (A + B) 89.0%
Quality Control issues (recommended.rules.yaml) 0

Status

This IG is a draft deliverable of an ongoing Master's thesis. The 24 profiles, 8 extensions, 11 CodeSystems, 17 ValueSets, and 20 worked example instances form the current technical artifact. A visual architecture diagram (UML class model) and the thesis discussion of feasibility findings will be added in subsequent iterations.