From "Black Box" to Learning System: Formative Viewpoint on Digital Health Governance for Childhood Cancer
Kazumi Kubota1,2, Ryuta Urakawa3,4
1Research Organization, Shimonoseki City University, Shimonoseki, Yamaguchi, Japan.
JMIR Formative Research
|February 25, 2026
Summary
Japan’s childhood cancer data is fragmented. This study proposes a national digital governance framework using HL7 FHIR to connect registries and survivorship care, improving data linkage and transparency for better pediatric cancer outcomes.
Area of Science:
- Health Informatics
- Pediatric Oncology
- Health Services Research
Background:
- Japan's pediatric cancer information system lacks integration, hindering comprehensive data linkage across healthcare providers, registries, and survivorship services.
- The World Health Organization's CureAll framework emphasizes information governance for achieving health equity.
- Existing systems prevent reliable tracking of treatment exposure and long-term follow-up for childhood cancer patients.
Purpose of the Study:
- To propose a national digital governance framework for pediatric oncology in Japan.
- To enhance data interoperability and linkage between clinical systems, cancer registries, and survivorship services.
- To improve the transparency and completeness of childhood cancer data.
Main Methods:
- Synthesized international guidance, Japanese statutes, and registry reports.
- Designed a minimal pediatric dataset and an HL7 Fast Healthcare Interoperability Resources (FHIR)-based architecture.
- Defined governance for standards, consent, data use, and quality, establishing a national Pediatric Data Steward role.
Main Results:
- Outlined a 4-layer interoperability architecture connecting source systems via an HL7 FHIR gateway.
- Specified governance for terminology, privacy, data quality, and audit.
- Proposed outputs including a Digital Survivorship Passport linked to national registries and vital statistics.
Conclusions:
- Transforming Japan's pediatric oncology information system requires a focus on governance.
- A national Pediatric Data Steward, a harmonized FHIR data dictionary, and a layered consent model are key.
- Implementing this framework can enhance data timeliness, completeness, follow-up, and transparency in pediatric cancer care.
Keywords:
FHIRFast Healthcare Interoperability Resourcescancer registrieschildhood cancerhealth information governancelong-term follow-upMore Related Videos
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