JMIR Publications

ABSTRACT

Japan has universal health coverage and designated childhood cancer centers, but the national information environment still functions as a “black box”: incidence can be tracked, whereas treatment exposure and long term follow up are not reliably linked across hospitals, registries, and survivorship services. In this viewpoint, we synthesize international guidance and Japanese policy to propose a formative design for digital health governance that connects clinical systems, registries, and survivorship. We specify a minimal pediatric dataset and an interoperability architecture based on the Health Level Seven Fast Healthcare Interoperability Resources (HL7 FHIR) standard. A national Pediatric Data Steward would govern standards and APIs, terminology and coding (eg, International Classification of Diseases for Oncology and International Classification of Childhood Cancer, with mappings to SNOMED CT and LOINC), privacy and consent aligned with the Act on the Protection of Personal Information and the Next Generation Medical Infrastructure Act, data use agreements, data quality, and audit. Validated data from electronic health records, laboratories, radiology, pathology, and cooperative group databases would flow through a FHIR gateway to the National and Hospital based Cancer Registries and to a patient facing digital survivorship passport, with bidirectional updates and linkage to resident registries and vital statistics. We also propose pediatric indicators and a staged roadmap to implementation. Transforming pediatric oncology information in Japan into a learning system is primarily a governance task; a Pediatric Data Steward, a harmonized pediatric data dictionary, and a portable, consent aware survivorship passport could improve timeliness, completeness, follow up, equity, and transparency.