Informatics Perspectives on the National Cancer Policy Forum Workshop “Enabling 21st Century Applications for Cancer Surveillance Through Enhanced Registries and Beyond”

The National Cancer Policy Forum workshop Enabling 21st Century Applications for Cancer Surveillance Through Enhanced Registries and Beyond examined the current state of cancer registries and how they might evolve to extend registry missions to national health priorities related to improving patient and health economic outcomes, equitable access to care, and improvement in quality of health care and health system operational efficiencies. Session 3 of the workshop focused on medical informatics as a driver of improvement in cancer registry data quality and interoperability. Data quality begins with precision in data definitions as codified in controlled vocabularies and ontologies. Oncology data dictionaries that have been established or are evolving are described. Harmonization of various data dictionaries through representation in Systematized Nomenclature of Medicine-Clinical Terms and hierarchical classification systems within Common Data Models are outlined. Interoperability requires transmission standards that facilitate exchange of data between data sources, registries, and data consumers. While highly structured data capture and representation support semantically appropriate data use, the high degree of effort related to data capture and the accompanying rigidity in the data structure are challenges to implementation. Artificial intelligence may provide alternative paths for the extraction and representation of cancer registry data. Higher-fidelity cancer data and greater interoperability of data combined with data governance will help realize a Learning Health System for oncology, but economic benefits need to be shared to support the infrastructure costs incurred by health care systems.