Toward real-time reporting of cancer incidence: methodology, pilot study, and SEER Program implementation

Area of Science:

• Public Health
• Cancer Epidemiology
• Health Informatics

Background:

• Significant lag exists between cancer diagnosis and incidence reporting, hindering timely monitoring of cancer trends.
• Current data submission and reporting standards involve delays of 22 and 27.5 months, respectively.
• This delay impedes the assessment of recent events' impact on cancer incidence.

Purpose of the Study:

• To describe the National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program's strategy for minimizing reporting lag.
• To operationalize "real-time" cancer reporting, defined as submission within two months of the diagnosis year's end.

Main Methods:

• Development of technology for rapid creation of consolidated tumor cases (CTCs) from electronic pathology (e-path) reports.
• Application of statistical methods to adjust incidence rates for reporting delays.
• Utilization of machine learning algorithms to process unstructured e-path reports into essential data for incidence reporting.

Main Results:

• A pilot study confirmed that real-time submissions, after adjustment, approximate rates from 22-month submissions.
• The SEER Program is implementing a plan for rapid ascertainment of e-path reports and conversion to CTCs.
• Registries are being certified for real-time reporting, with cases submitted within two months post-diagnosis year.

Conclusions:

• Advancements in electronic reporting, natural language processing, and statistical methods are key to achieving real-time reporting.
• The SEER Program's coordinated efforts are crucial for mobilizing these technological and methodological improvements.
• Real-time cancer incidence reporting is an achievable goal through integrated technological and operational enhancements.