Problem Statement

Lung cancer is one of the most significant chronic disease burdens in North Carolina, both in terms of incidence and mortality. According to CDC data from 2023, the state experienced 34.9 deaths per 100,000 residents from lung cancer and 58.4 new cases per 100,000 residents, both higher than the national averages.(1)These elevated rates place lung cancer among the most pressing cancer-related public health challenges in North Carolina.

Disparities are evident among racial and ethnic minorities across timeliness of diagnosis, treatment access, and five-year survival rates. (2) Risk factors also contribute to North Carolina’s elevated burden; adult smoking prevalence alongside of youth e-cigarette use are both higher than the national average.(3)

These statistics underscore the urgency of strengthening surveillance systems to provide timely, representative data that can inform prevention, screening, and equitable treatment strategies for lung cancer in North Carolina.

Current State of Surveillance

The North Carolina Central Cancer Registry (NCCCR) is the state’s legally mandated system for tracking cancer incidence, treatment, and outcomes. As part of the CDC’s National Program of Cancer Registries (NPCR) and the North American Association of Central Cancer Registries (NAACCR), it provides a comprehensive record of cancer cases across hospitals, clinics, and laboratories. NCCCR data are essential for understanding cancer trends, guiding public health policy, and supporting national cancer control efforts.

Despite its strengths, the NCCCR faces several limitations that reduce its effectiveness in addressing urgent public health concerns, such as lung cancer. Timeliness, integration, and equity monitoring are the main challenges. The registry data is often delayed up to 2 years behind real-world diagnoses, NCCCR is often not linked to behavioral data, and equity-based variables may be incomplete.

For a condition such as lung cancer, these limitations hinder North Carolina’s ability to respond quickly and equitably. Modernizing NCCCR to improve timeliness and representativeness is therefore critical to reducing the state’s disproportionate lung cancer burden.

Modernization Strategy

To address these gaps, North Carolina should modernize its cancer surveillance system by aligning the NCCCR with CSTE Objective 2.1: “Improve traditional surveillance systems to provide timely and representative chronic disease insights.” (4) The goal is to reduce reporting lag, strengthen representativeness, and create actionable insights for prevention and treatment of lung cancer.

A unique opportunity exists through the Cancer Identification and Precision Oncology Center (CIPOC) at UNC-Chapel Hill, which was recently awarded ARPA-H funding to aggregate and analyze cancer data from diverse sources—including electronic health records, pathology and radiology images, claims, and geographic information utilizing large language models.(5) CIPOC is designed to support real-time cancer case identification and equitable care delivery. Integrating NCCCR modernization with CIPOC’s infrastructure would allow the registry to improve timeliness, enhance data linkage, and support equity-focused initiatives

By grounding modernization in CSTE’s national strategy while leveraging CIPOC’s cutting-edge infrastructure, North Carolina can create a best-practice model for other states. This integrated approach would demonstrate how traditional registries and advanced AI-enabled systems can work together to provide high-quality data while leveraging the improved efficiency that AI brings.

Summary

North Carolina faces an urgent burden from lung cancer, with incidence and mortality rates above the national average and significant disparities across racial and geographic groups.

Modernizing the NCCCR to improve timeliness, completeness, and representativeness is critical to addressing this challenge. By aligning with CSTE Objective 2.1 and leveraging the AI-enabled infrastructure of CIPOC, the state can reduce delays in reporting, link surveillance data to risk factors and screening uptake, and generate equity-focused insights for targeted interventions.

This integrated approach demonstrates how traditional registries can evolve into rapid, representative systems and provides a best-practice model that other states and chronic conditions can adopt.

The model has clear implications beyond lung cancer. The same framework can be applied to other cancers, as well as non-cancer conditions like COPD or cardiovascular disease. Importantly, the CIPOC project’s use of retrieval-augmented generation and advanced prompting strategies to extract and synthesize multi-modal data provides an adaptable toolkit for modern surveillance. By applying the most effective AI methods refined within CIPOC, North Carolina can not only strengthen its lung cancer registry but also inform future AI applications in healthcare surveillance more broadly. This positions the state as a leader in operationalizing CSTE’s strategic plan while demonstrating how cutting-edge AI methods can scale across diseases and conditions.