Exmploring New Approaches to Data Collection: Modular Records Task Force Final Report

The Modular Records Task Force was initiated in August 2025 to support the NAACCR Board’s Strategic Plan on the strategic initiative for Innovative Approaches to Data Collection (Minimal Datasets and Partial Records): Improving timeliness through innovative approaches to data collection. The purpose of the task force was to define a new “modular” approach to cancer data collection where records are divided into components representing stages of a patient’s cancer journey. This approach is intended to improve efficiency and timeliness of reporting, capture more comprehensive data (e.g., treatment response, recurrence, survivorship), and leverage modern technologies such as Electronic Health Records, Fast Healthcare Interoperability Resources (FHIR) interoperability standards, and Artificial Intelligence, with the ultimate goal of improving research and patient outcomes. The task force convened through April 2026 and provided the Standardization and Registry Development (S&RD) Steering Committee with its final report and recommendations for next steps in May 2026. The findings and recommendations are summarized in the remainder of this article.

The core concept of modular cancer records is to replace a single static cancer abstract with multiple modules tied to events over time. The modules can be submitted at different stages, enabling early case capture, continuous updates, and more real-time surveillance.

The task force identified eight key event-driven modules:

1. Demographics: patient information, tracking updates over time.
2. Pre-Diagnostic Workup: screening activities.
3. Initial Diagnosis (first four months): diagnosis, staging, SSDIs, genetic testing.
4. Diagnostic Workup (after four months): updates to diagnosis and further testing.
5. Additional Clinical Factors: secondary diagnosis and emerging clinical information.
6. Lines of Therapy: Treatments, responses, targeted therapy, adverse effects, precision medicine.
7. Cancer Status: outcomes and disease progression (short-term, long-term, and recurrence).
8. Survival: separate category for unique tracking needs, includes death data.

Key design principles identified by the task force emphasize focusing on event-driven data capture rather than solely on data sources. Modules should be standardized, incorporate minimum data sets, and support repeating events. Additionally, data must be convertible into NAACCR Standards and structured to support reporting at the identified stages above.

Major findings and considerations included challenges with current systems, such as limited cancer-specific requirements in EHR certification and the need to distinguish between data sources and data formats. While emerging technologies show promise, they remain in the early stages for cancer registry usage. Additionally, different data streams require greater harmonization (hospitals, labs, ambulatory practices, claims data, vital records, screening programs, etc.). Key data sources identified include hospitals and EHRs, laboratories (including molecular/genetic), outpatient/ambulatory centers, central cancer registries, vital records (death certificates, SSA, NDI), insurance claims (Medicare, Medicaid, private), screening programs, and other sources such as immunization registries or Indian Health Services.

Several recommendations for future work were outlined by the task force:

1. Define triggers (clinical events that initiate the modules), minimum required data elements, and standards and edits need to be considered for each module.
2. Determine which modules will allow for repetition and identify appropriate data exchange methods.
3. Develop workflows across modules and provide standardization guidelines prior to implementation.
4. Explore automation opportunities, including the use of artificial intelligence, and collaborate with NAACCR working groups to integrate these approaches into existing workflows.

In conclusion, the Modular Records Task Force has begun paving the way for a transformational shift in cancer surveillance from static reporting to a more dynamic, modular approach to cancer data collection. The task force emphasized the need for improved data quality, faster reporting, and more comprehensive insights into the patient journey, while also recognizing the need for significant standardization and infrastructure development prior to implementation. The final report remains under review as next steps are determined. Please check back for updates as further guidance becomes available.