Bridging the Digital Divide: Tailoring Cancer Registry Education Materials to the US Affiliated Pacific Island Jurisdictions Needs

PURPOSE The US Affiliated Pacific Island Jurisdictions Pacific Regional Central Cancer Registry (PRCCR) is funded by the US Centers for Disease Control and Prevention’s National Program of Cancer Registries (CDC-NPCR). The PRCCR has a limited number of Oncology Data Specialists-Certified (ODS-Cs) registrars who understand the nuances of all data elements required and defined by the data-standard-setting agencies in the US. Most island registrars operating in lower resource settings, where the advanced data required for a cancer abstract is lacking or difficult to obtain because advanced cancer treatment is often referred out of the country to more advanced settings in the Philippines, Taiwan or elsewhere. METHODS Due to resource limitations, a select number of ODS-Cs within the PRCCR program received advanced continuing education. These central registrars analyzed new US data standards to identify applicable elements for the PRCCR and jurisdiction registries. Educational materials were developed to distill complex standards into a resource-appropriate context, addressing the disconnect between required granularity and local data elements. These tailored resources were then distributed digitally to all island registrars. The ODS-Cs also provide tailored training based on any challenges observed in the data submission process. RESULTS The educational approach led to sustained compliance with the CDC-NPCR program and its data standards. Central registrars provided mentorship, which was found to mitigate the professional isolation frequently reported by non-certified island registrars. Furthermore, the continuous data quality review and feedback mechanism enabled island registries to actively work toward continuous data quality improvement and case data enrichment goals. CONCLUSION PRCCR’s central registrar’s mentorship enables the collection of quality data that adheres to high-level standards while working within the local context. The centralized ODS-Cs also enable support for abstracting at the jurisdiction level, should a sudden need arise. Continued funding for a regional registry model with centralized technical assistance is critical to an impactful NCD surveillance system that produces useful information to guide policy, programmatic, or operational changes in cancer prevention and control.