Capitalizing on Central Registries for Expanded Cancer Surveillance and Research

Abstract

Background: State central cancer registries are an essential component of cancer surveillance and research that can be enriched through linkages to other databases. This study identified and described state central registry linkages to external data sources and assessed the potential for a more comprehensive data infrastructure with registries at its core.Methods: We identified peer-reviewed papers describing linkages to state central cancer registries in all 50 states, Washington, DC, and Puerto Rico, published between 2010 and 2020. To complement the literature review, we surveyed registrars to learn about unpublished linkages. Linkages were grouped by medical claims (public and private insurers), medical records, other registries (eg, human immunodeficiency virus/acquired immunodeficiency syndrome registries, birth certificates, screening programs), and data from specific cohorts (eg, firefighters, teachers).Results: We identified 464 data linkages with state central cancer registries. Linkages to cohorts and other registries were most common. Registries in predominately rural states reported the fewest linkages. Most linkages are not ongoing, maintained, or available to researchers. A third of linkages reported by registrars did not result in published papers.Conclusions: Central cancer registries, often in collaboration with researchers, have enriched their data through linkages. These linkages demonstrate registries' ability to contribute to a data infrastructure, but a coordinated and maintained approach is needed to leverage these data for research. Sparsely populated states reported the fewest linkages, suggesting possible gaps in our knowledge about cancer in these states. Many more linkages exist than have been reported in the literature, highlighting potential opportunities to further use the data for research purposes.

An ounce of prevention: Medicaid's role in reducing the burden of cancer in men with HIV

“…Furthermore, data from multiple payers, like those found in All Payer Claims Data, could address some of the limitations noted by the authors related to differences between those who are enrolled in Medicaid and the general population and the potential for enrollment in Medicaid because of complex or high‐cost conditions. An opportunity exists to improve the nation's data infrastructure to address these types of questions 5,6 …”

“…An opportunity exists to improve the nation's data infrastructure to address these types of questions. 5,6 Koroukian and colleagues' study is especially important because it reports on a growing population that is experiencing the convergence of 2 previously fatal health conditions, which are now becoming chronic conditions. The implications extend far beyond this single study.…”

Building Data Infrastructure for Disease-Focused Health Economics Research

“…Depending on data availability, it may be possible to link individuals insured under the same plan, which could allow health care assessments at the household level. In the absence of APCDs, researchers often rely on single payers (eg, Medicare 5,6 and Medicaid 7 ) or proprietary datasets at the institution or health system level that are limited in their ability to track patients across payers and providers to create a comprehensive picture of health care use and costs 8,9 …”

“…Colorado creates longitudinal identifiers for each patient to allow tracking of patients over time and across insurance payers. Linking APCDs to cancer or other registries may be applicable to other states and conditions where registry and cohort data exist and can be linked to claims data 9,19–21 …”

“…In the absence of APCDs, researchers often rely on single payers (eg, Medicare 5,6 and Medicaid 7 ) or proprietary datasets at the institution or health system level that are limited in their ability to track patients across payers and providers to create a comprehensive picture of health care use and costs. 8,9 APCDs, however, are limited to people who are insured, making it impossible to track care provided to people with the least access to health care or those who experience gaps in coverage. 10 Race and ethnicity are incomplete in claims.…”