Integration of Cancer Screening Data into Routine Cancer Surveillance Systems: A Florida Pilot Project

Abstract

Introduction: Integration of screening data into routine cancer surveillance systems can create more robust data systems to inform cancer prevention and control activities. Currently, state central cancer registries do not routinely collect breast and cervical cancer screening data as part of state cancer surveillance activities. Florida conducted a pilot study involving: (1) linkage of breast and cervical cancer screening data from the Florida Breast and Cervical Cancer Early Detection Program (FBCCEDP) from 2009 to 2021 to the Florida Cancer Data System (FCDS) database to capture screening data for matched cancer cases in the FCDS; and (2) evaluation of the feasibility of developing a population-based breast and cervical cancer screening surveillance system by capturing electronic screening data from private health care providers.

Methods: In 2018, the FCDS worked with the Florida Department of Health to identify data partners for the 5-year cancer screening pilot project funded by the Centers for Disease Control and Prevention. Engagement of project partners required extensive review of available screening data; data standards and formatting; data transmission schedules and methods; and processing procedures. The FCDS developed a database to integrate multiple source data sets into a single database whereby linkage to the central cancer registry could be performed.

Results: The FCDS worked with Suncoast Health Systems, a clinical practice in the Hillsborough region of Florida, and the FBCCEDP to evaluate data availability, standardization of data sets, and data submission schedules for the pilot project. Extensive meetings and data reviews were conducted with both partners in the first phase of the project. The FCDS developed automated data processing procedures to integrate the data into a single cancer screening database and then linked records to the central cancer registry data set.

Discussion: Registry collaboration with the FBCCEDP and Suncoast team on data quality and standardization has produced positive results. The project required extensive review of data and produced many lessons learned for development of a cancer screening surveillance system. Our pilot project depended on partnership building, commitment to data quality, and consistency in data submission practices.

Keywords: Florida; data quality; data standardization; linkage.

Figure 1

Consolidated Patient and Screening Database Flowchart