How do we know cancer data is accurate for use in research?

Challenge

Population-based cancer registries are an essential part of the cancer surveillance system for planning, operating, funding, and evaluating cancer control programs. Complete and accurate data are necessary to estimate variations in population subgroups and changes among population subgroups over time.

All National Program of Cancer Registries (NPCR)-funded states are required by the Centers for Disease Control and Prevention (CDC) to participate in an NPCR-sponsored independent audit. For CDC, Westat is evaluating the 48 NPCR-funded central cancer registry databases for CDC to assess the accuracy of critical data items maintained by each state. Additionally, 2 other tasks were added to this new cycle. These include enhancing the validation online tool to share with the states for conducting internal or external audits and developing a Data Quality Assurance and Evaluation guidance document for the states.

Solution

Westat performed the following activities: 

• Developed a system to streamline the evaluation tasks, create efficiencies, and allow multiple users access
• Developed an evaluation schedule and sampling plan, contacting each state registry to introduce the process, and developing documents detailing the evaluation methodology and specifications
• Developed procedures for obtaining abstract- and merged-level data using a secured document server for document exchange
• Developed an SQL database to systematically record the reviewed abstract- and merged-level data and provided a means to deliver the discrepancies to the state registries for reconciliation
• Conducted the evaluations and reported and presented the results through debriefing conferences with each state
• Developed a dashboard using Power BI to show the results of these evaluations to the individual states and how each state compares to the cumulative results for that evaluation year
• Enhanced the validation online tool used for conducting the evaluations for the states to conduct their own audits
• Evaluated quality and evaluation plans already in place for the central cancer registries and developed a quality assurance and evaluation guidance document to share best practices with the states

Results

Ultimately, the CDC wants to know how states measure accuracy of data within their databases. This information is used to develop focused training programs. Overall findings are presented at national meetings, and registries are encouraged to update their data based on the findings.

The Online Tool will allow the states to streamline the process for auditing large facilities, creating tables that could be shared with the facilities and used to measure accuracy to improve the quality of the data.

The Quality Assurance and Evaluation guidance document will detail the main resources, along with a summary of activities to meet the metrics of data quality from the standard setters.