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 completeness and accuracy of critical data items maintained by each state.

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
• Evaluated multiple primary cancers for accuracy in reporting

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.