Linking Cancer Registry Data with Other Data Sources
- Staff time
- Data request/access to data
- Feasibility of linkages
- Small numbers
- Ability to identify trends
- Ability to analyze data not typically recorded in the cancer registry
Cancer registry data can be linked with other data sources to help states better understand hereditary cancer burden, use of genetic counseling and testing, and other findings that can help with program planning. States have attempted to link registry data with research databases, all-payer claims data, and other insurance company claims data. While some programs have been successful, others have encountered challenges. Some states were unable to link any registry data with claims data because of administrative and logistical barriers, while others were able to link only a small number of cases.
Utah linked its cancer registry data with the Utah Population Database (UPDB), a research database with genealogy information on Utahan families at the University of Utah. UPDB can explore familial relationships, including family history of cancer, as well as demographic and other health-related information. Utah subcontracted with UPDB and had to obtain approvals through the university institutional review board and a separate governing body that oversees use of the database. The cost included the subcontract and staff costs for setting up the contracts, gaining approvals, creating queries, analyzing data, and disseminating findings.
Utah didn’t have any major challenges but did have to wait for approvals to access the data. Linking the family history fields to cancer registry data helped Utah identify a large pool of people who met criteria for genetic testing. These results helped the Utah Genomics Program understand the proportion of the state population eligible for genetic counseling and testing. It used this information to develop provider education materials and a manuscript, and to target activities to a variety of health care providers throughout the state.