Using the Cancer Registry to Conduct a Survey
- Staff time and expertise
- Survey administration
- Data processing
- Human subjects review
- Significant lead time
- Low response rates
- Data on barriers and facilitators of cancer genetic service use
- Data on patterns of cancer genetic service use by variables of interest
- Results used to inform educational activities and policy/systems change
Survey data may help programs identify barriers and disparities in access to and use of cancer genetic services, and inform the design and implementation of patient, provider, and systems resources and interventions. Following human subjects review, programs can use the contact information collected by the cancer registry to survey cancer survivors, their family members, or their reporting providers and institutions. These surveys can cover a wide array of topics, including—
- Use of genetic counseling and testing.
- Experiences with providers and health systems.
- Experiences and health services used after receiving genetic test results.
- Knowledge, attitudes, and beliefs about cancer risk and genetic testing.
- Use of direct-to-consumer genetic testing.
Policies and procedures for patient and provider contact may vary from state to state and may affect feasibility.
Oregon used data from its cancer registry to identify cancer survivors who met National Comprehensive Cancer Network referral criteria. It sent a survey to these cancer survivors and their health care providers to identify barriers to genetic counseling and testing. To get survivors’ contact information from the registry, Oregon had to complete a data request, meet cancer registry program requirements, and undergo a Science Team review (similar to an institutional review board). Surveys were also sent to the provider of record. The patient survey assessed barriers and facilitators to use of and access to cancer genetic services. Each survey mailing included an educational packet on the hereditary cancer syndrome associated with the case (Hereditary Breast and Ovarian Cancer syndrome or Lynch syndrome).
This activity required significant staff time to prepare and administer the surveys, conduct analyses, and report results. Survey costs included printing, postage (mailing and return), and incentives. Although Oregon had a low response rate (13% to 27%), respondents did increase their knowledge and awareness of hereditary cancer syndromes. These results will help Oregon develop activities to address barriers to genetic counseling and testing and focus their future outreach activities to address gaps.