Adding or Expanding Data Fields Collected by the Cancer Registry
- Staff time
- Data collection costs
- Stakeholder buy-in
- Authorization to collect additional data
- Additional data points for surveillance
- Data for program planning
State health departments can work with the cancer registry to add or expand data fields they collect. New fields can provide valuable surveillance data that can be used in program planning to develop activities and interventions. New fields could include family history of cancer, referral to or use of genetic counseling, use of germline genetic testing and results, or results of biomarker tests such as microsatellite instability (MSI) or immunohistochemistry (IHC).
However, determining the feasibility of collecting new data fields is often a time-consuming process that involves working to create broad agreement on adding the new variable among health systems and cancer registrars and conducting feasibility studies on each variable. Before a new variable can be added, health systems and registrars need to ensure it can be abstracted through medical record reviews. States should weigh the added value of the new variable against the costs of data collection and the added work for registrars to collect the new variable.
Colorado developed a series of cancer registry codes to monitor the uptake of universal testing for Lynch syndrome (LS)-associated tumors and use of genetic counseling and testing among cancer patients in partnership with their state cancer registry and other state cancer programs, supported by additional funding received by the National Program of Cancer Registries (NPCR). New fields included MSI testing for colorectal and endometrial cancers, BRAF for colorectal cancers, Ashkenazi Jewish ancestry, referral to genetic counseling, and referral for genetic testing.
The Central Colorado Cancer Registry staff assessed feasibility by developing protocols for capturing relevant data and coding by reporting facilities. National Comprehensive Cancer Network guidelines were used to develop coding standards in the software. Medical record abstraction was then conducted by facility cancer registrars starting in 2018. The central registry then evaluated the quality of data submitted for these new fields by assessing completeness and representativeness.
A steep learning curve was associated with developing the updated code sets to merge the new items into existing data collection and abstraction protocols. The cancer registry found that while some data were already being collected, registrars needed further training on abstraction and coding processes. Some of the biggest challenges faced in the inclusion of these new fields concerned cancer registry infrastructure, specifically accessing and updating software, access to records, and time. The development of protocols, abstraction, and evaluation of new fields was a 2-year process. BRAF for colorectal cancers was added to the standard data items collected by NPCR starting in 2021.
Utah genomics program staff, the state cancer registry, and genetic counselors from two large health care systems worked together to determine if it was feasible for health systems to report whether eligible patients received genetic services (genetic risk assessment, counseling, or testing) for Hereditary Breast and Ovarian Cancer syndrome (HBOC). They tested the feasibility of reporting by abstracting data on family cancer history, referrals and use of genetic services, and results of testing from medical records of a random sample of eligible cases. Results indicated that although it was feasible to abstract data on family history related to HBOC, these fields were too complicated to collect consistently with low levels of error.
The registry decided to collect three variables—referral to genetic counseling, HBOC germline test performed, and HBOC test results—starting in 2019 on all male breast cancers, all in situ and invasive breast cancers in women aged 60 years and younger, and all invasive ovarian, fallopian tube, and primary peritoneal cancers. The partners worked with stakeholders across the state to define the new reportable data items, which are now mandatory reporting items across the state. The cost of the activity included genomics program staff time and a subcontract with the registry to pay staff to perform additional data abstraction and analysis.