Cancer Surveillance


This chapter aims to ensure that comprehensive and understandable cancer-related surveillance data is collected, disseminated, and used for evaluating cancer control, planning, and monitoring in California.

Cancer surveillance is conducted under the guidance of the California Cancer Registry. The critical data is based on the comprehensive collection, analysis, and reporting of the population’s cancer incidence and survival rates and informs efforts to prevent and control cancer through research, planning, and policy in the state.

But while the existing cancer surveillance has proven to be useful to evaluate cancer risk, improve early detection, and monitor the effectiveness of treatments, there is a growing need to improve surveillance data to identify underserved, marginalized communities and strengthen efforts in precision for tailored medical care.

  • Linking cancer registry data with other population databases supplements surveillance and research efforts in a cost-effective way.

  • More value is added by improving medical information and annotated data obtained from electronic health records (EHR), including demographic and clinical information that supports the identification and surveillance of cancer patterns in medically underserved populations.

The following objectives and strategies were developed to strengthen the CCR’s capacity to collect, process, analyze, and disseminate statewide cancer surveillance data.

Objective 1:

By 2025, expand CCR data dictionary requirements of gender identity categories, establishing a statewide data standard, in alignment with national gender minority initiatives.


Data source: CCR, 2020

  1. Align CCR requirements by filing an application to add a non-binary gender identity category to the current data dictionary with the goal to enhance data capture as well as to incorporate California State identification laws.

  2. Assemble a data governance working group, to identify and align categories including local registrars, SEER representatives, and national and state representatives focused on this effort, to ensure data categories are in alignment with CCR requirements and conduct a risk analysis of data alignment with national repositories from which the CCR sends data.

  3. Launch an education initiative for cancer tumor registrars (CTRs) and send notifications to cancer registries about this update in CCR requirements.

  4. Utilize relevant geographic indicators in cancer data analysis to understand reporting numbers by location for gender minority status including non-binary cancer patient categories and use this information in the CCR standard quality review process to monitor year over year progress, and to understand barriers in areas not meeting targets.

  5. Integrate census-derived measures of gender minority status categories into the analysis of CCR data to produce reports and maps characterizing and evaluating disparities in cancer risk, access and barriers to screening and proper cancer care, treatment, and outcomes for gender non-binary cancer patients.

Objective 2:

By 2025, enhance the capacity of cancer surveillance systems to produce and disseminate user-friendly cancer information and data reports that meet the needs of the general public, public health-based organizations, research-based institutions, and other stakeholders.


Data sources: CDPH and CCR

  1. Utilize relevant socio-demographic and geographic indicators in cancer data analysis to highlight disparities in cancer incidence, detection, and outcomes.

  2. Incorporate health survey data collected from the California Behavioral Risk Factor Survey (BRFS), CHIS, and the California Adult Tobacco Survey (CATS) to expand the analysis of trends in cancer incidence, mortality, and survival as they correlate with health behaviors, the prevalence of cancer risk factors, and adherence to cancer screening guidelines in California.

  3. Integrate census-derived measures of socioeconomic status into the analysis of CCR data to produce reports and maps characterizing and evaluating disparities in cancer risk, access and barriers to screening and proper cancer care, treatment, and outcomes.

  4. Promote the availability and accessibility of de-identified cancer data from CCR and statewide surveys through a variety of media, including more user-friendly web applications to graphically display measures of cancer risk, mortality, detection, and outcomes at statewide and smaller geographic areas.

  5. Ensure wider dissemination of cancer data by producing culturally and linguistically appropriate cancer reports.

Objective 3:

By 2025, enhance the value and use of CCR data to improve population health through the expansion of existing linkages with other population registries, repositories, and relevant data sets from the baseline of 6 to 9.


Data source: CCR, 2020

  1. Support efforts to enhance CCR data through linkages with administrative medical claims databases to obtain more detailed information on cancer treatment and recurrence. Strive for an All Payer-All Claims database for CCR linkage.

  2. Identify sources of environmental data that can be linked with the CCR database to expand population-based studies of the cancer risk in California.

  3. Establish a workgroup with the Department of Health Care Services (DHCS) to develop processes and goals for utilization of a linked CCR–Medi-Cal data set for improving the health of the Medi-Cal population in California. Set a timeline for linking all Medi-Cal enrollment data with CCR data.

  4. Expand usage of hospital discharge data from the Office of Statewide Hospital Planning and Development (OSHPD) to assess the quality of care and to complement case finding of incident cancer diagnoses not captured by the CCR reporting system.

  5. Obtain approval from the Vital Statistics Advisory Committee (VSAC) to perform annual linkages of birth files and death files with CCR data to assess vital status, evaluate pregnancy outcomes, and obtain blood spots for research and surveillance from the California Neonatal Biobank.

  6. Leverage the National Cancer Institute’s collaborations with external commercial and public partners through participation in demonstration projects to link cancer registry data with pharmacy claims and biomarkers/genomic databases to capture new data items relevant for evaluating cancer care outcomes for patients outside of clinical trials.