The Affordable Care Act’s promise of expanded coverage and better care has inspired a lot of people to look for ways to improve treatment decisions and help patients lead healthier lives. Here in California we have an opportunity to accelerate improvements in cancer care — an issue that is urgent and important.

More than one million living Californians have a history of cancer. Last year more than 55,000 Californians died of cancer, and doctors diagnosed more than 150,000 new cases.

CHCF recently convened an expert workgroup to discuss how the California Cancer Registry (CCR) could produce metrics on the quality of cancer care that would be usable by patients, providers, payers, and policymakers. The workgroup developed a proposal for building on California’s existing registry to create new quality-reporting capabilities. Its recommendations identify practical ways to re-engineer an existing publicly sponsored resource to improve the quality of care. This information can help inform patients, providers, payers, policymakers, and others. It can also help providers improve the delivery of care.

The CCR is a statewide surveillance system recognized as one of the leading cancer registries in the world. The 10 regional components of the registry possess a wealth of information regarding newly diagnosed cancers, including tumor staging and the fact and cause of death. These data are linked to death records and form the basis of the estimates of life expectancy following diagnosis. To date, the CCR has collected detailed information on more than 3.4 million cases of cancer among Californians diagnosed since 1988.

The CCR data tell us a great deal about who gets cancer and who dies from it. What they do not reveal is the quality of the care provided or the cost. By linking CCR data to information on treatments provided after the initial diagnosis from claims/utilization and electronic medical records, we could understand more about recurrence, follow-up treatments, comorbidities, and survivorship. This would enhance care and extend lives. This is the information patients, families, providers, payers, and policymakers want and need.

Written in the 1980s when the public was concerned about cancer clusters resulting from occupational and environmental exposures, California law authorizing the CCR did not foresee the use of the data for quality improvement and public reporting purposes. Some argue that the state could revisit its interpretation of current law and provide for these important uses of the data; others believe statutory change is needed. Whether through administrative action or legislative change, the data contained in the CCR offer a treasure of information relevant to improved cancer care.

California can lead the nation in leveraging a tool developed and successfully deployed for public health purposes to help providers deliver better patient care and health outcomes.

Learn more about the workgroup’s recommendations and view a recent briefing convened by CHCF in Sacramento.

Sandra Shewry

Sandra Shewry served on staff at CHCF from 2012 to 2022. She was vice president for CHCF’s External Engagement team and also served as CHCF’s director of State Health Policy. Prior to joining the foundation, she was president and CEO of the Center for Connected Health Policy, a nonprofit organization working to remove policy barriers to the integration of telehealth technologies into California’s health care system. Sandra held a number of senior leadership positions within California state government, including director of the California Department of Health Care Services, which administers the state Medicaid program (Medi-Cal). Other programs under her leadership included public health, emergency preparedness, and licensing of health facilities. She also served as the executive director of the California Managed Risk Medical Insurance Board. Sandra received bachelor’s degrees in community studies and psychology from the University of California, Santa Cruz, and master’s degrees in public health and social welfare from the University of California, Berkeley.

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