Overhauling the System: Tracking Cancer in Real Time

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A recent news story described the historic change occurring in the collection of information for California’s cancer database – a change that is the first of its kind in the U.S. and that is being led by the Cancer Data Modernization Consortium. This story is reprinted here with the permission of Kaiser Health News (KHN), a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Changes in California are in line with Vice President Joe Biden’s “cancer moonshot,” which aims to facilitate cures through better data sharing.

California is overhauling the way it collects information for its massive cancer database in the hope of improving how patients are treated for the disease.

Pathologists at a dozen hospitals in the state are part of a pilot project — the first of its kind in the United States — in which they are reporting cancer diagnoses in close to real-time to the California Cancer Registry. And they are using standardized electronic forms to make their reporting more consistent and accurate.

That represents a significant change for the registry, which traditionally relies on data up to two years old.

Physicians and researchers say the state’s partnership with St. Joseph Health in Orange County and UCSF Benioff Children’s Hospital in Oakland could become a model for cancer registries in other states. The changes in California are in line with Vice President Joe Biden’s “cancer moonshot,” which is intended, among other things, to facilitate cures through better data sharing, they said.

California’s registry, run by the state Department of Public Health, has amassed data on more than 4.5 million cancer patients since it began collecting information in 1988. It contains data on cancer diagnoses, including the type and extent of the cancer, screening, patient demographics, initial treatments and outcomes.

If the cancer registry had current information from around the state, medical providers could see what treatments were most effective and make more informed and timely decisions with their patients, said Dr. Lawrence D. Wagman, executive medical director of the Center for Cancer Prevention and Treatment at St. Joseph Hospital in Orange. That, he said, could improve outcomes.

Eventually, doctors could also use it to direct patients to suitable clinical trials, said Michelle Woodley, chief nursing information officer at St. Joseph Health System.

“Our driving force is making sure we can get the patient to the right treatment, the right trials as quickly as possible,” she said.

Real-time reporting in cancer registries might eventually make it easier for doctors to obtain important information on their patients if they go to different places for radiology, oncology and surgery — or if they switch physicians or hospitals. Currently, however, the data does not include patients’ identities.

Researchers regularly use the California database to search for trends, confirm potential cancer clusters and identify disparities in screening and outcomes.

They’ve used the information to determine that cancer patients on Medi-Cal have lower survival rates than those privately insured, that the risk of childhood cancers may vary depending on where the mothers were born, and that the social benefits of marriage could help patients live longer.

State cancer registries across the nation report data to the Centers for Disease Control and Prevention, where it is compiled into an annual report used for research.

But pathologists and medical providers said the lack of consistency and timeliness of the registries in California and elsewhere limits their value in helping individual patients. Registries have been used primarily for research and surveillance of cancer trends based on historic data.

“The current system is not working as well as it should,” said Bob Achermann, executive director of the California Society of Pathologists. “There are long delays … You would assume that a program that has been around as long as it has would be more sophisticated, but it is not.”

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