Tracking Cancer In Real Time
July 19, 2016
California is overhauling the way it collects information for its massive
cancer database in the hope of improving how patients are treated for
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 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
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
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.”
State law requires hospitals and cancer centers to report nearly all cancer
diagnoses to the state registry. Only about five percent of diagnostic
data is currently being sent in real-time, but California health officials
plan to expand that to as much as 10 percent by next June and 65 percent
by 2022. The ultimate goal is for 100 percent of reporting to be in real
time, though there is no specific time frame for achieving it.
Pathologists say the technological groundwork is already there, in part
because of the electronic medical records used by most hospitals. But
public health officials said that hospitals and cancer centers also may
have to upgrade their information systems.
Assemblywoman Susan Bonilla (D-Concord) has proposed legislation that would
require pathologists, beginning in 2019, to use an electronic medical
record or a web portal when they report cancer diagnoses to the state
registry. Currently, most pathologists report new diagnoses with written
paragraphs about a patient, and specific information is pulled out of
the text. Supporters of the bill argue that the registry needs to be updated
so it can be used by oncologists making critical decisions about treatments.
The electronic reporting forms used by hospitals in the pilot project,
developed by the College of American Pathologists, are checklists that
ask for specific information about patients and their cancer diagnoses.
The checklists can be much more easily analyzed than written paragraphs
about a patient, said Robert Hiatt, chair of the department of epidemiology
and biostatistics at the University of California, San Francisco. “You
don’t have to … try to interpret texts,” he said. “It
is collecting data from the get-go that is standardized. That is a very
The pilot project is a collaboration among the hospitals, the College of
American Pathologists, software developer mTuitive Inc., and the public
health department, which is the primary funder.
Having access to current and standardized data could change the way registries
are used, said Samantha Spencer, director of structured reporting at the
College of American Pathologists. In addition to being used for surveillance,
the registries — a “warehouse of critical information”
— could also improve patient care, she said.
“It is not just having the information,” Spencer said. “It
is acting on it.”
California public health officials said they will be able to generate real-time
surveillance statistics, identify cases for ongoing research and implement
a statewide program to improve the quality of cancer treatment.
“The environment within health care provider organizations and specifically
cancer reporting facilities has changed significantly in the last 10-plus
years,” the California Department of Public Health said in a statement.
“As technology in every aspect of our lives has drastically changed,
so has the expectation of physicians, laboratories, facilities and facility
groups about what types of data they need.”
This story was produced by
Kaiser Health News, an editorially independent program of the
Kaiser Family Foundation.