HEALTHCARE BIG DATA IS ADVANCING in California and all pathologists in the Golden State will be required to submit data to the state’s cancer registry beginning in 2019.
California’s new law to support the state’s cancer registry is the latest example of an effort to ensure the timely collection of complete sets of data needed to foster population health management and personalized medicine. Pathologists and clinical lab administrators outside of California should expect similar initiatives in the coming years.
California took its first steps to develop a registry of cancer cases in the 1970s. Then, in 1985, the California Cancer Reporting Law was signed into law. That same year, the California Cancer Registry (CCR) was established.
“The California Society of Pathologists (CSP) supported this latest legislation,” stated Robert J. Achermann, Executive Director of CSP. “In recent years, the CSP has backed a bill in the California legislature to improve the cancer registry by collecting de-identified patient data on each cancer case. The data would include the diagnosis, when it was made, the treating physician, and other data relevant to researchers and clinicians treating similar patients.
“In the past few years, the CSP board was supportive of reforming the cancer registry process in California,” said Achermann. “We recognized that the reporting process for the registry was unfair regarding who was supposed to report. As it was structured at that time, any provider in the care chain could report, meaning there was no consistency in the reports. Also, there were long delays in submission of cancer care reports, sometimes as long as 12 to 18 months.
“This created a problem,” he continued. “The cancer registry folks spent considerable time sending staff to hospitals looking through medical records to identify cancer cases. The process was inefficient and ineffective.
Seizing an opportunity
“Seeing these deficiencies, our members started talking with members of the legislature to improve the process,” he explained. “Those conversations led to the creation of the California Cancer Data Consortium, which brings together physicians, the cancer registry people, healthcare systems, hospitals, and others to update the registry process.
“Our board saw an opportunity to put pathologists in the proper place in this equation,” Achermann said. “Pathologists are often the ones making the diagnosis of cancer; so they should report that data. The College of American Pathologists also is active in such reporting efforts and our initiative is similar to theirs.
“Here at CSP, we help pathologists to improve the completeness, accuracy, and usefulness of the data they report,” he noted. “Our goal is to ensure that the data will be retrievable, usable, and searchable in terms of the types of data, location, types of cancer, and the demographics of the patients involved. Getting data reported consistently would make the registry much more powerful and more useful than it has been. In turn, it will support clinical trials and improve patient outcomes as well.
“The CSP also is mindful of any increased burdens on pathologists and for those who may not be using the synoptic reporting process contained in the CAP eCancer checklists,” he added. “The goal is to allow pathologists to submit their reports electronically without entering discrete data and working toward possible additional compensation for their reporting efforts.
“Eventually we expect to have data on every patient diagnosed with cancer,” added Achermann. “This data will include when the diagnosis was made, who made the diagnosis, what type of cancer was identified, the treating physician, what treatment the physician prescribed, what care was delivered, the outcome for the patient, and the patient’s prognosis over time,” Achermann said.
“Having all that data in one place—the California Cancer Registry—will be useful for anyone conducting clinical trials on certain types of cancer or other conditions,” he added. “It could become a treasure-trove of data for drug companies developing treatments. We are all enthusiastic about the possibilities that could come from aggregating this data and making it available almost in real time.
“When your data is behind schedule in terms of submission and the quality of the data is poor and not searchable in a meaningful way, you can’t answer questions about cancer clusters,” he said. “So, just in that one area, improving this registry could help to improve cancer care, patient outcomes, and possibly reduce costs as well.
“The implementation guide for reporting is near completion and the CSP wants to ensure that practicing pathologists can adapt and comply with any obligations,” he added.
“As we begin to collect data from pathologists, in the long-term, we envision that we will capture data from radiation oncologists, medical oncologists, and other physicians,”concluded Achermann.
Contact Robert Achermann at 916-446-6001 or firstname.lastname@example.org.
Pathology Data Is Essential to California Cancer Registry
ONE ISSUE TO BE RESOLVED is whether pathologists who submit information for the California Cancer Data Consortium would need to be paid to ensure that they submit data on every cancer patient. “Under the new law, there’s an obligation for pathologists to report this data directly,” stated Robert Achermann, Executive Director of the California Society of Pathologists. “If pathologists support this initiative, does that mean that pathologists should pay for data collection as well? “Recently, the discussion has been about how to avoid creating an additional burden on pathologists to report discrete data elements as opposed to submitting data electronically by sending in a copy of their pathology report,” he added.
“As we look at implementation of this new reporting law, we want to make sure that our members and other pathologists are not unduly burdened by this initiative,” Achermann said. “We are still considering whether a financial incentive is needed or not. If we can develop a system that eliminates much of the administrative staff time to send people to hospitals looking through medical records, then there might be funding available to help pathology groups and software vendors to submit the data effectively and efficiently.”