Cancer Moonshot: The CAP Leading Cancer Data Sharing Effort
California wants to be the first state in the country to standardize the way cancer data are reported to its central registry, making it faster and easier to collect information from oncology labs.The effort comes at a time when pathologists have been transitioning from paper-based reporting to electronic data collection.
The College of American Pathologists has been leading this effort by introducing an electronic cancer checklist, which it hopes will streamline and expedite the process for sharing and analyzing information.The California Health Department is three years into its efforts to work with CAP and move pathology labs in the state onto the electronic cancer checklist.Although laboratories across the country have been moving toward digital reporting, they aren't necessarily doing so in a way that makes it easier to track and analyze data. It also can take up to two years for the reports to fully be shared with state and federal registries.
“What most people did is take the exact paper and put it in the screen,” said Dr. Richard Friedberg, a pathologist and president of CAP. “I liken it to taking a PDF of an Excel sheet. You're going to have pictures of words and pictures of numbers instead of something usable.”The current method of cancer reporting relies on what's known as unstructured data; it's up to physicians to describe what they're seeing when they analyze a tumor specimen. CAP's electronic cancer checklist aims to standardize both the format for reporting information as well as the terminology that's used.
“If the data is entered in a structured format,” Friedberg said, “you can actually do something with it.”The electronic cancer checklists also will make it easier for cancer centers to do their own internal assessments, something that will be necessary under physician reimbursement formulas that take quality and outcomes into account.
For instance, a cancer program can expect that roughly 70% to 80% of breast cancer tumor samples will be Estrogen Receptor (ER) positive, or linked to an overexpression of the HER2 protein. If a lab is reporting a high number of negative tests, “that should tell you something,” said Dr. Patrick Fitzgibbons, chief pathologist at St. Jude Medical Center, part of St. Joseph Health in Irvine, Calif. The system has been using the electronic cancer checklist in a number of its hospitals.Cancer centers also need to report data to meet accreditation requirements, and standardizing the reporting format could relieve some of the pressure on administrators as well. They'll be better able to track their own data as well as benchmark it against other deidentified labs.
“There's a lot of burden; there's a lot of administrative work involved in that,” Fitzgibbons said. “They have the ability to do it faster. They can do regular audits to make sure they're doing it right.”Despite the benefits, the majority of pathology labs in the U.S. are not yet using CAP's electronic reporting format. The closest model is Ontario, where labs have been reporting data to the central provincial registry using the electronic cancer checklist for more than four years.
Three years into its own effort, California still has hundreds of laboratories that are not entering data in a structured format, according to the Health Department.“(The California Cancer Registry) will continue to support organizations and individual pathology labs that have a desire to move to structured pathology reporting,” a spokesman said in an email. “CCR supports the transition to structured pathology reporting because of improved data quality, improved data timeliness and increased efficiency within cancer registry operations.”CAP is hoping to gather more momentum around the transition to its electronic cancer checklist on the heels of the Obama administration's National Cancer Moonshot Initiative , which was introduced in January and aims to facilitate cancer research.
The group believes that moving to structured data reporting will allow record-keeping to be more complete and more precise, particularly at a time when the oncology field is making huge strides in molecular medicine and genomics.“As we get down to understanding cancer from a molecular level … the description of it being a large blue cell is somewhat weak,” CAP's Friedberg said. “Having data in the appropriate level of granularity is very important. We want to make sure we're all speaking the same language and improving the health of the patient.”