How CDC Speeds Up Cancer Data Reporting
CDC is developing a new cloud-based computing platform for cancer surveillance to make cancer data available faster.
Cancer control coalitions, health departments, researchers, and others use United States Cancer Statistics data to—
- Track cancer trends over time.
- Guide planning and evaluation of cancer control programs.
- Help set priorities for allocating health resources.
- Do cancer research.
That’s why it’s important to collect cancer data as quickly as possible, and make sure the data are accurate.
How Cancer Data Are Collected
In most hospitals, trained staff members called registrars look at cancer patients’ medical records. They enter information about the patient, the cancer the person has, and the treatment the person receives in the hospital cancer registry system.
Data from the hospital cancer registry are sent to the central cancer registry in the hospital’s state or territory. Registrars in the central cancer registry make sure the data are complete and correct. They also collect more data from hospitals that don’t have their own registry and from doctor’s offices, pathology laboratories, and other sources.
Once a year, central cancer registries send data to CDC’s National Program of Cancer Registries or the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program. The data they send don’t identify any specific person. CDC and NCI combine the data into the United States Cancer Statistics. You can see these data in the Data Visualizations tool.
This blog post explains why it takes 2 years to see cancer data and how a modern computer system can speed it up.
Collecting Information in Pathology Reports
To find out if you have cancer, your doctor may take a small tissue sample, called a biopsy, and send it to a pathology laboratory. At the laboratory, a doctor called a pathologist looks at the tissue carefully under a microscope. The pathologist describes the tissue in a pathology report. The laboratory sends the pathology report to your doctor. If you have cancer, your doctor uses the information in the report to prescribe the best treatment.
More than 90% of cancers are diagnosed through pathology reports. So these reports are an important source of data about a person’s cancer. Laboratories send the reports to central cancer registries as well as the doctor who requests them.
CDC developed a way for laboratories to send pathology reports to registries electronically instead of on paper. CDC staff helped pathology laboratories use the Public Health Information Network Messaging System (PHINMS) to send pathology reports. To use PHINMS, each laboratory must set up a separate electronic connection with the central cancer registry system in each state or territory it serves. This is a lot of work for large laboratories.
Moving to Cloud-Based Computing
In October 2018, CDC began a project with the Association of Public Health Laboratories (APHL) and Quest Diagnostics (Quest), a national pathology laboratory. They wanted to find out if the APHL Informatics Messaging Services (AIMS) platform could be used instead of the PHINMS to send pathology reports electronically to central cancer registries.
The AIMS platform is cloud-based. That means it is available on the Internet and can connect to many different computer systems. The AIMS platform lets Quest send all of its pathology reports to one system, which then routes each report to the correct cancer registry. This way, Quest no longer needs to connect to every central cancer registry individually.
Quest can send pathology reports from about 35 regional laboratories to the AIMS platform. Registries in Louisiana, Nevada, and California were the first to test receiving reports from the AIMS platform. A second test group of 11 registries is getting ready to try using the AIMS platform. The goal is for all central cancer registries in the United States to use the AIMS platform.
CDC is also developing its own cloud-based computing platform to support cancer registries nationwide. The AIMS platform will be one of many sources to exchange data with this new platform. CDC plans to use its cancer surveillance cloud-based computing platform to host Registry Plus software, receive patient data directly from health care providers, and allow authorized users to access the data.
How CDC Is Making Cancer Data Available Faster
Central cancer registries in each U.S. state and territory collect information from hospitals, doctor’s offices, radiation therapy centers, and other places where cancer patients get treatment, as well as pathology laboratories. The registries review much of the information manually to make sure it is correct and complete. This process takes a lot of time, which is why it can take more than two years for the data to be available.
For more than 20 years, CDC’s National Program of Cancer Registries has developed many ways to simplify and speed up this process, including—
- Registry Plus and NPCR-EDITS software programs.
- The Electronic Pathology (ePath) Implementation Project, which tested a way for pathology reports to be sent from laboratories to central cancer registries electronically using PHINMS.
- The Natural Language Processing Workbench, which explored ways to convert narrative text in medical reports to computer-readable data automatically.
More than 1.7 million new cases of cancer are reported every year, and that number is expected to grow. CDC plans to make these data available to registries in near real-time through its new cancer surveillance cloud-based computing platform. Faster case reporting can improve care for cancer patients and save lives.
- Jones DE, Alimi TO, Pordell P, Tangka FK, Blumenthal W, Jones SF, Rogers JD, Benard VB, Richardson LC. Pursuing data modernization in cancer surveillance by developing a cloud-based computing platform: real-time cancer case collection. JCO Clinical Cancer Informatics 2021;5:24–29.
- Pollack LA, Jones SF, Blumenthal W, Alimi TO, Jones DE, Rogers JD, Benard VB, Richardson LC. Population health informatics can advance interoperability: National Program of Cancer Registries electronic pathology reporting project. JCO Clinical Cancer Informatics 2020;4:985–992.
- Blumenthal W, Alimi TO, Jones SF, Jones DE, Rogers JD, Benard VB, Richardson LC. Using informatics to improve cancer surveillance. Journal of the American Medical Informatics Association 2020;27(9):1488–1495.