Cancer Registries and the Evolving Role of Big Data in Cancer Care

A Conversation With Peter Paul Yu, MD, FACP, FASCO, and Sandy Jones, Public Health Advisor, CDC


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Peter Paul Yu, MD, FACP, FASCO

Sandy Jones

For cancer registries to function in real time, patients with cancer need to be identified as analytic cases as soon as possible after diagnosis. Thus, care of a patient diagnosed with cancer begins with the pathology report.

—Peter Paul Yu, MD, FACP, FASCO
Data collection from providers presents new challenges, since the infrastructure for reporting is less mature than it is in hospitals. Certified electronic health record technology can address help providers by identifying reportable cancer cases and treatments and reporting them automatically or after provider verification.

—Sandy Jones

In 1956, the American College of Surgeons encouraged the development of hospital-based registries, but for the most part, these efforts were clumsy, inaccessible card files of data. Today, advanced microcomputer technology has increased the ability to not only collect and cull cancer data but also to share and use data to improve value and clinical decision-making. The California Cancer Registry is one example of how we can leverage state registries to measure and improve cancer care.

To shed light on this exciting issue from different perspectives, The ASCO Post spoke with immediate past ASCO President Peter Paul Yu, MD, FACP, FASCO, and Sandy Jones, public health advisor with the Division of Cancer Prevention and Control at the Centers for Disease Control and Prevention (CDC).

From the Perspective of Clinician Thought Leaders

In your ASCO presidential address, you said that the “advent of precision medicine and the transition to digital health are forces driving unprecedented change in oncology.” What part do cancer registries such as the California Cancer Registry play in that digital health force?

Dr. Yu: Cancer registries provide insights into who among us are being diagnosed with cancer, what the incidence of various types of cancer are, and how those patients with cancer are being treated. In addition, registries inform us about environmental and socioeconomic risk factors, including but not limited to health-care disparity populations.

Critical public health decision-making is dependent upon registry data. Cancer registries such as the CDC National Program of Cancer Registries (NPCR) and Surveillance, Epidemiology, and End Results (SEER) have begun to consider their role in quality improvement, value-based medicine, and precision medicine. Alongside the recasting of the work of registries to align with changes in health delivery, registries are looking to increase the variety of cancer data collected to answer emerging questions and to collect that data in real time with less manual effort. In that regard, registries face the same challenges that health-care providers do: how to collect important cancer data as a routine product of efficient daily work instead of distracting overburdened health-care providers from their primary job of caring for individual patients.

Since the public cancer registries carry the mandate of statutory reporting of cancer data, they will be important drivers of digital reporting of cancer data from electronic health records and laboratory information systems used in clinical and anatomic pathology laboratories.

As a nation, we need a comprehensive data architecture that achieves interoperability of digital cancer data, flowing through trusted data hubs and repositories, and that includes the rapidly growing volume of cancer panomics data.

In effect, this will be an oncology Internet community linking data repositories, knowledge bases, search capability, and outcomes measurement built around secure user access points.

Delivering Better Care

As a clinician, how can the massive data sets in cancer registries help you deliver better care for your patients?

Dr. Yu: One of the main functions of cancer registries is to link all of the cancer data describing an individual patient with cancer. In the highly fragmented health-care delivery we have in the United States, cancer registries can function as the state or national data center for health-care systems seeking to backload missing information. This will require bidirectional data flow so that information is allowed to be queried and shared from the cancer registry. This alone is a transformative step that will require legislative and regulatory changes.

Cancer registries can make public performance and outcomes measures that help patients and payers in decision-making. Recently, the California Cancer Registry has made available to the public the number of cancer operations performed annually at every hospital in California.

The Pathology Report

Pathology is the vital behind-the-scenes entity of cancer care. How does the College of American Pathologists’ electronic cancer checklist fit into the larger oncologic picture of cancer registries?

Dr. Yu: For cancer registries to function in real time, patients with cancer need to be identified as analytic cases as soon as possible after diagnosis. Thus, care of a patient diagnosed with cancer begins with the pathology report.

The College of American Pathologists (CAP) has an exemplary track record of standardizing the descriptive data elements for individual cancer types. However, prior to the digital health age, these data were recorded in pathology reports as free text. The CAP electronic cancer checklist brings this into the digital age through the capture of these data, which are already being recorded by pathologists, as structured or searchable data. A more technical way of stating this is that the cancer pathology data are machine-readable. Automated transmission of such data to a cancer registry will alert registrars that a new patient file should be created and follow-up cancer data sought.

Cancer registrars will be freed up to spend more time on data analysis and less time on data collection. Important to clinicians is that once such data are digitally acquired, they can be used to guide clinical decision support tools, which provide guidance on appropriate workup and treatment planning and allow outcomes measurement.

From the Perspective of the CDC

As interoperable electronic health records move forward, “meaningful use” is a huge part of implementation. How does meaningful use interact with cancer registries?

Ms. Jones: Cancer reporting from ambulatory providers to central cancer registries was added as a new public health objective with Stage 2 Meaningful Use Reporting to cancer registries by health-care providers addresses current underreporting of cancer, especially certain types, including dermatologic, hematopoietic, and urologic cancers. In the past, most cancers were diagnosed and/or treated in a hospital setting where these data were primarily collected.

However, medical practice is changing rapidly, and an increasing number of cancer cases are not seen in a hospital. Data collection from providers presents new challenges, since the infrastructure for reporting is less mature than it is in hospitals. Certified electronic health record technology can help providers by identifying reportable cancer cases and treatments and reporting them automatically or after provider verification. More than 16 central cancer registries are receiving test or production data electronically from physician offices in their states.

Electronic Pathology Reporting

Please describe electronic pathology reporting and how the CDC interacts with CAP.

Ms. Jones: The Electronic Pathology Implementation Project began in 2006 as a pilot project with the CDC Laboratory Corporation of America® Holdings, the CDC Office for Surveillance, Epidemiology, and Laboratory Services, the North American Association of Central Cancer Registries, and 18 central cancer registries. Due to its success, the pilot became an ongoing implementation project, which continues to expand to additional states and laboratories.

Currently, the project includes 23 national and/or regional laboratories that successfully transmit cancer pathology and biomarker data electronically to more than 42 central cancer registries. We have worked closely with CAP since 1998 to develop standard reporting protocols and checklist templates that pathologists can use to capture standard discrete data elements in the laboratory system, which can then be used to report to central cancer registries for public health surveillance purposes.

Most recently, a national reference laboratory that has implemented the CAP electronic cancer checklist pathology and biomarker templates will begin reporting the CAP electronic cancer checklist and narrative pathology report data to central cancer registries. We are excited that this will be the first implementation of seamless electronic reporting of the CAP electronic cancer checklist data from a national reference laboratory to central cancer registries.

Closing Thoughts

Any final comments on this important work?

Ms. Jones: CDC remains committed to these innovative projects to modernize cancer registry reporting so that accuracy and timeliness can be improved.  ■

Disclosure: Dr. Yu and Ms. Jones reported no potential conflicts of interest.

 



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