Registry Operations Resources

Informatics is the science concerned with gathering, manipulating, storing, retrieving, and classifying recorded information. Informatics develops new uses for information technology to solve specific problems in areas as diverse as biology, fine arts, and economics. Informatics is also interested in how people transform technology, and how technology transforms us.

Informatics incorporates at least three domains—

1. Technology and its application.
2. Information organization and structure.
3. Human behavior and communication related to the other two domains.

While informatics can play a critical role in many areas in the use of information, two focus areas are applicable specifically to the NPCR: public health informatics and cancer surveillance informatics.

Public health informatics is “…the systematic application of information and computer science and technology to public health practices, research and learning.” It is the efficient and effective organization and management of data, information, and knowledge generated and used by public health professionals to fulfill the core functions of public health—assessment, policy, and assurance.

References

• Yasnoff WA, O’Carroll PW, Koo D, Linkins RW, Kilbourne EM. Public health informatics: improving and transforming public health in the information age. Journal of Public Health Management and Practice 2000;6(6):67–75.
• Kambic R. Public Health Informatics Lecture. Johns Hopkins University School of Public Health.

Cancer surveillance informatics is the systematic application of information and computer science and technology to cancer surveillance practices, research, and learning. Cancer surveillance informatics projects will evaluate aspects of the cancer business to identify better ways to use emerging technology to incorporate automated processes and electronic data exchange. The concept of capturing data once and using it to meet multiple needs will become more critical as the need for information increases across the health care community. Cancer surveillance informatics projects will evaluate existing data streams such as insurance claims data that may meet data requirements for cancer registries, alleviating the need to create special data streams for cancer registries.

Advancing E-cancer Reporting and Registry Operations (NPCR-AERRO)

NPCR-AERRO is a collaborative effort to advance automation of cancer registration by developing a set of cancer surveillance models, requirements, and products that—

• Identify and describe consistent processes and data reporting standards.
• Can be used by multiple data sources for reporting to hospital and state cancer registries.
• Include products, infrastructure, and implementation guidelines supporting electronic reporting from data sources to registries and from registries to the national programs and organizations, including the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program, NPCR, the Commission on Cancer (CoC), and the North American Association of Central Cancer Registries (NAACCR).

Reporting Pathology Protocols (RPP) Projects

The purpose of the Reporting Pathology Protocols (RPP) projects was to implement a new means of collecting and transmitting pathology information using the SNOMED CT encoded College of American Pathologists (CAP) cancer checklists and Health Level Seven (HL7) messages. The new SNOMED CT encoded CAP cancer checklists ensure information is recorded and coded in a fixed set of data items at the pathology laboratory.

Conformance Testing Software—HL7 Messaging Workbench Project

Conformance testing measures whether a product implements a message specification faithfully. CDC’s NPCR funded the Messaging Workbench project to develop a tool states and laboratories can use to ensure anatomical pathology laboratory electronic pathology reports conform to the NAACCR HL7 E-Path Version 2.3.1 Specification and Implementation Guide.

HL7 Clinical Document Architecture (CDA) Release 2 Pilot Project

CDC’s NPCR, in collaboration with vendors, providers, partners, and standard setters associated with the NAACCR, developed an implementation guide that uses the HL7 Clinical Document Architecture (CDA) for cancer registry abstract reporting. NPCR funded the pilot project to provide CDA experts to develop this product.