Cancer Surveillance Messaging, Vocabulary, and Standards Workgroup

CDC and the National Cancer Institute (NCI) share a critical reliance on high-quality, up-to-date biomedical and public health information systems to fulfill their missions to maintain and improve the nation's health. Each agency must collect, manage, and use enormous volumes of information, some of which is common to both agencies. Terminology is an essential infrastructure for biomedical and public health information systems; epidemiologic and clinical research terminology is mission critical for both agencies. Each agency has ongoing initiatives, such as CDC's Public Health Information Network (PHIN) Vocabulary Services (VS)/Messaging Services (MS) and the NCI's Enterprise Vocabulary Services (EVS), that address the terminology, messaging, and/or information repository needs of one agency but are of interest to the other.

Initial focus. The Cancer Surveillance Messaging, Vocabulary, and Standards (MVS) Workgroup is a joint initiative of CDC and the NCI to promote harmonization of controlled terminology, data standards, and message specifications used to collect and report cancer data for public health and research purposes. This workgroup will initially focus on activities within the CDC and the NCI, with plans to broaden workgroup scope and participation over time. A key initial focus is to improve the compatibility and completeness of the PHIN VS and NCI's EVS, analyzing areas of overlap and extending these resources with additional terminologies that are important for cancer surveillance and research.

Key projects. The workgroup will also look at key cancer information projects, such as NCI's Surveillance Epidemiology and End Results–Data Management System (SEER*DMS) and CDC's National Program of Cancer Registries–Modeling Electronic Reporting Project (NPCR-MERP), as well as non-cancer projects such as the National Health Information Network, AHIC, and HITSP, that can help identify best practices for messaging standards, standard vocabularies for cancer surveillance, and other technical and operational standards such as security.

Work Products and Contributions

The MVS Workgroup will look at short- and long-term opportunities for harmonization and integration between CDC and NCI, including

1. Harmonize terminology content and systems used in the CDC PHIN VS and the NCI's EVS as they relate to cancer surveillance and cancer surveillance research.



2. Analyze and map concepts and data item codes used in the NAACCR Volume II and Volume V to vocabulary concepts and codes contained in the PHIN VS and the NCI EVS.



3. Analyze existing terminologies and identify concepts required for cancer surveillance and cancer surveillance research that are not represented in the PHIN VS and/or NCI's EVS, and develop relevant concepts as needed.



4. Evaluate techniques and technology used to generate, transmit, parse, and validate HL7 message structures.



5. Identify and create, if necessary, HL7 message standards or implementation guides for data deemed relevant by the NPCR-MERP Hospital Operations Workgroup and Central Cancer Registry Workgroup.



6. Identify other technical standards required for cancer surveillance and surveillance research.



7. Promote compatibility with broader national and international standards.



8. Develop a broader vision of what the MVS components of an Electronic Reporting Model should look like, and set strategic goals for moving toward that vision over the next five to ten years.

A final report will provide recommendations in the areas of standard messages, vocabulary standards, and other technical standards (such as security and message transport) for cancer surveillance purposes.

Membership and Organization

CDC's NPCR (Sandy Thames) and the NCI's Enterprise Vocabulary Services (Larry Wright) serve as co-chairs. A planning group will be convened to finalize the scope, priorities, and composition of the Workgroup. The planning group will include the co-chairs plus

• From CDC PHIN: Steve Steindel, Mamie Jennings Mabery, Austin Kreisler, Margaret Marshburn, and David Dobbs, and from NPCR: Ken Gerlach and Joe Rogers



• From NCI DCCPS: Marsha Reichman, Carol Kosary, Pete Schad, and Brad Hesse, from DEG: Chitra Mohla, and from EVS: Margaret Haber

The planning group will identify and invite other organizations and workgroup members, who are expected to include several key outside partners. Subgroups are expected to be set up to focus on specific areas, and many of the activities carried out within the MVS framework are likely to be based largely in such subgroups. The group meets on the first Friday of each month from 10:00 to 11:00 am Eastern Time via conference call.