Standards are rules set by the governing authority. They reflect the organizational data needs of standard setters, including the need for consistency among groups. It is no accident that the history of oncology data standards is closely linked to groups that shaped their development. The standards that apply to cancer registries today evolved over the last century. The standard setters identified in this section established the principles of registry data and continue to influence cancer registry operations today. Their goals help determine what registries collect and how the data are processed and ultimately used. Within their spheres of responsibility, they are also the primary authorities to address questions on data and data management.
Registry data collected in the absence of shared standards contribute little beyond anecdotal data towards case management or cancer control. Shared standards ensure clarity of communication, protect the integrity of data when pooled or compared across multiple sources, and focus attention on key aspects of cancer of care or cancer control.
Data collected by a cancer registry are useful on several levels. The cancer registry records personal and medical information necessary for planning and evaluating the patient's case management. The registry data provide administrative information for facility planners, cancer committees, and practitioners. When the data are consolidated by population-based central registries, they are used by government and private agencies for developing and evaluating cancer control programs. Registries provide a rich source of data for investigative cancer research.
Central registries including state registries, the National Cancer Data Base (ACDB), the North American Association of Central Cancer Registries (NAACCR), the Surveillance, Epidemiology and End Results (SEER) program, the National Program of Cancer Registries (NPCR) program, and other joint projects; collect data submitted electronically from multiple source registries. Without shared data-coding standards, the submitted data has to be reformatted and interpreted. Central registry administrators were among the first to realize the inconsistencies among contributing registries in data content, despite what seemed to be shared codes and procedures. Registries should obtain current information directly from the governing bodies that affect their operations.