Review: Data Standards & Standard Setters

Here is what we have learned from Data Standards & Standard Setters:

  • Data collected by a cancer registry should be 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.
  • The goals of standard setters help determine what registries collect and how the data are processed and ultimately used.
  • The organizations of standard setters include WHO, ACS, AJCC, CoC, NCDB, SEER, NPCR, NCRA, UDSC.
  • Data sets are lists of variables collected to meet the minimal requirements of the group's goals, often with an additional list of elements that are recommended for the most effective operation.
  • Standard code categories must meet multiple data goals.
  • Data edits test the logical effects of coding rules or natural relationships.
  • Even though an important consideration in the use of standard code categories and procedures is continuous over time, introduction of new or revised codes is sometimes necessary.
  • Standards for data management procedures for hospitals (institution) and population-based registries develop largely independently and have been defined by different standard setters.