Organized Breast Cancer Screening Programs in Canada - 1996 Report

Canadian Breast Cancer Screening Database

The Canadian Breast Cancer Screening Database (CBCSD) was established in 1993. The goal of this national breast screening surveillance system is to monitor and evaluate breast cancer screening across Canada. The data collected by the CBCSD enable generation of national statistics, comparison of data interprovincially and internationally, and the provision of a large database for program-related research.

The CBCSD is managed and advised by the Database Management Sub-Committee, which includes representation from Health Canada and the directors of provincial/territorial breast screening programs and which reports to the National Committee of the CBCSI. The Technical Sub-Committee develops and puts into effect strategies for uniform collection and sharing of data in the national database. The database is maintained by the Laboratory Centre for Disease Control (LCDC). Appendix 1 contains a list of the members of the Database Management Sub-Committee and the Technical Sub-Committee.

Memoranda of Understanding (MOU) exist between LCDC and 11 of the organized screening programs. The MOU clarifies issues of ownership, access, accountability, and confidentiality with respect to data collected under the auspices of the national database.

For each woman screened, information is collected on risk factors for breast cancer, screening history, screening results, referral status (referred for diagnostic follow-up or not), diagnostic tests, and the final diagnosis for all women referred for diagnostic follow-up. Each provincial program also collects data on cancers among women participating in the program that were not detected through the screening process (non-program detected cancers, i.e. non-compliant or interval cancers). Personal identifiers are not collected at the national level.

Provincial/territorial breast screening programs strive for data completeness and accuracy through the use of extensive quality management practices. A survey of quality assurance practices conducted in 1996¹³ found that all provincial breast screening programs practice quality management in such areas as training and documentation; client tracking; and data integrity, availability, and confidentiality. This attention to quality is continued at the national level, where the data must first meet the database's business rules, which include range, value list, and logic checks before the data are loaded onto the database. Regular analyses and reporting of data at the national level provide an additional check of the data's integrity.

As of 1998, the database contains screening information from the following programs: British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Nova Scotia, New Brunswick, and Newfoundland for all years since their inception. Quebec, Prince Edward Island, and the Northwest Territories have implemented programs and will be submitting data to the CBCSD within the next 2 years. Plans are under way to involve the participation of the Yukon.

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