Innovation through collaboration: Identifying opportunities to improve congenital anomalies surveillance in Canada

The burden of congenital anomalies is a significant public health concern. In response to the World Health Organization's recommendations, Canada developed and strengthened congenital anomalies surveillance to build capacity for prevention and optimal health outcomes. Historically, the Public Health Agency of Canada (PHAC) exclusively used hospital discharge data for the Canadian Congenital Anomalies Surveillance System (CCASS). A primary objective of the CCASS is to report prevalence, trends, and factors associated with congenital anomalies in Canada. However, the purpose of hospital discharge data is not for congenital anomalies surveillance; therefore, enhanced local data, which have more complete case ascertainment and additional data quality measures, are necessary.

Recognizing these significant limitations, PHAC, the provincial and territorial governments, physicians, public health practitioners, and academics collaborated on a project to enhance the CCASS with regional data and expertise. Subsequently, the Government of Canada InfoBase platform will use this enhanced dataset for national reporting.

We developed standardized case definitions, a data submission form, and data quality tools, and surveyed programs to describe local congenital anomalies surveillance practice, and to identify barriers and facilitators that impact congenital anomalies surveillance efforts.

This synergistic collaboration across jurisdictions, disciplines, and health care sectors is essential to support Canada's enhanced congenital anomalies surveillance. We identified common themes on funding, operational requirements, data standardization, and legal and privacy considerations from the survey. These themes can be used to inform policy and decision-makers for sustainable congenital anomalies surveillance and to amplify the current momentum.