January 31, 2020

The Growing Need for Health Terminology Standards in Canada

By Francis Lau PhD, FCAHS, Professor, School of Health Information Science, University of Victoria

Over the past decade, we have made great strides toward the harmonization and use of controlled terminologies in Canadian electronic health record (EHR) and health information exchange (HIE) systems. They include SNOMED CT as a clinical vocabulary for patient encounters, International Classification of Diseases (ICD) for diagnoses and health conditions, Canadian Clinical Drug Data Set (CCDD) for medications and electronic prescribing, and Logical Observations Identifiers Names and Codes (LOINC) for health measurements, observations and documents. Yet the ever-changing notions of health continue to bring new perspectives, understandings and requirements in the collection, use and exchange of different types of health information. These include the areas of precision health, social and behavioral determinants of health, mobile and consumer health, and patient-reported experience, health and outcomes where new and wide range of personal health information is required.

An example of the need for appropriate terminology standards is the work underway to define the Canadian Core Profiles as a collection of 20+ baseline specifications of data elements for use in data exchange among Canadian EHR systems. Part the core data elements are birth-sex and gender that require bindings to some type of terminologies, code systems and value sets. As jurisdictions start to consider non-binary sex-gender coding options and expanded concepts of gender identity and sexual orientations, there is an urgent need to reach consensus on the relevant sex-gender concepts, data elements and value sets for the Canadian Core Profiles and EHR systems. More broadly, we need people knowledgeable in terminology standards to ensure the appropriate use of terminology standards in these specifications and systems.