Canada - World Health Organization Regional Office for Europe

Health systems in transition Canada 43
At the intergovernmental level, CIHI coordinates the collection and
dissemination of health data, much of which is administrative data provided
by the provinces and territories. CIHI works with F/P/T governments in
establishing and maintaining data definitions and quality standards. The agency
also works with provider organizations in maintaining databases, including
physician and hospital discharge databases. In a unique provincial arrangement,
the Manitoba Centre for Health Policy (MCHP) at the University of Manitoba
maintains the administrative database for the ministry of health. Based on a
long-standing contract with the provincial ministry, the MCHP analyses the
data and publishes analytical reports and peer-reviewed journal articles based
on the administrative data.
Since the 1990s, privacy has emerged as a major issue in health data collection
and dissemination. The collection and use of personal health information are
inherently privacy-intrusive activities in which judgements are continually
made as to whether the public good of obtaining, analysing and using such
data outweighs the potential intrusion on an individual’s confidentiality and
privacy. Since jurisdiction over health information is shared among F/P/T
governments, the result is a patchwork of health information and privacy laws
in Canada. These laws sometimes address three issues – privacy, confidentiality
and security – in the same legislation, or at other times in separate laws within
the same jurisdiction.
At the federal level, four major laws govern privacy. The Personal Information
Protection and Electronic Documents Act (PIPEDA) applies to personal health
data that are collected, used or disclosed in the course of commercial activities
that cross provincial and territorial borders. The Privacy Act requires informed
consent before information is collected or used. Within the limits of strict legal
protection for individual confidentiality, the Statistics Act permits Statistics
Canada to collect and disseminate health and other data. At the same time, the
Access to Information Act requires that public information held by the federal
government or its agencies be made publicly available unless it is specifically
exempt.
At the P/T level, most jurisdictions have general laws in place to protect
privacy and confidentiality, although some have specific legislation to protect
health information. This latter development is, in part, a response to the public
backlash to initial efforts to establish electronic health information networks
and EHRs, including patient records. While privacy concerns about health
records pre-dated such efforts, the potential use of EHRs has highlighted these
concerns.