Long-term Health Outcomes Studies Program - Privacy impact assessment summary


Since 1999, Statistics Canada’s Long-term Health Outcomes Studies Program has been a fundamental part of the Health Information Roadmap, a collaborative effort among Statistics Canada, the Canadian Institute for Health Information and Health Canada. Its goal is to meet priority requirements for health information that serves to improve public health and the quality of Canada’s health system.

The Long-term Health Outcomes Studies Program is carried out by the Occupational and Environmental Health Research Section of Statistics Canada’s Health Statistics Division. The program oversees long-term health outcomes studies based on requests from outside clients such as Health Canada, Public Health Agency Canada, private sector employers, unions and university researchers through cost-recovery contracts.

The program uses databases created from information from Vital Statistics and the Canadian Cancer Registry programs. Occasionally, the Long-term Health Outcomes Studies Program uses additional variables obtained directly from the provinces and territories. It also uses cohort files such as records of individuals from employers and unions, health surveys, medical or clinical records or specific research groups. Finally it uses other Statistics Canada files for study and/or data quality purposes.

Most studies involve record linkages of databases and files in order to look at various health outcomes over extensive periods of time. These linkages require the approval of a senior management committee at Statistics Canada and are done on a case-by-case basis.


A privacy impact assessment for Statistics Canada’s Long-term Health Outcomes Studies Program was conducted to determine if there were any privacy, confidentiality and security issues associated with the program, and if so, to make recommendations for their resolution or mitigation.


This privacy impact assessment examines the risks related to the use of information on the Canadian Birth, Stillbirth, Cancer and Mortality databases and the management of these databases; receipt of information directly from vital statistics registrars; receipt of cohort files from outside organizations/clients; the processing and linkage of cohort files to the databases; sending study or analysis files to clients either directly or indirectly; and the storage and retention of these files.

All database information and client cohort files are provided the same level of security afforded to all information obtained under the authority of the Statistics Act.


This assessment of the Long-term Health Outcomes Studies Program did not identify any privacy risks that cannot be managed using existing safeguards.

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