Introduction
The Longitudinal Health and Administrative Data (LHAD) Initiative is a joint research project between the provincial and territorial ministries responsible for health care and public health and Statistics Canada. The LHAD Initiative is the first collaborative project of its kind where personal health information from clinical databases routinely collected through the provincial and territorial health systems will be provided to Statistics Canada to be linked, on a study-by-study basis, with data already held by the Agency from national population health surveys, vital events (i.e., births and deaths) and cancer. The focus of the studies will be statistical in nature such as the analysis of the determinants of health of Canadians.
Objectives
A privacy impact assessment for the Longitudinal Health and Administrative Data Initiative 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.
Description
The LHAD Initiative addresses important health research that can only be undertaken by a central, national organization such as Statistics Canada. Priorities for research and an analytical plan will be established, on an annual basis, in the form of a LHAD Research Agenda. This Agenda will reflect the views of the majority of provincial/territorial LHAD Steering Committee members, who will review all research proposals and identify priorities for Canadian health statistics research to be undertaken by the LHAD Initiative.
Because LHAD research projects will involve the use of linked records, approval on a study-by-study basis will also be required from Statistics Canada's most senior management committee (Policy Committee) in accordance with the Statistics Canada Policy on Record Linkage.
Statistics Canada, as the operational arm of the LHAD Initiative, is responsible for securely storing and processing LHAD data sets and for the production of the analysis files needed to carry out the approved research studies.
An important step in the production of the analysis files will be the creation by Statistics Canada of a Key Registry, using information from the Population Registries to be provided by the provincial/territorial ministries. The Key Registry will generate and store a unique identification number for each person (the LHAD ID) which will then be attached to each record of all databases of the LHAD Initiative. As such, all records will have a LHAD ID, thus establishing the necessary infrastructure to support approved record linkages among any combination of LHAD databases. The use of the Key Registry will improve significantly the quality and efficiency of those linkages.
The use of a LHAD ID number for each person also eliminates the need to store sensitive personal information such as name and health number on the various LHAD Initiative databases. Further, by storing all sensitive personal information in a Key Registry, management of data security and access measures is much more simplified and easier to control.
Conclusion
This privacy impact assessment has not identified any outstanding issues relating to confidentiality or security. The transmittal of personal health information to Statistics Canada will be carried out by means of a secure medium of transmission to ensure the security and integrity of the data. Once received into the secure environment of Statistics Canada, confidentiality is governed by the Statistics Act and the Agency has an exemplary record in that regard. Similarly, from a security perspective, Statistics Canada has had in place for many years, security policies and practices that are now just becoming a best practice in many other organizations.
Many activities of Statistics Canada–like the LHAD Initiative–by their very nature are privacy intrusive. Although a number of potential privacy concerns were identified, this assessment concludes that with the mitigation measures that have been put in place, any remaining risks are either negligible or are such that Statistics Canada is prepared to accept and manage the risk.