Privacy impact assessment – Summary
Statistics Canada began conducting the Canadian Health Measures Survey (CHMS) in 2007 and will begin a fourth round of collection in 2014-2015. The CHMS collects health information through a self-reported questionnaire and direct physical measures including blood and urine samples to evaluate the extent of health problems associated with major health concerns, such as chronic diseases, infectious diseases, lifestyle characteristics and environmental exposures.
Participation in all components of the survey is voluntary for the selected participants. For the 2014-2015 collection period, about 5,500 participants among the ages of 3 to 79 will complete the physical measures testing in the CHMS mobile examination centre that will be set up in 16 different sites across Canada.
All components of this national survey are reviewed and authorized annually by the Health Canada/Public Health Agency of Canada Research Ethics Board (REB# 2005-0025).
The extensive privacy impact assessment for the CHMS is reviewed and updated for changes at the beginning of each new collection period. These updates are designed to identify new privacy, confidentiality and security risks to participants' personal information, to make recommendations to resolve or mitigate these risks, and to report on ongoing or previously identified concerns.
The update to the privacy impact assessment for Cycle 4 assesses the privacy risks associated with any changes to the CHMS content and biobank procedures since the previous cycle.
The CHMS collects small amounts of blood and urine from consenting participants and obtains their permission to maintain a biobank (blood, urine, DNA) for additional health studies to extend the usefulness of CHMS databases. Consultation on the best use of the stored samples is ongoing, with regular feedback and governance provided by the Biobank Advisory Committee and Statistics Canada’s Policy Committee.
A very small number of content additions were made since the previous cycle of the survey:
- Questionnaire content on physical activity was revised in order for the questions to match more closely with the Canadian Physical Activity Guidelines. The physical activity data can be used in conjunction with directly measured data from the activity monitors worn by respondents, anthropometric and cardiovascular measures at the clinic (e.g. weight, waist circumference, blood pressure), and blood and urine lab test results (e.g. cholesterol levels) to learn more about the relationship between physical activity and health among Canadians.
- Alanine aminotransferase (ALT), one of 15 blood chemistry panel tests done in Cycle 4, was reintroduced to the survey after being removed from Cycle 3. ALT is a specific protein involved in chemical reactions in the body and is found mostly in the liver. It is used to check for conditions such as diabetes, liver disease and kidney disease. It may also be used to monitor complications of diseases or side effects of medications used to treat diseases.
- Hepatitis C RNA was added to the survey for the first time and is being tested on 14 to 79 year old CHMS participants as part of Cycle 4. The Hepatitis C RNA method has recently become the new gold standard for testing Hepatitis C.
This content is accessed and used in an identical fashion to other survey content and does not introduce any new privacy concerns or risks.
The Canadian Health Measures Survey to be conducted in 2014-2015 is the fourth cycle of data collection and will follow the same procedures used in Cycle 3 for collecting, safeguarding, using, disclosing and storing participants’ personal information. Minor content and process changes for Cycle 4 and for the biobank have been incorporated using existing strategies and no additional privacy risks have been identified.
With the enhanced and existing Statistics Canada safeguards and procedures, as well as those in place at the mobile clinics and the laboratories, any remaining risks will be either negligible or are such that Statistics Canada is prepared to accept and manage these risks.