Supplement to Statistics Canada's Generic Privacy Impact Assessment related to Canadian Health Survey on Children and Youth (CHSCY)

Date: February 2023

Program manager: Director, Centre for Population Health Data
Director General, Health Statistics Branch

Reference to Personal Information Bank (PIB):

Personal information collected and used in the Canadian Health Survey on Children and Youth (CHSCY) is described in Statistics Canada's "Health Surveys" Personal Information Bank (PIB). The PIB refers to personal information that is related to participants of health surveys conducted by Statistics Canada. The personal information may include the following: name, contact, biographical, biometric, citizenship status, education, employment, financial, language, health and medical information (from blood, urine and hair samples), pregnancy, breastfeeding, sleep habits, sexual behaviour, nutrition, alcohol and e-cigarette/cigarette use, medication/drug use, physical attributes, physical activity, neighbourhood environment, place of birth, and provincial health card number.

The "Health Surveys" Personal Information Bank (Bank number: StatCan PPU 806) is published on the Statistics Canada website under the latest Information about Programs and Information Holdings chapter.

Description of statistical activity:

Statistics Canada will be conducting a follow-up to its 2019 Canadian Health Survey on Children and Youth (CHSCY) under the authority of the Statistics ActFootnote1, in partnership with the Public Health Agency of Canada (PHAC) and a team of researchers, headed by McMaster University. This voluntary household survey will use two sampling methods (longitudinal and cross-sectional, described below) to collect information about inddiduals aged 1 to 22 who live in Canadian provinces for CHSCY 2023, as well as some information about their parents or legal guardians and the parent or legal guardian's spouse that may be a factor affecting the well-being of children and youth. Although the CHSCY 2019 collected data from participants residing in provinces and the territories' capitals, CHSCY 2023 will only be administered in the provinces. Health data on children and youth residing in the Canadian territories will instead be collected by the Northern Canada Social Survey (NCSS), a new dedicated survey to collect data in the territories to reduce the burden on their residents resulting from statistical sampling requirements for small populations.

The main objectives of this survey are to:

  • provide current, detailed an ongoing health-related information on Canadian children and youth;
  • better understand the impact of the COVID-19 pandemic on their health and functioning;
  • examine their levels of health following the first years of the COVID-19 pandemic and, through the longitudinal component, compare the levels of health reported by those who participated in the 2019 CHSCY; and
  • explore issues that have an impact on the physical and mental health of children and youth.

The CHSCY 2023 sample will consists of 175,000 children and youth which represents the number required to have enough respondents for the findings to provide a representative portrait of the general Canadian population aged 1 to 22 in 2023.

Two sampling methods will be used to create the sample: a longitudinal sample (42,000 children and youth aged 5 to 22 that completed the CHSCY in 2019Footnote2) and a cross-sectional sample (133,000 households in which a child between the ages of 1 and 17) which will provide a picture of the health of children and youth in 2023. Both of these samples include an Ontario oversampleFootnote3 of 29,000 participants (17,000 from the longitudinal sample and 12,000 from the cross-sectional sample) to support quality estimates of the prevalence rate within each of the Ontario Public Health Units (PHU)Footnote4. A cross-sectional sample list frame, from which the additional participants will be selected, will be created using the Canadian Child Benefit (CCB) dataset collected from the Canadian Revenue Agency (CRA) under the authority of the Statistics Act (Sections 3(b, d & e) & 24). The CCB files contain a list of all program beneficiaries (parents or legal guardians of a minor living in their household) with their names, addresses and phone numbersFootnote5.

As in the previous cycle, to mitigate privacy and sensitivity concerns the CHSCY 2023 will use two questionnaires to collect survey data for selected youth aged 12 to 17: one questionnaire will be completed by the parent or legal guardian (questions about both the child/youth, the parent/guardian and their spouse) and a separate questionnaire will completed by youth themselves (questions about themselves only). The survey is therefore administered separately with the parent/legal guardian and the youth.

Only one questionnaire will be used for selected children aged 1 to 11 as it will be completed by the parent or legal guardian. Youth aged 18 to 22, who were selected to be part of the longitudinal sample because they participated in the 2019 CHSCY, will complete the entire questionnaire themselves since they are now adults. Their parent or legal guardian (who also participated in the 2019 CHSCY) will not be invited to participate.

Invitations will be sent as follows:

  • Parents or guardians of children and youth aged 1 to 17 will receive an invitation letter and secure access code to complete their portion of the survey on Statistics Canada's secure website. While completing this questionnaire, they will be asked to voluntarily provide consent for Statistics Canada to contact their youth aged 12 to 14 as well as voluntarily provide the email address and telephone number for their youth aged 12 to 17 to receive an invitation by email to complete their portion of the questionnaire. Youth aged 15 and over are deemed able to provide meaningful consent to participate in this survey.
    • A telephone follow-up interview will be conducted with parents who did not provided consent (for youth aged 12-14) or an email address (for youth aged 12-17) in the electronic questionnaire.
    • Selected youth aged 12 to 14 years old for whom the parent or legal guardian do not consent for their participation will be considered out of scope; the parent/legal guardian will not complete the rest of the questionnaire and the youth will not receive an invitation to participate in the survey.
  • Youth aged 12 to 17 for whom email addresses were provided by the parent or guardian will receive an invitation email containing a secure access code.
  • Young adults aged 18 to 22 will directly receive an invitation letter and secure access code to participate in the longitudinal component of the survey since they will be the only ones participating on their behalf.

For a detailed breakdown of the personal information collected, including topics, targeted respondent (parent or guardian or youth response), and data subject (children/youth, parent/guardian, spouse) please see Appendix 1.

For the longitudinal component, the first and last names of the selected children and youth who participated the 2019 CHSCY will be used in the mail out invitations and pre-filled in the electronic questionnaire to verify the selected child or youth's identity.

While a specific child or youth was selected from the Canadian Child Benefit (CCB) to create the cross-sectional sample, invitations mailed to those households will not include the first and last names of that child or youth. In these cases, the parents or legal guardians will be asked to provide in the questionnaire the name of a child living in the household that was born in a specific year (i.e., the birth year of the selected child). Since it is possible that more than one child in the household was born in that year, the questionnaire will randomly select either the child born the earliest or the latest in the year. The full name of the child or youth will then be used in a following question to confirm that the respondent is, indeed, the parent or legal guardian of that child or youth.

While the e-mail invitations sent to youth aged 12 to 17 will not include any names, their full name will be pre-filled in the electronic questionnaire to verify their identity.

Abiding by Statistics Canada standards, any published data or information resulting from this survey will be aggregated and processed to ensure that no inddidual can be identified and to mitigate against the risk of re-identification. Findings from Statistics Canada, other government departments and researchers will support decision-making at all levels of government and improve knowledge and understanding of the physical health and well‐being of children and youth in Canada, including differences and inequities between various population groups and the impact of the COVID-19 pandemic on their levels and determinants of health and functioning. It will also help inform government decision‐making and policy development to support vulnerable Canadians and their families. For example, CHSCY 2019 results found that that sexually and gender dderse youth are more likely to experience bullying than cisgender youthFootnote6 and the prevalence of fetal alcohol spectrum disorder (FASD) was significantly higher in Indigenous households who reside off-reserve Footnote7. These types of findings will also help inform government decision‐making and policy development to support vulnerable Canadians and their families.

Reason for Supplement:

The Generic Privacy Impact Assessment (PIA) addresses most of the privacy and security risks related to statistical activities conducted by Statistics Canada and continues to apply to both the 2019 and 2023 CHSCY. Due to the increasing sensitivity of collection from minors, this supplement was developed to ensure that the Generic PIA continues to apply to this activity and assess whether additional measures are required. As is the case with all PIAs, Statistics Canada's privacy framework ensures that elements of privacy protection and privacy controls are documented and applied.

Necessity and Proportionality:

The collection and use of personal information for the Canadian Health Survey on Children and Youth (CHSCY) can be justified against Statistics Canada's Necessity and Proportionality Framework:

Necessity

The information collected in this survey will provide new data to analyze the overall physical and mental health of children and youth in Canada as well as guide decision-making around the development and funding of targeted programs. The youth component (ages 12 to 17) was removed from the Statistics Canada's recurring Canadian Community Health Survey (CCHS) annual cycles to avoid the sample and content overlap for this age group during the 2023 CHSCY. CHSCY is the only Canada-wide survey conducted by Statistics Canada that collects extensive data on the health of children and youth.

Government partners and researchers will provide additional analysis of the data to reveal as many insights as possible on Canadian children and youth's health. With respondent consent – provided upon survey completion – and upon review and approval by Statistics Canada's confidentiality experts to ensure that appropriate measures are taken to mitigate against the risk of respondent identification and re-identification, the analytical survey microdata file will be made available to:

  • specific government partners with which Statistics Canada has signed data sharing agreements (the Public Health Agency of Canada, Health Canada and provincial and territorial ministries of health), under the authority of the Statistics Act (Section 12), and
  • approved researchers that have taken Statistics Canada's Oath of Office to become deemed employees (Statistics Act, Sections 5 & 6), in the Research Data Centres (RDC)Footnote8, upon approval of their requests to access the dataset for specified statistical research, under the authority of the Statistics Act (Section 17(2)(b)).

Only fully anonymized and non-confidential aggregate results, without direct identifiers, that are processed to mitigate against the possibility of re-identification of inddiduals can be released from the RDC. Releasing data at these aggregated levels would reduce the potential to identify impacts on vulnerable populations, subsets of populations, and groups. As with all statistical programs, Statistics Canada will retain this data as long as required for statistical purposes to conduct analysis of long‐term impacts, as discussed in the Generic Privacy Impact AssessmentFootnote9.

Effectiveness - Working assumptions

The questionnaires and the sample frame were developed according to Statistics Canada's processes and methodologies ensuring results are representative of the population and provide a sufficient quantity of respondents to allow for privacy-protecting analysis, release and publication. The survey will be administered using a self-reported electronic questionnaire with telephone follow-up.

One of the primary objectives of the survey is to assess changes in the health and situation of children and youth in Canada, including the impact of COVID-19. As such, CHSCY 2023 will undertake a longitudinal follow-up survey with respondents that completed the 2019 CHSCY to better identify patterns/changes in youth health during the COVID-19 pandemic and better understand correlated variables and outcomes. This longitudinal sample consists of children and youth between the ages of 5 and 22 who lived in a province of Canada in 2019. To ensure a representative portrait of the health of Canadian children and youth in 2023, an additional cross-sectional sample will complete the 2023 CHSCY final sample. This cross-sectional sample will be randomly created using a sample list frame of children and youth who did not participate in the 2019 CHSCY; the selected child or youth's name will not appear on the mailing material and will instead be requested from the parent or guardian during collection. The 2023 CHSCY final sample includes an oversample in Ontario funded by the Ontario provincial government in order to get more precise estimates of its residents.

To collect the necessary data while respecting inddidual privacy of youth between the ages of 12 and 17, two separate CHSCY invitations will be sent, with one being addressed directly to the parents and/or legal guardians (by mail) and one addressed to the youth (by email, only when provided by the parent or guardian, and with parental consent for 12-14 year old youth). The invitations include separate secure survey identification codes in order to administer separate custom questionnaires to the parent/guardian and youth; both questionnaires are administered independently and neither respondent will have access to the information provided in the other questionnaire by the other respondent.

To ensure effective response rates to allow for privacy-preserving publication of necessary informationFootnote10, reminders will be sent by letters, texts or emails and interviewers will follow up with households that are yet to respond two weeks after collection started to reissue an invitation. This follow-up will also provide respondents with the opportunity to complete the survey over the telephone with a trained Statistics Canada interviewer.

Data disaggregation is a top priority for Statistics Canada and the government. For effective data collection and analysis that meets Statistics Canada's statistical quality guidelinesFootnote11 the data must be representative of the general Canadian population to be disaggregated by province, ethnicity, gender, age groupings, and other variables. Disaggregation allows the identification of population groups that are usually marginalized in terms of their health outcomes and the use of the health care system. For example, CHSCY 2023 will ask youth if they received poorer services than other people in health care related situation and the main reasons why they think they had these experiences. Data disaggregation will help to identify which youth subgroups – if any – are more at risk to report perceived discrimination within the context of health care. Sociodemographic data will therefore be collected in CHSCY 2023 for analysis of subgroups of the survey population as part of Statistics Canada's commitment to produce more disaggregated dataFootnote12. Disaggregation by household income will be possible with the integration of income data using Canada Revenue Agency's tax and benefits record (i.e., the T1 Family File (T1FF))Footnote13, only with respondent consent at the end of the questionnaire and under the authority of the Statistics Act, Section 24.

Given the seasonal nature of school and the resulting potential change in routines for children and youth during the school year compared to during the summer months, there will be two waves in the collection period: the first wave will last approximately four months, starting in March 2023 and ending in June 2023, with the second wave being held from September to December 2023.

Considering the particular context of the COVID-19 pandemic and its impact on Canadian mental health, as well as the sensitivity of some subjects, every question and response category was carefully considered ensuring the accurate and effective capture of needed data to help inform and develop policies and programs related to mental health among children and youth. Wherever possible, questions about mental health and well‐being were reused from the previous cycle of this survey (CHSCY 2019) or taken from existing surveys. In addition to qualitative testing of those questions with youth aged 12 and over, experts at Statistics Canada, PHAC and McMaster University were consulted on the scope and methodology of the survey, paying particular attention to sensitive subjects.

Proportionality

CHSCY 2023 is expected to deliver representative and high-quality information to governments, researchers and Canadians about the health of children and youth across the country. During survey design, data sensitivity, ethical issues, and the need for information to be collected was considered to ensure that questions on topics that are of sensitive nature are only asked to respondents when appropriate.

Specifically, the 2023 CHSCY contains data on sensitive issues, such as to child maltreatment, experiences with bullying and discrimination, self-harm and suicidal thoughts. However, the collection of data on these issues is critical for policymakers to be able to affect change, especially given the exacerbation of those issues or their impact on children's and youth's mental health the COVID-19 pandemic may have caused.

Alternatives

Research was conducted on existing administrative data and other surveys on the health of children and youth and although these other sources of data were considered, none would provide all the information required to fulfill one of the survey's primary objectives to examine changes in health and functioning before and after the COVID-19 pandemic. Administrative data from CRA's income tax dataFootnote14 will be integrated and used to provide information on the income of the household as an alternative to asking the respondent directly in order to reduce respondent burden and ensure accuracy of the data.

Mitigation Factors:

Some questions contained in the CHSCY are considered sensitive as they relate to an inddidual's mental health and well-being and because a large part of the targeted respondents are minors. The overall risk of harm to the survey respondents (which can include both the selected youth (12 to 22 years old) and the parent or legal guardian) is deemed manageable with existing Statistics Canada safeguards that are described in Statistics Canada's Generic Privacy Impact, with particular emphasis on the following measures :

Limiting sensitive questions to a deemed age-appropriate section of the 2023 CHSCY population

Questions and themes are adapted to the age of the selected youth (aged 12-22), for example:

  • childcare services questions are only asked to parent or legal guardian of children under the age of 12;
  • sexual attraction is only asked to youth aged 15 and over;
  • current school enrolment status is asked to parent or legal guardian of children under the age of 12, but asked to the youth if they are aged 12 and over.

Ensuring respondents are supported and have control over the collection of the survey

As with all mental health surveys conducted by Statistics Canada, specific measures are taken to reduce the risk of harm triggered by raising potentially sensitive topics:

  • Information about the survey, including a copy of the survey questionnaire, will be publicly available on Statistics Canada's website before the start of collection.
  • Inddiduals selected to participate in the survey will be clearly informed of the survey's purpose and topics and instructed that their participation is voluntary prior to beginning the questionnaire.
  • Information and links to mental-health resources will be provided in the electronic questionnaire (using a help button) and during interviews, as some topics of the survey are sensitive and could lead to distress.
  • A large yellow "Leave page quickly" button is located at the top of every questionnaire page of the childhood experience section which, when selected, will allow the respondent to skip the entire section if they wish. The interviewer can also click that button upon the respondent's request. After selecting this button, the respondent, or interviewer, will not be able to return to this section of the questionnaire.
  • Interviewers conducting telephone follow-up for non-response will be trained and equipped to offer mental health resources (such as Wellness Together CanadaFootnote15) and contact information (such as Kids Help PhoneFootnote16) to survey respondents.
  • Respondents will be able to end or pause the questionnaire at any time by clicking the "Save & exit" button and log back in if they so choose to finish completing the survey (until the end of survey collection). Both the parent or legal guardian and the youth ages aged 12 to 17 years old can submit their completed questionnaire independently to whether the other respondent has submitted theirs.

Transparency regarding survey content

As mentioned above, prior to their participation, individuals selected for the survey will be sent invitation letters clearly informing them of the survey's purpose, topics and voluntary nature. This information will allow them to make an informed decision about whether they want to participate and will allow parents or legal guardians to make an informed decision when providing consent for the participation of their youth aged 12 to 14. This information will be reiterated in reminder letters and on the introductory pages of the electronic questionnaire or by the interviewer before any questions are asked.

Respondent confidentiality

Standard Statistics Canada directives and policies governing the privacy-preserving development, collection, and dissemination of the survey and use of personal information will be followed, such as the separation and storage of direct identifiers in separate secure locations as soon as possible, with limited and separate inddidual need-to-know access for the identifier dataset and the analytical dataset. This also includes:

  • Grouping or excluding inddidual responses and results for very small groups from information that will be reported, published, or shared with government departments or agencies to reduce any potential impact on vulnerable populations or subsets of populations. This measure is applied with the exception of the aforementioned sharing of analytical datasets with the Public Health Agency of Canada, Health Canada, provincial ministries of health, and approved researchers for approved research projects via the Research Data CentresFootnote17.
  • The only direct identifier to be included in the final aggregate data file will be postal code, as the lowest level for geographic analysis; data may be suppressed or further aggregated according to standard Statistics Canada guidelines to further reduce the risk of re-identification.
  • Parents or legal guardians and youth aged 18 to 22 will be informed that the provision of their email address, as part of the household contact information module in the questionnaire, is voluntary and that it may be used as part of a contact list to send out future survey invitations for participation in a potential follow-up survey or other mental-health surveys, which they can then choose to participate in or not.

Conclusion:

This assessment concludes that, with the existing Statistics Canada safeguards including those listed above, any remaining risks are such that Statistics Canada is prepared to accept and manage the risk.

Date modified: