Supplement to Statistics Canada’s Generic Privacy Impact Assessment related to the Survey on Health Care Access and Experiences - Primary and Specialist Care (SHCAE-PSC)

Date: December 2023

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

Reference to Personal Information Bank (PIB):

Personal information collected through the voluntary Survey on Health Care Access and Experiences - Primary and Specialist Care (SHCAE-PSC) is described in Statistics Canada’s “Health Surveys” Personal Information Bank (PIB) (StatCan PPU 806) and is published on the Statistics Canada website under the latest Information about Programs and Information Holdings chapter. The PIB refers to information collected on a voluntary basis through Statistics Canada's health surveys under the authority of the Statistics Act. 

Description of statistical activity:

Statistics Canada is conducting the Survey on Health Care Access and Experiences - Primary and Specialist Care (SHCAE-PSC), under the authority of the Statistics Act^Footnote1. The purpose of this survey is to better understand how Canadians navigate the health care system, including challenges or barriers they may face. Topics covered include the access to and use of primary health care and specialist care, care coordination, barriers to care, prescription medications, and out-of-pocket expenses.

The SHCAE-PSC is a new, voluntary survey being conducted by Statistics Canada’s Centre for Population Health Data. The goal is to collect data on how respondents are interacting with the health care system. Work on the survey began with the formation of a working group consisting of members from Statistics Canada, Health Canada, the Public Health Agency of Canada, and the Canadian Institute of Health Information (CIHI). Together, this working group identified health data needs, which were grouped into themes such as access, barriers, and patient experiences and satisfaction. The group then worked to develop survey content to address these data needs. The results may be used by Health Canada, the Public Health Agency of Canada, provincial ministries of health, and for Quebec residents, the Institut de la statistique du Québec to help inform the delivery of health care services, and to develop and improve programs and policies to better serve all Canadians. 

A dwelling-based sample will be selected from the Statistical Building Register (SBgR)^Footnote2. The survey will target approximately 75,000 individuals aged 18 years and over living in the ten provinces for direct collection by way of a self-reported electronic questionnaire and/or telephone interviews. Individuals living on reserves or in an institution for six months or more are excluded from the sample. Each dwelling in the sample will receive an invitation letter and secure access code to complete the survey on Statistics Canada’s secure website. Within each dwelling, one individual will be selected to complete the survey using age order selection. Instructions for this process will be provided in the introductory letter. The process can be completed by the interviewer in the case of telephone interviews. After seven and a half weeks of collection, interviewers will follow up with individuals that have not yet responded to re-issue the invitation and provide respondents with the opportunity to complete the survey over the telephone with a trained Statistics Canada interviewer. The collection will take place over two waves, with each wave lasting approximately 21 weeks. Responses will be aggregated to ensure that no individuals can be directly or indirectly identified.

The questionnaire content covers a variety of health-related topics. Questions on health include self-perceived health, mental health, daily stress, life satisfaction, chronic conditions, and disability status. 

Questions on primary health care include whether the respondent has a regular health care provider. If they do, they are asked a series of questions about this provider, including wait times to see them and languages spoken with them. If they do not have a regular provider, they are asked why they do not have a regular health care provider and how long they have been without one. 

Respondents are asked about their most recent consultation for a primary health care need in the past 12 months and details regarding its purpose, with whom and where it took place, the wait time for the consultation and its impact on the respondent, their views on how they were treated by the health care provider and their rating of the quality of the consultation. They are asked a similar series of questions for their most recent initial consultation with a specialist in the past 12 months. Finally, respondents are asked about any difficulties they experienced accessing any primary health or specialist care that they needed in the past 12 months and what they did because of these difficulties.

The survey content also includes questions on care coordination between providers, barriers and discrimination experienced in health care settings, unmet health care needs, prescription medications, insurance coverage, and out-of-pocket expenses. 

In addition, respondents will be asked to provide their name, and other demographic information such as postal code, province of residence, date of birth, age, sex at birth, gender, disability status, Indigenous identity and whether they are a Status Indian, population group, immigration and citizenship, languages, sexual orientation, and highest level of education. The purpose of including these questions is to determine if there are differences in the experiences accessing health care among various groups.

A master microdata file will be produced and made available in Statistics Canada’s Research Data Centres (RDCs)^Footnote3, including the survey data file without direct identifiers^Footnote4other than postal code and date of birth, will be made available to researchers in the RDCs upon approval of requests to access the data for statistical research. A subset of the master file which contains only information of respondents who have consented to share their information, called the share file, may be made available to Health Canada, the Public Health Agency of Canada, provincial ministries of health, and for Quebec residents, the Institut de la statistique du Québec. 

The SHCAE-PSC collects the following personal information: 

• Name  
• Specialist care use
• Postal code    
• Health care barriers
• Province     
• Unmet health care needs
• Household size
• Prescriptions
• Number of household members aged 18 and over
• Insurance coverage
• Date of birth  
• Out-of-pocket expenses
• Age   
• Indigenous identity
• Sex at birth   
• Population group
• Gender   
• Place of birth
• Self-perceived health   
• Immigration
• Life satisfaction    
• Citizenship status
• Stress   
• Language
• Disability status      
• Sexual orientation
• Chronic conditions    
• Education 
• Primary health care use   
• Provincial health card number

Other information, such as household income will be linked via administrative data.

Collection is scheduled to take place in two waves, wave one between January to June 2024 and wave two June to November 2024.

Reason for supplement:

While the Generic Privacy Impact Assessment (PIA) addresses most of the privacy and security risks related to statistical activities conducted by Statistics Canada, this supplement describes additional measures being implemented due to the sensitivity of the information being collected. The Survey on Health Care Access and Experiences - Primary and Specialist Care will collect information on respondents’ use of primary and specialist health care as well as issues related to access, including wait times, experiences of discrimination, barriers to care, unmet needs and their impacts on the individual. Sensitive personal information such as name, date of birth, sexual orientation, and gender identity will also be collected for the purpose of record linkage and to analyze the experiences accessing health care among different groups. Given the overall sensitive nature of the topics covered, this supplement was developed to describe how Statistics Canada is considering the possible impact on vulnerable populations. 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 of personal information for the Survey on Health Care Access and Experiences - Primary and Specialist Care can be justified against Statistics Canada’s Necessity and Proportionality Framework: 

1. Necessity:

   Health care is an important topic for Canadians and has become even more important with the recent COVID-19 pandemic and its impact on the delivery and types of services provided. There are few recent sources of information on these topics. Administrative data can provide some information, but it does not provide any measure of the impact of wait times and other access issues on the individual. The SHCAE-PSC will help fill this data gap. The results of this survey may be used by the Public Health Agency of Canada, Health Canada, provincial ministries of health to help inform the delivery of health care services, and to develop and improve programs and policies to better serve all Canadians.

   All the data to be collected are necessary to fulfill the purpose of the survey as described in the description section. All questions and response categories were carefully considered to ensure their relevancy to developing and improving programs and policies to better meet the health care needs of Canadians, and that they accurately capture the data in question to help inform the delivery of health care services.

   Only individuals living in the provinces are eligible to participate. The territories are excluded from the survey due to the small population size and to reduce response burden. The demographic data collected will be used for analysis of subgroups of the population. The sample will be stratified by province; it was determined that a sample size of 75,000 should allow the production of reliable and accurate results by province, gender, and age group (where the groups considered are 18-44, 45-64, and 65+). Given that health care is a provincial responsibility, one goal of the survey is to be able to understand how the experiences of individuals of different age groups and in different provinces are impacted by issues related to access and use of health care services.

   There is a plan to undertake record linkage to tax data records to collect the income information for respondents. This will reduce the survey’s response burden as the income module is no longer needed. There are currently no other plans for record linkage, however, direct personal identifiers such as name, address, postal code, date of birth, and health care number will be retained on a separate file in a secure location for potential linkage opportunities in the future.

2. Effectiveness - Working assumptions: 

   Conducting surveys is the only way to get estimates of individuals experiences and opinions about accessing health care. A questionnaire was developed by following Statistics Canada’s processes and methodology to produce results that are representative of the population. The questionnaire underwent qualitative testing through Statistics Canada’s Questionnaire Design Resource Centre (QDRC) with some modifications made to the content as a result of feedback received during this testing.

   All Statistics Canada directives and policies for the development, collection, and dissemination of the survey are followed, and survey responses will not be attached to respondents’ addresses or phone numbers, other than postal code. The goal is that data will be representative of the general population aged 18 and over in the ten provinces. 

   When the quality of the estimates is sufficient and the identity of respondents is protected, disaggregation by other demographic characteristics (such as ethnicity, gender, age groupings) may be possible to provide further insight that aggregate information will not provide. The survey collects this personal information and may produce estimates or analysis related to these data as the experiences of health care or outcomes may be different in a marginalized population than in the non-marginalized population. For example, members of marginalized populations may experience discrimination in health care settings.

3. Proportionality:

   Data on health care use, discrimination, barriers to care, mental health and its impacts, as well as sociodemographic data that may identify marginalized groups are considered sensitive. For these reasons, experts at Statistics Canada have been consulted on the scope and methodology of the survey. All the data to be collected are required to fulfill the purpose of the survey as described above. All questions and response categories were carefully considered ensuring they accurately capture the data in question to help inform and develop policies and programs related to health care use. Wherever possible, questions on these topics from existing surveys or Statistics Canada harmonized content have been used. The questionnaire content was developed to limit the amount of personal information required to meet data needs. For example, general questions are asked about the purpose of appointments with health care providers or whether the respondent had any prescriptions, but no details on the respondents’ specific medical conditions or medications are asked. The questionnaire also underwent qualitative testing and review through the QDRC to ensure that there were no topics that were too sensitive to respondents. No problems or concerns were noted at that time by QDRC or the potential respondents.

   The findings support decision-making at all levels of government and improve knowledge of Canadians’ use of the health care system for both primary and specialist health care, as well as critical research at all levels. They help improve the understanding of the impact of barriers to care including reasons such as discrimination, cost, and lack of access to care. Information on the socio-demographics characteristics of respondents will allow for the study of access and experiences by various groups, including marginalized groups. The privacy measures taken are proportional to the potential risks to an individual’s privacy.

4. Alternatives:

   Research was conducted on existing administrative data and other surveys related to health care service use. It was determined that these types of data sources would not provide the details needed to fully understand the experiences of individuals accessing the Canadian health care system, especially considering the impacts that the COVID-19 pandemic on the health care system. Administrative data does not contain information on the impact of things such as wait times or discrimination on the individual. As a result, it was determined that a survey to collect this type of information was required.

Mitigation factors:

The overall risk of harm to the survey respondents has been deemed manageable with existing Statistics Canada safeguards that are described in Statistics Canada’s Generic Privacy Impact Assessment, with particular emphasis on the following measures: 

• Prior to collection, individuals selected to participate in the survey will be clearly informed of its voluntary nature, as well as the survey’s purpose and topics so that they can make an informed decision about whether they want to participate. This notification will be provided to all potential respondents in writing on the questionnaire, or verbally by the interviewer before any questions are asked. 
• Information about the survey, as well as the survey questionnaire, is published on Statistics Canada’s website. 
• Statistics Canada’s directives and policies on data publication will be followed to ensure the confidentiality of any data released from the Research Data Centres. Only aggregate results, which are fully anonymized and non-confidential, without direct identifiers, which precludes the possibility of re-identifying individuals, can be released from the Research Data Centres.
• Respondents may request that their income tax information not be linked to SHCAE-PSC responses.
• Respondents may request that their SHCAE-PSC responses not be used in any future linkages. 
• Individual responses will be aggregated with those of others when reporting results. Adequate suppression of potentially identifying responses for very small groups will be implemented to protect the privacy of respondents. 
• Additional consideration and suppression may be applied to ensure that the privacy of marginalized and vulnerable communities is not disproportionally impacted by any results prior to their release. 
• Consent will be sought from respondents to share this information, as permitted by the Statistics Act^Footnote5 , and only with that consent will Statistics Canada share survey responses with Health Canada, the Public Health Agency of Canada, provincial ministries of health, and for Quebec residents, the Institut de la statistique du Québec, strictly for statistical and research purposes, and in accordance Statistics Canada’s security and confidentiality requirements. 
• Statistics Canada’s microdata linkage and related statistical activities were assessed in Statistics Canada’s Generic Privacy Impact Assessment^Footnote6 . All data linkage activities are subject to established governance ^Footnote7 and are assessed against the privacy principles of necessity and proportionality^Footnote8 . All approved linkages are published on Statistics Canada’s website.^Footnote9
• A relatively small (75,000) sample size is being used instead of a census of all persons receiving healthcare in Canada.

Conclusion:

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

Formal approval:

This Supplementary Privacy Impact Assessment has been reviewed and recommended for approval by Statistics Canada’s Chief Privacy Officer, Director General for Modern Statistical Methods and Data Science, and Assistant Chief Statistician for Social, Health, and Labour statistics. 

The Chief Statistician of Canada has the authority for section 10 of the Privacy Act for Statistics Canada, and is responsible for the Agency’s operations, including the program area mentioned in this Supplementary Privacy Impact Assessment.

This Privacy Impact Assessment has been approved by the Chief Statistician of Canada.