Race and Ethnicity Data Collection Project
About the Project
Why The Collection of RE Data Matters
Project Team Positionality Statement
The Role of Community Advisory Group (CAG)
Frequently Asked Questions (FAQs)
Where can I find more information?
Race and ethnicity project media articles
About the Project
Starting May 2026, you may voluntarily provide race and ethnicity (RE) information when applying for or renewing a PEI Health Card. This information may also be added, updated or removed at any time, separate from health card application or renewal, by submitting a Notice of Change to Race and Ethnicity Data Form (Coming Soon, Mid to end of May 2026) to PEI Medicare.
This initiative is led by the Department of Health and Wellness in partnership with Health PEI (HPEI), with funding from the Canadian Partnership Against Cancer. It supports a key enabler of the PEI Cancer Action Plan: expanding the collection of equity-related health data using culturally appropriate and safe approaches.
During the pilot (May 2026 to September 2027), the focus will be on assessing data quality of the RE information provided. The data will also be used by the PEI Cancer Registry to investigate patterns and trends in cancer care by race, to help identify potential racial inequities at the population level.
Why The Collection of RE Data Matters
PEI’s population has grown significantly over the past five years, reaching about 154,480 residents according to the 2021 Census. Racialized and ethnically diverse residents, including Indigenous Peoples, make up approximately 11.6% of the population (approximately 9.5% racialized group members plus 2.1% Indigenous Peoples). The figure below illustrates this growth trend among racialized non-Indigenous groups:
Data Source: Statistics Canada 2021 Census
At the same time, RE data is not collected systematically across HPEI systems. This gap limits the province’s ability to identify, monitor and address health inequities and residents’ equitable access to health services and support including cancer screening, chronic disease prevention, and other population health programs. Without systematic collection of the RE data, HPEI lacks the evidence needed to better understand how different communities experience the health system and where disparities exist.
Collecting and using RE data through a community-centered and informed approach will help the province:
- Understand diverse health care needs – gain a clearer picture of health needs, experiences, and outcomes of our diverse population.
- Identify gaps in access and quality of care - data analysis investigates where health services are not working equitably, highlighting disparities across communities.
- Improve programs and services – information informs the design of tailored health programs and services that improve quality of life, patient experience, and health outcomes for diverse communities.
- Track progress and accountability – high quality data facilitates monitoring of progress towards fair and inclusive health care access and delivery for all residents.
- Protect privacy and build trust - co-creating race-based data collection approaches, policies, and a data governance framework with equity-deserving communities ensures alignment with existing provincial privacy legislation and supports the safe, ethical, and culturally appropriate collection, use, disclosure, protection, interpretation, and reporting of RE data.
Project Implementation
Several internal working groups support the development and roll out of the pilot project:
- RE Data Collection Project Team – provides overall project oversight and coordination since April 2025.
- Engagement and Communications Working Group – guides community engagement and communications.
- IT and Health Card Working Group – updates IT systems, health card application and renewal forms (paper & electronic), and the Notice of Change to Race and Ethnicity Data Form.
- Governance and Policy Working Group – co-develops the RE data governance policy and associated processes and structures with the Community Advisory Group.
- Evaluation and Data Analysis Working Group – supports project evaluation.
Project Team Positionality Statement
The RE Data Collection Project Team and Working Groups acknowledge the institutional power and privilege we hold, and the responsibility to do no harm. We recognize the historical and ongoing impacts of systemic racism and colonialism in public health data practices. Our commitment is to advance health equity for all Island residents by strengthening public health frameworks and infrastructure and supporting community-informed policies and practices that reflect the lived experiences of the Black, Indigenous, and People of Color (BIPOC), racially, and ethnically diverse communities in PEI.
Our role is not to speak for BIPOC communities, but to co-create a governance framework that centers their voices, values, and priorities. This will be achieved through wide-reaching collaboration and engagement with BIPOC individuals, leaders, communities, and a Community Advisory Group composed of BIPOC leaders and advocates, and government partners. Together, we aim to build transparent, equitable, and accountable policies for RE data collection, use, and storage. We approach this work with humility, recognizing that trust must be earned through sustained engagement, respect, and reciprocity.
We acknowledge that our diverse identities and institutional contexts shape this work. While members bring varied racial, cultural, and professional perspectives, many share privileges such as higher education, dominant language fluency, and socio-economic status. We commit to ongoing reflection, learning, and action to advance Calls to Action, racial equity, protect privacy, and uphold health equity principles.
Our guiding commitments include:
- Do no harm by respecting and protecting the identity and privacy of BIPOC individuals and communities.
- Addressing gaps in RE data to identify and reduce health disparities.
- Recognizing perspectives shared do not claim to represent all BIPOC communities.
- Maintaining transparency and accountability with project partners and BIPOC communities.
- Supporting inclusive, accessible, and meaningful community engagement.
- Valuing and compensating community contributions where possible.
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Engaging in good faith and sustaining reflexivity, positionality, and equity throughout the project lifecycle.
The Role of Community Advisory Group (CAG)
The CAG was established in October 2025 and is composed of community members, individuals with lived experience, and representatives from organizations serving Black, Indigenous, People of Colour (BIPOC), and other racially and ethnically diverse communities in PEI.
The CAG is co‑chaired by one community representative selected by the community members themselves, and one government representative. Recommendations to the Project Team are made using a consensus-based model, with voting authority held exclusively by community representatives, reinforcing community stewardship and accountability in the governance process.
- Providing community recommendations to the RE Data Collection Project Team on ethical and culturally grounded use of RE data, safeguarding community expectations and ensuring that decisions related to data collection, use, disclosure, protection, interpretation, and reporting are safe, ethical and culturally appropriate.
- Reviewing all RE data access requests submitted to the RE Data Collection Project Team and issuing a written response to the Project Team. The CAG will have the opportunity(ies) to consult a Chief Public Health Office epidemiologist to discuss any technical considerations of a data request. They may also request other resources, such as an HPEI privacy consultant, to support deliberation on data requests. The written response from the CAG should outline community considerations, conditions, or concerns relevant to the proposed use and reporting, and a recommendation for approval or denial of the request.
Key Project Stakeholders
PEI Anti-Racism Table: provides recommendations on anti‑racism principles within the project, including identifying systemic barriers, advising on equity‑focused practices, and adding a culturally inclusive lens to project activities, including data use and community engagement.
Indigenous Communities: Indigenous Communities (Lennox Island First Nation) and their representatives (Mi’kmaq Confederacy of PEI and the Native Council of PEI) are supportive of ongoing engagement to provide recommendations to the RE Data Collection Project Team and the CAG to support and advance Indigenous peoples’ health and wellness, so that RE data is used in ways that contribute to addressing the gaps in health outcomes for Indigenous peoples.
PEI Cancer Action Plan Steering Committee: provide strategic cancer-related expertise and recommendations to the RE Data Collection Project Team to support decision making and advise on areas of alignment between the project and the objectives of the PEI Cancer Action Plan.
Frequently Asked Questions (FAQs)
What you will be asked
A single question - adapted from the Guidance on the Use of Standards for Race-Based and Indigenous Identity Data Collection and Health Reporting in Canada (see page 9, also provided below), will be added to the PEI Health Card Application and Renewal Forms. You may voluntarily self-identify by choosing all race categories that apply to you from the provided list. There will also be an option for you to specify another race category by writing in your race and to select “Prefer Not to Answer” if you do not wish to disclose this information.
How can I voluntarily provide my race and ethnicity information?
When you apply for or renew your PEI Health Card, you may choose to voluntarily share your race and ethnicity. You can also provide this information before or after your renewal period by submitting a Notice of Change to Race and Ethnicity Data Form (Coming Soon, Mid-end of May 2026) to PEI Medicare. You may also request to change or remove your race and ethnicity data, at any time, using this form.
More information about PEI Health Card application and renewal or the Notice of Change to Race and Ethnicity Data Form can be found in the following links:
- Apply for PEI Health Card
- Renew PEI Health Card
- Renew Temporary PEI Health Card
- Replace a Lost or Stolen PEI Health Card
- Notice of Change to Race and Ethnicity Data (Coming Soon, Mid-end of May 2026)
How will my responses be protected?
Your RE data is protected by law, Freedom of Information and Protection of Privacy Act and Health Information Act, stored securely within Health PEI, and used only for approved health planning and quality improvement purposes.
How will my RE Data be Collected?
Your RE data will be voluntarily collected through PEI health card application and renewal processes (paper and electronic forms). This information may also be added, updated or removed at any time, separate from health card application or renewal, by submitting a Notice of Change to Race and Ethnicity Data Form (Coming Soon, Mid-end of May 2026) to PEI Medicare.
Will my health care provider have access to my race information?
No. Your race-based response will not be shown on your PEI Health Card or added to your medical record/chart (paper and/or electronic), so cannot be viewed by your health care provider. The race data will be used at the population level for health planning and quality improvement, not for individual care.
Please note that this does not restrict patients from voluntarily sharing their individual RE information with their health care provider during point of care, if they feel it is relevant to their treatment or care.
Why am I being asked to complete the resident experience survey during my PEI health card application or renewal process?
You are requested to complete this survey to help us understand your experience and/or hesitations sharing your race and ethnicity information during PEI health card application or renewal processes. Your feedback is important to help us evaluate this approach and make sure race and ethnicity data collection is done in an effective and respectful way. Taking the survey is voluntary and will not affect your health card application or renewal, or access to health services.
Where can I find more information?
You can contact the Project Team by email: redatacollection@ihis.org
Race and ethnicity project media articles
- CTV News- P.E.I. health card: Province to collect race, ethnicity info
- The Guardian- P.E.I. to collect voluntary race and ethnicity data
- CBC News- Voluntary race and ethnicity question to be added to P.E.I. health card application | CBC News
- The Global & Mail- PEI to collect voluntary info about race, ethnicity in health card applications - The Globe and Mail
- The Guardian- Cheers to Health P.E.I. and the Department of Health and Wellness for launching a race and ethnicity data collection project
- The Globe & Mail- To address racism in health care, we need to collect data on race