P.E.I. to collect race and ethnicity data

Residents in Prince Edward Island will soon be able to offer race and ethnicity information when applying for, or renewing, a health card. (CTV News)

CHARLOTTETOWN — A new, voluntary question will soon be added to Prince Edward Island health card applications and renewals: race and ethnicity.

The province says the change is meant to help close long-standing gaps in health data, as systems across Canada move toward collecting more detailed demographic information to better measure inequities in access, experience and care. Starting April 1, applicants will be able to select categories that apply or choose not to answer.

“It is vital to be able to investigate and take action on differences that people have with quality and outcomes in the health system,” said Dr. Karen Phillips, provincial epidemiologist with the P.E.I. Department of Health and Wellness.

Currently, researchers can look at whether different age groups or genders have varying experiences, but not race or ethnicity.

In the first year, Phillips said the project will focus on cancer care.

“There is evidence of differences by race in diseases such as cancer, but there is also evidence of differences in access to care or how people feel safe receiving their care,” she said, adding some may want to access services like cervical cancer screening differently based on cultural or religious beliefs.

Project development lead Sarah Muthee said collecting this information is part of building a fair, accessible and more inclusive health-care system, especially as the province’s population has grown in recent years, in part due to immigration.

“It’s very important to ensure the diverse population that we currently have is able to access health care in a safe, respectable and culturally appropriate way,” said Muthee, whose work with the Department of Health and Wellness focuses on equity data and collection.

Nationally, collecting race and ethnicity information in health care has been a growing focus, particularly after the COVID-19 pandemic increased attention on how social determinants shape risks and access.

In May 2020, the Canadian Institute for Health Information introduced an interim standard for race-based and Indigenous identity data, which has been updated multiple times.

According to its Vision 2030 report released last year, the Public Health Agency of Canada said there has been “long desired progress,” but more work is needed to fully bring the data into monitoring and decision-making.

In Nova Scotia, the provincial government has launched a similar effort. Through the province’s Fair Care Project, residents can opt in to share race-based and linguistic identity information with the health-care system, also through health card applications or renewals.

Back on the Island, community sessions are a core component of the rollout, with Islanders weighing in on how they want the data collected, stored and used within the health system.

“We want to gather feedback from Black, Indigenous, people of colour, racially and ethnically diverse residents of P.E.I.,” Muthee said. “The most important thing to note is that this information is not being collected at the point of care.”

That feedback, she said, will help inform the development of policies that complement existing privacy legislation in P.E.I. The Health Information Act, for example, sets safeguards.