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Collecting race-based data: A key step to improve health outcomes for Black populations and address racism

Black woman being screened for breast cancer with mammography.

[In order to design programs and interventions that improve Black populations' health outcomes, such as with cancer screening, providers need to collect race-based data to identify where gaps and systemic racism exist. Photo credit: National Cancer Institute]

February is Black History Month, and the Alliance will be looking back, ahead and celebrating Black Canadians' resilience and survival through slavery, colonization and racism while creating strong, vibrant communities. This week, we're bringing you some stories on why collecting race-based data in health care is an essential step to moving forward with health equity for Black populations in Ontario.

There have been a number of stories in recent months on the poor outcomes that result when gaps in health care, systemic racial bias, and racism prevent Black people from being able to access the services and programs they need to support health and wellbeing. But that's only part of the picture.

A movement among health providers over the last 12 years has yielded frameworks that providers are using to ask questions to build pictures of where race-based gaps, racism and racial bias exist in Ontario's health system. The “We Ask Because We Care” initiative is a project has resulted in socio-demographic data collection in 16 Toronto-area hospitals and Community Health Centres. As of November 2015, more than 261,000 patients had been approached for data collection. Here's an example of what that survey looks like in English.

Using data collected in culturally safe ways to make interventions, like this one by TAIBU CHC on cancer screening, shows the potential that collecting this data holds. It's also evident in this presentation by Women's Health in Women's Hands, talking about the ways that data informed interventions help to adapt mental health care services and programs for Black women. Still other initiatives, such as Pathways to Care, are engaged in collecting and using data to paint a picture for the first time of the gaps and barriers in services and programs for Black children, youth and families to support mental health and wellbeing.

In a recent essay, Kofi Hope, Senior Policy Advisor at the Wellesley Institute, makes the case for how the collection of data has worked in tandem with community advocacy and policy development to support culturally safe interventions for Black youth. "When we overcome the Canadian discomfort with talking directly about race, and see policy interventions specifically for Black communities as a core component to creating solutions, we can actually move the dial," Hope writes. He also outlines some of the next steps that must happen to address ongoing inequities and combat anti-Black racism across all sectors of our society.

Lastly, for staff at health care organizations looking to collect race-based data and looking for hands-on tools to begin to do health equity work, a group of Alliance members has created a Health Equity ToolKit and training modules, which are designed to offer practical frameworks for doing this work in a culturally safe way, through an anti-oppressive lens.

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