Why a lack of data on urban Indigenous people could be harmful

In Ontario, more than 80 per cent of Indigenous people live off-reserve, but public-health data about them is almost non-existent. A new research initiative aims to change that
By Charnel Anderson - Published on Jan 22, 2020
In 2003, Hamilton opted to direct 20 per cent of the federal homelessness dollars it received to Indigenous-specific housing and social initiatives. (iStock.com/benedek)

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In 2011, Cindy-Sue Montana McCormack, a social planner in Hamilton, was concerned that the city was going to cut its portion of homelessness funding for the city’s Indigenous population.

“It was looking like the city might not renew our 20 per cent of their funding,” says McCormack, who works for the Social Planning & Research Council of Hamilton, a non-profit that aims to improve the quality of life for the city’s residents.

In the early 2000s, Indigenous people in Hamilton represented a little over 1 per cent of the total population. In 2001, a coalition of Indigenous social-service executives estimated that approximately 20 per cent of the city’s homeless population was Indigenous — and suggested that the city dedicate 20 per cent of its homelessness funding to serving that group. In 2003, the city opted to direct 20 per cent of the federal homelessness dollars it received to Indigenous-specific housing and social initiatives.

But, in 2011, an independent consultant evaluated the impact of this funding and found that, while many stakeholders recognized the “unique needs” of people who were both Indigenous and homeless, they also “expressed concern that the allocation of 20% was not based on reliable data.”

So McCormack made her own presentation to the city, backed by findings from the 2011 Our Health Counts Hamilton study, which includes comprehensive data about the health and well-being of Hamilton’s First Nations population.

Our Health Counts Hamilton had found that 13 per cent of the 790 First Nations respondents surveyed reported being homeless, in transition, or living in another type of dwelling not listed on the survey. (McCormack cautions that the estimate is likely “very low.”) The study also found that 78.2 per cent of First Nations people living in Hamilton earned less than $20,000 a year.

The data “made a big impact,” says McCormack. “It gave us the evidence for better negotiations with the city.” The final report to city council on the impact of federal funding on homelessness was changed to reflect this information — and the Indigenous-specific portion of the federal funding remained in place.

Constance McKnight, CEO of De dwa de dehs nye>s Aboriginal Health Centre, says that, since 2015, the funding has helped house more than 300 Indigenous people through the centre’s Homeward Bound program. (DAHC was also a partner on the Our Health Counts Hamilton study.) “We may not have ever been in the position to do that if it wasn’t for the data,” she says.

The Hamilton study was the first of a series: Our Health Counts studies have now also been completed in Ottawa, London, and Toronto, and data is being collected in Kenora and Thunder Bay. (Our Health Counts Winnipeg is expected to be underway soon.)

The Our Health Counts studies — run by Well Living House (part of the Centre for Urban Health Solutions, Unity Health Toronto) in partnership with local Indigenous community-health organizations and funded by the Ontario Ministry of Health and Long-Term Care, the Canadian Institutes of Health Research, and partnering Indigenous organizations — aim to fill the existing health-data gap on urban Indigenous populations in Canada. In Ontario, for example, although more than 80 per cent of Indigenous people live off-reserve in urban or rural areas, relevant, high-quality public-health data about urban Indigenous populations is almost non-existent.

Experts say that this lack of data means that many aspects of urban Indigenous health and wellness are not properly understood, making it challenging to develop policies and infrastructure to address the issues.

The reasons behind the dearth of data are multiple and complex, says Janet Smylie, a Cree and Métis family physician and the studies’ scientific lead. Indigenous people often aren’t identified in health-data sets, she notes. And, she says, there’s a common misconception among many that Indigenous people live only in rural and remote areas: “If we don’t challenge this myth that there’s no, or very few, Indigenous people living in cities, then it’s impossible to respond to the needs of Indigenous people living in cities. If we want to work towards thriving Indigenous nations, then we need to be counted.”

Colonialism plays a role, too, Smylie says: “Part of [the reason for the lack of health data on urban Indigenous populations] is historic and ongoing colonial processes, where federal and provincial policy makers want to limit their treaty and fiduciary responsibilities to First Nation, Inuit, and Métis people … the idea was to get Indigenous people assimilated to reduce our numbers.”

Compounding the issue, according to Smylie, is that much of the available data is deficit-based, meaning it’s focused on the problems within a community (rates of diabetes and suicide, for example), instead of on the strengths (rates of addiction recovery) — and this can contribute to the stereotyping and marginalizing of Indigenous people. “What that means is that we end up getting into a very downstream space around both conceptualizing who we are as people, and also responding and creating services to support us,” she says. “So we’re far downstream from a prevention space, and we’re missing opportunities to understand and imagine ourselves richly.”

Deficit-based data is just one example of the way in which the Canadian health-care operates “in tension with local Indigenous community requirements or ways of thinking,” she says. “Health services and systems haven’t been set up with local First Nation, Inuit, or Métis ways of knowing and doing kept in mind. So [for Indigenous people] there’s just a natural inefficiency in those things.”

That’s why it’s important for Smylie that Our Health Counts is a collaborative, Indigenous-led, community-based research project. The study is conducted in tandem with local Indigenous health organizations, which survey participants about a wide range of topics — including  housing, nutrition, health conditions, mental health, substance use, and access to health care — using respondent-driven sampling. Smylie says that the approach, which sees researchers start with a couple of participants and then give them tickets to hand out to other people they know, is particularly effective when it comes to Indigenous populations because it draws on strong kin networks within communities.

Smylie also grounds her Our Health Counts research in the concept of Indigenous governance and in the Ownership, Control, Access, and Possession principles developed by the First Nations Information Governance Centre: the communities that participate in the research own the data. “Health information is a natural resource, like water,” Smylie says.

Both McKnight and McCormack appreciate the efforts researchers made to include Hamilton’s Indigenous community in the process. That the study was created by, and for, Indigenous people “makes all the difference in the world,” says McKnight.

Although Our Health Counts has created comprehensive health-data sets for a growing number of urban Indigenous communities in Ontario, Smylie says that the research is only a “stopgap measure,” one that became necessary “because Indigenous people in cities have been left out of the infrastructure that’s built to ensure that every human being in Canada is counted in [public-health data].”

Moving forward, Smylie says, her goal is to “improve the architecture of Indigenous health information systems, with a particular focus on ensuring that Indigenous people in cities are ‘counted in’ and that they get to benefit from the same kind of health assessment and response that is a public-service standard here in Canada, for all Canadians.”

Correction: An earlier version of this article presented funding information for the Our Health Counts studies that, in fact, related only to Our Health Counts Hamilton. TVO.org regrets the error.

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