Canadian Indigenous Health Risk Factor Surveillance: Not a Pretty Patchwork

The risk factors affecting the health of indigenous Canadian adults are often severe. According to the most recent nationwide survey, which reached almost 22,000 people living in 216 First Nations communities in 2008, approximately 57% of adults over 18 years old in First Nations communities are current smokers. 40% are obese. Almost 50% are physically inactive. Only 30% eat a nutritious and balanced diet. Among First Nations women, 40% have never performed a breast self-examination, and 59% have never had a mammogram. First Nations males were much less likely than those in the general Canadian population to undergo a physical prostate check. 

The social realities behind these risks are stark. 58% of adults living in First Nations communities reported a total annual personal income of less than $20,000. Only 4.9% of First Nations adults reported having obtained a university under-graduate, graduate, or professional degree, compared to 22.6% of the general Canadian population. About one-quarter of First Nations adults live in over-crowded housing — triple the figure among the general Canadian population — and half of First Nations adults were living in homes with mold or mildew.

Indigenous health outcomes dramatically mirror these risks. By age 60, approximately half of First Nations adults have been diagnosed with four or more chronic health conditions — most commonly high blood pressure, diabetes, arthritis, and back pain. The rate of diabetes in the First Nations population is three to five times higher than that in the general Canadian population. The rate of heart disease is 1.5 times higher among First Nations. Approximately half of all First Nations adults reported either moderate or high levels of psychological distress, compared to one third of adults in the general Canadian population. First Nations adults are two and a half times more likely than other Canadians to report suicide ideation at some point in their lifetime. 

Similarly disturbing risk profiles prevail among First Nations youth, children, and infants. First Nations mothers are 33% less likely to breastfeed than other Canadian mothers. Almost half of First Nations mothers smoke during pregnancy. One in three youths living in First Nations communities are smokers, compared to one in twelve youths in the general Canadian population. Approximately half of First Nations youth are overweight or obese. Injuries are responsible for 26% of deaths of First Nations youth compared to 6% of deaths in the general Canadian population. Of the First Nations youth who consume alcohol, more than half report frequent binge drinking (once a month or more) — a rate much higher than in the general Canadian youth population. 

These figures are drawn from First Nations Regional Health Survey (RHS) Phase 2, which was initiated in 2008 and completed in the fall of 2010. Coordinated nationally by the Assembly of First Nations, and guided by the First Nations Information Governance Committee, with representation from regional First Nations organizations, the RHS revealed stunning inequities between the health of indigenous and non-indigenous Canadians. This survey, says Fred Wien, lead investigator in the Halifax-based Atlantic Aboriginal Health Research Program, contains the best health surveillance data currently available for Canada’s 1.4-million indigenous people. But startling as they are, the RHS data are troublingly incomplete, since they do not include data from the estimated 60% of indigenous Canadians who live “off-reserve”. And the data are increasingly dated, adds Wien. “The RHS is scheduled to go into production for another round this calendar year,” he explains. But the detailed planning, he notes, “hasn’t started yet, at least it’s not visible yet at the regional level.” 

In the meantime, says Wien, the First Nations Information Governance Committee is in the midst of a survey called First Nations Regional Early Childhood, Education and Employment Survey (REEES). The REEES was conducted in 250 randomly selected First Nations communities (239 reserve communities and 11 communities in the north) in 10 regions across the country with the initial results scheduled to be released in 2015.

An environmental scan of First Nations, Inuit and Métis population health surveys conducted in 2011 by Kue Young, Professor and Dean of Public Health at the University of Alberta, notes two other datasets alongside the RHS. The Aboriginal Peoples Survey (APS), which was conducted by Statistics Canada after the censuses of 1991, 2001, 2006, and 2012, contain a variety of social, economic, and health-related variables. But these data are not representative of the national or provincial on-reserve population, Young reported, and results from analyses of APS on-reserve data is only representative of the participating reserves.

Young also noted a series of surveys, known as the Inuit Health Surveys (IHS), conducted in the 4 Inuit regions during 2004-08 by academic researchers at Laval, McGill and Toronto universities in collaboration with Inuit regional organizations and territorial governments. Preparations are currently underway to mount another IHS in 2016, says Mylene Riva of the Centre de Recherche du Centre Hospitalier Universitaire de Québec. Riva is also the lead of a project aiming to build a circumpolar Inuit health cohort study, which for now includes only Nunavik and Greenland. “We are at the beginnings of developing the project in collaboration with the community,” she explains. “I think we are a few months away from having something concrete to share. It’s not yet fully funded. The whole survey is under the umbrella of the public health division of the Nunavik Regional Board of Health and Social Services.”

Although there is a long history of health surveys in Canada, none of the surveys conducted since 2000 sampled all Aboriginal groups — First Nations (on- and off-reserve), Inuit, and Métis — in all regions, Young noted in his scan. “It is evident that surveys conducted by Statistics Canada have avoided (or were unable to cover adequately) First Nations reserves,” Young concluded, while noting that defining who is an Aboriginal person “is a major problem, as different surveys used different definitions and criteria.” 

For national surveys conducted by Statistics Canada, Young explained in his scan, the concepts of “ancestry” and “identity” have been used, and for some years, also “race”. Depending which concept was used, and how the question was constructed, Young lamented, “the resulting Aboriginal populations differ and do not overlap completely.” 

A 2012 Health Canada study titled “Denominator Guidelines for Health Surveillance in First Nations Populations in Canada” echoes Young’s concerns around surveillance terminology. “Calculating rates for this population can be difficult, due to limitations in data sources to provide accurate and timely population estimates,” Health Canada acknowledged. “Finding an appropriate denominator to calculate rates for First Nations health data has been a long-standing challenge.”

Canada’s indigenous health surveillance system, says Dr. Janet Smylie, a Research Scientist with the Centre for Research on Inner City Health, St. Michael's Hospital in Toronto, “is pretty patchwork, with absent or poorly standardized indigenous identifiers.”  

dr. Malcolm King

dr. Malcolm King

Increasingly, indigenous researchers are questioning not just the coherence of this surveillance patchwork, says Malcolm King, Scientific Director for the Canadian Institutes of Health Research’s Institute of Aboriginal People’s Health, but its overall orientation. 

King, alongside Jeff Reading, interim director of the University of Toronto’s newly-launched Institute for Indigenous Health, calls for applying “life course epidemiology” to aboriginal health research. 

Reading agrees, noting that the problem with the adult risk factor approach is that, “while adults are being targeted to change their lifestyle habits, the next generation will grow up in the same conditions that have fostered the development and onset of chronic disease in their parents. When these conditions are grounded in poor socioeconomic status, the disease risk is increased and the applications of an adult lifestyle approach to chronic disease is ineffective. Social disparities and inequities in health documented in Aboriginal communities across the country suggest that an adult risk factors approach alone is not enough.”

In the last 20 years, life course epidemiology — defined as the study of long-term effects of physical or social exposures during gestation, childhood, adolescence, young adulthood, and adult life on one’s developmental health and later disease risk — has emerged as an alternative approach to the prevailing adult risk model, says Reading.

“While statistics paint a grim picture and need to be used to target public health efforts, not all aboriginal people are unhealthy,” Reading argues. “Extreme poverty and ill health are concentrated in some aboriginal communities but not all.” 

The burning question, says Reading, is “why are some aboriginal communities healthy and others not?” <>