Dr. Catherine Cook knows a thing or two about the challenges of delivering health care in Manitoba's North.
Born and raised on Matheson Island, located midway up Lake Winnipeg, Cook took a position as a family physician with the University of Manitoba's Northern Medical Unit in 1989, shortly after graduating from the University of Manitoba's Faculty of Medicine. For much of the next six years, she lived out of a suitcase as she flew into the remote communities that dot the top half of the province, providing care to the First Nation, Inuit and Métis residents who live there.
"The first year that I worked in the North, I went wherever they sent me," says Cook. "I worked in Peguis, Norway House, Churchill, Bloodvein, St. Theresa's Point, Grand Rapids . . . "
Cook has always had a deep affection for these tightly knit communities, where the cultural traditions of First Nations and Métis were as diverse and captivating as the region's picturesque landscape. "The land is very beautiful," she says. "So it was kind of a no-brainer coming to work there after I became a doctor."
In addition to the rugged beauty, however, Cook also gained a glimpse into something else: the challenges that people living in these communities face, especially when it comes to accessing health care.
Indeed, just getting access to care is an issue. Cook, for example, was one of a handful of physicians providing care in an area covering hundreds of thousands of square kilometres. Some patients had serious medical conditions, such as tuberculosis or diabetes - made all the more difficult to manage by lack of access to health-care services. Things people in southern Manitoba take for granted - such as fresh vegetables and fruits, and adequate housing - were hard to come by and costly in the North, often more than residents' limited budgets could afford. And wellpaying jobs, infrastructure like paved roads, sewage and running water were few and far between.
Not surprisingly, Cook emerged from her northern adventure determined to make things better. "That whole issue (of health care in the North) has kind of consumed my life from a very early-on period," she says. "As a reasonably young and inexperienced family physician, I just didn't understand why health care wasn't simpler than it was."
Over the years, Cook, who is Métis, has worked to improve the delivery of care, first as a physician and then as an administrator and professor. Today, she holds the joint position of Associate Dean of First Nations, Métis & Inuit Health at the University of Manitoba's Faculty of Medicine and Vice-President of Population & Aboriginal Health for the Winnipeg Health Region.
But her work does not stop there. In addition to her administrative and academic duties, Cook is also the Manitoba lead for a national grant that is helping to redefine the nature and scope of Aboriginal health research across Canada. The capacity-building grant is called Networks Environment for Aboriginal Health Research (NEAHR). According to the Canadian Institutes of Health Research, which funds the grant, NEAHR is essentially a network of centres across Canada that focus on Aboriginal health issues and help support and develop Aboriginal health researchers. In doing so, it is helping to build a critical mass of Aboriginal doctors, nurses, specialists and researchers who understand the challenges and needs of Canada's First Nations, Métis and Inuit people.
For Cook, the importance of Aboriginal health research, or, more precisely, health research done in collaboration with Aboriginal people, cannot be overstated.
First Nations, Métis and Inuit peoples make up only about four per cent of Canada's overall population, but in Manitoba, they represent more than 17 per cent of the population, and they are the fastest growing demographic in the province.
Statistics Canada forecasts that by 2017, 31 of 100 births in Manitoba will be Aboriginal, up from 26 of 100 in 2006. The number of Aboriginal youth is projected to account for 23 per cent of all Manitobans between the ages of 20 and 29 by 2017.
But First Nations, Métis and Inuit peoples also suffer from more illness and, as a result, often have shortened life expectancies.
Here are a few facts to consider:
- Statistics Canada reports that infant mortality among Inuit people is three times the national rate, and for First Nations, it's twice the national rate.
- Health Canada reports that Aboriginal people have higher rates of chronic diseases. For example, Type 2 diabetes affects First Nations and Métis people three to five times more than the general population. They also face higher incidence of infectious diseases. Rates of tuberculosis are 10 times higher among First Nations and Inuit.
- Life expectancies of First Nations people are also shorter compared to other Canadians. First Nations men live on average seven years less than other Canadian men, and First Nations women live five years less than other Canadian women. The rate of premature deaths among Métis is also higher than the average - 4.0 deaths per 1,000 people aged 0 to 74 compared with 3.3 per 1,000 for all other Manitobans. In Winnipeg's Downtown and Point Douglas areas, the rates are 7.6 and 6.2 per 1,000, respectively, according to a study produced by the Manitoba Métis Federation and the University of Manitoba's Manitoba Centre for Health Policy entitled, Profile of Métis Health Status and Healthcare Utilization in Manitoba: A Population-Based Study.
- Statistics Canada reports that First Nations and Inuit people have higher rates of suicide, especially among young people. The suicide rate of First Nations youth is five to six times higher than the national average, and for Inuit youth, it's 11 times higher. In fact, suicide has become the single greatest cause of injuryrelated deaths for First Nations and Inuit peoples. In Manitoba, Métis prevalence of suicide or attempted suicide was 38 per cent higher than other Manitobans, the MMF and U of M study found.
That First Nations people face serious health issues is not new. But the growth of the Aboriginal population and its increasing demographic and economic importance does bring new urgency to efforts to understand and address these and other health issues. In order to do that, one must first understand the underlying causes.
Dr. Kathi Avery Kinew is the Manager of Research and Social Development for the Assembly of Manitoba Chiefs, a member of the NEAHR team, and an author of several studies on the health of First Nations people.
She explains that First Nations health problems are rooted in geographical barriers, a lack of economic opportunities, poor housing and living conditions, and other social and political problems that have their roots in more than 200 years of colonialism, racism and oppression. "There are centuries of oppression that we're trying to come out from under," says Kinew, who has earned her Ph.D from the University of Manitoba. "We're trying to come out from under the Indian Act, residential schools and all these other obstacles that developed under colonialism. These are what are making people sick."
Cook says these problems have been exacerbated by inter-governmental wrangling when it comes to providing care. "It's always been a real challenge to organize very seemingly simple programs, which would benefit people in an equitable way, because of something I call jurisdictional ambiguity," she says in reference to the relationship between the federal and provincial governments with regard to their responsibilities for providing health care to First Nations, Métis and Inuit in Manitoba.
"The federal government has responsibility for some health services for First Nations clients and for the health benefits that First Nations people access," she says. "They're basically responsible for making sure that First Nations people have access to health services." The province is responsible for providing insured health care services. "So there's a need for the two to come together and plan for the services for First Nations clients, but it doesn't always work that way because there are certain things that the federal government doesn't do and there are certain things that the provincial government doesn't do," she says.
A diabetes screening program, for example, is typically administered and funded by the province. Traditionally, however, these services aren't provided on reserves - even though they're sorely needed. The provincial government could provide screening on reserves, but that would prove difficult because the support services aren't always available.
"For example, it would be quite simple, theoretically, for the province to provide the screening on the reserves and for the two of them - the province and the federal government - to come together and say, ‘Okay, in order to meet the needs of people who have diabetes, these are some of the services we could put in place,'" she says. "But it's been a challenge."
One example where the challenge has been overcome is the Manitoba First Nations Diabetes Integration Project (DIP), led by nurse Caroline Chartrand and Dr. Barry Lavallee (a NEAHR Co-Investigator and Director of the Centre for Aboriginal Health Education). The DIP serves twelve First Nations communities through activities focused on prevention strategies, clinical assessments, and interventions in nutrition, foot care, and mental health supports. The Diabetes Integration Project, funded by the Federal Aboriginal Diabetes Initiative, is mandated by the Assembly of Manitoba Chiefs and reports to the Chiefs Task Force on Health.
A key to overcoming these types of problems lies with self-determination, which is considered one of the social determinants of health.
As Kinew explains, there are many important social determinants of health for First Nations, Métis and Inuit peoples, including income, education, unemployment and job security, early childhood development, housing, Aboriginal status, race, gender and disability. But selfdetermination may be the most important. "Selfdetermination is a major social determinant of good health because now people are starting to make decisions that they were denied the ability to make before," she says.
She points to the Indian Act of 1876, a piece of legislation that reflects the pervasive colonialist attitudes of the European settlers at the time who had claimed Canada as their own. The act sought to assimilate Aboriginal people into the dominant culture. It largely hamstrung Aboriginal people's self-determination, putting them under control of federal government bureaucrats, known as Indian Agents, who could arbitrarily make decisions for Aboriginal people. This history of paternalism has often fostered a sense of distrust between Aboriginal communities and Canadian institutions, such as government, the health-care system and social services.
Funding through NEAHR, and its predecessor, Aboriginal Capacity and Developmental Research Environments (ACADRE), has helped address some of the issues around self-determination.
To the casual observer, NEAHR and ACADRE may seem like one of a number of programs that help propel the world of medical research. But an argument could be made that these little-known programs have helped lay the groundwork for a fundamental transformation in the way Aboriginal health research is conducted in Canada.
ACADRE was first established in 2001. At the time, CIHR officials recognized that while there were a number of research projects taking place within the field of Aboriginal health, there was a need and an opportunity to build a more comprehensive research network, one that would enhance the value of Aboriginal health research in Canada.
In Manitoba, that effort was led by several people, including Dr. John O'Neil, who was the initial ACADRE grant recipient and who helped push forward Aboriginal health research in Manitoba. "Winnipeg was one of four initial sites that received ACADRE grants," says Cook. "The first one focussed on supporting Aboriginal students interested in health research or (non-Aboriginal) students interested in Aboriginal health research. That was under the leadership of John O'Neil and his team. He had partnerships with the Assembly of Manitoba Chiefs and a real strong group of researchers at the university who have focused on Aboriginal health research."
Cook joined this group during the second phase of ACADRE in 2004. By the time ACADRE morphed into NEAHR, Cook took over as the principal investigator, or lead, for the program in Manitoba.
With NEAHR, the initial support for Aboriginal health research was expanded from the University of Manitoba to include representatives of the University of Winnipeg, University of Brandon, and the University College of the North. In addition, the focus of the NEAHR grant was more sharply focused on the need to build capacity for research within Aboriginal communities.
"The focus went more towards building capacity for First Nations communities to do research as Aboriginal people, and Aboriginal communities," says Cook. "It wasn't just focused at the university."
Essentially, the capacity building efforts through NEAHR fall into three basic categories:
- Funding basic research into Aboriginal health issues.
- Supporting efforts to enhance communication and collaboration between researchers and Aboriginal communities.
- Supporting Aboriginal students in their master's or Ph.D studies so they can get the education and experience they need to become experts in their field of research.
Cook says the change in focus means that some NEAHR funding is now able to flow directly to the Assembly of Manitoba Chiefs and to the Manitoba Métis Federation to support the research projects and capacity building that they want. In doing so, NEAHR is helping to foster an environment that will lead to better research and educational opportunities, which, ultimately, will lead to greater access to medical and social services. "Research has not always been a positive experience for Aboriginal communities," Cook says. "Traditionally, researchers would choose a topic and enter a community not necessarily with the knowledge of the communities, and the ethics approval didn't acknowledge the role of that community, and the information was rarely shared with the community."
NEAHR has helped change that. Since it was started 11 years ago, it has helped improve relations between the University of Manitoba's Faculty of Medicine, the University of Winnipeg, the Manitoba Métis Federation, Assembly of Manitoba Chiefs and other stakeholders, including - most importantly - First Nations, Métis and Inuit people. "What NEAHR has really done," she says, "is build bridges and build capacity between the University and the First Nations and the Métis to allow that dialogue so research projects involve First Nations at the community level, so questions that are important to First Nations are being answered," Cook says.
Put another way, "The focus on the research question is one that is important to communities as opposed to one that is important primarily to the researcher." Cook says this fundamental shift in the way Aboriginal health research is conducted is one reason why "the AMC is so positive about relationships through NEAHR."
For example, she said the Assembly of Manitoba Chiefs was able to draw on funding from NEAHR to help create a process for ethical approval of all research that affects First Nations people. NEAHR funding also helped AMC to support the Health Information Research Governance Committee, which essentially helps vet research proposals.
"What we supported through NEAHR was building the capacity with AMC for ethics approval and research engagement between the university and the First Nations," Cook says, noting that the process was developed in consultation with AMC by NEAHR member Dr. Michael Hart, Canada Research Chair in Indigenous Knowledges and Social Work and assistant professor in the Faculty of Social Work at the University of Manitoba.
"NEAHR helped build capacity with the Assembly of Manitoba Chiefs to make sure that research wasn't done without First Nations involvement. The researchers find this a huge benefit. It just makes the relationship building so straightforward, whereas before there was a real lack of trust," she says. "By supporting the Assembly of Manitoba Chiefs, it means all researchers can come to the First Nations, present their proposal, and then the community will assign someone to work with them (the researcher) to refine it so that it meets the needs of the community."
Leona Star is a policy analyst at the Assembly of Manitoba Chiefs and a member of NEAHR. She also works on the First Nations Regional Health Survey (RHS) as well as the upcoming Regional Education Early Childhood Development Survey. NEAHR provides funding for AMC's Health Information Research Governance Committee to meet and provide oversight and guidance to the RHS, as mandated by the Chiefs.
"The RHS is the only survey in the world that is designed, delivered and controlled by indigenous people," she says.
The RHS is a holistic survey that looks at the social determinants of health such as income, education, housing, culture and language, and the intergenerational impacts of residential schools. "The Regional Health Survey asks those questions that are relevant to First Nations, such as residential schools, suicides, the quality of housing, and the cost of food."
In its third phase since it began in 1996, the survey is internationally recognized. "This survey has been reviewed by Harvard and is considered unique in the world in terms of the way it's governed and First Nations led and implemented," she says. "First Nations have been engaged in every single stage of that research process, and now we have valid data to help move programs forward or help create effective programs within communities."
Through its capacity-building efforts, NEAHR has enhanced the value of numerous research projects. One example is a study on housing and tuberculosis conducted by Dr. Pam Orr, a professor of Internal Medicine, Medical Microbiology and Community Health Sciences at the University of Manitoba's Faculty of Medicine, and Dr. Linda Larcombe, assistant professor of Internal Medicine and Medical Microbiology. The research study was co-authored by Chief Joe Dantouze, of Northlands Denesuline First Nation, and the late Chief Lloyd McKay, of Tootinaowaziibeeng First Nation.
Another is a study into prenatal care for inner-city Aboriginal women by Dr. Maureen Heaman, (CIHR) Chair in Gender and Health at the Faculty of Nursing, and Dr. Michael Moffatt, Executive Director for Research and Evaluation for the Winnipeg Regional Health Authority, and a professor in the Departments of Community Health Sciences and Paediatrics and Child Health at the Faculty of Medicine. That study looked at what accounted for the differences between those who received good care and those who didn't. Cook and others from the Winnipeg Health Region also collaborated on the prenatal study. In both cases, says Cook, the fact that the lead researchers were able to take their proposals to the AMC's HIRG facilitated dialogue between all the parties on how to enhance the research in question "and make it better."
Cook says NEAHR also supports research projects that touch on social work, economics and even historical research. Dr. Mary Jane McCallum, for example, is a historian at the University of Winnipeg who completed her thesis on the history of First Nations nurses in Canada. She received a fellowship through NEAHR to help with the study.
Cook says McCallum's work is important to the bigger picture - that is improving overall well-being for Aboriginal peoples. "If you look at some of the reasons why First Nations women were excluded from nursing and other higher education, you really are focusing on the history of First Nations people overall."
First Nations women have historically been excluded from nursing, not just as a result of decades of societal and institutional racism, but also because they faced geographical challenges in accessing the nursing schools because many didn't live near the post-secondary schools.
It's a point that resonates with Cook. She spent much of her later childhood years a 12-hour bus ride away from her family, attending school at Cranberry Portage Frontier Collegiate north of The Pas.
"All those things, like actually living in the town where you're seeking your education, can be quite significant barriers," Cook says. "Dr. McCallum followed that history of overcoming these barriers and having initial role models and initial mentors in that system."
While there is no question that the support for Aboriginal research through NEAHR and other programs will benefit the communities directly involved, Cook says the benefits do not end there.
"People see Aboriginal research as only relevant to Aboriginal people. But, some of the things you can learn about community dynamics, social engagement and community capacity are really important and can be applied universally."
As principal investigator for NEAHR in Manitoba, Cook continues to look for ways the research grant can be used to further the goals of supporting Aboriginal health research. But she is also extremely appreciative of the people who laid the groundwork for all the work that has been done over the last decade or so, starting with ACADRE and then with NEAHR. She lists the names of people well known in this province's closely-knit health research community and who played important roles in making Manitoba a leader in Aboriginal health research, people like Heaman, Moffatt, and Orr, as well as Pat Martens, Director of the Manitoba Centre for Health Policy and a professor in the Faculty of Medicine's Department of Community Health Sciences; Sharon Bruce, an associate professor in the Community Health Sciences Department at the University of Manitoba's Faculty of Medicine; and Brenda Elias, an assistant professor in the Community Health Sciences Department and a former Co- Director of MFN CAHR. "They were all the original people on the ACADRE grant," says Cook, "and they continue to do work today. I am just fortunate to have been able to continue the work as the principal investigator for the grant."
Joel Schlesinger is a Winnipeg writer.