FormalPara Key Points

  • Community-driven research answers questions posed by those who bear the disease burden.

  • Inclusion of Métis leaders in policy design, research, and cancer prevention strategies is crucial to ensure that appropriate interventions are implemented for Métis people.

  • Métis people seeking cancer care face structural, distance, time, financial, cultural, and health challenges that contribute to late diagnosis and poor treatment outcomes and create inequities in cancer incidence.

  • Supportive factors, including assistance with costs and accommodation, and providing a guidebook for patients and support persons, improve treatment outcomes and wellbeing.

Alongside Inuit and First Nations, the Métis are one of the three constitutionally recognized Indigenous peoples of Canada. The Métis are a post-contact Indigenous Nation descended from unions of European fur traders and First Nations women in the eighteenth century. A robust community with a unique identity, culture, way of life, and historic self-government, the development of distinct Métis communities within the Métis Nation Homeland predates the confederation of Canada. The Métis Nation Homeland includes modern-day Manitoba, Saskatchewan, Alberta, and parts of British Columbia, Ontario, the Northwest Territories, and the northern United States [1].

The Métis National Council defines Métis as “a person who self-identifies as Métis, is distinct from other Aboriginal [Indigenous] peoples, is of historic Métis Nation Ancestry, and who is accepted by the Métis Nation” [2]. Those who fulfill these requirements can apply to obtain citizenship in their province of residence. Canadian Census data from 2016 showed 587,545 Canadians who reported Indigenous ancestry identified as Métis; they represented 35% of the total Indigenous population and 1.6% of Canada’s population [3]. The Métis Nation of Alberta (MNA) is the governing body for the Métis people in the province of Alberta, representing over 63,000 citizens. The MNA strives to advance the self-determined priorities of its citizens through socioeconomic, health, cultural, and educational development.

A history of colonial violence and ongoing racism and discrimination within the healthcare system has shaped the unique health experience of Métis people. Beginning in 1885, bureaucratic fraud, motivated by abusive Canadian government land policy, displaced Métis people from their Homeland—an injustice that was only legally recognized by the Government of Canada in 2017 [1, 4]. Despite growing recognition of the impacts of colonialism on Métis people in Canada, jurisdictional barriers to the equitable distribution of health resources persist. Although Alberta has an area of over 660,000 km2, spanning hundreds of distinct municipalities, provincially operated health services are located primarily within the ~50,000 km2 urban corridor between the cities of Edmonton and Calgary, Alberta’s two major urban centers [5, 6]. To address the specific needs of Métis people in Alberta, the MNA established a Department of Health.

Structured around the core pillars of community wellness and health research advocacy, the MNA Department of Health integrates the needs, values, and beliefs of Métis Albertans into all aspects of health intervention. This community-driven approach to wellness ensures that health policy is driven by the self-determined priorities of Métis Albertans. Since 2010, the MNA Department of Health has collaborated with academic researchers and provincial data stewards to design cancer intervention initiatives in Métis communities.

This chapter weaves together Métis perspectives on cancer with findings from analysis of Métis-specific descriptive cancer data to highlight strengths-based approaches to cancer interventions. Our work serves as a guide for future community partnerships that promote evidence-based cancer prevention in Indigenous and Tribal Peoples.

What Is Known

Cancer is the leading cause of death in Canada by a large margin, accounting for 26.3% of all deaths in women and 26.8% in men [7, 8]. Results from a Canada-wide study conducted from 1991 to 2001 identified cancer as the leading cause of death among Métis women (33% of all deaths) and the second-leading cause of death among Métis men (23% of all deaths) [8,9,10]. While there is very little published data comparing Métis and non-Métis cancer patterns, a 2018 publication on cancer incidence and survival among Métis adults across Canada, using an analysis of census data from 1992 to 2009 and cancer data from the Canadian Cancer Registry, reported that, compared to non-Indigenous adults, Métis adults had excess prostate cancer mortality and higher incidence of female breast, lung, liver, larynx, gallbladder, and cervical cancers [11].

While Canadian Indigenous health studies are numerous, few differentiate the three distinct Indigenous peoples recognized in the Canadian Constitution when reporting health findings [8,9,10,11]. Métis people are dramatically underrepresented in health research relative to First Nations and Inuit populations, primarily due to an inability to identify Métis people within administrative health databases [8]. Thus, more studies characterizing the health of Métis people are necessary to identify priorities, develop relevant policy, and design and implement effective and culturally meaningful interventions responding to the needs of the Nation [8].

What Is Being Done

From 2010 to 2017, the MNA initiated partnerships with provincial health officials and academic researchers to address the dearth of Métis representation in health research, with the ultimate goal of investigating cancer epidemiology in the Métis population in Alberta. Among these partnerships was a collaboration with the Canadian North Helicobacter pylori (CANHelp) Working Group in the University of Alberta (UA) Department of Medicine. This group specializes in conducting collaborative research with community partners who currently lack the necessary resources to address community-identified health concerns. The CANHelp Working Group was established between 2006 and 2008 when residents of Indigenous communities and healthcare providers in the Northwest Territories (NWT) voiced concerns about cancer risks from Helicobacter pylori infection. In response, NWT health officials invited UA researchers to investigate the health burden resulting from H. pylori infection in the territory. Subsequent funding permitted the formation of the CANHelp Working Group, which links academic researchers with community leaders and healthcare providers. While initial community projects focused on H. pylori infection and related diseases, the specific goals of research projects are identified by stakeholders in each partnered community or Nation. The publication Stewardship and Dissemination of Knowledge Generated Collaboratively in CANHelp Working Group Community Projects outlines how community-driven research values should guide the collection, management, and use of data and specimens and dissemination of the resulting collaboratively generated knowledge [12].

In 2017, the CANHelp Working Group and the MNA established a research collaboration agreement to identify cancer prevention strategies to support Alberta Métis community goals. Collaborative activities included focus groups to illuminate the cancer journeys of Métis Albertans and the development of Métis-specific cancer journey resources. In 2021, in collaboration with provincial government epidemiologists and data stewards, the CANHelp Working Group and the MNA partnered to produce descriptive cancer incidence and mortality research to characterize the Métis-specific disease burden.

Between 2018 and 2019, the MNA held Annual Health Forums and regional engagement focus groups across Alberta to learn more about the unique cancer survival experience of Métis Albertans. Focus groups took the form of guided discussions in a culturally safe environment, where cancer patients, survivors, family members, and caregivers were invited to share any experiences of importance to their cancer journeys. A Métis Resource Worker—who assists MNA citizens in areas including education, housing, income assistance, employment, financial support, and medical services—was made available to all participants on-site. The goals of these sessions were to (1) inform the development of cancer resources in which Métis culture and experience were reflected, (2) generate better information about culturally appropriate cancer care and support for Métis Albertans, (3) inform future cancer care and support programs, (4) educate relevant stakeholders in the healthcare system, (5) advocate for culturally appropriate resources at the provincial level, and (6) inform the development of the Alberta Métis Cancer Strategy. The CANHelp Working Group conducted qualitative analysis of the focus group transcriptions and aided in developing evidence summary reports.

What Was Found

Analysis of the focus group data identified a number of barriers faced by Métis people seeking cancer care. While primary care experiences varied, several cancer survivors indicated that their healthcare providers did not take their concerns seriously, did not carry out adequate testing, or misdiagnosed their cancer. In addition, the process of receiving a cancer diagnosis was unduly long. Community members affirmed that self-advocacy was essential to overcome this structural violence. Once a cancer diagnosis was received, travel was a near-universal barrier to cancer care due to unbalanced health services across the province. Many participants had limited resources to drive themselves and, given the distance to treatment centers, often faced the burden of having to find their own accommodation. Healthcare practitioners were not usually aware of facilities where patients could stay during their treatment. Family caregivers and support persons were not consistently available as travel companions. When treatment required an extended stay far from home, Métis Albertans were sometimes isolated from their support network. In addition, many patients could not afford to leave their homes or take time off work for treatment.

Members of the Métis community reported feeling alienated by modern cancer intervention strategies. Métis Albertans often take a holistic approach to health and wellbeing, and some view Western medicine as having too many gaps and divergent agendas to meet their needs. The discussions revealed that the provincial healthcare system did not legitimize Métis approaches to wellness; several focus group participants indicated that spiritual aspects of care were ignored or disrespected by healthcare practitioners. Some community members reported that when Indigenous spiritual care was provided in-hospital, Métis-specific wellness practices were not included or were poorly understood. The health priorities of Métis Albertans and Western medicine were often perceived as incongruent; Métis participants reported that seniors received delayed, poorer-quality care relative to younger patients in the provincial healthcare system. These systemic inadequacies created barriers for Métis people seeking cancer care, leading to late diagnosis and poor treatment outcomes.

Despite these challenges, our work identified supportive factors that can be leveraged to improve treatment outcomes and wellbeing. To address regional gaps in health programs and services, the MNA launched the Compassionate Care Cancer Transportation Pilot Program in 2018 to provide financial assistance to Métis citizens for necessary travel to cancer-related appointments. The program provides reimbursement, within 30 days of travel, for travel costs for Métis citizens north of the Edmonton–Calgary urban corridor who must travel long distances (>145 km) to receive cancer care. Travel costs eligible for reimbursement include gas fees, accommodation, food, parking, and related expenses. Focus group feedback was overwhelmingly positive and revealed the program has significantly reduced financial strain and improved mental wellbeing throughout Métis Albertans’ cancer journeys. Subsequently, with the support of Alberta Health, the Urban Programming of Indigenous Peoples program, and the Métis Housing Corporation, the MNA was able to provide safe, accessible, and free accommodation for medical travel to Edmonton, the northernmost Alberta city with tertiary healthcare facilities. With the support of these services, Métis Albertans affirmed that the time period from diagnosis to finishing the first round of treatment was reduced, with less than a month between diagnosis and therapy in most cases.

In addition, this collaboration led to the development of the Miyooayaan (Wellness) Cancer Journey Guidebook, a comprehensive guide for Métis wellness while living with cancer (Fig. 3.1). This guidebook provides recommendations for Métis Albertans covering four broad themes: (1) screening and diagnosis, (2) treatment, (3) caregiver experiences, and (4) posttreatment wellness. In addition to educational resources, it provides information on (1) self-advocacy and patient rights to ensure Métis Albertans can safely navigate available healthcare services, (2) tools to prevent burnout among caregivers, (3) posttreatment support resources, and (4) recommended questions to ask healthcare staff during screening and diagnosis, treatment, follow-up, and beyond. Finally, the guidebook outlines specific recommendations from Métis Albertans, including other MNA programs and services, cancer journey video supports, and external partners who provide culturally safe support.

Fig. 3.1
The front cover illustrates 4 photos of different elderly people at the center. The text at the top reads, Miyooayaan, wellness, within brackets. The text at the bottom reads, A Metis guide for wellness with cancer. The logo for the Metis Nation of Alberta is at the bottom right.

Cover for Miyooayaan: A Métis Guide for Wellness with Cancer [13]

Full size image

Our epidemiologic analysis carried out in parallel with the focus group research identified inequities in cancer incidence among Métis people in Alberta, similar to findings reported previously for all Métis people across Canada. The most common cancers for Métis Albertans and non-Métis Albertans alike were breast, colorectal, prostate, bronchial, and lung cancers. Overall mortality estimates for most types of cancer were similar when comparing Métis and non-Métis people. However, Métis people tended to develop cancers at a younger age compared to non-Métis people: from 2013 to 2019, the proportion of new cancer cases diagnosed under the age of 44 was 35.8% in Métis people and 18.8% in the non-Métis population. As well, the lung cancer incidence rate in the Métis population was 1.3 times [95% confidence interval: 1.1–1.7] the lung cancer incidence rate in the non-Métis population. After stratifying by sex, Métis men had a similar incidence of lung cancer relative to non-Métis men, while Métis women had a lung cancer incidence rate 1.7 times [95% CI: 1.3–2.2] the rate of non-Métis women. While age-standardized incidence rates for all cancers combined decreased slightly between 2013 and 2019 for non-Métis people, these incidence rates either increased or returned to baseline during the same period among Métis people.

This research furthered understanding of the Métis community’s needs and helped to identify the programs and services the MNA would advocate for. Ultimately, the analysis addressed gaps in the information available on cancer in Métis people, to be used by public health and health policy stakeholders to design and implement strategies directed at reducing cancer incidence and mortality. In the final report, Cancer Incidence and Mortality Among the Métis Population Of Alberta, Audrey Poitras, President of the MNA, wrote:

Our community has felt the full force of this disease as it stole our elders, our family members, and our friends. This analysis is essential in understanding the cancer incidence and mortality among Métis Albertans, informing us of interventions we can likely adopt to alleviate the burden of cancer among Métis Albertans [8, p. 3].

Conclusions

This collaboration demonstrates that incorporating the perspectives of those who bear the burden of disease produces novel, high quality, cost-effective, and culturally appropriate research and health interventions. Including the MNA in policy design, research, and cancer prevention strategies was crucial to ensuring that appropriate interventions were implemented for Métis people. Finally, our community–academic partnership built capacity for research autonomy and wellness self-determination among the Métis people. These collaborations will continue for future cancer research and health status surveillance of Métis people. We hope this collaboration encourages future community–academic partnerships that promote evidence-based cancer prevention in Indigenous and Tribal peoples.

This collaboration was made possible through funding from the Canadian Partnership Against Cancer (CPAC) and Alberta Health (“Community–Academic Partnerships for Evidence-Based Cancer Prevention Strategies that Support Métis Community Goals,” Grant #007548). The authors would like to acknowledge the Métis Albertans and their families who shared their cancer stories and experiences and the work of D.C. Sanchez-Ramirez, A. Colquhoun, S.H. Parker, J. Randall, L.W. Svenson, and D. Voaklander, who pioneered the Métis Cancer Incidence and Mortality report in a preceding community–academic partnership. They would also like to acknowledge the work of Li Huang, Senior Epidemiologist at Alberta Health, who conducted the statistical analysis of the updated Métis Cancer Incidence and Mortality report.