First Nations, Inuit and Métis initiatives

Support First Nations, Inuit and Métis-governed data and data systems

First Nations, Inuit and Métis populations in Canada are affected by all three priorities in the cancer data strategy.

The strategy emphasizes the need to uphold First Nations, Inuit and Métis data sovereignty so that communities have access and control over their data – data that can inform efforts to close health equity gaps that exist between First Nations, Inuit and Métis communities and non-Indigenous communities. Specifically, it:

  • supports improved data collection and reporting governed by First Nations, Inuit and Métis;
  • supports First Nations, Inuit and Métis data governance and self-determination; and
  • emphasizes the importance of establishing relationships based on reciprocity, trust and respect.

How these priorities are being advanced in Canada

The following are examples of initiatives being implemented to improve health outcomes for First Nations, Inuit and Métis people across the country. Explore these case studies for inspiration on how the pan-Canadian Cancer Data Strategy priorities can be implemented in your community.

In 2011, Métis Nation British Columbia (MNBC) and the Government of British Columbia signed a historic information-sharing agreement that has enabled better identification of consenting Métis citizens within provincial databases and supported the development of the Métis Public Health Surveillance (MPHS) program.

The MPHS program makes it possible for the BC Ministry of Health to report on specific health outcomes and chronic diseases among Métis citizens. This supports ongoing monitoring and reporting on the prevalence of chronic diseases as well as other health threats such as cancer — all of which can inform the development of targeted health programs.

Looking forward, MNBC and the BC Office of the Provincial Health Officer, along with the BC Ministry of Health, have developed a plan to monitor and report on the health and wellness of Métis people in BC over the next decade. So far, the program has produced two key reports: “Métis Public Health Surveillance Project: Sharing Community Health Information” (2015) and “Taanishi Kiiya? Miiyayow Métis Saantii Pi Miyooayaan Didaan BC [How are you? Improving health and wellness of Métis in BC]” (2021).

This partnership with MNBC represents a true embodiment of BC’s commitment to data governance and self-determination for Métis people.

The Indigenous Advisory Committee (IAC) was established in 2020 to provide input to the British Columbia Office of Patient-Centred Measurement and the British Columbia Patient-Centred Measurement (PCM) Steering Committee on the measurement of cultural safety and cultural humility and ways to decolonize and Indigenize methodologies for patient-centered measurement1.

Over the course of two years and through building trusting relationships and respectful collaboration, a set of 20 questions reflecting indicators in the following 5 key dimensions were developed:

  • Relationship-based care
  • Identity
  • Respect
  • Self-determination and Equity
  • Discrimination

These questions were developed to be used in surveys assessing the following departments:

  • Emergency departments
  • Acute Inpatient
  • Primary Care
  • Mental Health and Substance Use
  • Total Knee and Hip Replacement

Where possible, results are separated by First Nations, Inuit, and Métis populations. The intention is to share what people say about the cultural safety of their care experiences and improve accountability of the health system to address areas where experiences are not positive.

The Northern Inter-Tribal Health Authority (NITHA) is a First Nations-governed health authority established in 1998 by the Prince Albert Grand Council, the Meadow Lake Tribal Council, the Peter Ballantyne Cree Nation and the Lac La Ronge Indian Band. NITHA provides services, resources and expertise to help its partners improve community health and wellbeing in Northern Saskatchewan. In 2018, NITHA and the Saskatchewan Cancer Agency (SCA) partnered with First Nations communities to develop a cancer surveillance system.

The surveillance system works by linking the SCA’s cancer registry and screening databases with Indigenous Services Canada’s band registry information to produce cancer data specific to each First Nation. This linked data allows analysis of the types and frequency of cancer affecting Status First Nations, as well as screening rates, gaps in access to services and survival after diagnosis. With this information, SCA, NITHA and Northern First Nations will work together to better understand cancer programming and outcomes and support First Nation efforts in cancer control.

The Saskatchewan Cancer Agency (SCA) and the Métis Nation–Saskatchewan (MN-S) are working in partnership to develop and implement a sustainable system for Métis-specific cancer surveillance by linking the MN–S Citizen Registry to information already available in SCA’s Cancer Registry and screening programs databases. This linkage will form the necessary foundation for ongoing cancer surveillance for the Métis citizen population in Saskatchewan. This partnership is supported through a Memorandum of Understanding and Information Sharing Agreement signed by both MN–S and SCA in 2021. Information from the cancer surveillance system will be used to inform analyses regarding outcomes related to cancer control among Métis people. These analyses will be co-developed by MN–S and SCA, and will contribute to understanding what is needed to reduce cancer incidence and improve cancer outcomes for Métis citizens in Saskatchewan.

A partnership between Shared Health (the provincial health authority of Manitoba), Ongomiizwin (the Indigenous Institute of Health and Healing at the University of Manitoba), and the Centre for Healthcare Innovation (Manitoba’s SPOR SUPPORT Unit), is making Manitoba a leader in province-wide systematic collection of race, ethnicity and Indigenous (REI) data from patients when they access care at any hospital.

Collecting REI data within a complex health system must be done using a thoughtful, community-engaged approach. This helps minimize the potential for misuse and further harm toward racialized communities and upholds and supports data sovereignty among First Nations, Inuit and Métis rights holders. Governance agreements developed in partnership between the health system, the provincial government, Indigenous governance organizations, and leadership from various racial and ethnic communities within Manitoba will ensure REI data is collected in a culturally safe way, and that the use and release of the data supports health equity and health care improvements.

Mamow Ahyamowen is a health data partnership involving First Nations-governed organizations representing 78 First Nations communities across Northern Ontario. It was established in 2016 in response to the shared challenge these communities face related to the lack of health information for local program and services planning, proposal development, and advocacy.

Planning for health services in Northern Ontario First Nations communities is uniquely challenging because of their remoteness and the long distances people need to travel to access health care, as well as a lack of health infrastructure and inadequate resources for community-based services. Health leaders need quantitative data to understand these inequities, address health needs, and measure and interpret health status over time.

In collaboration with the Chiefs of Ontario (COO) and the Institute for Clinical Evaluative Sciences (ICES), Mamow Ahyamowen is able to access and analyze data collected through provincial and federal systems. A data-sharing agreement between ICES and COO also allows the linkage of this data with the Indian Registry System data about Status First Nations individuals. Mamow Ahyamowen communities have been able to use this data to provide an extremely compelling picture of their health needs. For example, an analysis of mortality data showed that 60% of community members experience four or more chronic diseases such as cancer, diabetes, heart disease and mental health concerns.

As Mamow Ahyamowen works with communities across Northern Ontario, new data needs and priorities continue to emerge, which will drive the partnership’s vision to be “a trusted Northern voice providing the health information our communities need to achieve health equity.”

From 2008 to 2017, the Our Health Counts – Urban Indigenous Health Database Project gathered information about the health and wellbeing of First Nations, Inuit and Métis people living in urban areas to create a baseline health database for these populations. Funded by the Ontario Ministry of Health and Long-Term Care, the project brought together a group of urban First Nations, Inuit and Métis organizations, including the Ontario Federation of Indigenous Friendship Centres, Métis Nation of Ontario, Ontario Native Women’s Association, Tungasuvvingat Inuit and Centre for Research on Inner City Health, to work with a health research team led by Métis physician and public health scholar Dr. Janet Smylie.

Project community sites included Ottawa, Hamilton, Toronto, London, Kenora and Thunder Bay. Project teams worked with urban First Nations, Inuit and Métis community organizations to gather information about the illnesses people had, how they kept well, what challenges affected their health, how they accessed health care and their experiences with the health system. The community-driven sampling process allowed the project teams to link respondents’ data with information about hospitalization and emergency room admissions. In this way, the database helps profile urban First Nations, Inuit and Métis individual, family and community health and wellbeing, while also documenting unmet health service needs.

This data is now being used to inform effective and culturally appropriate population health programs and policies to improve health outcomes. This includes better cancer prevention, screening and care interventions.

The Mi’kmaq of Nova Scotia have demonstrated that there truly is strength in numbers. Through the establishment of the Mi’kmaw Client Linkage Registry (MCLR), strong data sharing agreements with provincial and federal partners, and a clear data governance framework that is firmly rooted in OCAP® principles, the Mi’kmaq of Nova Scotia have forged a new pathway in how information is generated and used to support First Nation health transformation.

Established in 2014, the MCLR is a registry of individuals who are status First Nation, members of a Mi’kmaq Band in Nova Scotia, and eligible for provincial health insurance coverage. At the discretion of the Mi’kmaq, the MCLR is routinely linked with provincial administrative and clinical information data sources for the purpose of providing health indicator reports to Mi’kmaw communities. Indicators are determined by the Mi’kmaq in collaboration with partners such as the Nova Scotia Cancer Care program. The MCLR and the reports that are produced through data linkages are owned and controlled by the Mi’kmaq of Nova Scotia.

Putting the strength of data into local hands supports Mi’kmaq-led health planning including the development of prevention initiatives and needed services to manage cancer and improve the health of Mi’kmaw people in Nova Scotia. Information generated through the MCLR has helped communities secure new health resources.

The Qanuippitaa? [How are we?] National Inuit Health Survey is the only Inuit-controlled health survey program to include Inuit from all ages and all communities across the four Inuit regions (Inuvialuit Settlement Region, Nunavut, Nunavik, Nunatsiavut), as well as Ottawa and other urban centres.

Developed with extensive community and stakeholder engagement, this ongoing population health survey is informed by Inuit knowledge, values and worldview, and incorporates the latest in health sciences research. From design through implementation, analysis and dissemination of results, the survey is fully Inuit-owned and Inuit-led.

The survey collects information that Inuit communities, organizations and decision-makers need to provide an overall picture of the health and wellbeing of Inuit. The results also provide a better understanding of Inuit health challenges, as well as the strengths and resilience that have sustained Inuit through difficult times. Data about what is going well and what areas need to be improved can inform short- and long-term changes that will ultimately improve the health and wellbeing of Inuit over time.

  1. Morgan, J., Matthew, M., Thevarge, D., Marsden, N., Laliberte, N., Thomson, S., Gillis, T., Corscadden, L., Muller, M., Nourani, S., & Cuthbertson, L. (2021). Fire Agreements: Decolonization and Indigenization of British Columbia’s Indigenous Patient-Centred Measurement Advisory Committee’s Terms of References. BC Patient Centred Measurement Steering Committee