Back to the basics: Identifying and addressing underlying challenges in achieving high quality and relevant health statistics for Indigenous populations in Canada

Abstract

Canada is known internationally for excellence in both the quality and public policy relevance of its health and social statistics. There is a double standard however with respect to the relevance and quality of statistics for Indigenous populations in Canada. Indigenous specific health and social statistics gathering is informed by unique ethical, rights-based, policy and practice imperatives regarding the need for Indigenous participation and leadership in Indigenous data processes throughout the spectrum of indicator development, data collection, management, analysis and use. We demonstrate how current Indigenous data quality challenges including misclassification errors and non-response bias systematically contribute to a significant underestimate of inequities in health determinants, health status, and health care access between Indigenous and non-Indigenous people in Canada. The major quality challenge underlying these errors and biases is the lack of Indigenous specific identifiers that are consistent and relevant in major health and social data sources. The recent removal of an Indigenous identity question from the Canadian census has resulted in further deterioration of an already suboptimal system. A revision of core health data sources to include relevant, consistent, and inclusive Indigenous self-identification is urgently required. These changes need to be carried out in partnership with Indigenous peoples and their representative and governing organizations.

Indigenous Health Service Evaluation: Principles and Guidelines from a Provincial “Three Ribbon” Expert Panel

“…Indigenous health and social services and their evaluations are systematically under-resourced (Lavoie, Forget, & O'Neil, 2007). Inadequate resourcing hinders the development of service and pro gram infrastructure and limits capacity for sustainability, evaluation quality, and collection of sufficient data to support wise health services and programming in Indigenous communities (Smylie, Anderson, Ratima, Crengle, & Anderson, 2006;Smylie & Firestone, 2015). The explicit and/or implicit evaluation goals of funding bodies may also be in tension and outweigh those of Indigenous communities, making evaluations theoretically faulty.…”

First Nations data sovereignty in Canada

“…Furthermore, these secondary data analyses do not typically describe any type of First Nations community engagement with respect to study design, interpretation, and dissemination. This becomes a "missed opportunity to support the shift towards research processes and outcomes that are relevant and useful to the communities whose data are being used" [46].…”

“…First Nations data sovereignty is an urgent priority and area of significant interest among Nations, leaders, policy makers, and community members as "global trends towards increasing the use of linked administrative datasets and "big data" risk further distancing already marginalized individuals and communities from active leadership and participation in the decision making regarding the use of their data" [46].…”

Reflecting back to move forward with suicide behavior estimation for First Nations in Canada

“…Overall, these studies demonstrate the value of producing Indigenous statistics for suicide. That being said, the reporting of Indigenous statistics, including for suicide, has been inconsistent in Canada [13,14] and internationally [15], with minimal and infrequent measurement of mental health and wellness [16]. This paper addresses this reporting disparity.…”