National Survey of Indigenous primary healthcare capacity and delivery models in Canada: the TransFORmation of IndiGEnous PrimAry HEAlthcare delivery (FORGE AHEAD) community profile survey

Jordan W Tompkins,Anthony J Hanley,Mariam Naqshbandi Hayward,Michael E Green,Selam Mequanint,Stewart B Harris,Merrick Zwarenstein,Douglas Edward Barre,Meghan Fournie

doi:10.1186/s12913-018-3578-8

Abstract

BackgroundThere is a significant deficiency of national health information for Indigenous peoples in Canada. This manuscript describes the Community Profile Survey (CPS), a community-based, national-level survey designed to identify and describe existing healthcare delivery, funding models, and diabetes specific infrastructure and programs in Indigenous communities.MethodsThe CPS was developed collaboratively through FORGE AHEAD and the First Nations and Inuit Health Branch of Health Canada. Regional and federal engagement and partnerships were built with Indigenous organizations to establish regionally-tailored distribution of the 8-page CPS to 440 First Nations communities. Results were collected (one survey per community) and reported in strata by region, with descriptive analyses performed on all variables. Results were shared with participating communities and regional/federal partners through tailored reports.ResultsA total of 84 communities completed the survey (19% response rate). The majority of communities had a health centre/office to provide service to their patients with diabetes, with limited on-reserve hospitals for ambulatory or case-sensitive conditions. Few healthcare specialists were located on-site, with patients frequently travelling off-site (> 40 km) for diabetes-related complications. The majority of healthcare professionals on-site were Health Directors, Community Health Nurses, and Home Care Nurses. Many communities had a diabetes registry but few reported a diabetes surveillance system. Regional variation in healthcare services, diabetes programs, and funding models were noted, with most communities engaging in some type of innovative strategy to improve care for patients with diabetes.ConclusionsThe CPS is the first community-based, national-level survey of its kind in Canada. Although the response rate was low, the CPS was distributed and successfully administered across a broad range of First Nations communities, and future considerations would benefit from a governance structure and leadership that strengthens community engagement, and a longitudinal research approach to increase the representativeness of the data. This type of information is important for communities and regions to inform decision making (maintain successes, and identify areas for improvement), strengthen health service delivery and infrastructure, increase accessibility to healthcare personnel, and allocate funding and/or resources to build capacity and foster a proactive chronic disease prevention and management approach for Indigenous communities across Canada.Trial registrationCurrent ClinicalTrial.gov protocol ID NCT02234973. Registered: September 9, 2014.

Highlights

There is a significant deficiency of national health information for Indigenous peoples in Canada
The response rate was low, the Community Profile Survey (CPS) was distributed and successfully administered across a broad range of First Nations communities, and future considerations would benefit from a governance structure and leadership that strengthens community engagement, and a longitudinal research approach to increase the representativeness of the data
This type of information is important for communities and regions to inform decision making, strengthen health service delivery and infrastructure, increase accessibility to healthcare personnel, and allocate funding and/or resources to build capacity and foster a proactive chronic disease prevention and management approach for Indigenous communities across Canada

Summary

Introduction

There is a significant deficiency of national health information for Indigenous peoples in Canada. Strategies must be designed to address the data challenge noted in the Truth and Reconciliations Calls to Action [21, 24], and reiterated by Smylie [25], highlighting the lack or inconsistency of Indigenous health information (datasets, surveillance systems or health surveys) This type of information is crucial to understanding the priorities and needs of a population, and informing health services, programs and best practices to direct health policy and funding [17, 26].

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Conclusion