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, Selam Mequanint, Douglas Edward Barre, Meghan Fournie, Michael E Green, Anthony J Hanley, Mariam Naqshbandi Hayward, Merrick Zwarenstein, Stewart B Harris, FORGE AHEAD Program Team, Stewart Harris, Ed Barre, Onil Bhattacharyya, David Dannenbaum, Keith Dawson, Roland Dyck, Jo-Ann Episkenew, Michael Green, Anthony Hanley, Barry Lavallee, Ann Macaulay, Alex McComber, Heather McDonald, Monica Parry, Sonja Reichert, Jon Salsberg, Braden TeHiwi, Amardeep Thind, Sheldon Tobe, Ellen Toth, Audrey Walsh, Jay Wortman, Lloy Wylie, Merrick Zwarenstein, Ross Bailie, Kayla Collins, Claire de Oliveira, Michael Hindmarsh, Valeria Rac, Joanne Lewis, Renee Bowers, Shubie Chetty, Brigitte Parent, Ratsamy Pathammavong, Lillian Houle, Amber Houle, Mary Jane Malcolm, Phyllis Racette, Sonya Houle, Dawn Montour-Lazare, Joelle Emond, Jessica Jacobs, Alexandra Audi, Randy Peterson, Randy Littlechild, Bonny Graham, Tina Littlechild, Ingrid Ekomiak, Devon Guy, Chalsea Onespot, Dawn Redmond, Kelsey Big Plume-Kahnapace, Ivan Kimble McComb, Emilie Dufour, Verna Jolly, Charlene Diamond, Mary Jacob, Stephanie Hester, Jennifer Jones, Danna Hadden, April DeYaeger, Theresa O'Keefe, Cynthia Benoit, Maggie Organ, Patricia Keesickquayash, Darlene Panacheese, Elaine Ishabid, Hazel Skunk, Edna Skunk, Marie Jebb, Carla Constant, Christie Wilson, Shelley Kirkness, Allen Deleary, Rennie Nawash, Lori Sinclair, Lisa Tabobondung, Melissa Gregory, Trudy Jacobs, Heather McDonald, Bonnie Nickel, Patricia Bobb, Kristina George, Jim Esler, Meghan Fournie, Jackie McLellan, Selam Mequanint, Kristina Miller, Mariam Naqshbandi Hayward, Jordan Tompkins, Marie Tyler, Susan Webster-Bogaert, Harsh Zaran, Jordan W Tompkins, Selam Mequanint, Douglas Edward Barre, Meghan Fournie, Michael E Green, Anthony J Hanley, Mariam Naqshbandi Hayward, Merrick Zwarenstein, Stewart B Harris, FORGE AHEAD Program Team, Stewart Harris, Ed Barre, Onil Bhattacharyya, David Dannenbaum, Keith Dawson, Roland Dyck, Jo-Ann Episkenew, Michael Green, Anthony Hanley, Barry Lavallee, Ann Macaulay, Alex McComber, Heather McDonald, Monica Parry, Sonja Reichert, Jon Salsberg, Braden TeHiwi, Amardeep Thind, Sheldon Tobe, Ellen Toth, Audrey Walsh, Jay Wortman, Lloy Wylie, Merrick Zwarenstein, Ross Bailie, Kayla Collins, Claire de Oliveira, Michael Hindmarsh, Valeria Rac, Joanne Lewis, Renee Bowers, Shubie Chetty, Brigitte Parent, Ratsamy Pathammavong, Lillian Houle, Amber Houle, Mary Jane Malcolm, Phyllis Racette, Sonya Houle, Dawn Montour-Lazare, Joelle Emond, Jessica Jacobs, Alexandra Audi, Randy Peterson, Randy Littlechild, Bonny Graham, Tina Littlechild, Ingrid Ekomiak, Devon Guy, Chalsea Onespot, Dawn Redmond, Kelsey Big Plume-Kahnapace, Ivan Kimble McComb, Emilie Dufour, Verna Jolly, Charlene Diamond, Mary Jacob, Stephanie Hester, Jennifer Jones, Danna Hadden, April DeYaeger, Theresa O'Keefe, Cynthia Benoit, Maggie Organ, Patricia Keesickquayash, Darlene Panacheese, Elaine Ishabid, Hazel Skunk, Edna Skunk, Marie Jebb, Carla Constant, Christie Wilson, Shelley Kirkness, Allen Deleary, Rennie Nawash, Lori Sinclair, Lisa Tabobondung, Melissa Gregory, Trudy Jacobs, Heather McDonald, Bonnie Nickel, Patricia Bobb, Kristina George, Jim Esler, Meghan Fournie, Jackie McLellan, Selam Mequanint, Kristina Miller, Mariam Naqshbandi Hayward, Jordan Tompkins, Marie Tyler, Susan Webster-Bogaert, Harsh Zaran

Abstract

Background: There 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.

Methods: The 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.

Results: A 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.

Conclusions: The 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 registration: Current ClinicalTrial.gov protocol ID NCT02234973 . Registered: September 9, 2014.

Keywords: Chronic disease; Diabetes; Indigenous; National; Primary healthcare; Quality improvement; Survey.

Conflict of interest statement

Ethics approval and consent to participate

Ethics approval for the FORGE AHEAD Program was granted by Western University Health Sciences Research Ethics Board (#103895, approved June 17, 2013), the Health Research Ethics Board of Alberta (CHC-14-0054, approved December 1, 2014), the Cree Board of Health and Social Services of James Bay (#2014-DSP-03, approved October 2, 2014), Mi’kmaw Ethics Watch, Unama’ki College, Cape Breton University (approved January 29, 2014), and Mi’kmaq Confederacy Ethics Review Committee, Prince Edward Island (approved March 14, 2014). Health Canada ethical approval was not required because the CPS did not involve patients. Participation in the CPS was voluntary and completion of the survey indicated consent.

Consent for publication

Not applicable.

Competing interests

Authors from Western University were funded from the grant supporting this study.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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