For several years, ICES has been working closely with First Nations, Inuit, and Métis partners, and urban Indigenous health service providers to develop unique partnerships that include data governance and data sharing agreements. These partnerships have enabled Indigenous-driven analyses using ICES data.
ICES formalized its Indigenous Portfolio with dedicated staff in October of 2017, and continually supports capacity-building among all ICES staff and faculty to meaningfully work with Indigenous partners and Indigenous data. ICES continues to develop data governance agreements with First Nations, Métis and Inuit partners, and these guiding agreements and processes are respected for each project.
ICES is also committed to strengthening capacity in Indigenous communities and organizations for using data through an ICES Indigenous Health Data Training Program, as well as other collaborations such as secondments. ICES’ ongoing commitment to this work is articulated in our current strategic plan.
Work with Indigenous Data and Partners
- We will support Indigenous-driven use of ICES data.
- We will work to be a trusted partner for Indigenous organizations, scholars and communities.
- We will listen to and learn from Indigenous teachings and principles so that we can apply them to our relationships and collaborative projects.
Indigenous Data Governance Principles
The figure depicts an overall framework that is informed by collaboration with the Chiefs of Ontario on work with First Nations data.
Indigenous Data at ICES
Through our partnerships, agreements and study of the ethical frameworks outlined in the External Reference Materials section below, ICES has interpreted Indigenous data and identifiers as including:
- Registries (e.g., Indian Register System, Métis Citizenship Registry)
- Self-identifiers (e.g., survey data with identifiers that have been linked at ICES)
- Geographic identifiers (e.g., postal codes, residence codes or census subdivisions associated with First Nations communities)
- Indigenous-specific datasets (e.g., survey or health service delivery data)
These may identify directly or by proxy any of the following: (i) First Nations Peoples and/or communities (ii) Métis Peoples and/or communities (iii) Inuit and/or Inuit communities (iv) Indigenous Peoples and/or communities.
Governance of Indigenous Data at ICES
Indigenous data governance and engagement is nuanced and complex. In each research project or request for data, there are many things to consider and the landscape is evolving. ICES continues to develop data governance agreements with First Nations, Métis and Inuit partners. These key guiding agreements and supporting processes are respected for each project.
Use of the health care system by Ontario First Nations people with diabetes: a population-based study
Shah BR, Slater M, Frymire E, Jacklin K, Sutherland R, Khan S, Walker JD, Green ME. CMAJ Open. 2020; 8(2):E313-8. Epub 2020 May 5.
Diabetes-induced eye disease among First Nations people in Ontario: a longitudinal, population-based cohort study
Campbell RJ, Sutherland R, Khan S, Doliszny KM, Hooper PL, Slater M, Frymire E, Shah BR, Walker JD, Green ME. CMAJ Open. 2020; 8(2):282-8. Epub 2020 Apr 17.
Characterizing risk of type 2 diabetes in First Nations people living in First Nations communities in Ontario: a population-based analysis using cross-sectional survey data
Rosella LC, Kornas K, Green ME, Shah BR, Walker JD, Frymire E, Jones C. CMAJ Open. 2020; 8(1):E178-83. Epub 2020 Mar 16.
Hospital admission for stroke or transient ischemic attack among First Nations people with diabetes in Ontario: a population-based cohort study
Kapral MK, Shah BR, Green ME, Porter J, Griffiths R, Frymire E, Slater M, Jacklin K, Sutherland R, Walker JD. CMAJ Open. 2020; 8(1):E156-62. Epub 2020 Mar 16.
Diabetes during pregnancy and perinatal outcomes among First Nations women in Ontario, 2002/03–2014/15: a population-based cohort study
Vélez MP, Slater M, Griffiths R, Shah BR, Sutherland R, Jones C, Jacklin K, Walker JD, Green ME. CMAJ Open. 2020; 8(1):E214-25. Epub 2020 Mar 19.
Diabetes prevalence, incidence and mortality in First Nations and other people in Ontario, 1995–2014: a population-based study using linked administrative data
Walker JD, Slater M, Jones CR, Shah BR, Frymire E, Khan S, Jacklin K, Green ME. CMAJ. 2020; 192(6):128-35. Epub 2020 Feb 10.
Prevalence, incidence and outcomes of diabetes in Ontario First Nations children: a longitudinal population-based cohort study
Shulman R, Slater M, Khan S, Jones C, Walker JD, Jacklin K, Green ME, Frymire E, Shah BR. CMAJ Open. 2020; 8(1):E48-55. Epub 2020 Jan 28.
Trends in cardiovascular care and event rates among First Nations and other people with diabetes in Ontario, Canada, 1996–2015
Chu A, Han L, Roifman I, Lee DS, Green ME, Jacklin K, Walker J, Sutherland R, Khan S, Frymire E, Tu JV, Shah BR. CMAJ. 2019; 191(47):E1291-8. Epub 2019 Nov 25.
First Nations people with diabetes in Ontario: methods for a longitudinal population-based cohort study
Slater M, Green ME, Shah B, Khan S, Jones CR, Sutherland R, Jacklin K, Walker JD. CMAJ Open. 2019; 7(4):E680-8. Epub 2019 Nov 24.
Describing the process of ethical conduct of research in an Ontario-wide First Nations diabetes research project
Walker JD, Rowe R, Jones CR. CMAJ. 2018; 190:S19-20. Epub 2018 Nov 7.
Unlocking First Nations health information through data linkage
Walker JD, Pyper E, Jones CR, Khan S, Chong N, Legge D, Schull MJ, Henry D. Int J Popul Data Sci. 2018; 3(1):450. Epub 2018 May 22.
Walking the path together: Indigenous health data at ICES
Pyper E, Henry D, Yates EA, Mecredy G, Ratnasingham S, Slegers B, Walker JD. Healthc Q. 2018; 20(4):6-9. Epub 2018 Jan 1.
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