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International research collaboration publishes guidelines in The Lancet on the use of Indigenous health data


An international team of researchers from Canada, Australia and New Zealand, led by the Institute for Clinical Evaluative Sciences (ICES) have published governance guidelines in The Lancet for the use of Indigenous health data. The researchers hope the guidelines will encourage other researchers to work with Indigenous groups to build ethical and collaborative partnerships that will support communities to advocate for better health and healthcare.

“Organizations that hold Indigenous data must build a relationship of trust with Indigenous organizations. That means listening and learning from Indigenous teachings and principles so that we can strive to apply them to our relationships and collaborative projects. That will mean that this data can be used to promote well-being, health and effective policy,” says Jennifer Walker, scientist at ICES, lead of the Indigenous portfolio at ICES and a Canada Research Chair in Indigenous Health at Laurentian University.

The Lancet article entitled “Indigenous health data and the path to healing,” outlines, as an exemplar, the governance processes that presently guide the use of routinely collected health data with Indigenous identifiers at ICES. The governance of Indigenous data at ICES rests with Indigenous nations and organizations. These processes establish that:

  • Priorities for the use of Indigenous data are driven by Indigenous organizations.
  • Researchers have to request access to Indigenous data and these requests are approved by Indigenous data governance committees.
  • Researchers collaborate with Indigenous organizations throughout the projects, from defining the research questions to interpreting and communicating the results.
  • ICES provides opportunities for researchers and staff to learn about Indigenous perspectives and contexts.
  • ICES provides opportunities for Indigenous partners to strengthen their capacity to use data at ICES.

“First Nations communities need accurate data to measure determinants of health, access to health services, and the burden of important diseases and their complications. But how and by whom this data is collected and counted needs to begin with the First Nations communities,” says Carmen Jones, research manager with the Chiefs of Ontario.

ICES is committed to building and strengthening relationships with Indigenous groups.  As part of ICES’ three-year strategic plan, one research priority is Indigenous health.

“ICES is dedicated to our shared commitment with our Indigenous partners including the Chiefs of Ontario, Metis Nation of Ontario and the Tungasuvvingat Inuit, to identify and address gaps in data, which is crucial for evidence-based policy development,” says Dr. Michael Schull, president and CEO at ICES.

“Indigenous health data and the path to healing” was published today in The Lancet.

Author block: Jennifer Walker, Ray Lovett, Tahu Kukutai, Carmen Jones and David Henry.

The Institute for Clinical Evaluative Sciences (ICES) is an independent, non-profit organization that uses population-based health information to produce knowledge on a broad range of healthcare issues. Our unbiased evidence provides measures of health system performance, a clearer understanding of the shifting healthcare needs of Ontarians, and a stimulus for discussion of practical solutions to optimize scarce resources. ICES knowledge is highly regarded in Canada and abroad, and is widely used by government, hospitals, planners, and practitioners to make decisions about care delivery and to develop policy. For the latest ICES news, follow us on Twitter: @ICESOntario


Deborah Creatura
Media Advisor, ICES
[email protected]
(o) 416-480-4780 or (c) 647-406-5996

Read the Journal Article