Pathway for Community Dialogue on Indigenous Health Data Governance - Final Report

#Project Background

#ICHR Background

Developed from the Arctic Health Research Network, in 2005 the Institute for Circumpolar Health Research (ICHR) was developed by Northern community members, doctors, academics, and researchers. The Institute was founded to advance the health and wellness of Northern people and communities in the areas of scientific inquiry and public policy. ICHR is an independent, non-profit organization, registered under the Northwest Territories Societies Act. It is engaged in research, training, facilitation, knowledge synthesis, exchange, and dissemination.

The ICHR has been actively involved in research focused on understanding the role of health systems and health data in contributing to Indigenous health, wellness, and care. The Pathway for Community Dialogue on Indigenous Health Data Governance project commissioned by the ICHR is an effort to better understand the challenges and opportunities surrounding Indigenous health data governance and access in the Northwest Territories (NWT). This project was conducted in three phases, including setting the foundation through an environmental scan of Indigenous health data governance in Canada and facilitating conversations with key partners. This toolkit is based on an assessment of the documents reviewed and the engagement sessions.

#Why a Toolkit?

This toolkit has been developed to support Indigenous leadership and community conversations in the area of health data governance and the collection and use of Indigenous health data. This project came out of the need and desire of communities to develop and use their own health data, with recognition that there are unique considerations in the North, and a wide disparity in capacity around data collection and use across communities.

This toolkit has also been developed to support territorial governments, health authorities, and health researchers in generating shared understandings of the ethical collection, use, and management of Indigenous health data, based on values and principles rooted in Northern Indigenous cultures and traditions, and reflect community realities, goals, and priorities.

More specifically, this toolkit is intended to:

• Improve efforts in data sovereignty through supporting Northern Indigenous communities to build capacity and advance their own work in health and wellness data collection, use, and management;
• Support integration of traditional knowledge into approaches to collecting, using, and managing data;
• Support community informed, culturally relevant, evidence-based prioritization and decision making in community health planning;
• Build community capacity to monitor and respond to changes in health and wellness;
• Strengthen rationale for investments in community health and wellness initiatives; and
• Support transparency and trust in data collection and use, and in reporting to communities.

#How to Use this Toolkit

This toolkit can be used in several ways, depending on objectives, purpose, and existing capacity.

• For those beginning their data governance journey, the toolkit can be read section by section, with each section providing background information and links to valuable resources. Each section builds on the next, and when viewed as a whole, provides a strong foundation for getting you started!
• Those who are interested in specific aspects of data governance, including community dialogue on data, can skip to specific sections to inform their work; and,
• Those who already have a strong foundation in community health data governance, and are in need of specific tools or resources, can use the resource links listed in each section, or in the compiled resources at the end of the report.