Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation

• Main Authors: Robin P. Love, Billie-Jo Hardy, Courtney Heffernan, Amber Heyd, Melissa Cardinal-Grant, Lori Sparling, Bonnie Healy, Janet Smylie, Richard Long
• Format: Article in Journal/Newspaper
• Language: English
• Published: Harvard FXB Center for Health and Human Rights 2022
• Subjects: Public aspects of medicine; RA1-1270; Social history and conditions. Social problems. Social reform; HN1-995; Canada; First Nations
• Online Access: https://doaj.org/article/eec714a1a1c142568eb19286817e11ce

Indigenous rights to self-determination and data sovereignty support Indigenous-led data governance, which, when adequately resourced, can act as a catalyst for Indigenous-led strategic planning and decision-making in public health research and programming. Respecting Indigenous data sovereignty and governance requires time, resources, education, and planning. Here we share our experiences and lessons learned when developing and implementing data governance agreements with select First Nations and Métis partnering communities in Canada in the context of tuberculosis prevention and care. We define the process undertaken to create a decision space, supported by data governance agreements, where researchers, program (government) stakeholders, and Indigenous community partners are equally and equitably informed to co-develop public health interventions. The decision space has implications for tackling all manner of public health concerns and can inform policy for nation-to-nation public health relationships to advance public health goals.