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

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.

Two Row Wampum, Human Rights, and the Elimination of Tuberculosis from High-Incidence Indigenous Communities.

The Two Row Wampum belt is a symbolic record of the first agreement between Europeans and American Indians on Turtle Island (North America). The agreement outlined a commitment to friendship and peace between people living perpetually in parallel, with each party recognizing the other as an equal partner. Subsequent treaty relationships between the Indigenous peoples of the Canadian prairies and settler society, along with the colonially imposed structures they spawned, are widely regarded as having broken the Covenant Chain, the foundation of which is Two Row Wampum. For example, the universal right to health, especially public health, as protected by provincial and territorial legislation in Canada, is under threat in Indigenous communities with a high incidence of tuberculosis. The rights of Indigenous peoples have been asserted, and reasserted, in the United Nations Declaration on the Rights of Indigenous Peoples, the Truth and Reconciliation Commission of Canada, the International Patients' Charter for Tuberculosis Care, and Jordan's Principle. Herein we describe the implementation of a strategic plan that reinforces human rights and dignity in the spirit of Two Row Wampum in contemporary tuberculosis elimination efforts.