Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation.
IF 2.5 3区 医学Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTHHealth and Human RightsPub Date : 2022-06-01
Robin P Love, Billie-Jo Hardy, Courtney Heffernan, Amber Heyd, Melissa Cardinal-Grant, Lori Sparling, Bonnie Healy, Janet Smylie, Richard Long
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引用次数: 0
Abstract
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.
期刊介绍:
Health and Human Rights began publication in 1994 under the editorship of Jonathan Mann, who was succeeded in 1997 by Sofia Gruskin. Paul Farmer, co-founder of Partners In Health, assumed the editorship in 2007. After more than a decade as a leading forum of debate on global health and rights concerns, Health and Human Rights made a significant new transition to an online, open access publication with Volume 10, Issue Number 1, in the summer of 2008. While continuing the journal’s print-only tradition of critical scholarship, Health and Human Rights, now available as both print and online text, provides an inclusive forum for action-oriented dialogue among human rights practitioners.