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...
Main Authors: | , , , , , , , , |
---|---|
Format: | Text |
Language: | English |
Published: |
Harvard University Press
2022
|
Subjects: | |
Online Access: | http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212824/ |
id |
ftpubmed:oai:pubmedcentral.nih.gov:9212824 |
---|---|
record_format |
openpolar |
spelling |
ftpubmed:oai:pubmedcentral.nih.gov:9212824 2023-05-15T16:16:19+02:00 Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation Love, Robin P. Hardy, Billie-Jo Heffernan, Courtney Heyd, Amber Cardinal-Grant, Melissa Sparling, Lori Healy, Bonnie Smylie, Janet Long, Richard 2022-06 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212824/ en eng Harvard University Press http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212824/ Copyright © 2022 Love, Hardy, Heffernan, Heyd, Cardinal-Grant, Sparling, Healy, Smylie, and Long. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) ), which permits unrestricted non-commercial use, distribution, and reproduction. CC-BY-NC Health Hum Rights Research-Article Text 2022 ftpubmed 2022-06-26T00:43:51Z 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. Text First Nations PubMed Central (PMC) Canada |
institution |
Open Polar |
collection |
PubMed Central (PMC) |
op_collection_id |
ftpubmed |
language |
English |
topic |
Research-Article |
spellingShingle |
Research-Article Love, Robin P. Hardy, Billie-Jo Heffernan, Courtney Heyd, Amber Cardinal-Grant, Melissa Sparling, Lori Healy, Bonnie Smylie, Janet Long, Richard Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation |
topic_facet |
Research-Article |
description |
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. |
format |
Text |
author |
Love, Robin P. Hardy, Billie-Jo Heffernan, Courtney Heyd, Amber Cardinal-Grant, Melissa Sparling, Lori Healy, Bonnie Smylie, Janet Long, Richard |
author_facet |
Love, Robin P. Hardy, Billie-Jo Heffernan, Courtney Heyd, Amber Cardinal-Grant, Melissa Sparling, Lori Healy, Bonnie Smylie, Janet Long, Richard |
author_sort |
Love, Robin P. |
title |
Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation |
title_short |
Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation |
title_full |
Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation |
title_fullStr |
Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation |
title_full_unstemmed |
Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation |
title_sort |
developing data governance agreements with indigenous communities in canada: toward equitable tuberculosis programming, research, and reconciliation |
publisher |
Harvard University Press |
publishDate |
2022 |
url |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212824/ |
geographic |
Canada |
geographic_facet |
Canada |
genre |
First Nations |
genre_facet |
First Nations |
op_source |
Health Hum Rights |
op_relation |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212824/ |
op_rights |
Copyright © 2022 Love, Hardy, Heffernan, Heyd, Cardinal-Grant, Sparling, Healy, Smylie, and Long. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) ), which permits unrestricted non-commercial use, distribution, and reproduction. |
op_rightsnorm |
CC-BY-NC |
_version_ |
1766002174038376448 |