The SEEDS of Indigenous Population Health Data Linkage
Introduction Globally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. Du...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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Swansea University
2021-06-01
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| Series: | International Journal of Population Data Science |
| Subjects: | |
| Online Access: | https://ijpds.org/article/view/1417 |
| _version_ | 1827615503089139712 |
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| author | Robyn Rowe Stephanie Russo Carroll Chyloe Healy Desi Rodriguez-Lonebear Jennifer D Walker |
| author_facet | Robyn Rowe Stephanie Russo Carroll Chyloe Healy Desi Rodriguez-Lonebear Jennifer D Walker |
| author_sort | Robyn Rowe |
| collection | DOAJ |
| description | Introduction
Globally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage.
Objectives
Centering IPH data linkage and research priorities at the conference led to budding discussions from diverse Indigenous populations to share and build on current IPH data linkage themes. This paper provides a braided summary of those discussions which resulted in the SEEDS principles for use when linking IPH data.
Methods
During the Conference, two sessions and a keynote were Indigenous-led and hosted by international collaborators that focused on regional perspectives on IPH data linkage. A retrospective document analysis of notes, discussions, and artistic contributions gathered from the conference resulted in a summary of shared common approaches to the linkage of IPH data.
Results
The SEEDS Principles emerge as collective report that outlines a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples' right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous nations and settler states.
Conclusion
Each of the elements of SEEDS need to be enacted together to create a positive data linkage environment. When implemented together, the SEEDS Principles can lead to more meaningful research and improved Indigenous data governance. The mindful implementation of SEEDS could lead to better measurements of health progress through linkages that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous nations. |
| first_indexed | 2024-03-09T09:12:48Z |
| format | Article |
| id | doaj.art-470a9bb72b384007a10a15f282c94d67 |
| institution | Directory Open Access Journal |
| issn | 2399-4908 |
| language | English |
| last_indexed | 2024-03-09T09:12:48Z |
| publishDate | 2021-06-01 |
| publisher | Swansea University |
| record_format | Article |
| series | International Journal of Population Data Science |
| spelling | doaj.art-470a9bb72b384007a10a15f282c94d672023-12-02T08:15:39ZengSwansea UniversityInternational Journal of Population Data Science2399-49082021-06-016110.23889/ijpds.v6i1.1417The SEEDS of Indigenous Population Health Data LinkageRobyn Rowe0Stephanie Russo Carroll1Chyloe Healy2Desi Rodriguez-Lonebear3Jennifer D Walker4School of Rural and Northern Health, Laurentian University, Sudbury, ON., Canada, P3E2C6Mel and Enid Zuckerman College of Public Health and the Native Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, Arizona, USABlackfoot Confederacy Tribal Council, First Nations Health & Social Secretariat of ManitobaDepartment of Sociology and American Indian Studies, University of California Los AngelesSchool of Rural and Northern Health, Laurentian University, Sudbury, ON., Canada, P3E2C6Introduction Globally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage. Objectives Centering IPH data linkage and research priorities at the conference led to budding discussions from diverse Indigenous populations to share and build on current IPH data linkage themes. This paper provides a braided summary of those discussions which resulted in the SEEDS principles for use when linking IPH data. Methods During the Conference, two sessions and a keynote were Indigenous-led and hosted by international collaborators that focused on regional perspectives on IPH data linkage. A retrospective document analysis of notes, discussions, and artistic contributions gathered from the conference resulted in a summary of shared common approaches to the linkage of IPH data. Results The SEEDS Principles emerge as collective report that outlines a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples' right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous nations and settler states. Conclusion Each of the elements of SEEDS need to be enacted together to create a positive data linkage environment. When implemented together, the SEEDS Principles can lead to more meaningful research and improved Indigenous data governance. The mindful implementation of SEEDS could lead to better measurements of health progress through linkages that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous nations.https://ijpds.org/article/view/1417IndigenousData governancedata linkagedata principlesdata sovereigntypopulation health |
| spellingShingle | Robyn Rowe Stephanie Russo Carroll Chyloe Healy Desi Rodriguez-Lonebear Jennifer D Walker The SEEDS of Indigenous Population Health Data Linkage International Journal of Population Data Science Indigenous Data governance data linkage data principles data sovereignty population health |
| title | The SEEDS of Indigenous Population Health Data Linkage |
| title_full | The SEEDS of Indigenous Population Health Data Linkage |
| title_fullStr | The SEEDS of Indigenous Population Health Data Linkage |
| title_full_unstemmed | The SEEDS of Indigenous Population Health Data Linkage |
| title_short | The SEEDS of Indigenous Population Health Data Linkage |
| title_sort | seeds of indigenous population health data linkage |
| topic | Indigenous Data governance data linkage data principles data sovereignty population health |
| url | https://ijpds.org/article/view/1417 |
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