SEEDS
Sharing Essential Education & Data for Sovereignty
The main purpose of this repository is to act as a “one-stop shop” for those who are interested in Indigenous Data Sovereignty and how it relates to the many areas of public health. This repository contains a curated list of resources under the following topics: Health policy, Environmental data, Health equity and social determinants of health, Health education and communication, Epidemiology, Data governance, Surveillance and outbreak response, Disease and interventions. The repository is maintained by the D4I TDR Educational Resources Working Group. If there is a resource that is not included but you think should be, please reach out to us at D4itdr@gmail.com
Database Search
497 results found
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Indigenous Peoples’ Rights in Data: a contribution toward Indigenous Research Sovereignty
Hudson M, Carroll SR, Anderson J, Blackwater D, Cordova-Marks FM, Cummins J, David-Chavez D, Fernandez A, Garba I, Hiraldo D, Jäger MB, Jennings LL, Martinez A, Sterling R, Walker JD, Rowe RK. Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty. Front Res Metr Anal. 2023 May 4;8:1173805. doi: 10.3389/frma.2023.1173805. PMID: 37215248; PMCID: PMC10192690.
Publication Dates:
2023
Content Types:
Peer reviewed publication
Indigenous Peoples and research: self-determination in research governance
Garba I, Sterling R, Plevel R, Carson W, Cordova-Marks FM, Cummins J, Curley C, David-Chavez D, Fernandez A, Hiraldo D, Hiratsuka V, Hudson M, Jäger MB, Jennings LL, Martinez A, Yracheta J, Garrison NA, Carroll SR. Indigenous Peoples and research: self-determination in research governance. Front Res Metr Anal. 2023 Nov 15;8:1272318. doi: 10.3389/frma.2023.1272318. PMID: 38033627; PMCID: PMC10685893.
Publication Dates:
2023
Content Types:
Peer reviewed publication
Applying the ‘CARE Principles for Indigenous Data Governance’ to ecology and biodiversity research
Jennings L, Anderson T, Martinez A, Sterling R, Chavez DD, Garba I, Hudson M, Garrison NA, Carroll SR. Applying the 'CARE Principles for Indigenous Data Governance' to ecology and biodiversity research. Nat Ecol Evol. 2023 Oct;7(10):1547-1551. doi: 10.1038/s41559-023-02161-2. PMID: 37558804.
Publication Dates:
2023
Content Types:
Peer reviewed publication
Best practices for genetic and genomic data archiving
Leigh, D.M., Vandergast, A.G., Hunter, M.E. et al. Best practices for genetic and genomic data archiving. Nat Ecol Evol 8, 1224–1232 (2024). https://doi.org/10.1038/s41559-024-02423-7
Publication Dates:
2024
Content Types:
Peer reviewed publication
Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review
Griffiths KE, Blain J, Vajdic CM, Jorm L. Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review. Int J Environ Res Public Health. 2021 Sep 30;18(19):10318. doi: 10.3390/ijerph181910318. PMID: 34639617; PMCID: PMC8508308.
Publication Dates:
2021
Content Types:
Peer reviewed publication
Indigenous sovereignty, data sourcing, and knowledge sharing for health
Smith-Morris C, Juaréz-López BM, Tapia A, Shahim B. Indigenous sovereignty, data sourcing, and knowledge sharing for health. Glob Public Health. 2022 Nov;17(11):2665-2675. doi: 10.1080/17441692.2022.2058049. Epub 2022 Mar 31. PMID: 35358022.
Publication Dates:
2022
Content Types:
Peer reviewed publication
Indigenous data and health: critical approaches to ‘race’/ethnicity and Indigenous data governance
Cormack D, Reid P, Kukutai T. Indigenous data and health: critical approaches to 'race'/ethnicity and Indigenous data governance. Public Health. 2019 Jul;172:116-118. doi: 10.1016/j.puhe.2019.03.026. Epub 2019 May 23. PMID: 31130221.
Publication Dates:
2019
Content Types:
Peer reviewed publication
Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics
Haring RC, Blanchard JW, Korchmaros JD, Lund JR, Haozous EA, Raphaelito J, Hudson M, Tsosie KS. Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics. Front Public Health. 2021 Nov 11;9:742467. doi: 10.3389/fpubh.2021.742467. PMID: 34858924; PMCID: PMC8632014.
Publication Dates:
2021
Content Types:
Peer reviewed publication
The SEEDS of Indigenous population health data linkage
Rowe RK, Carroll SR, Healy C, Rodriguez-Lonebear D, Walker JD. The SEEDS of Indigenous population health data linkage. Int J Popul Data Sci. 2021 Jun 22;6(1):1417. doi: 10.23889/ijpds.v6i1.1417. PMID: 34212119; PMCID: PMC8218891.
Publication Dates:
2021
Content Types:
Peer reviewed publication
Indigenous Data Governance: Strategies from United States Native Nations
Carroll SR, Rodriguez-Lonebear D, Martinez A. Indigenous Data Governance: Strategies from United States Native Nations. Data Sci J. 2019;18:31. doi: 10.5334/dsj-2019-031. PMID: 34764990; PMCID: PMC8580324.
Publication Dates:
2019
Content Types:
Peer reviewed publication
Indigenous Values and Health Systems Stewardship in Circumpolar Countries
Chatwood S, Paulette F, Baker GR, Eriksen AMA, Hansen KL, Eriksen H, Hiratsuka V, Lavoie J, Lou W, Mauro I, Orbinski J, Pambrun N, Retallack H, Brown A. Indigenous Values and Health Systems Stewardship in Circumpolar Countries. Int J Environ Res Public Health. 2017 Nov 27;14(12):1462. doi: 10.3390/ijerph14121462. PMID: 29186925; PMCID: PMC5750881.
Publication Dates:
2017
Content Types:
Peer reviewed publication
Indigenous health program evaluation design and methods in Australia: a systematic review of the evidence
Lokuge K, Thurber K, Calabria B, Davis M, McMahon K, Sartor L, Lovett R, Guthrie J, Banks E. Indigenous health program evaluation design and methods in Australia: a systematic review of the evidence. Aust N Z J Public Health. 2017 Oct;41(5):480-482. doi: 10.1111/1753-6405.12704. Epub 2017 Jul 27. PMID: 28749539.
Publication Dates:
2017
Content Types:
Peer reviewed publication
First Nations Data Governance and Public Health Surveillance in Canada
NCCID • CCNMI
PHO Learning Exchange: Community Data Governance: From Frameworks to Practice
Public Health Ontario
RDM Workshop series – Indigenous Heath Data and Research at ICES
Journalology OHRI
Tribal PH Data Modernization Learning Community on Tribal Public Health Authority
National Indian Health Board
Drinking water quality in Indigenous communities in Canada and health outcomes: a scoping review
Bradford LE, Okpalauwaekwe U, Waldner CL, Bharadwaj LA. Drinking water quality in Indigenous communities in Canada and health outcomes: a scoping review. Int J Circumpolar Health. 2016 Jul 29;75:32336. doi: 10.3402/ijch.v75.32336. PMID: 27478143; PMCID: PMC4967713.
Publication Dates:
2016
Content Types:
Peer reviewed publication
Developing Data Governance Agreements with Indigenous Communities in Canada
Love RP, Hardy BJ, Heffernan C, Heyd A, Cardinal-Grant M, Sparling L, Healy B, Smylie J, Long R. Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation. Health Hum Rights. 2022 Jun;24(1):21-33. PMID: 35747272; PMCID: PMC9212824.
Publication Dates:
2022
Content Types:
Peer reviewed publication
Reclaiming Indigenous Health in the US: Moving beyond the Social Determinants of Health
Carroll SR, Suina M, Jäger MB, Black J, Cornell S, Gonzales AA, Jorgensen M, Palmanteer-Holder NL, De La Rosa JS, Teufel-Shone NI. Reclaiming Indigenous Health in the US: Moving beyond the Social Determinants of Health. Int J Environ Res Public Health. 2022 Jun 18;19(12):7495. doi: 10.3390/ijerph19127495. PMID: 35742745; PMCID: PMC9223447.
Publication Dates:
2022
Content Types:
Peer reviewed publication
Responsible Governance of Tribal Public Health Data: Data Sharing Ethics and Common Challenges in the US Public Health System
Calac AJ, Gasca LR, Swain WH. Responsible Governance of Tribal Public Health Data: Data Sharing Ethics and Common Challenges in the US Public Health System. J Med Internet Res. 2025 Jun 19;27:e77249. doi: 10.2196/77249. PMID: 40537098.
Publication Dates:
2025
Content Types:
Peer reviewed publication
Ethics guidelines use and Indigenous governance and participation in Aboriginal and Torres Strait Islander health research: a national survey
Burchill LJ, Kotevski A, Duke DL, Ward JE, Prictor M, Lamb KE, Kennedy M. Ethics guidelines use and Indigenous governance and participation in Aboriginal and Torres Strait Islander health research: a national survey. Med J Aust. 2023 Feb 6;218(2):89-93. doi: 10.5694/mja2.51757. Epub 2022 Oct 17. PMID: 36253955; PMCID: PMC10952733.
Publication Dates:
2023
Content Types:
Peer reviewed publication
COVID-19 Pandemic and Indigenous Representation in Public Health Data
Huyser KR, Horse AJY, Kuhlemeier AA, Huyser MR. COVID-19 Pandemic and Indigenous Representation in Public Health Data. Am J Public Health. 2021 Oct;111(S3):S208-S214. doi: 10.2105/AJPH.2021.306415. PMID: 34709868; PMCID: PMC8561074.
Publication Dates:
2021
Content Types:
Peer reviewed publication
A framework for operationalising Aboriginal and Torres Strait Islander data sovereignty in Australia: Results of a systematic literature review of published studies
Trudgett S, Griffiths K, Farnbach S, Shakeshaft A. A framework for operationalising Aboriginal and Torres Strait Islander data sovereignty in Australia: Results of a systematic literature review of published studies. EClinicalMedicine. 2022 Feb 17;45:101302. doi: 10.1016/j.eclinm.2022.101302. PMID: 35243269; PMCID: PMC8861650.
Publication Dates:
2022
Content Types:
Peer reviewed publication
Just data representation for Native Hawaiians and Pacific Islanders: A critical review of systemic Indigenous erasure in census and recommendations for psychologists
Sasa SM, Yellow Horse AJ. Just data representation for Native Hawaiians and Pacific Islanders: A critical review of systemic Indigenous erasure in census and recommendations for psychologists. Am J Community Psychol. 2022 Jun;69(3-4):343-354. doi: 10.1002/ajcp.12569. Epub 2021 Dec 8. PMID: 34878178.
Publication Dates:
2022
Content Types:
Peer reviewed publication
Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) StudySM as an illustrative case
White EJ, Demuth MJ, Wiglesworth A, Coser AD, Garrett BA, Kominsky TK, Jernigan V, Thompson WK, Paulus M, Aupperle R. Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) StudySM as an illustrative case. Neuropsychopharmacology. 2023 Jan;48(2):263-269. doi: 10.1038/s41386-022-01498-9. Epub 2022 Nov 16. PMID: 36385331; PMCID: PMC9751109.
Publication Dates:
2022
Content Types:
Peer reviewed publication
Australian Aboriginal and Torres Strait Islander Health Information: Progress, Pitfalls, and Prospects
Ring I, Griffiths K. Australian Aboriginal and Torres Strait Islander Health Information: Progress, Pitfalls, and Prospects. Int J Environ Res Public Health. 2021 Sep 29;18(19):10274. doi: 10.3390/ijerph181910274. PMID: 34639572; PMCID: PMC8508232.
Publication Dates:
2021
Content Types:
Peer reviewed publication
Reaffirming Indigenous data sovereignty in New Mexico as a result of COVID-19
Carson WO, Cordova-Marks FM, Jennings LL, Carroll SR. Reaffirming Indigenous data sovereignty in New Mexico as a result of COVID-19. Front Public Health. 2025 Jun 3;13:1302655. doi: 10.3389/fpubh.2025.1302655. PMID: 40529714; PMCID: PMC12170597.
Publication Dates:
2025
Content Types:
Peer reviewed publication
Caring for Indigenous Data to Evaluate the Benefits of Indigenous Environmental Programs
Robinson CJ, Kong T, Coates R, Watson I, Stokes C, Pert P, McConnell A, Chen C. Caring for Indigenous Data to Evaluate the Benefits of Indigenous Environmental Programs. Environ Manage. 2021 Aug;68(2):160-169. doi: 10.1007/s00267-021-01485-8. Epub 2021 May 27. PMID: 34046755.
Publication Dates:
2021
Content Types:
Peer reviewed publication
Healing through Data: Sovereignty and Governance for Indigenous Data Futures
Global Health and Social Medicine
VISIONING THE FUTURE: FIRST NATIONS, INUIT, & MÉTIS POPULATION AND PUBLIC HEALTH
National Collaborating Centre for Indigenous Health
Competing interests: digital health and indigenous data sovereignty
Cordes, A., Bak, M., Lyndon, M. et al. Competing interests: digital health and indigenous data sovereignty. npj Digit. Med. 7, 178 (2024). https://doi.org/10.1038/s41746-024-01171-z
Publication Dates:
2024
Content Types:
Peer reviewed publication
A Healthy and Just World: What would it take to increase public health in Indigenous communities?
Columbia Public Health
Achieving strength through numbers: First Nations, Inuit, and Métis health information
National Collaborating Centre for Indigenous Health
Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities
NHMRC
Operationalizing the CARE and FAIR Principles for Indigenous data futures
Carroll, S.R., Herczog, E., Hudson, M. et al. Operationalizing the CARE and FAIR Principles for Indigenous data futures. Sci Data 8, 108 (2021). https://doi.org/10.1038/s41597-021-00892-0
Publication Dates:
2020
Content Types:
Peer reviewed publication
Unpacking Indigenous Data, Indigenous Data Sovereignty and Indigenous Data Governance
Australian Data Science Network
INDIGENOUS DATA SOVEREIGNTY
ORS & ORPI
The CARE Principles of Indigenous Data Governance
Ontologies In Agriculture
INDIGENOUS DATA GOVERNANCE 01-12-23
Genome BC
Reforming Tribal Health Data Infrastructure Panel
National Indian Health Board
Session 1- Indigenous Data Sovereignty and DRIPA: Asserting Data and Intellectual Property Ownership
First Nations Public Service Secretariat
Understanding the First Nations Principles of OCAP™: Our Road Map to Information Governance
FNIGC
Indigenous Data Sovereignty and Policy
Maggie Walter, Tahu Kukutai, Stephanie Russo Carroll, Desi Rodriguez-Lonebear
Indigenous Data Sovereignty: Toward an agenda
Tahu Kukutai, John Taylor
Visioning the Future: FNIM Population and Public Health Series – Governance and Data
NCCIH CCNSA
The Backdrop for Development of First Nations Peoples’ Data Governance and Health Indicators
First Nations Health Authority
Indigenous Statistics (Version 2)
Chris Andersen, Maggie Walter, Tahu Kukutai, Chelsea Gabel
First Nations Data Governance and Public Health Surveillance in Canada: Insights, Lessons, and Future Direction
Erin Corsten, Gonzague Guéranger, Maria Santos
Publication Dates:
2024
Content Types:
Presentation
Data Sovereignty in Community-Based Environmental Monitoring: Toward Equitable Environmental Data Governance
Victoria Reyes-García, Adrien Tofighi-Niaki, Beau J Austin, Petra Benyei, Finn Danielsen, Álvaro Fernández-Llamazares, Aditi Sharma, Ramin Soleymani-Fard, Maria Tengö, Data Sovereignty in Community-Based Environmental Monitoring: Toward Equitable Environmental Data Governance, BioScience, Volume 72, Issue 8, August 2022, Pages 714–717, https://doi.org/10.1093/biosci/biac048
Publication Dates:
2022
Content Types:
Peer reviewed publication
The CARE Principles for Indigenous Data Governance
Stephanie Russo Carroll, Ibrahim Garba, Oscar L. Figueroa-Rodríguez, Jarita Holbrook, Raymond Lovett, Simeon Materechera, Mark Parsons, Kay Raseroka, Desi Rodriguez-Lonebear, Robyn Rowe, Rodrigo Sara, Jennifer D. Walker, Jane Anderson, and Maui Hudson
Publication Dates:
2023
Content Types:
Peer reviewed publication
Good Data
Daly, Angela., Devitt, S. Kate., Mann, Monique. Good Data. Germany: Institute of Network Cultures, 2019.
Indigenous data protection in wastewater surveillance: balancing public health monitoring with privacy rights
Perreault ML, Goodridge LD. Indigenous data protection in wastewater surveillance: balancing public health monitoring with privacy rights. Genomic Psychiatry. 2025;1(3):22-27. doi: 10.61373/gp025p.0008
Publication Dates:
2025
Content Types:
Peer reviewed publication
Indigenous research data governance in Sápmi
Siri, S. R. A., & Axelsson, P. (2024). Indigenous research data governance in Sápmi. Acta Borealia, 41(2), 65–71. https://doi.org/10.1080/08003831.2024.2410110
Publication Dates:
2024
Content Types:
Peer reviewed publication
Indigenous Data Governance Brief
Stephanie Russo Carroll, Desi SmallRodriguez, Michele Suina, Riley Taitingfong, Caleigh Curley, Joseph Yracheta, Herminia Frias, Lydia Jennings, Christina Ore, Dominique David Chavez, Cheryl Ellenwood, Andrew Martinez, Ibrahim Garba, Randall Akee. (2024). “Indigenous Data Governance Brief.” United States Indigenous Data Sovereignty Network
Indigenous Environmental Data Justice: Confronting Colonial Data and Activating Indigenous Sovereignty
Yanchapaxi, M. F., & Murphy, M. (2025). Indigenous Environmental Data Justice: Confronting Colonial Data and Activating Indigenous Sovereignty. Science, Technology, & Human Values, 0(0). https://doi.org/10.1177/01622439251343837
Publication Dates:
2025
Content Types:
Peer reviewed publication
Decolonising Data
Urban Indian Health Institute
Centering Data Sovereignty, Tribal Values, and Practices for Equity in American Indian and Alaska Native Public Health Systems
"Rhodes KL, Echo-Hawk A, Lewis JP, L. Cresci V, E. Satter D, A. Dillard D. Centering Data Sovereignty, Tribal Values, and Practices for Equity in American Indian and Alaska Native Public Health Systems. Public Health Reports®. 2023;139(1_suppl):10S-15S. doi:10.1177/00333549231199477
"
Publication Dates:
2023
Content Types:
Peer reviewed publication
Ethics in Aboriginal and Torres Strait Islander health research
Lowitja Institute
Keeping Research on Track? Aboriginal and Torres Strait Islander Accounts of Ethical Conduct in Health and Medical Research
Lowitja Institute
Taking Control of Our Data
Lowitja Institute
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