SynthesisInternational journal of environmental research and public health2021
Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review.
Synthesis in International journal of environmental research and public health, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
15 citing papers in PubMed.
- Where to Next for Māori Health Research Review Processes? Insights Into the Indigenous Context: An Integrative Systematic Literature Review.Journal of the Royal Society of New Zealand · 2026Review
- Article
- Increasing Innu participation in public health: a qualitative study of data governance among Innu in Labrador, Canada.BMJ public health · 2026Article
- Article
- Indigenous people's perspectives on sharing health data for service delivery purposes: an inquiry using Indigenous methodologies.The Lancet regional health. Western Pacific · 2025Article
- Designing for data sharing: Considerations for advancing health equity in data management and dissemination.Translational behavioral medicine · 2024Article
- Ethical publishing in 'Indigenous' contexts.Tobacco control · 2024Article
- Reducing Commercial Tobacco Sales to Youth On and Around California Tribal Reservations With a Reward and Reminder Retail Intervention.Nicotine & tobacco research : official journal of the Society for Research on Nicotine and Tobacco · 2024Article
- The value of standards for health datasets in artificial intelligence-based applications.Nature medicine · 2023Article
- Lessons learned and future directions: A scoping review of American Indian and Alaska Native participants in the National Drug Abuse Treatment Clinical Trials Network.Journal of substance use and addiction treatment · 2023Article
- Recruitmentology and the politics of consent in clinical research.Lancet (London, England) · 2023Article
- Data Sovereignty in Community-Based Environmental Monitoring: Toward Equitable Environmental Data Governance.Bioscience · 2022Article
- Strategies for Inclusivity of American Indian and Alaska Native Peoples in Behavior Therapy Research: Within-Group Diversity, Data, and Ethical Recommendations.The Behavior therapist · 2022Article
- A framework for operationalising Aboriginal and Torres Strait Islander data sovereignty in Australia: Results of a systematic literature review of published studies.EClinicalMedicine · 2022Review
- The Health and Wellbeing of Indigenous and Tribal Peoples around the Globe: Ensuring and Promoting Best Practice in Research.International journal of environmental research and public health · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous peoples requires governance that defines who makes decisions on behalf of whom and how these data can and should be used. An international a priori PROSPERO (#CRD42020170033) systematic review was undertaken to examine the health research literature to (1) identify, describe, and synthesize definitions and principles; (2) identify and describe data governance frameworks; and (3) identify, describe, and synthesize processes, policies and practices used in Indigenous Data Governance (ID-GOV). Sixty-eight articles were included in the review that found five components that require consideration in the governance of health research data pertaining to Indigenous people. This included (1) Indigenous governance; (2) institutional ethics; (3) socio-political dynamics; (4) data management and data stewardship; and (5) overarching influences. This review provides the first systematic international review of ID-GOV that could potentially be used in a range of governance strategies moving forward in health research.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.