Evidence map›Paper›PMID 38491156›Full record

ArticleNPJ digital medicine2024

Indigenous data governance approaches applied in research using routinely collected health data: a scoping review.

Teyl Engstrom, Elton H Lobo, Kristie Watego, Carmel Nelson, Jinxiang Wang, Howard Wong, Sungkyung Linda Kim, Soo In Oh, Michael Lawley, Alain-Dominique Gorse and 2 more

Abstract readScoping Review
In one paragraph

Article in NPJ digital medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
  5. Measuring Wellness Through Indigenous Partnerships: A Scoping Review.International journal of environmental research and public health · 2024
    Article
  6. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Teyl EngstromQueensland Digital Health Centre, Centre for Health Services Research, The University of Queensland, Herston, QLD, Australia. t.engstrom@uq.edu.au.ORCID http://orcid.org/0000-0002-1778-5006
Elton H LoboQueensland Digital Health Centre, Centre for Health Services Research, The University of Queensland, Herston, QLD, Australia. elton.lobo@uq.edu.au.ORCID http://orcid.org/0000-0003-0096-6318
Kristie WategoInstitute for Urban Indigenous Health, Windsor, QLD, Australia.
Carmel NelsonInstitute for Urban Indigenous Health, Windsor, QLD, Australia.
Jinxiang WangPoche Centre for Indigenous Health, The University of Queensland, Herston, QLD, Australia.
Howard WongQueensland Digital Health Centre, Centre for Health Services Research, The University of Queensland, Herston, QLD, Australia.ORCID http://orcid.org/0000-0002-8437-9008
Sungkyung Linda KimQueensland Digital Health Centre, Centre for Health Services Research, The University of Queensland, Herston, QLD, Australia.ORCID http://orcid.org/0009-0004-0995-7914
Soo In OhQueensland Digital Health Centre, Centre for Health Services Research, The University of Queensland, Herston, QLD, Australia.
Michael LawleyCSIRO, Herston, QLD, Australia.ORCID http://orcid.org/0000-0001-9508-4769
Alain-Dominique GorseQueensland Cyber Infrastructure Foundation, St Lucia, QLD, Australia.ORCID http://orcid.org/0000-0003-1230-4194
James Ward *Poche Centre for Indigenous Health, The University of Queensland, Herston, QLD, Australia.
Clair Sullivan *Queensland Digital Health Centre, Centre for Health Services Research, The University of Queensland, Herston, QLD, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Globally, there is a growing acknowledgment of Indigenous Peoples' rights to control data related to their communities. This is seen in the development of Indigenous Data Governance standards. As health data collection increases, it's crucial to apply these standards in research involving Indigenous communities. Our study, therefore, aims to systematically review research using routinely collected health data of Indigenous Peoples, understanding the Indigenous Data Governance approaches and the associated advantages and challenges. We searched electronic databases for studies from 2013 to 2022, resulting in 85 selected articles. Of these, 65 (77%) involved Indigenous Peoples in the research, and 60 (71%) were authored by Indigenous individuals or organisations. While most studies (93%) provided ethical approval details, only 18 (21%) described Indigenous guiding principles, 35 (41%) reported on data sovereignty, and 28 (33%) addressed consent. This highlights the increasing focus on Indigenous Data Governance in utilising health data. Leveraging existing data sources in line with Indigenous data governance principles is vital for better understanding Indigenous health outcomes.

Identifiers

PMID38491156
PMCPMC10943072

What OpenQuestion holds

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Registered trials

None linked

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.