在使用例行收集的健康数据的研究中应用的土著数据治理方法:范围审查
Teyl Engstrom1, Elton H Lobo2, Kristie Watego3
1Queensland Digital Health Centre, Centre for Health Services Research, The University of Queensland, Herston, QLD, Australia. t.engstrom@uq.edu.au.
NPJ digital medicine
|March 16, 2024
概括
原住民数据治理对于健康研究越来越重要. 这次审查发现,虽然许多研究涉及土著人民,但数据主权和同意的细节较少,强调需要更好地应用土著数据治理原则.
科学领域:
- 公共卫生 公共卫生
- 医疗信息学 医疗信息学
- 土著研究土著研究.
背景情况:
- 全球越来越多地承认土著人民控制社区数据的权利.
- 制定土著数据治理标准对于伦理健康研究至关重要.
- 越来越多的健康数据收集需要在土著社区研究中应用这些标准.
研究的目的:
- 系统地审查利用原住民经常收集的健康数据的研究.
- 了解土著数据治理方法,优势和挑战.
- 评估土著数据治理原则在健康数据研究中的整合.
主要方法:
- 电子数据库的系统文献审查.
- 对2013年至2022年间发表的研究进行搜索.
- 分析了85篇精选的文章,重点关注数据治理方面的问题.
主要成果:
- 65%的研究涉及土著人民,71%的研究作者是土著人.
- 大多数研究 (93%) 报告道德认可,但只有21%详细说明了土著指导原则.
- 35%的人报告了数据主权,28%的人讨论了同意,这表明他们对土著数据治理的坚持不同.
结论:
- 在健康数据研究中,越来越多地关注土著数据治理.
- 利用现有的健康数据需要遵守土著数据治理原则.
- 更好地了解土著健康结果取决于应用这些原则.
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