关于为服务提供目的共享健康数据的土著人的观点:使用土著方法的调查
Kristie Watego1,2, Morgan Brodhurst-Hill1, Cherilda Murray2
1The Institute for Urban Indigenous Health, Australia.
The Lancet regional health. Western Pacific
|December 16, 2025
概括
原住民数据主权在医疗保健中至关重要. 这项研究强调了土著数据治理和托管管理在土著卫生服务和分娩设施之间数据共享的重要性.
科学领域:
- 原住民的数据主权.
- 土著数据治理土著数据治理
- 医疗数据共享 医疗数据共享
背景情况:
- 医疗保健正在经历数字化转型,增加了对土著数据主权 (IDSov) 的需求.
- 土著数据治理 (IDGov) 赋予土著人民控制其健康数据的权力.
- 研究探讨了IDGov通过监管管理在土著和托雷斯海峡岛民卫生组织和政府分娩设施之间数据共享的颁布.
研究的目的:
- 了解土著服务用户和卫生工作者在数据共享方面的观点.
- 调查土著数据治理 (IDGov) 的当地立法.
- 检查数据共享安排中的托管管家关系.
主要方法:
- 由社区控制的组织领导的研究,使用土著方法.
- 使用""来分享知识和适应的"思想仪式"进行分析.
- 通过与土著和/或托雷斯海峡岛民员工和围产期服务用户的线收集数据.由土著研究人员收集的数据.
主要成果:
- 确定了四个关键领域:数据共享中的权力和控制,安全问题 (法律,文化,心理社会风险),做好我的工作的能力 (有限的数据访问的影响) 和不应该分享一切 (偏好基于同意的共享).
- 数据共享影响权力动态和社区控制.
- 参与者强调了与耻辱和系统性种族主义相关的风险.
结论:
- 在数据共享中维护土著观点是道德上的必要要求.
- 围产环境中的监护管理对于维护主权,安全和公平结果至关重要.
- 原住民社区更喜欢基于同意的选择性数据共享.
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