提高数据访问流程的透明度:制定最佳实践标准,并通过竞争性资金呼吁促进全系统变革
Yemi Macaulay1,2, Ester Bellavia1,2, Rachel Brophy1
1Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.
International journal of population data science
|November 5, 2025
概括
制定数据使用的透明度标准建立了公众的信任,并简化了研究过程. 这些标准促进问责制和道德数据共享,确保社会对研究数据访问的期望得到满足.
科学领域:
- 数据科学数据科学数据科学
- 卫生研究 卫生研究 卫生研究
- 社会经济研究 社会经济研究
背景情况:
- 公众对研究数据使用的信任取决于透明度,数据安全性和明显的公共利益.
- 数据获取流程缺乏明确性可能会阻碍研究进展,并推迟关键发现.
- 维持"社会运营许可证"要求组织通过透明的实践来满足社会期望.
研究的目的:
- 在数据科学界建立和促进采用透明度标准.
- 支持对健康和社会经济研究的可靠和高效的数据利用.
- 增强公众和研究人员对数据访问协议的信心.
主要方法:
- 进行了多方利益相关者审议过程.
- 参与组织对现有的数据访问程序进行了两次审查,为审议提供了信息.
- 利益相关者包括来自医疗保健,研究,监管机构,工业,学术界和公众的代表.
主要成果:
- 在数据访问流程中发现了不一致性,公众参与度不足.
- 开发了28个跨越四个主题的"透明度标准":明确的指导,用户友好的导航,流程改进和结果报告.
- 促进了19个组织的采用,产生了可重复使用的材料和可转移的知识.
结论:
- 透明度标准增强了数据保管人的问责制和公众的信任.
- 标准简化了研究人员的数据访问,并促进了数据的伦理使用.
- 持续投资是确保持续进步和满足不断变化的期望所必需的.
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