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绘制和评估国家数据流:透明度,隐私,指导基础设施转型
Joe Zhang1, Jess Morley2, Jack Gallifant3
1Institute of Global Health Innovation, Imperial College London, London, UK; Department of Critical Care, Guy's and St Thomas' NHS Foundation Trust, London, UK.
The Lancet. Digital health
|September 29, 2023
概括
绘制英国国家卫生服务 (NHS) 电子患者数据流的地图揭示了透明度问题和对公众信任的风险. 建议旨在改善数据共享基础设施,并展示NHS数据资产.
科学领域:
- 医疗信息学 医疗信息学
- 数据治理数据治理
- 公共卫生 公共卫生
背景情况:
- 大数据在全球范围内因其在人口层面的健康洞察力方面的潜力而得到认可.
- 英国国家卫生服务 (NHS) 的电子健康记录提供了庞大的数据集,但面临着数据共享的挑战.
- 现有政策强调了在健康数据共享中透明度,隐私和分析能力方面的问题.
研究的目的:
- 绘制英格兰全境所有电子患者数据流的地图.
- 识别与当前NHS数据共享实践相关的挑战和风险.
- 为转变健康数据基础设施和促进透明度提供建议.
主要方法:
- 利用公共信息来源来追踪数据流.
- 分析了从NHS提供商到460多个学术,商业和公共消费者的数据路径.
- 评估数据交互与安全数据访问的最佳实践.
主要成果:
- 确定了限制透明度和风险公众信任的多阶段数据流链.
- 发现大多数数据交互不符合建议的安全数据访问实践.
- 观察到的基础设施问题导致数据资产聚合,限制多样性和价值.
结论:
- 国家卫生保健局的数据支持全球研究生态系统,但需要基础设施转型.
- 解决透明度,隐私和数据多样性对于最大限度地提高健康数据的价值至关重要.
- 一个新的网站 (DataInsights.uk) 已经开发,以提高透明度和展示NHS数据资产.
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