释放英国健康数据的承诺:考虑慈善GP数据信托的情况
Caroline A B Redhead1, Catherine Bowden1, John Ainsworth2
1Centre for Social Ethics and Policy, Law Department, The University of Manchester, Oxford Rd, Manchester, M13 9PL, United Kingdom.
Medical law review
|December 10, 2024
概括
在英格兰,患者数据共享面临挑战,导致退出系统暂停. 一项试点研究探讨了选择退出的原因,并提出了一个解决方案.
科学领域:
- 医疗信息学 医疗信息学
- 数据治理数据治理
- 患者的隐私 患者的隐私
背景情况:
- 英国国家卫生服务总诊所 (GP) 患者数据是有价值的研究资源.
- 最近对英格兰的伪名医生数据处理的更改面临着重大的公众选择退出.
- 患者的担忧导致数据共享系统暂停,并进行了参与演习.
研究的目的:
- 调查患者选择退出GP数据共享的原因.
- 探索"数据信任"的概念,作为管理患者数据的解决方案.
- 为全科医生数据信任机构提出治理模型,以解决患者的担忧.
主要方法:
- 进行了一项名为"通用实践数据信托"的试点研究.
- 采访了参与者,以了解他们对数据共享的担忧.
- 讨论了"数据信任"模型及其作为治理结构的潜力.
主要成果:
- 确定了关键的患者问题,推动了从GP数据共享中选择退出.
- 发现"数据信任"模型可能会解决这些问题.
- 提出了一个慈善合并组织作为GP数据信托的合适治理模式.
结论:
- 由慈善注册组织管理的"数据信任"可以增强患者对GP数据共享的信任.
- 这种模型提供了一个更有吸引力的方法来管理GP数据用于研究和服务规划.
- 解决患者关切对于成功实施数据共享倡议至关重要.
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