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隐私时代的数据健康研究:患者想要哪些信息?
Miriam Beusink1,2, Folkert Koetsveld1,3, Sonja van Scheijen1
1Department of Molecular Pathology, The Netherlands Cancer Institute - Antoni van Leeuwenhoek hospital, Amsterdam, The Netherlands.
概括
患者希望清楚地了解癌症数据对研究的二次使用情况. 有些人更喜欢一般的小册子,而另一些人更喜欢更多的细节,平衡信息需求与研究资源分配.
科学领域:
- 医学伦理 医学伦理
- 医疗信息学 医疗信息学
- 癌症研究 癌症研究
背景情况:
- 广泛的同意通常用于科学研究中患者数据的二次使用.
- 可以使用患者数据的具体研究在同意时通常是未知的.
- 了解患者对信息提供的偏好对于道德数据共享至关重要.
研究的目的:
- 调查患者对癌症患者数据的二次使用适当信息水平的感知.
- 确定最合适的方法,为患者提供这些信息.
- 探索患者信息需求与研究资源配置之间的平衡.
主要方法:
- 使用了71名癌症患者的问卷.
- 对24名癌症患者进行了采访.
- 评估患者对信息内容和传递方法的偏好.
主要成果:
- 一部分患者通过潜在的进一步使用通知或一般的小册子感觉得到了信息.
- 其他患者希望获得额外的,更详细的信息.
- 在考虑资源影响时,受访者优先考虑为研究提供资金,而不是提供广泛的信息.
结论:
- 患者对二次数据使用信息的偏好各不相同.
- 信息提供可能需要一个分层的方法.
- 患者认识到研究资源配置的重要性,影响了他们的信息期望.
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