奥地利的健康数据民主化:患者的观点
Rada Hussein1, Andreas Stainer-Hochgatterer1, Josef Niebauer1,2
1Ludwig Boltzmann Institute for Digital Health and Prevention, Salzburg, Austria.
Studies in health technology and informatics
|June 30, 2023
概括
患有慢性疾病的患者愿意分享健康数据用于研究和临床使用. 这需要透明,受保护和可互操作的健康数据共享环境,以确保信任和隐私.
科学领域:
- 医疗信息学 医疗信息学
- 患者参与 患者参与
- 数据治理数据治理
背景情况:
- 健康数据的民主化对于推动医学研究和临床实践至关重要.
- 确保透明度,保护和互操作性对于一个可信的数据共享环境至关重要.
- 了解患者的观点对于成功的健康数据倡议至关重要.
研究的目的:
- 探索患者和利益相关者对奥地利健康数据民主化的意见.
- 调查有关慢性病患者健康数据所有权和共享的观点.
- 确定促进健康数据共享的关键要求.
主要方法:
- 与患有慢性疾病的患者一起进行了共同创作研讨会.
- 相关的利益相关者被纳入了共同创作过程.
- 收集了有关健康数据民主化,所有权和共享的意见的定性数据.
主要成果:
- 参与者表示非常愿意分享他们的健康数据.
- 分享的意愿取决于强有力的透明度和数据保护措施.
- 关键问题围绕数据安全和控制.
结论:
- 当建立信任时,患者愿意分享健康数据的程度很高.
- 实施强有力的数据保护和透明度对于健康数据的民主化至关重要.
- 共创方法有效地捕捉了患者对数据共享的看法.
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