关于一般实践数据的二次使用的社区观点:混合方法研究的结果
Annette J Braunack-Mayer1,2, Carolyn Adams3, Alberto Nettel-Aguirre4
1Australian Centre for Health Engagement, Evidence and Values (ACHEEV), School of Health and Society, Faculty of the Arts, Social Sciences and Humanities, University of Wollongong, Wollongong, New South Wales, Australia.
概括
公众支持共享通用实践数据以提供直接的患者护理,但对共享数据用于研究或规划表示担忧. 解决隐私和透明度是建立对更广泛数据使用的信任的关键.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 公共卫生政策 公共卫生政策
- 数据治理数据治理
背景情况:
- 一般实践数据越来越多地用于质量保证,服务规划和研究.
- 数据链接将一般实践记录与医院和其他医疗服务数据相结合.
- 了解社区观点对于开发二次数据使用的社会许可证至关重要.
研究的目的:
- 探索社区对共享二次目的的一般实践数据的观点.
- 确定公众接受数据共享所需的关注点和条件.
- 为制定社会许可证提供信息,支持使用一般实践数据.
主要方法:
- 采用混合方法方法,将重点小组和跨部门调查结合起来.
- 焦点小组于2021年11月至12月进行.
- 在2022年3月至4月期间,对2604名参与者进行了横截面调查.
主要成果:
- 强有力的公众支持共享一般实践数据直接患者护理 (超过90%).
- 对于研究 (36%) 和医疗服务规划 (45%) 等次要用途的支持率较低.
- 担忧包括隐私侵犯,歧视,数据滥用,以及对透明度和同意的渴望.
结论:
- 关于二次共享一般实践数据的公众担忧可能超过其他环境的担忧.
- 在一般实践中建立信任和合法性对于更广泛的数据共享至关重要.
- 需要仔细关注患者和公众的关注,以维持数据使用的社会许可.
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