分享数据很重要:探索老年消费者对新兴健康老龄化数据平台的态度,使用电子健康记录进行研究
Kim Naude1, David A Snowdon2, Emily Parker2
1Monash University, Melbourne, Victoria, Australia kim.naude@monash.edu.
BMJ health & care informatics
|January 3, 2025
概括
由于信任问题,老年澳大利亚人不愿意分享电子健康记录 (EHR) 来进行研究. 透明的沟通对于建立对EHR数据共享健康研究的信心至关重要.
科学领域:
- 医疗信息学 医疗信息学
- 老年学是指老年学的学科.
- 定性研究是指质量研究.
背景情况:
- 电子健康记录 (EHR) 最近在澳大利亚医院实施.
- 利用医院的EHR进行研究是一个新兴的概念.
- 需要探索老年消费者对分享健康数据进行研究的态度.
研究的目的:
- 探索老年医疗保健消费者对分享健康数据的态度.
- 了解基于EHR的新兴研究数据平台的观点.
- 确定影响老年人数据共享意愿的因素.
主要方法:
- 定性研究设计. 定性研究设计.
- 与消费者代表 (n=16,年龄在62-83岁之间) 进行了两次研讨会.
- 在焦点小组讨论后,使用反射主题分析分析数据.
主要成果:
- 总体主题:对电子健康记录数据用于研究的信任.
- 确定的主题:数据共享的感知好处,数据收集的不确定性和数据共享的恐惧.
- 参与者的信任水平直接反映在这些主题中.
结论:
- 基本的信任问题影响了EHR数据用于研究的使用.
- 医疗保健和社会因素都会影响消费者的态度.
- 透明的沟通流程对于负责任的EHR数据共享在研究中至关重要.
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