对二次使用的健康数据共享进行科学度审查:洞察力,边界和前进道路
Michelle A Krahe1, Rebekah Eden2, Jason D Pole2
1James Cook University, Australia.
概括
公共信任和社区参与对于伦理健康数据共享研究至关重要. 建立社会许可是关键的,因为公众的态度和同意仍然是未经探索的领域,需要进一步关注.
科学领域:
- 医疗信息学 医疗信息学
- 数据科学数据科学数据科学
- 公共卫生 公共卫生
背景情况:
- 进步的数字技术产生了大量的健康数据用于研究.
- 关于重复使用个人健康信息的担忧仍然存在.
- 了解公众的态度对于道德,大规模数据的使用至关重要.
研究的目的:
- 探索从2020年起用于二次使用的健康数据共享的关键研究主题.
- 确定主要主题,新兴的边界和未来的方向.
- 为伦理数据利用提供信息实践和政策.
主要方法:
- 从主要数据库 (Web of Science,PubMed,Scopus) 中对95篇出版物的科学测量分析.
- 使用VOSviewer进行引用,共同引用和关键字同时出现的分析.
- 确定了主题集群和研究趋势.
主要成果:
- 研究已经向多学科,以技术为中心的方法发展.
- 主要主题包括采用数字工具,集成数据系统和道德共享解决方案.
- 同意在理论上得到了发展,但公众对伦理/社会文化问题的态度未得到充分探索.
结论:
- 伦理治理,透明度和社区参与是健康数据共享的核心.
- 建立公众信任和社会许可是成功的基础.
- 解决同意,数据链接和公众认知方面的挑战对于最大限度地提高卫生系统效益至关重要.
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