利益相关者对个人健康数据共享的看法:范围审查
Prima Alam1,2, Ana Bolio1, Leesa Lin1,2
1The Vaccine Confidence Project, Department of Infectious Disease Epidemiology, London School of Hygiene & Tropical Medicine, London, United Kingdom.
PLOS digital health
|November 20, 2024
概括
了解患者和公众对共享个人健康数据的态度对于数字健康进步至关重要. 大多数研究都显示出积极的看法,但障碍和促进因素因人口统计和数据使用而异.
科学领域:
- 数字健康数字健康
- 健康数据的共享健康数据的共享
- 生物伦理学生物伦理学
背景情况:
- 数字健康技术增加了对二次健康数据使用的需求.
- 利益相关者对个人健康数据共享的看法对于道德实践至关重要.
- 了解障碍物和促进因素是改善个性化治疗和研究的关键.
研究的目的:
- 检查全球利益相关者对个人健康数据共享的看法和态度.
- 识别影响健康数据共享行为的障碍和促进者.
- 确定研究缺口,并告知数字医疗保健中的伦理实践.
主要方法:
- 对同行评审经验研究 (2015-2023) 的范围审查.
- 在Embase,MEDLINE和Web of Science数据库中进行了搜索.
- 根据PRISMA-ScR指南,对39篇包含的文章进行了叙事综合.
主要成果:
- 对健康数据共享的多个利益相关者的观点被捕获.
- 对数据共享的积极态度普遍被报道,但有所不同.
- 障碍物和促进因素因社会人口统计,数据类型,同意和信任而有所不同.
结论:
- 健康数据共享被看作是积极的,但上下文很重要.
- 研究在地理上集中在高收入国家,缺乏多样化的视角.
- 需要进一步的研究来应对全球健康挑战和数字健康的伦理考虑.
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