心脏病学中的学习医疗保健系统:关于学习医疗保健系统的伦理困境的定性访谈研究
Sara Laurijssen1, Rieke van der Graaf2, Ewoud Schuit2
1Department of Healthcare Saxion Applied University Deventer Netherlands.
Learning health systems
|January 22, 2024
概括
在心脏病学中实施学习健康系统 (LHS) 涉及道德挑战. 患者希望知情同意和积极参与LHS研究和护理,平衡数据共享与隐私风险.
科学领域:
- 医学伦理 医学伦理
- 医疗信息学 医疗信息学
- 心脏病学研究 心脏病学研究
背景情况:
- 心脏病学中的学习健康系统 (LHS) 提出了独特的伦理考虑,特别是关于伦理审查和知情同意过程.
- 调查利益相关者的态度对于理解和导航临床实践中的这些道德复杂性至关重要.
研究的目的:
- 在心脏病学部门内探索与实施学习健康系统 (LHS) 相关的伦理挑战的不同利益相关者的观点.
- 确定与知情同意,数据所有权和患者参与心脏病LHS相关的关键道德障碍和机会.
主要方法:
- 采用了定性研究设计,利用35个半结构面试和5个焦点小组面试.
- 参与者包括广泛的利益相关者:心脏病学家,研究护士,心血管患者,伦理学家,健康律师,流行病学家/统计学家和保险代表.
主要成果:
- 发现的伦理障碍主要集中在LHS内部的监督,知情同意和数据所有权是主要关注点.
- 患者将LHS视为参与研究和护理的平台,但表示担心被归结为数据,冒着隐私风险.
- 关于规范道德监督存在不同的观点,强调需要明确的指导方针.
结论:
- 利益相关者对心脏病LHS中的道德困境的态度各不相同,特别是关于道德监督的监管方法.
- 患者优先了解LHS活动,并希望积极贡献数据和学习目标,前提是获得知情同意.
- 这项研究强调了以患者为中心的方法在LHS实施中的重要性,以确保伦理完整性和最大化收益.
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