罕见疾病:数字健康时代的伦理挑战
Liesbeth Siderius1,2, Sahan Damsiri Perera3, Lina Jankauskaite4,5
1Youth Health Care, Almere, Netherlands.
Frontiers in digital health
|July 24, 2025
概括
通过数字健康技术整合健康和福祉数据对于罕见疾病患者至关重要. 患者的体验必须是开发这些技术以改善结果的核心.
科学领域:
- 公共卫生 公共卫生
- 数字健康数字健康
- 罕见疾病 罕见疾病
背景情况:
- 改善罕见疾病的健康和福祉需要整体整合护理.
- 数字医疗技术为提供者和患者之间协调数据共享提供了潜力.
- 当前的数字健康方法往往低估了患有罕见疾病的个人的生活经验.
研究的目的:
- 审查罕见疾病,公共卫生战略,数字健康机会和道德考虑.
- 突出将患者观点纳入数字健康解决方案的必要性.
- 通过使用人工与人工智能驱动的方法,研究罕见疾病数据收集的挑战.
主要方法:
- 关于罕见病和数字健康的文献叙事综述.
- 在罕见疾病的背景下分析公共卫生战略.
- 探索数字健康实施中的伦理考虑.
主要成果:
- 数字健康质量取决于反映现实情况的全面数据点.
- 在数字健康平台中,代表个人和团体生活经验存在差距.
- 先进的人工智能系统为数据分析提供了新的可能性,与手动选择相比.
结论:
- 迫切需要将罕见疾病患者的经验纳入所有新技术.
- 患者报告的结果和生活经验对于有效的数字健康至关重要.
- 伦理框架必须指导罕见疾病数字健康的开发和部署.
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