患者生成的健康数据元素:为偏好敏感条件开发数据模型
Anna Vahteristo1, Milla Rosenlund1, Niina Reinikainen1
1Department of Health and Social Management, University of Eastern Finland, Finland.
Studies in health technology and informatics
|August 8, 2025
概括
患有或多发性硬化症 (pwE/MS) 的人希望通过数字方式共享更多患者生成的健康数据 (PGHD),以便共享决策 (SDM). 然而,目前的数字共享选择和医疗保健专业人员 (HCP) 的参与是有限的.
科学领域:
- 数字健康数字健康
- 患者参与 患者参与
- 医疗信息学 医疗信息学
背景情况:
- 患者生成的健康数据 (PGHD) 对共享决策 (SDM) 至关重要.
- SDM对于偏好敏感的疾病,如和多发性硬化症 (MS) 特别重要.
- 目前的PGHD通常是口头或书面的,数字潜力越来越大.
研究的目的:
- 了解或多发性硬化症 (pwE/MS) 患者共享和想要的PGHD类型.
- 为了探索PGHD在SDM中的作用,为pwE/MS.
- 确定将PGHD纳入临床实践的障碍和促进因素.
主要方法:
- 定性研究研究了pwE/MS.中的PGHD元素.
- 分析目前与医疗保健专业人员 (HCP) 共享和希望与医疗保健专业人员共享的PGHD.
主要成果:
- PwE/MS认为许多PGHD类型对决策至关重要.
- PwE/MS报告称,他们的健康数据的数字传输能力有限.
- 医疗保健专业人员 (HCP) 在SDM中对PGHD的认可和参与不足.
结论:
- 数字健康服务可以改善PGHD整合到护理中.
- 为了在SDM中有效利用PGHD,需要加强HCP参与和数字基础设施.
- 赋予患者管理健康的权力需要更好的PGHD共享机制.
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