在巴西的第三级护理环境中促进罕见病患者的综合护理:混合方法实施研究协议.
Domingos Alves1, Filipe Andrade Bernardi2,3,4, Vinicius Costa Lima2
1Department of Social Medicine, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil.
JMIR research protocols
|August 18, 2025
概括
这项研究引入了一个数字健康工具,以改善对罕见病 (RD) 患者的护理. 该工具增强了医疗保健专业人员的协调,资源分配和教育,最终改善了患者的治疗结果.
科学领域:
- 数字健康数字健康
- 公共卫生政策 公共卫生政策
- 罕见疾病管理 罕见疾病管理
背景情况:
- 由于复杂性和低患病率,罕见疾病 (RDs) 构成了医疗保健方面的重大挑战.
- 对 RDs 的全面护理需要加强服务,计划和护理水平.
- 数字健康工具对于流行病监测,患者随访和医疗保健专业人员 (HCP) 教育至关重要.
研究的目的:
- 为巴西国家罕见病综合护理政策实施加强行动.
- 开发一个计算工具,以优化研发和开发的参考服务和信息传播.
- 改善罕见病患者的诊断,协作和整体护理.
主要方法:
- 将监管流程映射出来,并应用5W2H框架.
- 整合基于可查找性,可访问性,互操作性和可重复使用性 (FAIR原则) 的数字工具.
- 开展医疗保健人员的培训计划,并开发用于患者跟踪的计算工具.
主要成果:
- 获得了伦理审批;为数据采集举行了技术会议.
- 确定了关键指导方针,绘制了管理流程;评估了知识管理成熟度.
- 一个计算本体正在开发用于语义互操作性;教育举措启动.
结论:
- 数字健康解决方案可以通过改进协调,资源配置和教育来改变研发和开发护理.
- 有效的采用提高了获得专业护理的机会,减少了效率低下,并为公共卫生政策提供了信息.
- 整合数字技术对于管理R&D至关重要,需要利益相关者的持续合作.
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