神经内分泌瘤的个人健康记录软件:以患者为中心的设计方法
Juan Pablo Hourcade1, Michael O'Rorke2,3, Elizabeth Chrischilles2,3
1Department of Computer Science, University of Iowa, 14 MacLean Hall, Iowa City, IA, 52242, United States, 1 3193532543.
这项研究为神经内分泌瘤 (NET) 患者开发了以患者为中心的个人健康记录 (PHR),改善了自我管理和研究数据收集. 该PHR增强了患者的参与和与医疗保健提供者的沟通.
科学领域:
- 数字健康数字健康
- 患者参与 患者参与
- 罕见疾病 罕见疾病
背景情况:
- 个人健康记录 (PHR) 软件可以提高患者的参与度和为罕见疾病研究收集数据.
- 神经内分泌瘤 (NETs) 在症状管理,治疗跟踪和患者-提供者沟通方面存在独特的挑战.
研究的目的:
- 设计,开发和评估以患者为中心的PHR,用于NET患者.
- 支持在纵向研究框架内进行自我管理和研究数据收集.
主要方法:
- 通过焦点小组和调查收集的用户需求.
- 使用认知步行通道的代原型改进.
- 功能性PHR系统的可用性测试与患者和临床专家反.
主要成果:
- 该PHR使NET患者能够获取信息,跟踪症状,监控治疗,并共享数据.
- 患者报告高满意度,重视趋势可视化为自我管理和沟通.
- 可用性测试证实了系统的满意度和功能.
结论:
- 让患者参与设计可以确保医疗技术满足罕见疾病的现实需求.
- 这种以患者为中心的PHR模型支持临床护理和纵向研究.
- 该方法为开发其他罕见疾病的PHR提供了一个蓝图.
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