公民科学中的罕见疾病 - 开发个人健康应用程序的初步经验
Jannik Schaaf1, Andreas Khouri2, Thomas Zerr2
1Goethe University Frankfurt, University Hospital, Institute of Medical Informatics, Frankfurt, Germany.
Studies in health technology and informatics
|January 25, 2024
概括
塞利 (SelEe) 公民科学项目开发了一个罕见疾病应用程序,让公民参与研究. 参与者对应用程序设计,沟通和他们对项目的影响表示高度满意.
科学领域:
- 数字健康数字健康
- 罕见疾病研究 罕见疾病研究
- 公民科学 公民科学
背景情况:
- 罕见疾病影响着大量人口,需要创新的研究方法.
- 患者管理记录可以赋予个人权力,并促进为罕见疾病研究收集数据.
- 公民科学倡议为罕见疾病研究和应用程序开发提供了宝贵的支持.
研究的目的:
- 开发一种智能手机应用程序,用于罕见疾病研究中的患者管理记录.
- 调查参与SelEe项目的核心研究小组的公民的经验和满意度.
- 评估公民对应用程序设计,数据输入和项目传播的意见.
主要方法:
- 建立一个由专业研究人员和公民组成的核心研究小组.
- 为患者管理记录开发智能手机应用程序.
- 在线调查问卷分发给核心研究小组成员,以收集有关影响,沟通,改进,学习和满意度的反.
主要成果:
- 9名公民参与者填写了反问卷.
- 公民对Selee应用程序的设计表示高度满意.
- 参与者报告了有关参与和项目沟通机会的积极经验.
结论:
- 通过应用程序开发,SeleEe项目成功地将公民纳入罕见病研究.
- 公民参与核心研究团队的参与导致了高满意度.
- 该项目展示了公民科学在推进罕见病研究和数字健康解决方案方面的潜力.
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