开发一个数据信任模型 (不仅) 睡眠研究:概念研究和定量调查
Raphael Jan Dressle1, Dieter Riemann1, Nicole Thoma1
1Department of Psychiatry and Psychotherapy, Medical Center - University of Freiburg, Faculty of Medicine, University of Freiburg, Albert-Ludwigs-Universität Freiburg, c/o Medizinische Fakultät, Klinik für Psychiatrie und Psychotherapie, Hauptstraße 5, Freiburg, 79104, Germany, 49 761 270-65570.
JMIR human factors
|December 2, 2025
概括
在SouveMed框架允许安全的健康数据的二次使用. 它通过数据信任平衡利益相关者的需求,增强对研究人员和患者的信任和可用性.
科学领域:
- 医疗信息学 医疗信息学
- 医疗数据管理 医疗数据管理
- 生物伦理学生物伦理学
背景情况:
- 医疗保健机构产生大量的数据,但其二次研究用途有限.
- 在数据共享方面,平衡不同利益相关者的需求是一个重大挑战.
- 对于二次医疗数据使用的现有解决方案往往是不充分的.
研究的目的:
- 开发数据信任模型和用户界面应用程序,以便在法律和道德上合理的医疗数据的二次使用.
- 解决对二次医疗数据利用的可行解决方案的需求.
- 建立一个基于广泛的利益相关者调查的框架.
主要方法:
- 与患者,研究人员和机构代表进行半结构化访谈和在线问卷调查.
- 员工调查以挑出需求,并进行两轮评估.
- 使用独立样本的威尔希t测试来比较评估之间的组平均值.
主要成果:
- 开发了SouveMed,这是一个数据信任框架,用于医疗数据的二次使用,以睡眠研究为例.
- SouveMed促进了安全的数据主体登陆,数字同意和数据用户界面,用于查询和数据访问.
- 数据受试者报告了高信任度 (平均4.23) 和数据用户系统的可用性得分 (4.58/5) 在评估回合后得到改善.
结论:
- "SouveMed"概念为二次医疗数据利用提供了一个全面的框架.
- 开发的过程可以适应在各种医学研究领域的应用.
- 该框架解决了医疗数据共享中的关键法律和伦理考虑.
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