德国医疗数据整合中心数据管理实践的现状:混合方法研究
Kerstin Gierend1, Sherry Freiesleben2, Dennis Kadioglu3,4
1Department of Biomedical Informatics at the Center for Preventive Medicine and Digital Health, Medical Faculty Mannheim, Heidelberg University, Mannheim, Germany.
Journal of medical Internet research
|November 8, 2023
概括
这项研究揭示了健康数据管理中的可追溯性问题,阻碍了研究. 一个新的成熟度框架旨在提高数据质量和对二次使用的信任.
科学领域:
- 医疗信息学 医疗信息学
- 健康数据管理 管理健康数据
- 研究数据库研究数据库.
背景情况:
- 常规医疗保健数据整合中心 (DIC) 在传输数据用于二次用途方面面临挑战.
- 数据来源对于数据的有效性,可靠性和质量至关重要,但目前的做法缺乏清晰度.
- 可持续的数据管理实践是必不可少的,但它们的地位尚不清楚.
研究的目的:
- 在MIRACUM联盟中,检查数据生命周期中的当前数据管理实践.
- 提出数据管理成熟度框架,并提出可靠传播和重复使用健康数据的建议.
- 为了解决缺乏清晰度和加强研究数据管理策略.
主要方法:
- 一项混合方法研究,涉及10个DIC的利益相关者进行半结构面试.
- 使用自主设计的量身定制问卷来收集定性和定量数据.
- 遵守混合方法研究 (GRAMMS) 良好的报告的方法严格性检查清单.
主要成果:
- 在MIRACUM DICs的数据管理实践中发现了重大可追溯性问题.
- 可追溯性问题源于缺乏上下文信息,不清楚的责任和不完整的数据/环境细节.
- 提出了数据管理成熟度框架,以解决发现的缺陷并加强战略.
结论:
- 数据管理成熟度框架促进准确,来源丰富的数据用于次要用途.
- 这项工作是总体数据管理战略的催化剂,强调数据完整性和来源.
- 旨在促进更公平,维护和高质量的健康研究数据.
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