学到的教训 建立了息护理研究合作社的定性数据存储库
Salimah H Meghani1, Kim Mooney-Doyle2, Amber Barnato3
1Department of Biobehavioral Health Sciences NewCourtland Center for Transitions and Health (S.H.M), Leonard Davis Institute of Health Economics; University of Pennsylvania, Philadelphia, PA.
Journal of pain and symptom management
|June 2, 2024
概括
息治疗研究合作组织 (PCRC) 建立了美国第一个严重疾病和息治疗质量数据库. 这一举措支持对健康研究中开放科学和数据共享的日益增长的期望.
科学领域:
- 卫生研究 卫生研究 卫生研究
- 开放科学是一个开放的科学.
- 质量数据管理 质量数据管理
背景情况:
- 数据共享是健康研究中日益增长的期望,由开放科学原则驱动.
- "2023年国家卫生数据管理与共享政策"要求所有研究的数据共享,包括定性研究.
- 息治疗研究合作小组 (PCRC) 认识到需要一个专门的定性数据库.
研究的目的:
- 建立美国第一个严重疾病和息护理的定性数据库.
- 描述PCRC-QDR的开发过程,宣传和初始数据存储.
- 在息治疗研究中推进质量数据共享的最佳实践.
主要方法:
- 与质量数据存储库 (QDR) 合作,创建了PCRC-QDR.
- 共同设计了数据库,根据研究背景为数据存储和共享量身定制的指南.
- 制定了统一的文档期望,并实施了对敏感数据的访问控制.
- 利用现有的PCRC社区招募和指导早期数据存储者.
主要成果:
- 成功建立了PCRC-QDR,这是美国第一个同类存储库.
- 登上了第一个十个项目,在存储库中共享定性数据.
- 了解了共同设计指南和管理敏感的定性数据的实用性.
结论:
- PCRC-QDR成功地解决了在息治疗研究中的定性数据共享的需求.
- 建立的流程和指导方针为其他研究社区提供了典范.
- 这项工作有助于在开放科学和定性数据管理方面更广泛地推进最佳实践.
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