缺乏服务的学校社区的共同数据元素收集:挑战和建议
Diya M Uthappa1, Tara K Mann2, Jennifer L Goldman3
1Duke University School of Medicine, Doctor of Medicine Program.
Pediatrics
|July 2, 2023
概括
在研究设计的早期,让服务不足的社区参与进来,可以改善参与共同数据元素 (CDE) 收集的情况. 从测试中脱离CDE特别促进了黑人和西班牙裔的代表性,减少了数据收集障碍.
科学领域:
- 健康 公平 研究 健康 公平 研究
- 社区参与的研究
- 数据协调与统一
背景情况:
- 共同数据元件 (CDE) 对于数据解释和研究可重复性至关重要.
- 在研究人员和服务不足的社区之间建立信任对于公平的数据收集至关重要.
- 以前的CDE收集方法在社区参与和数据代表性方面面临着挑战.
研究的目的:
- 推未来的CDE发展战略,以加强社区伙伴关系.
- 协调数据解释,减少研究人员与服务不足的人群之间的不信任.
- 为了评估CDE收集方法在快速加速诊断-Underserved人口返回学校的项目.
主要方法:
- 强制性CDE收集的横截面定性和定量评估.
- 在CDE参与者和测试倡议参与者之间比较种族/民族代表性.
- 分析缺失的CDE数据,按领域进行分析,并按CDE收集策略分层.
主要成果:
- 大多数研究目标 (47%) 完全脱离了CDE与测试倡议的联系.
- 对于CDE参与者与测试参与者的种族/种族分布的最小变化.
- 完全脱离CDE增加了黑人和西班牙裔在CDE和测试中的参与.
结论:
- 在研究设计中,与代表性不足的人群的早期合作是关键.
- 将CDE问题定制为特定人群可以提高参与度.
- 从测试举措中脱离CDE显示出增加数据收集多样性的承诺.
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