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通过缺少的种族和民族数据来评估差异:来自少年关节炎登记册的结果
Katelyn M Banschbach1,2, Jade Singleton3, Xing Wang3
1Division of Pediatric Rheumatology, Seattle Children's Hospital, Seattle, WA, United States.
Frontiers in pediatrics
|August 8, 2024
概括
改善电子健康记录 (EHR) 中的种族和民族数据对于研究公平至关重要. 在儿科风湿病学注册表中补充缺失的数据并没有改变本研究中结果差异的发现.
科学领域:
- 医疗信息学 医疗信息学
- 临床研究 临床研究
- 健康差异 在健康上的差异
背景情况:
- 电子健康记录 (EHR) 和登记册中的高质量的种族和种族数据对于少数群体纳入研究和检测健康差异至关重要.
- 儿童风湿病治疗成果改善网络的目标是提高数据的完整性,并评估其对研究结论的影响.
研究的目的:
- 改善在儿科风湿病学注册表中的种族和种族数据的完整性.
- 评估改善数据完整性对从注册表数据中得出的结论的影响.
主要方法:
- 一个混合方法的质量改进研究,包括数据识别,收集方法的调查,数据补充的审计和反周期,对结果措施的影响评估和参与者采访.
- 采用了五部分方法,包括基线数据评估,当前实践调查,通过审计恢复数据,结果测量分析和面试的主题分析.
主要成果:
- 最初,29%的患者缺乏种族数据,31%缺乏种族数据,数据输入方法有显著差异.
- 审计和反周期减少了94%的缺失数据,主要是通过EHR数据恢复.
- 虽然恢复的数据显示了不同的人口分布,但补充缺少的种族和种族数据并没有改变本样本中青少年关节炎 (cJADAS10 ≥5) 观察到的结果差异.
结论:
- 通过有针对性的质量改进计划,在种族和种族数据的完整性方面取得了显著的改进.
- 这项研究表明,虽然数据的完整性是可行的,但它对检测结果中的种族差异的影响可能需要更大的样本大小,因为恢复数据中的潜在偏差.
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