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Oncoshare: Lessons Learned from Building an Integrated Multi-institutional Database for Comparative Effectiveness Research

机译:Oncoshare:从建立用于比较有效性研究的集成多机构数据库中汲取的经验教训

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摘要

Comparative effectiveness research (CER) using observational data requires informatics methods for the extraction, standardization, sharing, and integration of data derived from a variety of electronic sources. In the Oncoshare project, we have developed such methods as part of a collaborative multi-institutional CER study of patterns, predictors, and outcome of breast cancer care. In this paper, we present an evaluation of the approaches we undertook and the lessons we learned in building and validating the Oncoshare data resource. Specifically, we determined that 1) the state or regional cancer registry makes the most efficient starting point for determining inclusion of subjects; 2) the data dictionary should be based on existing registry standards, such as Surveillance, Epidemiology and End Results (SEER), when applicable; 3) the Social Security Administration Death Master File (SSA DMF), rather than clinical resources, provides standardized ascertainment of mortality outcomes; and 4) CER database development efforts, despite the immediate availability of electronic data, may take as long as two years to produce validated, reliable data for research. Through our efforts using these methods, Oncoshare integrates complex, longitudinal data from multiple electronic medical records and registries and provides a rich, validated resource for research on oncology care.
机译:使用观测数据的比较有效性研究(CER)需要信息学方法来提取,标准化,共享和整合从各种电子资源获得的数据。在Oncoshare项目中,我们开发了这样的方法,作为乳腺癌研究模式,预测因素和结果的多机构协作CER研究的一部分。在本文中,我们对我们采用的方法进行了评估,并在构建和验证Oncoshare数据资源方面吸取了教训。具体来说,我们确定了1)国家或地区癌症登记处是确定受试者纳入的最有效起点; 2)数据字典应基于适用的现有注册管理机构标准,例如监视,流行病学和最终结果(SEER); 3)社会保障局死亡总档案(SSA DMF)而非临床资源提供了标准化的死亡结果确定; 4)尽管可以立即获得电子数据,但CER数据库开发工作仍可能需要长达两年的时间才能生成经过验证的可靠数据用于研究。通过我们使用这些方法的努力,Oncoshare整合了来自多个电子病历和注册表的复杂的纵向数据,并为肿瘤护理研究提供了丰富且经过验证的资源。

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