Population-Based Registry Linkages to Improve Validity of Electronic Health Record-Based Cancer Research.
Population-Based Registry Linkages to Improve Validity of Electronic Health Record-Based Cancer Research.
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DOI：
10.1158/1055-9965.epi-19-0882
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发表时间：
2020-04
期刊：
影响因子：
--
通讯作者：
Gomez SL
中科院分区：
文献类型：
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作者：
Thompson CA;Jin A;Luft HS;Lichtensztajn DY;Allen L;Liang SY;Schumacher BT;Gomez SL
利用整合电子健康记录（EHR）和基于人群的癌症登记数据所获得的价值进行研究具有巨大的潜力。登记提供详细的诊断肿瘤特征和治疗总结，而EHR包含丰富的临床细节。一个仔细进行的癌症登记联系也可以用来提高从EHR为基础的研究作出的推论的内部和外部有效性。我们将一个大型的、多专业的、混合支付的医疗保健系统的EHR与全州范围的癌症登记处联系起来，并评估了我们联系人群的有效性。对于内部效度，我们确定了可能在链接中“遗漏”的患者，这威胁到EHR研究人群的内部效度。为了概括性，我们比较了22个县EHR集水区的所有其他癌症患者的相关病例。从450万的EHR人群中，我们确定了306，554名癌症患者，占集水区癌症患者的26%。22.7%的关联患者在离开我们的医疗保健系统后被诊断出患有癌症，这突出了系统范围内关联的优势。我们观察了周围地区EHR患者和非EHR患者之间的人口统计学差异，并展示了使用基于模型的标准化选择概率来提高泛化能力。我们的经验为鼓励和告知有兴趣与EHR合作进行癌症研究的研究人员奠定了基础，并为利用联系评估和提高有效性和普遍性提供了背景。进行联系的研究人员可能会受益于考虑一个或多个这些方法来建立和评估其EHR为基础的人口的有效性。
There is tremendous potential to leverage the value gained from integrating electronic health records (EHRs) and population-based cancer registry data for research. Registries provide detailed diagnosis tumor characteristics, and treatment summaries, while EHRs contain rich clinical detail. A carefully conducted cancer registry linkage may also be used to improve the internal and external validity of inferences made from EHR-based studies. We linked the EHRs of a large, multispecialty, mixed-payer healthcare system with the statewide cancer registry and assessed the validity of our linked population. For internal validity, we identify patients that might be “missed” in a linkage, threatening the internal validity of an EHR study population. For generalizability, we compared linked cases with all other cancer patients in the 22-county EHR catchment region. From an EHR population of 4.5M, we identified 306,554 cancer patients, 26% of the catchment regions cancer patients. 22.7% of linked patients were diagnosed with cancer after they migrated away from our healthcare system highlighting an advantage of system-wide linkage. We observed demographic differences between EHR patients and non-EHR patients in the surrounding region and demonstrated use of selection probabilities with model-based standardization to improve generalizability. Our experiences set the foundation to encourage and inform researchers interested in working with EHRs for cancer research as well as provide context for leveraging linkages to assess and improve validity and generalizability. Researchers conducting linkages may benefit from considering one or more of these approaches to establish and evaluate the validity of their EHR-based populations.