癌症登记数据与 ASCO 的 CancerLinQ 电子健康记录数据的链接：优势、局限性和经验教训的评估。

Cancer Registry Data Linkage of Electronic Health Record Data From ASCO's CancerLinQ: Evaluation of Advantages, Limitations, and Lessons Learned.

机构信息

Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, IA.

Iowa Cancer Registry, College of Public Health, University of Iowa, Iowa City, IA.

出版信息

JCO Clin Cancer Inform. 2022 Mar;6:e2100149. doi: 10.1200/CCI.21.00149.

DOI:10.1200/CCI.21.00149

PMID:35483002

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9088237/

Abstract

PURPOSE

To evaluate the completeness of information for research and quality assessment through a linkage between cancer registry data and electronic health record (EHR) data refined by ASCO's health technology platform CancerLinQ.

METHODS

A probabilistic data linkage between Iowa Cancer Registry (ICR) and an Iowa oncology clinic through CancerLinQ data was conducted for cases diagnosed between 2009 and 2018. Demographic, cancer, and treatment variables were compared between data sources for the same patients, all of whom were diagnosed with one primary cancer. Treatment data and compliance with quality measures were compared among those with breast or prostate cancer; SEER-Medicare data served as a comparison. Variables captured only in CancerLinQ data (smoking, pain, and height/weight) were evaluated for completeness.

RESULTS

There were 6,175 patients whose data were linked between ICR and CancerLinQ data sets. Of those, 4,291 (70%) were diagnosed with one primary cancer and were included in analyses. Demographic variables were comparable between data sets. Proportions of people receiving hormone therapy (30% 26%, < .0001) or immunotherapy (22% 12%, < .0001) were significantly higher in CancerLinQ data compared with ICR data. ICR data contained more complete TNM stage, human epidermal growth factor receptor 2 testing, and Gleason score information. Compliance with quality measures was generally highest in SEER-Medicare data followed by the combined ICR-CancerLinQ data. CancerLinQ data contained smoking, pain, and height/weight information within one month of diagnosis for 88%, 52%, and 76% of patients, respectively.

CONCLUSION

Linking CancerLinQ EHR data with cancer registry data led to more complete data for each source respectively, as registry data provides definitive diagnosis and more complete stage information and laboratory results, whereas EHR data provide more detailed treatment data and additional variables not captured by registries.

摘要

目的

通过将癌症登记处数据与 ASCO 健康技术平台 CancerLinQ 精细化后的电子健康记录（EHR）数据进行链接，评估研究和质量评估信息的完整性。

方法

通过 CancerLinQ 数据，对 2009 年至 2018 年间诊断的病例，在爱荷华癌症登记处（ICR）和爱荷华肿瘤诊所之间进行了概率性数据链接。比较了同一患者来源的人口统计学、癌症和治疗变量，所有患者均被诊断为一种原发性癌症。对患有乳腺癌或前列腺癌的患者进行治疗数据和质量措施符合率的比较；SEER-医疗保险数据作为比较。评估仅在 CancerLinQ 数据中捕获的变量（吸烟、疼痛和身高/体重）的完整性。

结果

有 6175 名患者的 ICR 和 CancerLinQ 数据集之间的数据被链接。其中，4291 名（70%）被诊断为一种原发性癌症，并纳入分析。数据集之间的人口统计学变量具有可比性。与 ICR 数据相比，CancerLinQ 数据中接受激素治疗（30%比 26%，<.0001）或免疫治疗（22%比 12%，<.0001）的比例显著更高。ICR 数据包含更完整的 TNM 分期、人表皮生长因子受体 2 检测和 Gleason 评分信息。质量措施符合率通常在 SEER-医疗保险数据中最高，其次是 ICR-CancerLinQ 综合数据。CancerLinQ 数据在诊断后一个月内包含了 88%、52%和 76%的患者的吸烟、疼痛和身高/体重信息。