Burnett-Hartman Andrea N, Udaltsova Natalia, Kushi Lawrence H, Neslund-Dudas Christine, Rahm Alanna Kulchak, Pawloski Pamala A, Corley Douglas A, Knerr Sarah, Feigelson Heather Spencer, Hunter Jessica Ezzell, Tabano David C, Epstein Mara M, Honda Stacey A, Ter-Minassian Monica, Lynch Julie A, Lu Christine Y
Institute for Health Research, Kaiser Permanente Colorado, Aurora, CO.
Kaiser Permanente Northern California, Oakland, CA.
JCO Clin Cancer Inform. 2019 Sep;3:1-10. doi: 10.1200/CCI.19.00026.
To evaluate health care systems for the availability of population-level data on the frequency of use and results of clinical molecular marker tests to inform precision cancer care.
We assessed cancer-related molecular marker test data availability across 12 US health care systems in the Cancer Research Network. Overall, these systems provide care to a diverse population of more than 12 million people in the United States. We performed qualitative analyses of test data availability for five blood-based protein, nine germline, and 14 tissue-based tumor marker tests in each health care system's electronic health record and tumor registry using key informants, test code lists, and manual review of data types and output. We then performed quantitative analyses to estimate the proportion of patients with cancer with test utilization data and results for specific molecular marker tests.
Health systems were able to systematically capture population-level data on all five blood protein markers, six of 14 tissue-based tumor markers, and none of the nine germline markers. Successful, systematic data capture was achievable for tests with electronic data feeds for test results (blood protein markers) or through prior manual abstraction by tumor registrars (select tumor-based markers). For test results stored in scanned image files (particularly germline and tumor marker tests), information on which test was performed and test results was not readily accessible in an electronic format.
Even in health care systems with sophisticated electronic health records, there were few codified data elements available for evaluating precision cancer medicine test use and results at the population level. Health care organizations should establish standards for electronic reporting of precision medicine tests to expedite cancer research and facilitate the implementation of precision medicine approaches.
评估医疗保健系统中关于临床分子标志物检测使用频率和结果的人群水平数据的可获取性，以为精准癌症治疗提供信息。
我们评估了癌症研究网络中12个美国医疗保健系统的癌症相关分子标志物检测数据的可获取性。总体而言，这些系统为美国超过1200万不同人群提供医疗服务。我们使用关键信息提供者、检测代码列表，并通过人工审查数据类型和输出，对每个医疗保健系统的电子健康记录和肿瘤登记处中五种血液蛋白、九种生殖系和十四种组织肿瘤标志物检测的数据可获取性进行了定性分析。然后我们进行了定量分析，以估计有特定分子标志物检测使用数据和结果的癌症患者比例。
医疗系统能够系统地获取所有五种血液蛋白标志物、十四种组织肿瘤标志物中的六种以及九种生殖系标志物中无一的人群水平数据。对于通过检测结果的电子数据馈送（血液蛋白标志物）或通过肿瘤登记员先前的人工提取（选定的基于肿瘤的标志物）进行的检测，成功、系统的数据获取是可行的。对于存储在扫描图像文件中的检测结果（特别是生殖系和肿瘤标志物检测），关于进行了何种检测以及检测结果的信息无法以电子格式轻松获取。
即使在拥有复杂电子健康记录的医疗保健系统中，在人群水平上可用于评估精准癌症医学检测使用情况和结果的编码数据元素也很少。医疗保健组织应建立精准医学检测电子报告的标准，以加快癌症研究并促进精准医学方法的实施。
