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创建一个药物基因组学患者门户,作为现有面向机构提供者的临床决策支持系统的补充。

Creation of a pharmacogenomics patient portal complementary to an existing institutional provider-facing clinical decision support system.

作者信息

Lipschultz Elizabeth, Danahey Keith, Truong Tien M, Schierer Emily, Volchenboum Samuel L, Ratain Mark J, O'Donnell Peter H

机构信息

Center for Research Informatics, University of Chicago, Chicago, Illinois, USA.

Center for Personalized Therapeutics, University of Chicago, Chicago, Illinois, USA.

出版信息

JAMIA Open. 2021 Aug 27;4(3):ooab067. doi: 10.1093/jamiaopen/ooab067. eCollection 2021 Jul.

Abstract

BACKGROUND

Applied pharmacogenomics presents opportunities for improving patient care through precision medicine, particularly when paired with appropriate clinical decision support (CDS). However, a lack of patient resources for understanding pharmacogenomic test results may hinder shared decision-making and patient confidence in treatment. We sought to create a patient pharmacogenomics education and results delivery platform complementary to a CDS system to facilitate further research on the relevance of patient education to pharmacogenomics.

METHODS

We conceptualized a model that extended the data access layer of an existing institutional CDS tool to allow for the pairing of decision supports offered to providers with patient-oriented summaries at the same level of phenotypic specificity. We built a two-part system consisting of a secure portal for patient use and an administrative dashboard for patient summary creation. The system was built in an ASP.NET and AngularJS architecture, and all data was housed in a HIPAA-compliant data center, with PHI secure in transit and at rest.

RESULTS

The YourPGx Patient Portal was deployed on the institutional network in June 2019. Fifty-eight unique patient portal summaries have been written so far, which can provide over 4500 results modules to the pilot population of 544 patients. Patient behavior on the portal is being logged for further research.

CONCLUSIONS

To our knowledge, this is the first automated system designed and deployed to provide detailed, personalized patient pharmacogenomics education complementary to a clinical decision support system. Future work will expand upon this system to allow for telemedicine and patient notification of new or updated results.

摘要

背景

应用药物基因组学为通过精准医学改善患者护理提供了机会,特别是与适当的临床决策支持(CDS)相结合时。然而,缺乏用于帮助患者理解药物基因组学检测结果的资源可能会阻碍共同决策以及患者对治疗的信心。我们试图创建一个与CDS系统互补的患者药物基因组学教育和结果交付平台,以促进关于患者教育与药物基因组学相关性的进一步研究。

方法

我们构思了一个模型,该模型扩展了现有机构CDS工具的数据访问层,以便在相同表型特异性水平上,将提供给医疗服务提供者的决策支持与面向患者的总结进行配对。我们构建了一个由患者使用的安全门户和用于创建患者总结的管理仪表板组成的两部分系统。该系统采用ASP.NET和AngularJS架构构建,所有数据都存储在符合HIPAA标准的数据中心,受保护的健康信息在传输和存储过程中均安全。

结果

YourPGx患者门户于2019年6月在机构网络上部署。到目前为止,已经编写了58份独特的患者门户总结,可为544名患者的试点人群提供超过4500个结果模块。正在记录患者在门户上的行为以进行进一步研究。

结论

据我们所知,这是第一个设计和部署的自动化系统,用于提供与临床决策支持系统互补的详细、个性化的患者药物基因组学教育。未来的工作将扩展该系统,以实现远程医疗以及患者对新结果或更新结果的通知。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/87b4/8390782/1932e94876ca/ooab067f1.jpg

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