Solutions for Unexpected Challenges Encountered when Integrating Research Genomics Results into the EHR.

ACI open Pub Date : 2020-07-01 Epub Date: 2020-11-13 DOI:10.1055/s-0040-1719059
Luke V Rasmussen, Christin Hoell, Maureen E Smith, Rex Chisholm, Justin Starren, Sharon Aufox, Yuan Luo, Laura J Rasmussen-Torvik
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Abstract

Background: While there have been published reports detailing technical challenges of incorporating genetic test results into the electronic health record (EHR) with proposed solutions, less has been published about unanticipated sociotechnological or practical communication challenges involved in this process.

Objectives: This study was aimed to describe unanticipated issues that arose returning genetic research results through the EHR as part of the National Human Genome Research Institute (NHGRI)-funded electronic Medical Records and Genomics (eMERGE) 3 consortium, and provide lessons learned for future implementations.

Methods: We sequenced 3,000 participants on a 109-gene panel and returned genetic results initially in person and/or by letter, with a later release directly into the EHR and patient portal.

Results: When results were returned through the EHR, multiple participants expressed confusion and contacted the health system, resulting in our institution temporarily freezing our return of research results.

Discussion: We determined the likely causes of this issue to be (1) the delay between enrollment and results return, (2) inability to personalize mass e-mail messages announcing new research test results in the EHR, (3) limited space for description of test results in the EHR, and (4) the requirement to list an ordering physician for research results in the EHR. For future return of results, we propose sending preparatory e-mails to participants, including screenshots of how they can expect to see their results presented in the EHR portal.

Conclusion: We hope our lessons learned can provide helpful guidance to other sites implementing research genetic results into the EHR and can encourage EHR developers to incorporate greater flexibility in the future.

将研究基因组学结果整合到电子病历时遇到的意外挑战的解决方案
摘要背景 虽然已经发表了详细说明将基因检测结果与拟议解决方案结合到电子健康记录(EHR)中的技术挑战的报告,但关于这一过程中出乎意料的社会技术或实际沟通挑战的报道较少。目标 这项研究旨在描述通过国家人类基因组研究所(NHGRI)资助的电子病历和基因组学(eMERGE)3联盟的EHR返回基因研究结果时出现的意外问题,并为未来的实施方法提供经验教训 我们对109个基因小组中的3000名参与者进行了测序,最初亲自和/或通过信件返回遗传结果,随后直接发布到EHR和患者门户。后果 当通过EHR返回结果时,多名参与者表示困惑,并联系了卫生系统,导致我们的机构暂时冻结了我们返回的研究结果。讨论 我们确定这一问题的可能原因是:(1)登记和结果返回之间的延迟,(2)无法在EHR中个性化宣布新研究测试结果的大量电子邮件,(3)EHR中描述测试结果的空间有限,以及(4)要求在EHR列出研究结果的订购医生。对于未来的结果返回,我们建议向参与者发送准备电子邮件,包括他们如何在EHR门户网站上看到自己的结果的屏幕截图。结论 我们希望我们的经验教训能够为其他将研究基因结果纳入EHR的网站提供有用的指导,并鼓励EHR开发者在未来融入更大的灵活性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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