Department of Neurology, University of Miami, Miami, Florida, USA.
Department of Neurology, California Pacific Medical Center, San Francisco, California, USA.
Muscle Nerve. 2022 Feb;65(2):154-161. doi: 10.1002/mus.27454. Epub 2021 Nov 16.
The electronic health record (EHR) is designed principally to support the provision and documentation of clinical care, as well as billing and insurance claims. Broad implementation of the EHR, however, also yields an opportunity to use EHR data for other purposes, including research and quality improvement. Indeed, effective use of clinical data for research purposes has been a long-standing goal of physicians who provide care for patients with ALS, but the quality and completeness of clinical data, as well as the burden of double data entry into the EHR and into a research database, have been persistent barriers. These factors provided motivation for the development of the ALS Toolkit, a set of interactive digital forms within the EHR that enable easy, consistent, and structured capture of information relevant to ALS patient care (as well as research and quality improvement) during clinical encounters. Routine use of the ALS Toolkit within the context of the CReATe Consortium's institutional review board-approved Clinical Procedures to Support Research in ALS (CAPTURE-ALS) study protocol, permits aggregation of structured ALS patient data, with the goals of empowering research and driving quality improvement. Widespread use of the ALS Toolkit through the CAPTURE-ALS protocol will help to ensure that ALS clinics become a driving force for collecting and aggregating clinical data in a way that reflects the true diversity of the populations affected by this disease, rather than the restricted subset of patients that currently participate in dedicated research studies.
电子健康记录（EHR）主要旨在支持临床护理的提供和记录，以及计费和保险索赔。然而，EHR 的广泛实施也为其他目的（包括研究和质量改进）使用 EHR 数据提供了机会。实际上，有效利用临床数据进行研究目的一直是为 ALS 患者提供护理的医生的长期目标，但临床数据的质量和完整性，以及将数据重复输入 EHR 和研究数据库的负担，一直是持续存在的障碍。这些因素促使开发了 ALS 工具包，这是 EHR 中的一组交互式数字表单，可在临床就诊期间轻松、一致且结构化地捕获与 ALS 患者护理（以及研究和质量改进）相关的信息。在 CReATe 联盟机构审查委员会批准的支持 ALS 研究的临床程序（CAPTURE-ALS）研究方案的背景下，常规使用 ALS 工具包允许聚合结构化的 ALS 患者数据，旨在赋予研究权力并推动质量改进。通过 CAPTURE-ALS 协议广泛使用 ALS 工具包将有助于确保 ALS 诊所成为以反映受这种疾病影响的人群的真正多样性的方式收集和聚合临床数据的驱动力，而不是目前参与专门研究的患者的受限子集。
