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透明度是否能促进参与?信息封锁规则前后癌症患者对电子病历的获取情况

Does Transparency Promote Engagement? Cancer Patients' Access of Electronic Medical Records Before and After the Information Blocking Rule.

作者信息

Polubriaginof Fernanda C G, Chimonas Susan, Lipitz-Snyderman Allison, Spiegelhoff Zoe, Seier Kenneth, White Charlie, Jorvina Joshua, Kuperman Gilad

机构信息

Digital Informatics and Technology Solutions, Memorial Sloan Kettering Cancer Center, New York, NY.

Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, New York, NY.

出版信息

AMIA Annu Symp Proc. 2025 May 22;2024:900-909. eCollection 2024.

Abstract

Access to clinical information is critical to support patient engagement. The 21 Century Cures Act grants patients immediate electronic access to their full medical records. To assess the potential impact of this transparency provision, we conducted a retrospective study in a large cancer center in New York City, focusing on clinically active patients' accessing health information shared via the patient portal. We identified a significant increase (14%) in the number of pathology and radiology reports read by patients after the implementation ofimmediate release of reports. No changes were found in the rates of account creation or logins. Our results suggest that oncology patients show strong, consistent interest in their clinical data, with many taking advantage of the full electronic access granted by Cures. These findings shed new light on this legislation's impact on patient engagement and access to clinical data.

摘要

获取临床信息对于支持患者参与至关重要。《21世纪治愈法案》赋予患者即时电子访问其完整医疗记录的权利。为了评估这一透明度条款的潜在影响,我们在纽约市的一家大型癌症中心进行了一项回顾性研究,重点关注临床活跃患者通过患者门户网站访问共享健康信息的情况。我们发现,在实施报告即时发布后,患者阅读的病理学和放射学报告数量显著增加(14%)。账户创建率或登录率未发现变化。我们的结果表明,肿瘤患者对其临床数据表现出强烈、持续的兴趣,许多人利用了《治愈法案》赋予的完整电子访问权限。这些发现为该立法对患者参与和临床数据获取的影响提供了新的见解。

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