Vaynrub Anna, Umakanth Subiksha, West Harry, Michel Alissa, Dimond Jill, Constante Stephan, Crew Katherine D, Kukafka Rita
Department of Medicine, Vagelos College of Physicians and Surgeons, Columbia University Irving Medical Center, New York, NY.
Department of Biomedical Informatics, Vagelos College of Physicians and Surgeons, Columbia University Irving Medical Center, New York, NY.
AMIA Annu Symp Proc. 2025 May 22;2024:1159-1168. eCollection 2024.
A critical strategy in limiting breast cancer (BC) mortality is the early identification of high-risk patients and implementation of risk-reducing measures. , an online decision aid constructed by our team to provide education on BC risk and personalized risk assessment, allows users the option to connect to their electronic health record (EHR) to extract requisite data to calculate BC risk via Fast Healthcare Interoperability Resources (FHIR). Using data from user profiles, baseline questionnaires, and interview transcripts, we sought to understand the differences between the groups of patients who opted to download their data via the EHR vs. those who did not. A higher percentage of those who downloaded data (53.8% vs. 42.3%) identified as Hispanic/Latino compared to those who did not download. Thematic analysis suggested that while data security and privacy concerns may lead to hesitation, it is perhaps technological barriers that most significantly limit EHR download.
限制乳腺癌（BC）死亡率的一项关键策略是早期识别高危患者并实施降低风险的措施。我们团队构建的一个在线决策辅助工具，用于提供有关BC风险的教育和个性化风险评估，允许用户选择连接到他们的电子健康记录（EHR），以通过快速医疗保健互操作性资源（FHIR）提取必要数据来计算BC风险。利用来自用户档案、基线问卷和访谈记录的数据，我们试图了解选择通过EHR下载其数据的患者组与未下载数据的患者组之间的差异。与未下载数据的患者相比，下载数据的患者中更高比例（53.8%对42.3%）被认定为西班牙裔/拉丁裔。主题分析表明，虽然对数据安全和隐私的担忧可能导致犹豫，但最显著限制EHR下载的可能是技术障碍。
