Umakanth Subiksha, Vaynrub Anna, West Harry, Dimond Jill, Michel Alissa, Crew Katherine D, Kukafka Rita
Department of Biomedical Informatics, Vagelos College of Physicians and Surgeons, Columbia University Irving Medical Center, New York, NY.
Department of Medicine, Vagelos College of Physicians and Surgeons, Columbia University Irving Medical Center, New York, NY.
AMIA Annu Symp Proc. 2025 May 22;2024:1129-1138. eCollection 2024.
RealRisks is a decision aid that integrates patient-generated and electronic health record (EHR) data using Fast Healthcare Interoperability Resources (FHIR). It offers modules to enhance understanding of breast cancer risk and a way for individuals to review and modify their EHR data before it is used in their personal risk assessment. RealRisks intends to encourage high-risk patients to take risk-reducing measures. To better understand how patients understand risk and barriers to action, we conducted in-depth interviews as part of a usability study to assess the clarity and interpretability of RealRisks. Overall, participants demonstrated an improved understanding of breast cancer risk after using RealRisks. However, challenges were noted for certain concepts, in particular, lifetime risk, how benign breast disease affects your risk, and the differences between hereditary, sporadic, and familial cancer. The EHR download feature was well-received, but some raised concerns about insurance and privacy/security.
RealRisks是一种决策辅助工具,它利用快速医疗保健互操作性资源(FHIR)整合患者生成的数据和电子健康记录(EHR)。它提供了一些模块来增强对乳腺癌风险的理解,并为个人提供一种在其个人风险评估中使用EHR数据之前对其进行审查和修改的方式。RealRisks旨在鼓励高风险患者采取降低风险的措施。为了更好地了解患者如何理解风险以及行动障碍,我们作为可用性研究的一部分进行了深入访谈,以评估RealRisks的清晰度和可解释性。总体而言,参与者在使用RealRisks后对乳腺癌风险有了更好的理解。然而,某些概念存在挑战,特别是终生风险、良性乳腺疾病如何影响风险,以及遗传性、散发性和家族性癌症之间的差异。EHR下载功能受到好评,但一些人对保险以及隐私/安全提出了担忧。