背景:来自多个提供者的电子健康记录(EHR)数据通常表现出重要但令人费解和复杂的模式,患者发现这些模式难以识别和解释。然而,现有的面向患者的应用程序缺乏能力,以结合自动模式检测健壮和支持使患者的EHR数据的意义。此外,没有办法组织EHR数据的有效方式,适合病人的需要,使他们在现实生活中更可操作的设置。这些缺点往往导致患者健康状况的扭曲和不完整的图片,这可能导致次优的决策和行动,使患者处于危险之中。
目的:我们的主要目标是调查患者的态度,需要,并使用有关自动支持的场景,以在他们的EHR数据中显示重要模式,并提供组织它们最适合患者需求的手段。
方法:我们对14名参与者进行了一项探究式研究。在尖端应用的背景下提出,着重强调独立的EHR数据感知,叫做发现,我们将高级模型用于新功能,这些功能应该支持自动识别重要数据模式,并提供建议-警报-以及根据患者需求组织医疗记录的方法,就像相册里的照片一样.使用反身主题分析方法分析了合并的录音笔录和研究中的笔记。
结果:警报和集合可用于提高认识,反射,规划,尤其是基于证据的患者-提供者沟通。此外,患者需要精心设计的自动模式检测,并提供安全可行的建议,为潜在威胁和积极进展提供了量身定制的警报环境。此外,患者希望贡献自己的数据(例如,进度笔记)和日志感觉,每日观察,和测量,以丰富含义,并使警报和集合更容易感知。根据调查结果,我们将警报重命名为报告,以更中性的语气,并提供了更深入地将报告上下文化的设计含义,以提高可操作性;自动生成更快速和详尽组织EHR数据的集合;使患者生成的各种格式的数据输入能够支持更粗略的组织,更丰富的模式检测,并从经验中学习;并使用报告和收藏来提高效率,可靠,以及共同的患者-提供者沟通。
结论:患者需要有一种灵活而丰富的方式来组织和注释他们的EHR数据;从这些数据中获得积极和消极的见解;并在临床访问中或通过消息传递与他们的医生分享这些工件,以建立明确的目标的共享心理模型。商定的优先事项,和可行的行动。
BACKGROUND: Electronic health record (EHR) data from multiple providers often exhibit important but convoluted and complex patterns that patients find hard and time-consuming to identify and interpret. However, existing patient-facing applications lack the capability to incorporate automatic pattern detection robustly and toward supporting making sense of the patient\'s EHR data. In addition, there is no means to organize EHR data in an efficient way that suits the patient\'s needs and makes them more actionable in real-life settings. These shortcomings often result in a skewed and incomplete picture of the patient\'s health status, which may lead to suboptimal decision-making and actions that put the patient at risk.
OBJECTIVE: Our main goal was to investigate patients\' attitudes, needs, and use scenarios with respect to automatic support for surfacing important patterns in their EHR data and providing means for organizing them that best suit patients\' needs.
METHODS: We conducted an inquisitive research-through-design study with 14 participants. Presented in the context of a cutting-edge application with strong emphasis on independent EHR data sensemaking, called Discovery, we used high-level mock-ups for the new features that were supposed to support automatic identification of important data patterns and offer recommendations-Alerts-and means for organizing the medical records based on patients\' needs, much like photos in albums-Collections. The combined audio recording transcripts and in-study notes were analyzed using the reflexive thematic analysis approach.
RESULTS: The Alerts and Collections can be used for raising awareness, reflection, planning, and especially evidence-based patient-provider communication. Moreover, patients desired carefully designed automatic pattern detection with safe and actionable recommendations, which produced a well-tailored and scoped landscape of alerts for both potential threats and positive progress. Furthermore, patients wanted to contribute their own data (eg, progress notes) and log feelings, daily observations, and measurements to enrich the meaning and enable easier sensemaking of the alerts and collections. On the basis of the findings, we renamed Alerts to Reports for a more neutral tone and offered design implications for contextualizing the reports more deeply for increased actionability; automatically generating the collections for more expedited and exhaustive organization of the EHR data; enabling patient-generated data input in various formats to support coarser organization, richer pattern detection, and learning from experience; and using the reports and collections for efficient, reliable, and common-ground patient-provider communication.
CONCLUSIONS: Patients need to have a flexible and rich way to organize and annotate their EHR data; be introduced to insights from these data-both positive and negative; and share these artifacts with their physicians in clinical visits or via messaging for establishing shared mental models for clear goals, agreed-upon priorities, and feasible actions.