Nakikj Drashko, Kreda David, Gehlenborg Nils
Department of Biomedical Informatics, Harvard Medical School, Boston, MA, United States.
JMIR Form Res. 2023 Apr 3;7:e41346. doi: 10.2196/41346.
In the United States, patients can access their electronic health record (EHR) data through patient portals. However, current patient portals are mainly focused on a single provider, with very limited data sharing capabilities and put low emphasis on independent sensemaking of the EHR data. This makes it very challenging for patients to switch between different portals and aggregate the data to obtain a complete picture of their medical history and to make sense of it. Owing to this fragmentation, patients are exposed to numerous inconveniences such as medical errors, repeated tests, and limited self-advocacy.
To overcome the limitations of EHR patient portals, we designed and developed Discovery-a web-based application that aggregates EHR data from multiple providers and present them to the patient for efficient exploration and sensemaking. To learn how well Discovery meets the patients' sensemaking needs and what features should such applications include, we conducted an evaluation study.
We conducted a remote study with 14 participants. In a 60-minute session and relying on the think-aloud protocol, participants were asked to complete a variety of sensemaking tasks and provide feedback upon completion. The audio materials were transcribed for analysis and the video recordings of the users' interactions with Discovery were annotated to provide additional context. These combined textual data were thematically analyzed to surface themes that reflect how participants used Discovery's features, what sensemaking of their EHR data really entails, and what features are desirable to support that process better.
We found that Discovery provided much needed features and could be used in a variety of everyday scenarios, especially for preparing and during clinical visits and also for raising awareness, reflection, and planning. According to the study participants, Discovery provided a robust set of features for supporting independent exploration and sensemaking of their EHR data: summary and quick overview of the data, finding prevalence, periodicity, co-occurrence, and pre-post of medical events, as well as comparing medical record types and subtypes across providers. In addition, we extracted important design implications from the user feedback on data exploration with multiple views and nonstandard user interface elements.
Patient-centered sensemaking tools should have a core set of features that can be learned quickly and support common use cases for a variety of users. The patients should be able to detect time-oriented patterns of medical events and get enough context and explanation on demand in a single exploration view that feels warm and familiar and relies on patient-friendly language. However, this view should have enough plasticity to adjust to the patient's information needs as the sensemaking unfolds. Future designs should include the physicians in the patient's sensemaking process and improve the communication in clinical visits and via messaging.
在美国，患者可以通过患者门户访问其电子健康记录（EHR）数据。然而，当前的患者门户主要侧重于单个医疗服务提供者，数据共享能力非常有限，并且对EHR数据的自主理解重视不足。这使得患者在不同门户之间切换并汇总数据以全面了解其病史并理解这些数据变得极具挑战性。由于这种碎片化，患者面临诸多不便，如医疗差错、重复检查以及自我维权受限等问题。
为克服EHR患者门户的局限性，我们设计并开发了Discovery——一个基于网络的应用程序，它能汇总来自多个医疗服务提供者的EHR数据，并将其呈现给患者以便进行高效探索和理解。为了解Discovery在多大程度上满足患者的理解需求以及此类应用程序应具备哪些功能，我们开展了一项评估研究。
我们对14名参与者进行了一项远程研究。在一个60分钟的环节中，参与者依据出声思维协议，被要求完成各种理解任务，并在完成后提供反馈。音频材料被转录用于分析，用户与Discovery交互的视频记录被标注以提供更多背景信息。对这些综合的文本数据进行主题分析，以揭示反映参与者如何使用Discovery的功能、他们对EHR数据的实际理解过程以及为更好地支持该过程所需功能的主题。
我们发现Discovery提供了急需的功能，可用于各种日常场景，特别是在临床就诊前准备阶段和就诊期间，也可用于提高认识、进行反思和规划。根据研究参与者的说法，Discovery提供了一套强大的功能来支持对其EHR数据的自主探索和理解：数据的总结和快速概览、发现医疗事件的患病率、周期性、共现情况以及前后变化，还有比较不同医疗服务提供者之间的病历类型和子类型。此外，我们从用户对多视图数据探索和非标准用户界面元素的反馈中提取了重要的设计启示。
以患者为中心的理解工具应具备一组核心功能，这些功能应易于快速掌握，并支持各类用户的常见用例。患者应能够检测医疗事件的时间导向模式，并在一个感觉温暖且熟悉、使用患者友好语言的单一探索视图中按需获取足够的背景信息和解释。然而，这个视图应具有足够的灵活性，以便在理解过程展开时根据患者的信息需求进行调整。未来的设计应让医生参与患者的理解过程，并改善临床就诊期间以及通过信息传递的沟通。
