New Ways for Patients to Make Sense of Their Electronic Health Record Data Using the Discovery Web Application: Think-Aloud Evaluation Study

Abstract

Background 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. Objective 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. Methods 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. Results 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. Conclusions 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.

Alerts and Collections for Automating Patients’ Sensemaking and Organizing of Their Electronic Health Record Data for Reflection, Planning, and Clinical Visits: Qualitative Research-Through-Design Study

“…In addition, there is no support for organizing the relevant records for a given question. For a more detailed description of Discovery, please refer to the study by Nakikj et al [ 9 ], where the authors explain the data access and its features and usability.…”

“…Consequently, there is a widespread problem of patients’ EHR data being fragmented across multiple providers and patients having difficulties in making sense of these data in their siloed patient portals. Numerous studies point out the negative consequences for patients of these issues, emphasizing overwhelmingness with the amount of available but fragmented data [ 6 , 7 ], lack of patients’ and their physicians’ awareness of existing EHR data [ 6 , 8 ], underwhelming features that support patients’ independent identification of patterns in their EHR data that reflect or are tied to health problems [ 3 , 9 ], patients’ inability to refer back to the sensemaking activities they conducted in their portals [ 6 ], and lack of capabilities for effective evidence-based communication with their physicians [ 6 ]. These shortcomings manifest in a plethora of more concrete problems: limitations in knowing the complete picture of the patients’ medical history and ongoing health issues leading to redundant and duplicate tests, medical errors, and suboptimal decision-making and treatment; the lack of self-advocacy and poor patient-provider communication bringing difficulties in explaining the problem, setting goals, providing context and evidence, and devising care plans with referable, clear, and understandable actions; and challenges in transition of care and solving complex problems that require the engagement of multiple specialists across multiple institutions.…”

“…Previous research particularly has focused on the basic activities patients engage in when they are trying to make sense of their patient-generated data (PGD)—extreme values, trends, and correlations, among others [ 10 , 12 ]. In contrast, other work has explored patients’ sensemaking activities for their EHR data from multiple providers (eg, hospitals and clinics), such as prevalence, frequency, co-occurrence, and pre-post analysis of clinical events [ 9 ]. Furthermore, researchers have emphasized the importance of PGD in communication during clinical appointments.…”