User-centered design of a longitudinal care plan for children with medical complexity

Abstract

Objective: To determine the content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with medical complexity (CMC) in acute care settings.

Materials and methods: We conducted iterative one-on-one design sessions with CMC caregivers (ie, parents/legal guardians) and providers from 5 groups: complex care, primary care, subspecialists, emergency care, and care coordinators. Audio-recorded sessions included content categorization activities, drawing exercises, and scenario-based testing of an electronic LCP prototype. We applied inductive content analysis of session materials to elicit content priorities and design preferences between sessions. Analysis informed iterative prototype revisions.

Results: We conducted 30 design sessions (10 with caregivers, 20 with providers). Caregivers expressed high within-group variability in their content priorities compared to provider groups. Emergency providers had the most unique content priorities among clinicians. We identified 6 key design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology.

Discussion: Findings from this study will inform enhancements of electronic health record-embedded LCPs and the development of new LCP tools and applications. The design preferences we identified provide a framework for optimizing integration of family and provider content priorities while maintaining a user-tailored experience.

Conclusion: Health information platforms that incorporate these design preferences into electronic LCPs will help meet the information needs of caregivers and providers caring for CMC in acute care settings.

Keywords: care coordination; chronic disease; health information exchange; hospital medicine; patient care planning; patient portals; pediatrics; transitional care; user-computer interface.

Figure 1.

Emergency care plan succinctly summarizes resuscitation and stabilization information with a focus on the child's medical equipment. The page also includes the child's baseline vitals and exam findings, as well as a brief section on child/parent preferences for care. A deeper dive into each of the child's active issues is accessible via a tab in the left-sided navigation bar (in blue).

Figure 2.

Customized icon homepage design, where caregivers can choose from a core set of care plan sections to customize their home page based on their content priorities.

Figure 3.

Active issues list. Each active issue (i.e. problem) can be associated with multiple “specialties” (i.e. systems) to accommodate the preferences of users who prefer a problem-based format versus a systems-based format. A search box allows users to filter active issues by specialty. Status presents a quick visual overview of high priority issues and can be edited by anyone on the care team.

Figure 4.

Active issues page with sick plan. For each active issue, the baseline management plan information is linked from other care plan sections, which are accessible via a left-sided navigation bar.