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

J Am Med Inform Assoc. 2020 Dec 9;27(12):1860-1870. doi: 10.1093/jamia/ocaa193.


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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Caregivers*
  • Child
  • Chronic Disease / therapy*
  • Electronic Health Records*
  • Health Personnel
  • Humans
  • Legal Guardians
  • Parents
  • Patient Care Planning*
  • Pediatrics
  • User-Centered Design*
  • User-Computer Interface*