Coordination of care for complex pediatric patients: perspectives from providers and parents

Coordinators help patients requiring complex chronic care manage frequent ambulatory visits and services received at home or from community-based agencies. EHRs directly support only a few of the required tasks as they do not allow access to all parties involved in care. Our goal was to examine how technology was used to coordinate efforts and to describe common barriers and facilitators. Insights may inform the design of tools that would effectively support identified goals. We conducted five hours of interviews with sixteen parents and six clinicians and characterized emergent themes from transcripts. Situational awareness, care and visit planning, document aggregation, abstraction and interpretation were tasks essential to coordination yet generally poorly supported by EHRs. Providers communicated primarily by email, telephone and by exchanging paper and scanned documents. A preliminary model of coordination that could be used in the planning and testing stages of a User Centered Design process is described.