Design Thinking: A Novel Approach to Pediatric Complex Care Coordination (2020-2021)


Children with special healthcare needs (CSHCN) and children with medical complexity (CMC) – or those with chronic and complex medical conditions – represent the highest need and highest cost among the pediatric population. These children typically have multiple chronic conditions requiring interdisciplinary care with advanced healthcare technologies such as breathing machines and feeding tubes. Care coordination often becomes a caregiver responsibility, because the healthcare system fails to meet the unique needs of these children. Care can be fragmented, resulting in caregiver stress, unmet medical needs and high rates of hospital utilization.

To overcome these challenges, there is a critical need for health systems to engage with families of CSHCN and CMC as essential partners who can help redesign health services to better meet their needs, while simultaneously delivering high-quality care that is equitable, effective, coordinated and patient-centered.

Project Description

This project team will examine care coordination for CSHCN and CMC through the framework of human-centered design, a problem-solving approach that utilizes iterative steps to tailor-make solutions for complex problems. End-users (those who will use or deliver the product) partner in the design process to better understand, meet and even preempt users’ needs.

Using human-centered design, the team will guide the development of patient-centered interventions focused on redesigning health service delivery for children with medical complexity. Team members will evaluate the current state of care delivery for CSHCN and CMC in a large health system and examine implementation research to address the challenges to care.

To evaluate complex care coordination, the team will adapt measures of continuity and coordination to assess current care management systems for CSHCN and CMC and identify gaps across different domains at four Duke University-affiliated pediatric primary care sites. Team members will use quantitative and qualitative measures, such as informant interviews, to evaluate varying perspectives on care coordination among caregivers, healthcare providers and systems representatives.

The team will then engage stakeholders in the design of an outpatient care model for CSHCN and CMC. Ultimately, the care model will be implemented through a primary care, clinic-based pilot to assess feasibility and evaluate the impact on stakeholder satisfaction, caregiver burden and hospital utilization.

Anticipated Outputs

Pilot patient-centered model for care integration for children with special healthcare needs and children with medical complexity; publications on human-centered design in healthcare


Summer 2020 – Spring 2021

  • Summer 2020 (optional): Assemble design team; develop pilot patient-centered care model
  • Fall 2020: Implement pilot; collect and analyze data; iterate on pilot
  • Spring 2021: Complete analysis of pilot feedback; finalize CMC model; initiate expansion to additional clinical sites


Image: Pediatric neurosurgeon Eric Thompson teaches Duke first-year medical students about the anatomy of the cerebral cortex and the blood vessels that supply blood to the brain during a wet-lab experience with human brain specimens, by Jared Lazarus/Duke University


Team Leaders

  • Richard Chung, School of Medicine-Pediatrics: Primary Care Pediatrics
  • Claudia Leung, School of Medicine-Pediatrics
  • David Ming, School of Medicine-Medicine: General Internal Medicine

/graduate Team Members

  • Willis Wong, Biomedical Sciences

/undergraduate Team Members

  • Natalie Chou
  • Alice Chun
  • Viviana Geron
  • Danielle Kapustin, Philosophy (AB)
  • Vineethsubbu Somasundaram, Neuroscience (BS), Computer Science (BS2)

/zcommunity Team Members

  • Ashley Isley, NC State University Graduate School
  • Meichun Liu, NC State University Graduate School
  • Tsai Lu Liu, Graphic Design Industrial Design, North Carolina State University College of Design
  • John Derek Parsons, NC State University Graduate School