CHD Case Study

A speaker gestures while holding a microphone, presenting in front of a colorful illustrated board titled “My Single Ventricle Congenital Heart Disease Journey.” The board is divided into four stages—Prenatal, Interstage, Childhood, and Adolescence—with corresponding illustrated pathways. The bottom includes labeled sections such as “Me and Bunny,” “How I Feel,” “Medallions,” “People I Have Met,” and “My Care Team.” A QR code with “Scan Me” appears in the lower left.

Improving Patient and Provider Communication in Congenital Heart Disease Care

Challenge

How might we address fragmented care and improve patient, caretaker, and provider experiences within the Dell Children’s Congenital Heart Disease Clinic?

Context

Congenital heart disease (CHD) represents a complex umbrella of diagnoses requiring extensive, coordinated care. Children diagnosed with CHD often experience lengthy hospital stays and care plans that involve numerous specialists, including physicians, nurses, social workers, and psychologists. Their families must navigate new, unexpected realities, while balancing complex information and evolving emotional challenges.

The large care teams involved in each case often experience communication barriers, particularly between medical and psychosocial teams. These gaps in communication create friction, leading to less effective care and increased confusion for families already struggling to manage the complexities of their child’s condition. Families often feel overwhelmed by the information provided and may have difficulty engaging fully with their child’s care journey.

Five medical professionals stand in conversation in front of a purple wall at Dell Children’s Medical Center. The group includes four women and one man, with the man wearing a white lab coat and the others in black jackets labeled “Design for Health.” A sign on the wall behind them features donor names and the phrase “Where our children need us to be.”

Approach

The project team, drawing on a previous research initiative called the Corage Project, used ethnographic research to observe clinical workflows and identify areas where design interventions could improve both the patient and provider experience. Through direct observation at Dell Children’s and collaboration with the care teams, the team identified key pain points in communication and care coordination. Their human-centered approach focused on creating solutions addressing patient-provider and provider-provider interactions.

Key activities included:

  • Journey mapping to understand the patient experience from prenatal diagnosis through adulthood 
  • Initial designs of a digital platform aimed at improving communication between the medical and psychosocial teams and streamlining information delivery to families 
  • Ideation and prototyping of over 100 concepts, eventually focusing on increasing teamwork among providers and improving families’ understanding of their child’s care
Graphic titled “Congenital Heart Disease: Design That Captures the Heart” in purple and blue text. Four illustrated icons below highlight key concepts: a heart labeled “Complex medical care,” three healthcare providers labeled “Large teams,” a figure with question marks labeled “New norms,” and a hospital bed labeled “Long hospital stay.”

 

Four Design in Health team members smile outside Dell Children’s Medical Center, wearing ID badges and black jackets. A text overlay reads “OBSERVATIONS” with stats: “>500 hours,” “7 sites,” and a list of areas including CCU, Cath Lab, Operating Room, Psychosocial Team, Cardiology Clinic, CHD Surgery Clinic, and Quality Assurance Conference.

Insights

  1. Provider Communication: Miscommunication between medical and psychosocial teams creates unproductive friction in patient care. Standardizing the interaction between these teams was identified as a critical area for improvement.
  2. Family Confusion: Families are often left confused by the volume and complexity of the information provided during clinical visits. They frequently struggle to recall key details or ask important questions during the limited time they have with providers.
  3. Ethnographic Research Impact: Spending significant time shadowing the clinical team and observing patient interactions provided essential insights into the daily challenges faced by both families and providers, leading to better-aligned design solutions.

Solutions

The comprehensive patient experience platform incorporates both digital and physical tools to support care coordination and communication, achieving the following outcomes:

  • Improved Communication: The platform enables better provider-to-provider communication, particularly between medical and psychosocial teams, ensuring that critical patient information is shared effectively and flagged for attention during clinical visits.
  • Enhanced Family Engagement: A patient-facing portal allows families to ask questions, access resources, and prepare for visits more effectively. The introduction of a FAQ feature, along with a virtual assistant named “Grace,” will help streamline common concerns, making clinical interactions more efficient and meaningful.
  • Positive Reception from Clinicians: More than 50 clinicians provided early feedback on the platform, expressing strong support for its potential to improve patient care. In a future development phase, the proposal would need to ensure HIPAA compliance and that the platform remained supplementary to, rather than a replacement for, in-person communication. Overall, the goal is to integrate these tools into the existing healthcare system to ensure better patient outcomes.
Illustrated outpatient service map for congenital heart disease, showing patient and provider pathways. Icons and flowcharts depict onboarding, preparation for visit, clinical visit, and provider benefits. Color-coded sections include family/patient activities, provider key actions, and psychosocial support, with arrows guiding flow through the system. Logos for Dell Children’s and Design in Health appear in the bottom left corner.
Graphic depicting the onboarding process for congenital heart disease care. On the left, illustrated icons represent the family, psychosocial, and medical teams. A purple circular arrow labeled "Psych Assessment" and "Intro to PEP Platform" surrounds a group of patients and providers. On the right, two smartphones display a medical app interface featuring treatment information, checklists, and a digital assistant. The background is split white and orange. Dell Children’s and Design in Health logos appear in
Infographic showing patient and family preparation for a clinical visit as part of congenital heart disease care. On the left, a blue circular diagram outlines activities like asking direct questions, recording voice memos, collecting character profiles, and using a portable journey map. A child and two adults stand near a digital device. On the right, mobile and tablet screens display a digital platform with features like a Q&A navigator, surgical checklist, support resources, and care team introductions.
Infographic illustrating key provider activities in preparing for a congenital heart disease patient visit. On the left, a blue circular diagram shows tasks like reviewing patient concerns and direct questions, providing resources, and incorporating care team comments. A provider and psychosocial team member stand with a child and parents, connected to digital tools like a tablet and journey map. On the right, two phone screens show a digital platform featuring patient cohorts and curated questions grouped
Infographic detailing the benefits of the CHD platform for healthcare providers. A purple circular graphic highlights advantages such as reduced email threads, patient-organized information, streamlined workflow integration, and a central communication hub enabling asynchronous collaboration. At the center, illustrated figures of a provider and psychosocial team member represent interdisciplinary care. On the right, two phone screens display the cohort view and patient-specific questions within the digital
Visual diagram of the clinical visit stage in the CHD service model. On the left, a family interacts with a provider at the hospital, with icons indicating questions answered, concerns addressed, and voice memos revisited. In the center, a circle labeled "Provider Key Activities" lists actions such as reviewing shared resources, flagged questions, team comments, and adding characters to the patient’s collection. On the right, phone screens illustrate a communication loop: a parent’s app view shows a Q&A con
Illustration of the inpatient phase in the CHD care model. A large purple circle represents the interaction between family, patient, psychosocial, and medical teams. The left side shows key family and patient activities—direct questions, voice memos, FAQ usage, character collection, and journey map use. The right side highlights provider activities like reviewing flagged questions, team comments, and adding new characters (e.g., a baseball character) to the patient's collection. On the right, two mobile scr
Illustrated journey map showing a parent using a digital health platform to prepare for their child’s care. The sequence begins with a clinician introducing the platform to a family. The parent then navigates the app, shown on a smartphone, progressing through welcome screens and question prompts like “How can I help?” and “How should I prepare?” She uses the platform to search for answers, including questions about school.

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Learn More

Find out more about Dell Children’s Medical Center.

Design Team

Shontá Bradford

Mara Fock

Emily McCalley

Claire Moreau

Sanjana Nagaraja

Ayesha Rahman

Veronica Remmert

Jewel Thompson-Adiuku

Brooke Upchurch

Project Summary

To improve communication and care coordination for children with congenital heart disease, students partnered with Dell Children’s Medical Center to design a patient experience platform. Grounded in ethnographic research, their solutions supported collaboration between medical and psychosocial teams and empowered families through digital tools—easing confusion, enhancing preparation, and improving outcomes across the care journey.

Project Contributors

Dell Children’s Medical Center

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