Gaps in Care
Improving care for patients with Congenital Heart Disease in Austin
PROBLEM
How might we reduce gaps in care for patients with congenital heart disease (CHD) considering the life-long patient journey in conjunction with social determinants of health?
SOLUTION
1. Patient Experience Platform that preemptively engages a child & family in their care journey so they can start to consider what is coming medically and start collecting gaps in their understanding, for the benefit of the psychosocial and medical teams.
2. Common Language Tool targeted at increasing the visibility of team roles and reducing communication gaps between the psychosocial and medical teams.
Project Scope
Client: Dell Children's Medical Center, Texas Center for Pediatric and Congenital Heart Disease Team
My Role: Experience Designer & User Researcher (Project Duration: 4 Months)
I contributed to this project in the following ways:
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Performed ethnographic research during the exploratory phase of the project.
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Contributed to directing the production of early-stage digital prototypes and service mapping that will be used for patient validation testing.
Tools Used: Figma, Hand-written notes, Miro, Box, Zoom, Digital Sketching, Canva
🚀 Client Kickoff
Currently, mortality is the only metric used to determine patient outcomes, for children with CHD.
Dell Children's is working to make care a better experience for patients and their families."Advances in the field of CHD have led to improved survival, particularly in individuals with single-ventricular CHD. Despite improvements in care, the lifetime journey of patients and families is fragmented and fraught with obstacles and challenges. Addressing these lifelong challenges will require a paradigm shift in care delivery with a shift in research to focus on long-term trajectories instead of the more traditional approach using mortality outcomes."
Our Goal: To explore tenants of health design research by designing to improve the life-long patient experience of children and families with CHD, by addressing previously noted gaps in care identified in the corage project and expand the scope of our investigation from just SV-CHD to all patients who live with CHD.
Picture taken by team preceeding ethnographic research at Dell Children's Medical Center.
Over 4 months we looked to understand how patients with CHD, during their interstage childhood period, experience care and how that translates to their overall patient journey.
How we got there...
Methodology
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Ethnographic research
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KJ Method - Data Synthesis
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Research Validation & Opportunity Statement
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Ideation Workshop
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Storyboard Experience & Prototyping
🔍 Ethnographic Research
The Methodology
Spent more than 500 hours conducting observational research across 7 hospital locations. Specifically observed these two groups:
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The medical experience for patients over the course of their life journey with CHD, starting from their initial diagnosis to their interstage period (4 - 6 months)
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The medical care practices that are provided by the cardiology clinical team who are involved in the healthcare experience of patients with CHD.
The second round of research included asking pointed questions to these users to confirm some of our initial observations.
The Process
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The research initially started with observations across various clinic locations and later focused on observations specifically within the Pediatrix clinic.
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Insights from the first round of research showed it would be valuable to conduct a second round of interviews specifically observing the psychosocial team to better understand the patient journey.
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I took handwritten notes and organized them into Miro.
Served as a third party, not interviewing clinicians or patients at this stage, but assessing the functioning of the clinic and what is happening that is contributing to efficient care and gaps in care.
Picture of the Miro board used by the research team to share observational notes.
🔍 Research Validation
Previously Mapped Journey Map Review
We compared the previously mapped journey for SV-CHD patients, completed by the corage team at Dell Children's Ascension on top of the ethnographic research that we had completed. We looked at the current gaps that were marked out previously from that study and then determined based on our observations what potential areas we can look to bring a solution into.
Picture of some of the previously identified gaps in patient care at Dell Children's hospital. Highlighted sections resemble overlaps that were observed during our field study.
Our Research Findings
Clinical Team Dynamics
Problem: There is a breakdown of trust between patients and providers because of communication gaps, like a lack of compassionate care delivery and inconsistent messaging/information.
Family & Provider Interactions
Problem: There is a lack of integration of psychosocial, mental, and neurodevelopmental resources into patient care (psychosocial - psychology & social work team).
🤔 How Might We ...
Standardize
HMW standardize the communication between the psychosocial team & doctors in order to reduce conflict and friction?
Map
HMW develop a standardized map of info streams for each patient?
Balance
HMW strike a balance between expert & compassionate care in communication with patients?
Observational data affinity clustered on large boards.
Came up with a total of 100 early-stage prototype concepts and landed on a Patient Experience Platform (PEP) that would be used by patients, their family, and care team.
Deliverables
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Service Map - visual overview of the activities and features that the PEP would provide to families, psychosocial and medical teams.
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Digital Platform Mockups - These early-stage mockups would be used in the next phase of the project when interviewing patients about their care journey and specific needs of this platform.
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Patient Journey Map: Physical touchpoint for the patient to start getting involved in their CHD care journey.
Service map representing the key activities that take place within the patient experience platform.
💭 Reflection
Industry Takeaways
CHD is a life-transforming diagnosis that requires complex care team management. It was important to be aware of the hierarchical nature of medicine and the inner team dynamics that exist in this medical space. It was essential that we protect the people that may reap the consequences of bringing to light prevalent tensions.
In addition, regulations for communication within the product's design would need to remain HIPAA compliant, which can limit the capabilities of the digital product.
Personal Takeaways
Working within an established system does bring with it limitations on how you can operate. It was essential to be sensitive to existing friction while performing research. Despite this, working with the medical and psychosocial teams was an amazing opportunity to be part of positively impacting the long-term care management of CHD patients.