The ask
To map and redesign the care journey of patients with single-ventricle congenital heart disease, with an emphasis on creating a more holistic, empathic, inclusive, and comprehensive care model.
Project Corage was a three-party collaboration, which includes The Texas Center for Pediatric and Congenital Heart Disease, the Value Institute at Dell Medical School, and the Design Institute for Health.
See the results at: https://coragemap.com/
Results were also published in the Journal of the American Heart Association
The process
Research
Single ventricle congenital heart disease is a life-long experience, this meant complex research to understand the life of patients, families, providers and stakeholders involved in this journey.
The interviews were of two types: “looking-in”, when we interviewed internal stakeholders at Dell Medical School and the Texas Center for Pediatric and Congenital Heart Disease; and “looking-out”, when we interviewed patients, families and other external stakeholders.
The initial plan for Project Corage was to conduct contextual interviews, that is, meeting patients and families in context — at their homes, place of work, or a location where they feel comfortable. Because of the COVID-19 pandemic, seeing people in-person, in their natural environment, was no longer possible. We strove to recreate online the casual conversations we would have had with patients in person.
Provider Interviews - Looking in
We conducted 19 Provider interviews via Zoom that included:
- Providers (doctors, surgeons, nurses, nurse practitioners, etc)
- Psychologists, social workers, and other psycho-social specialists
- Physical therapists and other allied health specialists
- Administrators
Patient and families interviews - Looking out
We did 29 interviews including patients and family members, considering a variety of ages, backgrounds, roles, and languages.
As part of the interview design, we created a set of "challenge cards" as a tool to prompt difficult conversations and get an idea of the most common issues they faced and the priority given to each one. See cards here
Cards were designed taking as a framework the social determinants of health and inspired by early conversations with providers.
Synthesis
Dovetail tagging
Results - Artifacts
A key result of the research was a set of artifacts that communicated the complex learnings of the research to different audiences.
System map
This is one of my favorite artifacts of all time! This is an abstraction of all the systemic issues we encountered during research and draws a good picture of some of the biggest issues of the united states healthcare system as lack of insurance, siloed care, and bureaucracy which limit the ability of providers to offer integral best-of-class care.
- It presents the main actors in the system: The healthcare system, macro adjacent systems, the Congenital Heart disease program with its internal teams as well as the family and patients.
- The vertical axe moves from an individual level experience (downstream) towards the population health level (upstream) where we can see more systemic level issues.
- The factors that impact the family experience are framed by the social determinants of health framework and touch on how these impact the family's ability to cope with the first stages of the diagnosis and treatment.
Journey maps
The maps evolved over the course of 3 months.
Journey mapping in progress
Life long journey
Prenatal stage
Interstage
Childhood
Adolescence
Adulthood
The journeys were shared in a workshop with some of the families and providers that participated in the research, based on the new learnings and workshop activities the team iterated on the journeys and started to conceptualize solutions to the gaps.
Design opportunities
We refined and prioritized over 80 ideas for intervention into a set of 34 Opportunity Cards to explore ways the SV-CHD journey can be improved upon. Ultimately this human-centered, design-driven approach opened a larger conversation about potential future opportunities for re-design of care and service intervention. Full overview of the opportunity cards.
