Surfacing and Improving Lived Experiences
- US Department of Health and Human Services
- PISTIS, CODE, Ensemble, Howard University
- Delivery Date:
- September 30, 2020
Sickle Cell Disease is the most common inherited blood disorder in the world, currently affecting about 100,000 Americans.
SCD is the most common inherited blood disorder in the United States, disproportionately affecting African Americans. The Health and Human Services’ Office of the Chief Technology Officer sought to respond to a nationwide demand for population-level SCD surveillance data and other data to support better treatments and healthcare options for people with SCD. They needed a partner to conduct several levels of patient-centered research, extract cross-discipline insights by cutting across work silos, and create a platform to begin addressing the Sickle Cell community’s needs and concerns. Coforma’s Health+ program was a perfect fit for the challenge at hand.
Through the Health+ module, we collaborated with HHS and other partners to drive innovation labs, facilitate workshops with patients and subject-matter experts, conduct user and Human-Centered Design (HCD) research, develop patient-driven service designs, coordinate validation roundtables, create a highly-functional HCD report, and deliver an event aimed at generating solutions to identified issues.
Coforma presented an HCD report of research findings, detailing journey maps, personas, archetypes, themes, and insights across interviews with the Sickle Cell community. The Health+ SCD engagement culminated with a Healthathon to innovate patient care solutions based on the research done by Coforma.