Skip to main content
White board from a work session, covered in post it notes with ideas sorted into categories perceived, presented, and experienced.

Innovating Patient Care Solutions for Sickle Cell Disease

Through our Health+ Sickle Cell Disease (SCD) program, we synthesized the stories and struggles of people living with SCD to set the stage for new insights and approaches to improving care.

The Challenge

Client Name(s):
Health and Human Services, Office of the Chief Technology Officer
Partner Name(s):
Pistis, Center for Open Data Enterprise (CODE)
Delivery Date:
September 30, 2020

To support people living with SCD, we sought to uncover areas where their needs aren't being met sufficiently.

SCD is the most common inherited blood disorder in the United States. 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 siloes, and create a platform to begin addressing the sickle cell community’s concerns. Coforma’s Health+ program was a perfect fit for the challenge at hand.

Our Approach

We listened to the sickle cell community’s lived experiences, then created an opportunity to address their greatest concerns.

We conducted user interviews, a human-centered design workshop, and a roundtable conversation with people with sickle cell disease and those that care for them to surface the problems they faced. By continually refining and validating the personas, archetypes, and key issues identified in the community, we honed in on six opportunity areas for improvement.

A board of digital post-its to show how the team worked through specific experiences SCD patients struggle with regularly.

These inputs guided the subsequent Healthathon, a two-week-long challenge that brought together individuals and teams from across industries and geographies to craft solutions based on these identified problems in the SCD healthcare delivery space.


Graph showing how the research is broken down into 4 key archetypes.

User archetypes were used to synthesize design discovery insights.

User Archetypes

We synthesized the data from our interviews with the sickle cell community to create four archetypes. These archetypes are a distillation of design discovery insights meant to describe user needs, goals, pain points, and habits—a communication tool to help teams build empathy towards end-users and address all use cases.

Timeline of an ER journey for a patient that diverges at the end for if someone stays in the ER or becomes hospitalized.

A view of a patient’s experience in the ER over time.

Journey Maps

Also distilled from our research were journey maps capturing how people with SCD interacted with the healthcare system at different stages in their life. By following the user’s perspective, we gained insight into the touchpoints, obstacles, and barriers people seeking care commonly encounter.

A grid of 6 key areas where there are opportunities to improve care for SCD patients.

Six key areas outline the biggest stressors for people living with SCD.

Opportunity Areas

We identified the healthcare areas that presented the biggest stresses to people living with SCD. These opportunity areas became categories Healthathon participants were challenged to address with their submissions.

Project Team

  • AngelaAngela HopkinsCommunications Strategy
  • AshleighAshleigh AxiosSponsor, CXO
  • EduardoEduardo OrtizSponsor, Product Manager
  • JamesJames HobbsLead Report Content Designer
  • KathrynKathryn AllardeProject Manager
  • KateKate MurphyContent Designer
  • SabrinaSabrina FonsecaResearch Lead, Design Strategy
  • SonaSona ChaudharyContent Writer