Qualitative research on the challenges of living with sickle cell disease and getting access to care

Period
2020

Agency
Coforma

Role
Research and Project Lead

Background

The U.S. Department of Health and Human Services (HHS) hired Coforma to investigate and document needs and pain points of Sickle Cell Disease (SCD) patients and caregivers to inform a hackathon-style event to help develop solutions, and to bring visibility to these issues. The research wanted to focus on the Emergency Room visits and transition to adulthood experiences.

SCD is the most common inherited blood disorder. About 100,000 Americans currently live with SCD and the disease disproportionately affects African Americans. SCD is costly; expenditures for patients with SCD are estimated to be 6-11 times higher than non-SCD. Patients with SCD may encounter racial discrimination when seeking treatment for acute pain crises, including accusations of “drug seeking”, extended emergency department wait times, and difficulty filling prescriptions.

Approach

Research

I facilitated a total of 24 remote interviews with people with SCD and caregivers, plus an all-day in-person workshop with patients and subject matter experts in healthcare for SCD. Interviews centered around the quality of healthcare received through their transition from childhood to adulthood, their experiences with emergency care, experiences with insurance, and navigating work, career, and support.
Synthesis

As the lead on a team of 2 researchers, I categorized interview transcripts and found trends in how respondents described specific aspects of their experiences. We identified ER experiences, discrimination episodes, challenges with health insurance bureaucracy, lack of support, and other themes. The findings were synthesized into 6 opportunity areas, including ER and transition to adulthood journeys. Recommendations were added to each area based on ideas shared by research participants. It also included archetypes based on access to resources and level of interference SCD causes in one’s life.
SCD Healthathon

The findings topics helped frame the goals for a hackathon-style event where patients, technologists, providers, and many others participated to develop solutions focused on the various challenges of SCD patients. Winners in 3 categories were identified.