Case Study: Advancing Anti-Racism in Sickle Cell Disease Clinical Care
Charting a Path Toward Equitable Care for Sickle Cell Patients
Sickle Cell 101 is an organization committed to raising awareness and improving the lives of those affected by Sickle Cell Disease (SCD). With a mission to educate, advocate, and inspire, SC101 actively works to dismantle racial and healthcare disparities faced by individuals with SCD, particularly in underserved communities. The organization serves as a crucial support system for patients and families dealing with the challenges of SCD, which disproportionately affects Black and African American individuals.
Recognizing the need to address the human truths of systemic racism within healthcare, SC101 partnered with us at Sage Outcomes. As a research consultancy specializing in complex, sensitive research topics, we were honored to help SC101 explore how racial bias affects healthcare outcomes for SCD patients.
SC101 approached us with a critical objective: to uncover real-world experiences of racial bias, discrimination, and inadequate healthcare faced by individuals living with Sickle Cell Disease. They needed evidence-based insights to guide the development of educational and training programs aimed at reducing racial bias in healthcare.
Understanding the impact of systemic racism on healthcare for SCD patients is essential to creating a more equitable future. These insights provide a roadmap for healthcare providers, offering tangible steps they can take to improve care, empathy, and trust with their patients.
We began by mapping out a research journey that included virtual focus groups with SCD patients and caregivers. Our qualitative approach offered deep, exploratory insights into the lived experiences of participants navigating biased healthcare systems. The focus groups were designed to cover key pain points along the patient journey, from seeking care to ongoing treatment and transitions between pediatric and adult services.
This involved 4 separate focus group sessions:
• 2 sessions with individuals living with SCD
• 2 sessions with caregivers of SCD patients
This qualitative approach was chosen to provide deep, exploratory insights into the lived experiences of participants and how systemic racism manifests in various healthcare settings. Following the sessions, our team of researchers applied a thematic analysis to the videos and transcripts to identify common themes, pain points, and areas for improvement within healthcare systems.
Each session, which included anywhere from 1-6 participants, was designed to encourage open and honest dialogue in a virtual setting. Each participant was invited to participate from SC101’s research registry and database of consenting individuals who have agreed to participate in research opportunities about their journey with SCD.
The project was conducted over several months in 2024, beginning with research design and recruitment of participants. The focus group discussions were followed by a detailed analysis phase, where findings were compiled into a comprehensive report.
Now that we had deeper insights, it was time to convert data into dialogue that SC101 would use to further their mission. Sage Outcomes created a comprehensive report, compiling the insights into actionable recommendations. These recommendations were designed to serve as waypoints for SC101’s journey toward anti-racist healthcare advocacy. Deliverables included:
“Working with an organization like Sage Outcomes who truly understands the research world, and how to communicate with a patient community to gather very important insights has been very critical to the success of this project. The delivery of a report that included patient-friendly language and visuals that can help translate and communicate the key findings to our global audience was not only helpful but speaks to the strength of Sage Outcomes taking the time to know Sickle Cell 101, our audience and our communication approach to our audience.
The findings from this research continues to inform Sickle Cell 101 and the broader sickle cell research community on the various factors that should be prioritized to help improve the experiences of individuals living in sickle cell in various health care settings.
The findings are also being utilized in collaboration with our external partners to understand which specific barriers that were identified should be studied further to gather solution recommendations from the patient/caregiver community”
- Dr. Stephen Boateng
Sage Outcomes and SC101 worked in close collaboration throughout the project. SC101 played an active role in refining the discussion guide, ensuring that the research would be sensitive to the lived experiences of participants while still providing actionable insights. Regular check-ins ensured that SC101 remained deeply involved in the process.
Recruitment for this project posed its own challenges, particularly with caregivers, due to the highly sensitive nature of the topic and their busy schedules. We tackled these hurdles through flexible scheduling and virtual options, ensuring participants could share their stories at times that worked for them. We knew that creating a space where people felt safe to share deeply personal experiences was crucial, so empathy was woven into every step of our approach.
Sage Outcomes’ partnership with SC101 has illuminated a clearer path forward in the fight against racial bias in healthcare. The insights gathered through this research journey have empowered SC101 with the tools they need to create impactful educational and advocacy programs. By mapping out the challenges faced by SCD patients, Sage Outcomes has provided a guide for healthcare providers to navigate toward more equitable, empathetic care.
At Sage Outcomes, we don’t just deliver data—we provide a detailed map that helps our clients navigate toward better outcomes, particularly in uncharted territories like this.
Together, we’re charting a path toward anti-racist healthcare advocacy.
