Advancing Sickle Cell Care: Highlights from the Second Joint SBA and PAC Meeting

GWAGWALADA, NIGERIA – On May 9, 2025, the Center of Excellence for Sickle Cell Disease Research and Training (CESRTA) at the University of Abuja hosted the Second Joint Meeting of the Sickle Cell Business Assembly (SBA) and the Patient Advisory Council (PAC). The event, held at the Faculty of Basic Clinical Sciences Auditorium, brought together over 90 participants and the CESRTA/PACTS team to align strategies for improving patient-centered sickle cell disease management in sub-Saharan Africa.

Fostering Teamwork and Community Engagement

The session opened with remarks from Dr. Isa and a welcome address by Prof. Obiageli Nnodu, the Project’s Principal Investigator. Both leaders emphasized that the core of the project’s success lies in teamwork, continuous learning, and robust community engagement.

A subsequent project overview led by Dr. Imam Abubakar detailed the achievements and challenges of the past quarter. This update focused heavily on critical operational areas, including:

• Patient follow-up procedures.

  
  

• Strengthening PAC engagement.

  
  

• Ongoing SBA assessments.

  
  

Interactive Workshops: Identifying Root Causes

A major highlight of the meeting was an interactive Root Cause Analysis workshop. Using specialized tools such as Fishbone Diagrams and the "5 Whys" method, participants engaged with real-case examples to identify systemic barriers to care and prioritize effective solutions.

Teams reported that they have already begun implementing action plans based on these prioritized solutions to streamline site operations.

Strengthening Data and Site Operations

The meeting also featured dedicated segments for site updates and data management:

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  Site Updates: Team leads from the SBA and PAC shared shared experiences regarding outreach efforts, Quality Improvement (QI) cycles, patient retention, and staff capacity building.

  
  
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  Measurement and Evaluation: Facilitated by Mr. Reuben Chianumba, this session focused on enhancing data capture and outcome evaluation to ensure the project’s impact is accurately measured through group feedback.

  
  

Looking Ahead

The high level of engagement was evidenced by the attendance of 35 out of 36 core team members. As the project moves into its next phase, the collaborative efforts of the SBA and PAC continue to serve as a vital bridge between clinical research and the patient community, ensuring that care remains truly patient-centered.