NICHQ Webinar

Connecting Providers and Community Based Organizations to Improve SCD Appointment Attendance

September 28, 2021 from 3:00 PM - 4:00 PM (EDT)

Sickle Cell Disease (SCD) affects approximately 100,000 Americans causing acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body. That makes consistent and regular appointments vital for people living with SCD.

People living with SCD and their families and family caregivers miss critical healthcare appointments for a variety of reasons. According to a 2019 national study, a majority of patients reported missing a clinic appointment in the previous 12 months. One key strategy NICHQ has learned from patients, caregivers, and providers in interviews and webinars is that addressing the barriers to appointment attendance works better when providers partner with community-based organizations to communicate with patients.

This webinar – the third in its series – focuses on developing a strong relationship between SCD clinics and the CBOs supporting people living with SCD.  Forging shared provider/CBO strategies provides improved messages and supports to patients and families who may be struggling with barriers that health care systems don’t realize.

Webinar Objectives:

  • Identify three of the common reasons for missed appointments for people living with SCD and their families
  • Learn how providers and SCD CBOs can work together to address appointment challenges for people living with SCD
  • Identify resources to forge or strengthen the relationship between CBO and the clinic
  • Learn resources for providers, CBOs, patients, and caregivers to improve conversations to resolve appointment barriers.

Moderator: Judith Gooding, Project Director for Disseminating Results: Missed Sickle Cell Disease Clinic Appointments and the Health Belief Model


  • TaLana Hughes, MPH, Executive Director of the Sickle Cell Disease Association of Illinois

  • Suzette Oyeku, MD, MPH, Professor of Pediatrics at the Albert Einstein College of Medicine

  • Carolyn Rowley, Ph.D., Clinical Psychologist, Certified Nutritionist, Executive Director at Cayenne Wellness Center | Sickle Cell Education, Support, and Advocacy