A Health Equity Echo for Providers of Children and Adults with Sickle Cell Disease

Introduction: Studies have shown that children and adults with sickle cell disease (SCD) are often stigmatized and racialized due to implicit bias demonstrated by healthcare providers during interactions with patients and families. Biases can result in inequities in healthcare delivery that affect health related quality of life and clinical outcomes. The Sickle Treatment and Outcomes Research in the Midwest (STORM) network developed a health equity training curriculum to be delivered as a continuing education course using the Project ECHO ® virtual telementoring framework. A pilot cohort to assess feasibility, acceptability and potential impact on provider bias is currently being conducted.

Methods: The Health Equity ECHO was launched in March 2022 and will conclude in September 2022. The curriculum was designed to address foundations of racial justice, race, racism, whiteness, along with application and implementation strategies for individual and institutional change. Consistent with the Project ECHO © framework, the Health Equity ECHO consists of hour-long monthly sessions, including a didactic presentation and interactive group discussion typically including a case presentation, delivered via live Zoom sessions. In addition, the Canvas Learning Management System is used to supplement the ECHO and create an online course. Canvas contains supplemental materials, presentation recordings, and discussion post prompts for self-reflection by participants. Additionally, participants can opt to participate in monthly small group virtual "debrief" discussions for deeper reflection about session topics.

Results: Thirty-two participants from 9 states have participated in at least one ECHO session. The majority of participants report that they are under the age of 40 (n=12); ages 40-49 (n=6), 50-59 (n=9); and over the age of 60 (n=5). Participants predominantly self-identified as female (73%) or male (18%), with the remaining not responding (9%). Nearly half of participants reported their racial identity white, with 30% African-American; 5% Asian, 5% multi-racial and the remaining preferring not to answer (11%). Participant primary practice settings include pediatric sickle cell clinics (n=10); adult sickle cell clinics (n=3), federally qualified health centers (n=2), and other settings including local health departments and hospital emergency department. Multidisciplinary roles of participants include physicians, nurse practitioner, registered nurses, pharmacists, psychologists, newborn screening coordinators, and patient advocates. Collectively, participants provide care to over 1,000 pediatric and adult patients with SCD with the majority of direct care providers reporting they have worked with patients with SCD for 0-5 years. At pre-registration, 25% of participants felt the impact of racism on their ability to deliver quality care was high or very-high; 64% of participants reported feeling as effective at caring for white patients as they are at caring for patients at color; and 62% of participants felt well-equipped to care for patients of color.

Initial qualitative data from chat and online discussion posts indicate the Health Equity ECHO is beneficial to participants. Final evaluation data will be available in September 2022 and will be presented.

Conclusions: Preliminary feasibility and acceptability data, including qualitative data, from the STORM Health Equity ECHO pilot cohort show this may be a promising training for healthcare providers to raise self-awareness about implicit bias, build a safe community of practice for difficult discussions about racism, and to leverage tools to address health inequities within healthcare settings. Lessons learned during the first cohort will inform a future cohort in 2023.

Crosby:Forma Therapeutics: Consultancy, Honoraria, Other: Grant reviews; Global Blood Therapeutics: Honoraria.