Additional Areas of RCC Focus on Evidence-Based Care Much of the work described in this report focuses on the clinical areas of HU, immunizations, and TCD. However, the RCCs conducted important work in several other areas covered by NHLBI report, including – and especially – management of pain crises. Pain Management Pain crises are a hallmark of SCD and the NHLBI 2014 Evidence-Based Management of Sickle Cell Disease report has several robust clinical recommendations regarding pain management (National Heart Lung and Blood Institute, 2014). People with SCD who present in pain to emergency departments (EDs) and other clinical settings need immediate attention. Because of the particular importance of addressing and improving this area of care, the Program has developed a recommendation about ED care and this report provides a deeper look into activities of the RCCs and the challenges of managing pain crises, especially given the opioid epidemic. Impact of Bias on People with SCD All RCCs discussed the impact that systemic bias has on their patients. At the patient level, there is inequitable access to care, unequal attention to treatment development compared to other types of conditions, and significant bias – especially as it relates to obtaining timely and appropriate pain care. As noted by the National Academies of Science, Engineering, and Medicine SCD (National Academies of Sciences Engineering and Medicine, 2020), when discussing SCD care and the people with SCD, it is essential to point out that stigma, implicit bias, and racism are key societal factors that contribute to the burden of disease. Pain management of SCD is impacted by these factors, especially those that exist in patient and provider interaction. Addressing and decreasing the impact of these factors is essential to increase provider comfort and overall improvement in SCD care when treating this population. RCC activities to address this issue included: conducting hospital-wide implicit bias training; discussing cases that demonstrated unwarranted differences in care; and addressing the issue directly by educating providers and confronting bias. Appendix A contains examples of RCC activities related to addressing bias.
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
Healthcare Domain 2 Use telementoring, telemedicine, and other provider support strategies to increase the number of providers administering evidence-based SCD care
Domain 2 Highlights • Leveraging the Program infrastructure and support built through state plans, teaching opportunities, and provider-to-provider communication, RCCs expanded the knowledge base and comfort level of providers across the U.S. with this program, improving access to care for people living with SCD. • Engaging and training a broad range of providers, both specialist and non-specialist (e.g., primary care and hematology/oncology physicians, nurse practitioners, and physician assistants) using Project ECHO® and other education opportunities to increase knowledge among providers. Topics ranged from disease-modifying therapies, psychosocial issues, insurance barriers and practice guidelines. This resulted in more than 3,700 attendees of telementoring, which strengthened care locally and nationally. • Using telementoring quickly addressed emerging information and provider education needs caused by the challenges of the COVID-19 pandemic.
2021 CONGRESSIONAL REPORT
11
