Recommendations Emerging From the Program Work Clinical Care 1. Leverage existing registry information and improve current EHR systems (e.g., EHR templates; order sets; tracking and feedback mechanisms). • Data from these sources can be used to improve the care of patients with SCD as well as provide a national perspective of the patient population. • The use of available registries, EHR templates, order sets, etc. should continue. The experience through the Program showed that there were varied outcomes in the use of these types of resources, but continuing work to improve all is recommended. 2. Monitor key processes and outcomes with a focus on achieving the high-quality, comprehensive care recommended by national guidelines, including screening and preventive interventions (e.g., penicillin prophylaxis, immunizations, HU use, transfusion, TCD screening) as well as ED visits, hospitalizations, and readmissions. • Consideration should be given to stratifying key process and outcome measures by race/ethnicity and other relevant social determinants of health (e.g., income level, zip code, language) to assess for within and across group disparities. • RCCs followed national guidelines; clinics that had buy-in and infrastructure to support use of these guidelines are models to replicate. • Data tracking the use of select national guidelines was completed and are included in this report. This type of tracking requires significant staffing and resources. Disaggregation of data is important to better understand details of how care is being provided but was not in the scope of this program. 3. Expand the use of evidence-based care plans and other care coordination tools for individuals with SCD. • Measure this process, as it will inform how to best use and optimize plans. Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
• Emergency care and related pain management protocols and strategies were not core areas of measurement under this funding. However, several sites have prioritized these topics. Materials can be found in the Compendium of Tools and Resources and Model Protocol sections. 4. Provide education regarding use of therapies (i.e., HU, transfusion, other disease-modifying therapies) for individuals living with SCD and their families. • Using evidence-based shared decision-making tools that support discussions of benefits and risks, as well as patient preferences and strategies for self-management support, is beneficial. • Clinics and CBOs completed patient education across a broad spectrum of topics. Several are included in the Compendium of Tools section. 5. Provide supports needed so that healthcare systems are equipped to provide robust care coordination for both psychosocial and medical needs of individuals living with SCD and their families. • Healthcare teams for both the pediatric and adult populations should include social workers, mental health specialists, community health workers, occupational therapists, and similar providers to address needs, reduce fragmented care, and ensure bias is minimized and health equity maximized. • ECHO sessions could be dedicated to each of these specialty areas for greater reach. • The staff time needed to develop protocols and oversee implementation must be considered. • Psychosocial areas are longstanding needs for patients with SCD and work through the Program has again confirmed this. But the critical role of mental health emerged as an under-supported and urgent priority, especially during the pandemic. • The time needed to fully develop and implement a thoughtful and cohesive plan for all healthcare systems was not in the scope of this program but should continue to be priority moving forward.
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