570 - A Sickle Cell Disease Registry and Documentation Toolkit (Navigator) Designed to Improve Healthcare Quality

Poster Number: 570
Publication Number: 570.321

Neal DeLuna, New York City Health and Hospitals, New York, NY, United States; Kristina I. Emeghebo, Icahn School of Medicine at Mount Sinai, Glen Cove, NY, United States; Sana Usmani, NYC Health + Hospitals/ Kings County, Brooklyn, NY, United States; Kathrin Balaoura, NYC Health & Hospitals / Queens, Jamaica, NY, United States; Jason Mack, New York Medical College, New York, NY, United States; Marcy Stein-Albert, Icahn School of Medicine at Mount Sinai, Jamaica, NY, United States; Kenneth Rivlin, NYC Health+Hospitals/Jacobi, Bronx, NY, United States

Background: Sickle cell disease (SCD) is a complex chronic disease that causes anemia, pain and organ damage, leading to poor quality of life and early death. As a genetic disorder affecting predominantly people of color, no other disease better exemplifies systemic racism in healthcare. The low priority given to SCD compared to other chronic diseases results in poor patient experience, poor outcomes, and high economic and social costs. One strategy to address these inequities is implementing evidence-based interventions through quality improvement studies (QI).  However, QI is challenging. It requires resources, time, effort, leadership commitment, and a system to monitor effectiveness. Moreover, many resource-limited centers do not have the necessary electronic medical record (EMR) tools in place.

Objective: To develop a SCD registry and documentation toolkit/navigator within our EMR to monitor the effectiveness of quality improvement studies.

Design/Methods: We set up a team of pediatricians, ED providers and pediatric hematologists that worked with our EPIC Healthy Planet team to create a sickle cell disease registry and documentation toolkit/navigator.

Results: Our EPIC documentation toolkit was designed to:
1) Support and encourage quality care and complete documentation of key clinical information
2) Allow capturable clinical data to inform and facilitate quality improvement studies
3) Enhance communication between staff and community health workers
4) Destigmatize and encourage a more humanistic approach to care.
Included in the toolkit are:
1) history and assessment documentation smart forms (disease-modifying drugs, interval history, complication history, and health maintenance guidance)
2) smart set for labs, immunizations, referrals, follow-up and patient instructions
3) individualized pain plan including patients preferred profile
4) transition of care assessment and planning
5) patient educational materials
6) community health worker referral and documentation
The toolkit was launched together with an educational module and tip sheets and is available with customized navigator views for providers from pediatric emergency medicine, pediatric primary care, and pediatric hematology.Conclusion(s): To address inequities in SCD healthcare quality, we need to drive QI studies across all care centers. A critical first step is developing and sharing EMR toolkits that facilitate complete documentation and inform meaningful QI studies.