Electronic Health Record Based Sickle Cell Disease Registry Facilitates Targeted Outreach to Improve Access to Care
Authors: Bliamptis John , Sekayan Tro , Sitapati Amy , Gopal Srila 
Published: December 2024

Background: Individuals with Sickle Cell Disease (SCD) face numerous barriers to accessing care. Data from California indicate significant challenges in access to care, with less than 50% of adults with SCD having seen a hematologist in a three-year period (Horiuchi et al., Blood Adv. 2022). Identifying SCD patients who are not under specialized care is challenging. Traditional clinic registries can be valuable, but often require labor-intensive manual data entry and often only capture information from patients already seen in SCD clinics (Miller et al., JAMIA Open 2020; Smith-Whitley et al., Blood 2023). To address these issues, we created an electronic health record (EHR) based registry to identify SCD patients seeking care across the University of California San Diego (UCSD) health system, including ambulatory, emergency room and inpatient environments, with the goal of improving access to preventive outpatient care.
Methods:We developed an EHR-based registry that included patients listed in the UCSD Active Patient Registry with either an active SCD diagnosis on their problem list or at least two SCD encounter diagnoses in the past three years. Patients with only SCD trait diagnosis were excluded. The registry report metrics included patient name, medical record number (MRN), age, sex, occupation, LACE index for readmission, and whether patients were prescribed hydroxyurea, voxelotor, crizanlizumab and controlled substances. The date of the patient's last SCD clinic visit was recorded if it occurred within the last five years. Data processing for the UCSD SCD Registry is performed monthly with additional updates as needed. We conducted a manual chart review of all patients who had not been seen at the UCSD SCD clinic in the past five years.
Results: We successfully built an automated registry of SCD patients seen across our health system. As of July 31, 2024, we identified 202 patients in the registry report. Of these patients, we could not confirm SCD in 8 patients based on data available in EHR and 7 patients only had sickle cell trait upon chart review. This yielded a 92.6% positive predictive value for identification of SCD using our automated registry. We identified 31 patients with confirmed SCD who had not been seen in the UCSD SCD clinic in the past five years. Of these, 11 did not live locally, 8 followed a hematologist outside our network and 7 were followed by pediatric hematology. We identified 5 patients who were yet to establish care with a hematologist.
The mean age of the 5 patients who had not been seen by a hematologist was 32 years; two were female. Hemoglobin (Hb) electrophoresis results showed 2 Hb SC, 1 Hb SS, and 1 HbS/Beta Thalassemia patients, while 1 patient was diagnosed by peripheral blood smear. Three of these 5 patients reported no current employment, and 3 reported no primary care physician.
Our outreach efforts focused on establishing care for patients who were not seen in our sickle cell clinic and lived locally and ensuring a smooth transition of care for adults followed by pediatric hematologists. Secondary uses of the registry included monitoring SCD clinical quality metrics, such as the percentage of patients with emergency department pain management plans, the percentage of patients receiving disease-modifying therapy, and the identification of patients with high LACE indices. The registry has also been used to create dashboards for inpatients with metrics pertaining to readmissions.
Conclusion: An EMR-based SCD registry proved to be an effective tool for identifying SCD patients across various care settings within our health system. The registry accurately included patients with SCD diagnoses and required no manual data entry. Using this registry, we were able to improve access to care, track quality metrics, establish longitudinal benchmarks, and enhance the overall quality of care for SCD patients.