Using an Electronic Health Record-Based Registry to Improve Pediatric Sickle Cell Care

Within the new forms, we collected all data elements important to providing care to children with SCD. Several new items existed in other parts of the EHR and were automatically pulled into the forms, including laboratory results, medications and immunizations. Other new data elements required manual entry by providers based on EHR review, as they had previously not been documented, documented on an ad hoc basis, or found as free text within notes (eg, number of ED visits and hospitalizations in the past year). Initial completion of these forms took approximately 10 to 15 minutes per patient, as many of these data elements were not individually captured prior to this work; documentation for subsequent comprehensive visits required an additional 5 to 10 minutes per chart. Currently, the 3 pediatric hematologists regularly use the SCD forms for routine visits.

The registry management form was also created by the EHR design team. Although this form is separate from the SCD forms, it was readily accessible to the clinical team to quickly check whether patients should be included or excluded from the SCD registry. In this way, inactive patients could be removed and new patients could be included. This form was completed for all active pediatric patients with SCD as of February 2013 using data from a separately maintained clinical database. For patients who were new to the pediatric hematology practice between July 2012 and February 2013 (eg, infants born during this period, patients transferring care), we manually determined a registry start date in order to calculate accurate denominators for each measure. New patients were entered into the SCD registry by members of the care team on an ad hoc basis, and biannual searches of problem lists were planned to ensure the pediatric SCD registry was complete using the SCD-related ICD-9 codes 282.6, 282.41 and 282.4 to encompass all sickle hemoglobinopathies, including sickle cell thalassemia.

For this project, we were fortunate to have a well-established clinical data warehouse into which the medical center’s EHR data is copied nightly. In addition, the medical center already had multiple chronic disease registries and a framework for evaluating and sharing QI data. We were able to add SCD to this existing infrastructure, which was helpful since a secure and HIPAA-compliant location to post these patient-level reports had been previously identified.

We paid for 40 hours of technical staff time using grant funds to create reports using data collected in the EHR for patients who were actively in the SCD registry per the registry management form. Using these data, summary reports for our key SCD metrics were generated on both an annual and monthly basis. We tested and refined our key SCD metrics over a 4-month period to ensure that we had defined the numerators and denominators for each care process accurately. For example, children become eligible for influenza vaccine at 6 months of age, therefore, the eligible denominator would exclude infants < 6 months of age (Table 1). In addition, lists of patient names and phone numbers were automatically generated to identify those in need of care elements, facilitating both case management and continuous improvement for these measures, replacing the need for all external clinical databases.