A Workflow to Integrate Psychoeducational Data into the Electronic Medical Record and National Spina Bifida Registry

Introduction: Although learning challenges are common in spina bifida (SB), psychoeducational data are not systematically collected by most SB centers. Methods: We developed a workflow to obtain psychoeducational data directly from schools, thereby improving the integration of intelligence quotient (IQ) scores into the electronic medical records and the National Spina Bifida Patient Registry (NSBPR) at the Spina Bifida Center of Central New York. Outcome measures included the percentage of psychoeducational records integrated into the electronic medical record and the percentage of IQ scores entered into the NSBPR. Process measures included timestamp data to track the time required to retrieve records. Process control charts were used to measure our monthly record collection. Results: We obtained records for 29 of 57 consecutive school-aged patients who were seen at our SB center for more than 6 months (50% return rate). IQ scores were present in 18 of 29 records (62% yield). The percentage of IQ scores entered into the NSBPR increased from 5.4% to 29.7%. Most schools responded to record requests within 1 week. Record return rates dropped in September. Clerical support staff managed most of the workflow, spending an average of 14.5 minutes per patient. Conclusions: The workflow increased our ability to advocate for educational accommodations for our patients. We plan to share the workflow with other centers to facilitate the integration of cognitive data into the NSBPR, thereby improving our understanding of health and social outcomes for individuals with SB.