Pediatric Epilepsy Learning Health System (PELHS) collects administrative and clinical data entered at the point of care, aggregates and analyzes the data across multiple sites, then regularly reports findings back to sites to continuously improve care. Due to the large number of individuals with epilepsy, the heterogeneity of the epilepsies, and the diversity of advocacy groups for common and rare epilepsies, PELHS offers novel opportunities to the LHS design.
PELHS Areas of Improvement
Increase the percentage of epilepsy visits in which seizure frequency and severity is documented, as well as the percentage of patients who have met their goal for seizure reduction and seizure freedom.
Patient Activation and Quality of Life
Identify aspects of care and outcomes that most influence patient and caregiver sense of well-being and integrate these ideas seamlessly in all our work.
Screening and Treatment of Depression and Anxiety
Develop systems to identify and treat depression and anxiety for all patients in the network.
Patient Transition from Pediatric to Adult Care
Increase the number of people who receive evidence-based management of transition of care.
Counseling on Contraception and Pregnancy
Increase the percent of patients who receive appropriate counseling on contraception and pregnancy planning, ultimately decreasing the percentage of unplanned pregnancies in women with epilepsy and ensuring appropriate care in all pregnant women with epilepsy.
Prevent and terminate status epilepticus by deploying interventions that reduce the time from recognition of seizure to management.
The PELHS Community Engagement Core offers ways for patients and families to get involved as partners to advance care and support, participate on the center improvement teams and provide patient perspective for “co-production.” The Community Engagement Core is built on partnerships with local Epilepsy Foundation and Rare Epilepsy Network organizations for priority-setting, community-based support, wellness and self-management tools.