Abstracts

Rationale: Epilepsy centres across Ireland are using an electronic patient record (EPR) to manage services and co-ordinate care. Over 7000 individuals with epilepsy have a longitudinal care record in the epilepsy EPR. In 2016, the Irish Health Service Executive (HSE) selected the national epilepsy EPR as a Lighthouse Project to demonstrate how eHealth technologies can help improve health care quality and safety. Entitled Providing Individualized Services and Care in Epilepsy (PISCES), the Lighthouse aims to progress precision, proactive and personalized (3P) medicine by using the epilepsy EPR to embed genomics, patient reported outcome measures (PROMS) and analytics into the clinical pathway. Methods: The national epilepsy EPR was enhanced with genomic medicine, patient portal and clinical analytics capabilities. Co-design teams of people with epilepsy, family members, healthcare practitioners, and software engineers worked to identify requirements for the 3P enhancements. They examined a) the collaborative clinician-genetic scientist interpretation of genomic sequence data in the context of disease predisposition and/or in predicting treatment response; b) opportunities for improving clinician–patient co-decision making partnership with an electronic patient portal; c) clinically relevant questions for gaining insights from longitudinal patient data. Based on these requirements, enhanced EPR functionality was developed and implemented. Results: The EPR genomics module facilitates multidisciplinary collaboration and plays an important role in translating actionable genetic variation information into clinical care; the epilepsy patient portal provides tools for reporting seizure severity and quality of life information together with prompts for clinical appointment preparation; the clinical analytics interface allows easy examination of large sets of patient data to discover insights about epilepsy risk and treatment patterns. Conclusions: PiSCES is a pioneering eHealth project aligned with internationally emerging precision/personalized medicine initiatives. Additionally, it is enabling the delivery of new models of health care that can result better patient/individual experience, population health and resource utilization. Funding: Funded by the Health Service Executive (HSE) and eHealth Ireland.