ISCF HDRUK DIH Sprint Exemplar: PED4PED - People with Epilepsy sharing Data for care with Paramedics and the Emergency Department

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Epilepsy is one of many chronic diseases (e.g. diabetes, asthma, mental health conditions) that can have acute exacerbations requiring urgent care. When an ambulance is called for someone that has had a seizure, paramedics do not have access to information that can inform acute management: diagnosis, usual seizure type, rescue medication protocol, place of safety or next of kin. As a result many patients are taken to the emergency department (ED) unnecessarily. Similarly, staff in the ED do not have access to this information, resulting in unnecessary admissions, investigations and potential treatment errors.Together with paramedics, patients, neurologists and ED representatives, we have identified a core dataset that should be available to paramedics and ED staff. Core data items are held in the Neurology EPR (diagnosis and management), primary care (prescribing), ED (previous attendances), ambulance (999 calls). Mersey and Cheshire STP have created a health information exchange (e-Xchange) linking the NHS partners, and along with Lancashire and South Cumbria STP has been awarded a second wave LHCRE, Share2Care. We will build on e-Xchange and Share2Care, working with Forcare, to make core data available to paramedics and ED staff, to improve outcomes for patients and the health service.