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

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.

Information (core dataset) required by paramedics and ED staff to make clinical management decisions when attending a patient with a seizure is held in a number of
records in the Mersey and Cheshire e-Exchange: neurology clinic letters, primary care, ED ambulance. Harnessing the power of e-Xchange we will collate core data items and make them available to paramedics and ED.
e-Xchange uses international interoperability standards, including IHE (HL7, XDS, XDSi, XCA, FHIR) and is in line with the NHS strategies for interoperability in health and social care in the UK. The architecture also complies with the Connecting Care Settings and Improving Patient Experience Target Architecture. For legacy systems (non XDS/FHIR compliant) the e-Xchange includes a robust set of interfaces allowing for template based conversion of DICOM, HL7 messages and RESTful
API input into XDS documents. Complementary services for landing data sets into e-Xchange, include deduplication; data cleansing and conversion of structures and codes from other standards. The e-Xchange incorporates the Open Standard XCA standard, which enables spanning XDS Queries across multiple XDS communities. This federated approach ensures scalability and supplier lock in are not issues.