Challenges in implementing an Electronic Palliative Care Coordination System (EPaCCS): Lessons learned from a realist evaluation in the South West of England
SPCR Funded GP Career Progression Fellowship
Research Team
Lead Institution
ABSTRACT
Electronic Palliative Care Coordination Systems (EPaCCS) were developed to improve information-sharing and coordination for people approaching the end of life. Despite longstanding policy support, uptake across England remains highly variable, and their real-world impact is uncertain. This realist mixed-methods study evaluated the introduction of an EPaCCS within one clinical commissioning group (CCG) area, combining stakeholder focus groups, healthcare professional interviews, patient and carer interviews, and cross-sectional analysis of 1723 deaths across general practices. Our findings show that the EPaCCS did not embed into routine practice due to limited consultation during commissioning, inconsistent leadership, poor interoperability, unclear purpose, and minimal perceived added value for clinicians with access to comprehensive electronic health records. New national evidence highlights similar concerns around digital advance care planning (DACP), with persistent gaps in engagement, workflow alignment and system interoperability. Our refined programme theory indicates that successful EPaCCS implementation requires clear communication of purpose, multidisciplinary editing rights, shared digital infrastructure, stakeholder ownership, and ongoing evaluation. Lessons remain highly relevant as integrated care systems continue to expand DACP initiatives and adopt shared care records nationwide.
Information
Type
Journal article
Issue
Progress in Palliative Care, 1–11. Science and the Art of Caring
Publisher
Addresses
Lucy Pocock was funded by the National Institute for Health and Care Research (NIHR) School for Primary Care Research (SPCR) for a GP Career Progression Fellowship
