An Electronic Palliative Care Co-ordination System (EPaCCS) is an electronic summary of up-to-date patient information, which includes patient preferences about end of life care.  Easy access to this information for health professionals providing palliative care can support decision-making and care delivery that is informed by patient preferences.  EPaCCS has recently been rolled out to GP practices, community nurses and hospice-based community specialist palliative care teams across Leeds.  This project will evaluate the use of EPaCCS across Leeds and capture health professional and patient perspectives on the EPaCCS approach.

Aim and objectives

We developed and applied an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services across Leeds.


A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focussing on clinical process.  Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across Leeds.  All deaths (n=1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. 


The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems.  The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days).  Where preferred and actual place of death was documented, these were matching for 75% of patients.  Anomalies were identified in coding used during data entry on electronic palliative care coordination systems.

EPaCCS results image






This project reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring.  Questions arose about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation.  In particular, future evaluations should consider work processes of health professionals using electronic palliative care coordination systems.

EPaCCS forms part of a broader commitment to continual enhancement of end of life care services in Leeds.  The evaluation was conducted to provide findings that can help to shape thinking on wider improvement initiatives for end of life care services in Leeds.  Our recommendations have been used to guide revisions to the end of life care strategy for Leeds, direct changes to EPaCCS use in clinical practice, and informed routine monitoring and audit of EPaCCS performance. 


Allsop MJ, Kite S, McDermott S, Penn N, Millaires-Martin P, Bennett MI, Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation.  Palliative Medicine 2016 DOI: https://doi.org/10.1177/0269216316663881

Allsop MJ, Bennett MI.  EPaCCS and the need for research.  BMJ Supportive and Palliative Care 2016.  Published Online First: 16 September 2016.  doi: 10.1136/bmjspcare-2015-001059

Partners and Collaborators

University of Leeds and Yorkshire and Humber Commissioning Support (YHCS)

Funding Agency

This project is funded by the Leeds Clinical Commissioning Groups 

Grant Value £20,000
Project Period  6 months 

Further information

For further information contact Matthew Allsop