Improving electronic information sharing for palliative care patients

by Dr Amanda Pringle
Foundation Year 2 Doctor

Dr Pringle worked on this project with Dr Anne Finucane and Dr David Oxenham at the Marie Curie Hospice, Edinburgh.

Dr Amanda Pringle, Foundation Year 2 Doctor

Coordination of healthcare services used by patients with palliative needs is essential in providing patient-centred care. Sharing of good quality patient information is central to achieving this goal, especially when out of hours care is needed.

The Electronic Palliative Care Summary (ePCS) was introduced in Scotland in 2010. It was designed to contain up-to-date electronic information about the health status and preferences of patients receiving palliative care, irrespective of diagnosis.  This includes information on medications, health status and any prior discussions about preferences and treatment decisions.

With patient consent, a central system was updated twice daily from GP records to ensure that the latest patient information was available and could be accessed by healthcare professionals across Scotland, including NHS24, acute medical receiving units, paramedics and accident and emergency departments. A recent publication in BMJ Quality Improvement Reports showed that 70-75% of patients known to Lothian specialist palliative care services in 2012 and 2013 had electronic patient information available to out of hours services. This was up from 49% in 2008, prior to the introduction of the ePCS.1

Improving care nationally

In Lothian, to support the national roll out of ePCS, hospices such as the Marie Curie Hospice, Edinburgh have been working closely with local GPs to support the care of patients who would benefit from a palliative approach. This includes educational events such as GP education evenings at the hospice and a specialist palliative care nursing presence at GP practice palliative care review meetings.

Elsewhere in the UK, the Department of Health has developed a similar initiative called Electronic Palliative Care Coordination Systems (ePaCCS). A recent economic evaluation of ePaCCS suggests that there is a link between sharing patient information via electronic summaries and supporting patients to die at home when that is their wish. In addition to achieving patient-centred care, there is evidence that such information sharing generates significant cost savings.2

Moving forward

Scotland is now moving forward with electronic information sharing, building on the positive elements of ePCS, with the new electronic Key Information Summaries (eKIS).  The eKIS is a national system designed to support patients with long-term conditions or those who benefit from having plans about their future care in place.

End of life care needs are often preceded by an extensive period during which people have one or more long terms conditions. This new system facilitates the transition from well-coordinated care to palliative care as the need arises. The eKIS is now available in all GP practices across Scotland, and is set to further enhance coordination of care across care contexts, and ultimately seamless transition to palliative care to all those approaching end of life.

1. Pringle A, Finucane AM & Oxenham D.  Improving electronic information sharing for palliative care patients.  BMJ Quality Improvement Reports (2014); 3.. doi:10.1136/bmjquality.u201904.w1014
2. Economic evaluation of the electronic palliative care coordination system (EPaCCS) Early Implement Sites.  NHS Improving Quality (2013).  See: