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Our practice was involved in the early pilots of the electronic palliative care coordination system (EPaCCS); this followed the publication of the end of life care strategy by the Department of Health in 2008.1 The initial concern was interoperability; issues identified then remain 9 years later.
England is divided into four regional teams, each with multiple clinical commissioning groups (CCGs):
North 66 CCGs cover a population of 15.9 million according to National Health Service (NHS) digital data.2
Midlands and East 61 CCGs for 17 million people.
London 32 CCGs for 9 million people.
South 50 CCGs for 14.4 million.
We used a freedom of information request to all other CCGs with four questions:
Is an EPaCCS in place? For how long?
How does it work?
What is the coverage?
Have interoperability issues been addressed?
The process took longer than expected. Two CCGs did not reply after 3 months and a further two that they had no information. Among the others, extent of replies varied. To clarify, we accessed webpages related to the different projects. There was considerable variation between London (84% use) and the other extreme Midlands and East (37%). Nationally, 29% of CCGs have no EPaCCS. Twelve per cent plan or pilot an EPaCCS; two CCGs have opted to decommission it due to poor usage from interoperability issues. Details are summarised in table 1.
London opted for a single solution, used by most CCGs (but they joined at different stages) with five CCGs still without it. The ‘coordinate my care’ (CMC) is an urgent care plan and not just an EPaCCS. This functionality is embedded, at least the ability to add ‘Do not attempt cardiopulmonary resuscitation.’ We could not see direction in training documents for other information like preferred place of care and death. In the other three regions, there is no common approach but a mix. Some work well as all organisations use the same software (adastra,3 EMIS web,4 systmOne5) or similar local web-based approaches (including private providers like Blackpear6 and Graphnet7). Others still have interoperability issues with NHS provided solutions:
Medical interoperability gateway (MIG) based, some with local integration software. The problem is information is unstructured and limited. There is progress towards an updated version named MIG2.
Summary care record (SCR) based. The problem is data upload can be done only by a registered general practice orgnization and can be soon outdated.
Sharing information, preventing unnecessary hospital admissions, allowing patients to die at their preferred place, can lead to a ‘good death’.1 EPaCCS were created for that purpose, but after 9 years there are many gaps.
There was an extensive assessment of EPaCCS by CCGs.8 We have now updated this, with more focus on interoperability. Advance care planning in primary care is important9 and we need to share information but we are far from the ideal. EPaCCS should be a pillar of the management of the terminally ill. Without clear interoperability, dependence on manual input of data and partial use, it is at high risk of failure. This will make community palliative care more crisis focused simply because of poor communication. Now that multiple approaches have been piloted and implemented, it is time for a common EPaCCS approach where data flows automatically and in real time.
Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests The author was involved in the original project to role out EPaCCS in Leeds.
Provenance and peer review Not commissioned; internally peer reviewed.
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