Coordinate My Care: A clinical service for end-of-life care underpinned by an IT solution
We read with great interest the article 'There IT goes again'
finding many similarities with the lessons learnt from our ongoing work on
an Electronic Palliative Care Coordination System (EPCCS). This started
out as a Department of Health locality end-of-life care register hosted by
the Royal Marsden Hospital NHS foundation trust in partnership with our
community colleagues Merton and Sutton Primary Care Trust. The DOH
commissioned 8 pilots sites across the UK to test electronic registers
recommended in the DOH End-of-life Strategy.
The aim was to create an electronic record to handover information
between the many service providers involved in the care of end-of-life
patients. The big dream of course is for a national record viewable by all
legitimate providers to ensure end-of-life patients, regardless of
setting, are treated with dignity and respect through careful up to date
communication of their illness and most importantly their preference via
IT. However, the start for us, as Michael Cross advocates, was a small
pilot within Sutton and Merton. This has been clinician led. It uses a web
based password protected software package accessed via a secure broadband
connection to enable all providers from acute to community, incorporating
both in hours and out of hours providers (including the London Ambulance
service) to access information on end-of-life patients (those deemed to be
in the last year of life). It is patient centric. All patients are
The most important concept to address was that this IT was to aid
good clinical practice that should already be standard practice, not to
replace it. To enable all users to use the IT safely and effectively
training was essential in ensuring a minimum standard of communications
skills for those involved in end-of-life discussion with patients.
We launched quickly in August 2010, and since then have used the 'agile'
methods to which Cross refers, to continuously adapt the IT software based
on stakeholder feedback. We knew from the outset that the system would not
be immediately right but without the pilot we could never have envisaged
in advance all the intricate changes involved in adapting an IT system to
fit clinical practice. Neither could we anticipate the cultural shift
required to embrace the IT system. It has been essential that this was
A year on, the clinical community has embraced it and patients/carers
report satisfaction. The service is known as Coordinate My Care (CMC).
CMC is underpinned by the IT solution. CMC is now being rolled out across
London. After many an 'uneasy dialogue'1 between stakeholders, outcomes
from the pilot phase are encouraging. Seventy four percent of patients on
CMC die in their preferred place and only 12% die in hospital (National
data - 59% of patients in London die in hospital). We anticipate many more
crucial 'uneasy dialogues' to make this a Pan London success. However
'uneasy' these may be, the good of the patient is what drives this much
needed cultural shift forward.
Competing interests: No competing interests