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The Development of An Electronic, Palliative Care, Coordination System
  1. Claire Henry,
  2. Anita Hayes
  1. Claire Henry is Director and Anita Hayes is Deputy Director, National End of Life Care Programme, Leicester

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Effective coordination of care, sharing of information and partnership working are principles that define high-quality, end-of-life care. Technology is now being adapted to support these principles in order to improve, and put individual patients at the centre of, care at the end of life. The concept of an electronic, palliative care, coordination system (EPCCS), also known as a ‘locality register’, has been considered a potentially useful tool for improving end-of-life care in England for several years. The system is effectively a register, that holds key information about individuals nearing the end of life, thus helping the multidisciplinary team to coordinate care effectively. Information includes details of diagnosis and people’s preferences for end-of-life care (Table 1). Individual records are accessible by a wide range of professionals and agencies involved in the patient’s care throughout the 24-hour period.

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Table 1

End-of-life care locality register core data set

Those able to access information, when necessary, could ultimately include secondary care-based specialist consultants and colleagues, specialist palliative care teams, GPs, out-of-hours’ GP services, district nurses, Macmillan nurses, ambulance service paramedics and the local hospice. Such broad access, with the consent of individuals and appropriate safeguards, could provide the improved, safe, reliable coordination of care that is needed if individual preferences and wishes are to be met. It could also allow more people to die in the place of their choosing, with care and treatments shaped around their choices. EPCCSs will reduce the duplication of information-gathering, which is an inefficient use of clinicians’ time and can be stressful for patients. The systems developed so far have been centred on GP practices, often …

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