“Prepared to Share?”: patient data sharing in complex conditions and at the end of life"
An evaluation of the Cambridgeshire & Peterborough EPaCCS (Electronic Palliative Care Coordination System), nested in broader research into England’s EPaCCS and professionals’, patients’ and carers’ perceptions of data sharing.
Patients approaching the end of their lives may: experience rapid changes in their condition and symptoms which are distressing for them and their carers; have clear preferences about their care priorities, with few opportunities to meet them other than ‘now’;
and are often cared for by a large number of health and social care professionals.
It is crucial to have systems for the effective sharing of up-to-date information for patients at the end of their lives. There is a drive to increase the relevant evidence base to enable the development of EPaCCS nationally.