Table 3. Summary of key findings and their implications.
What is already known on this topic? | • Digital approaches to facilitate the collection, recording and sharing of information to support palliative and end-of-life care delivery are being developed in countries including the UK, United States and Australia • Policy has supported the use of Electronic Palliative Care Coordination Systems (EPaCCS) in England since 2008 • It is not known which characteristics of EPaCCS are perceived as beneficial to care delivery or constraining to implementation |
What this study adds | • There is considerable variation in how EPaCCS have been implemented across England • Most EPaCCS do not allow sharing of information with care homes and social care staff, who often have central roles in end-of-life care • There is limited alignment between the intended impact of EPaCCS and the current methods being used to monitor and assess whether impact is being realised • Around one-third of people have an EPaCCS record at death and these are more commonly created for people with a diagnosis of cancer |
How this study might affect research, practice or policy | • The proportion of people dying with an EPaCCS record does not meet conservative population-based estimates of palliative need, despite policy ambitions for EPaCCS to support early identification of patients • Patient and caregiver perspectives on EPaCCS are lacking and should be incorporated into the development of systems to ensure they facilitate and support patient-centred care • Future successful implementation and evolution of EPaCCS is likely to need stronger stakeholder engagement and better interoperability |