Background

In September 2014, Public Health England (PHE) and NHS England published a joint statement to set out plans for improving palliative care data.

PHE has worked closely with NHS England, the Health & Social Care Information Centre (HSCIC), the National Council for Palliative Care, Hospice UK and the Cicely Saunders Institute to develop this data set.

A national steering group was established in 2014 to explore the feasibility, options and costs of developing a new national data collection. This group included representation from PHE, NHS England, HSCIC and Monitor and is chaired by the National Clinical Director for End of Life Care.

An expert reference group was also established to support development of the data set. This group has representation from lay members, statutory and voluntary sector and includes the Association for Palliative Medicine of Great Britain and Ireland, the National Palliative Care Nurse Consultant Group, the Royal College of Physicians, the National Council for Palliative Care, Hospice UK, Cicely Saunders Institute, Marie Curie Cancer Care and Macmillan Cancer Support.

Consultation was carried with experts in specialist palliative care and data collection in England and in the USA and Australia. Ten regional events were held across England to inform about the plans and to invite feedback. In March PHE undertook a national online consultation to seek views of those who have an interest in end of life care. The consultation report is available here.

In April 2015 we recruited 11 pilot sites to test the data collection. These include hospices and specialist palliative care services in acute and community settings. The pilot closed at the end of March 2016. An evaluation of the pilot will be published later in 2016.

In August 2015 we sought the view of patients, carers and the public on the data set, the results of which will be published alongside the pilot evaluation report.

 

Palliative Care Clinical Data Set

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