Palliative care clinical data set

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Guidance and definitions

Published: December 2016

In September 2014 and April 2016, the National End of Life Care Intelligence Network and NHS England published a two joint statements* about our plans to work together to explore the feasibility, options and costs of collecting individual-level adult palliative care data nationally. Since then, we have worked with an Expert Reference Group consisting of clinicians, researchers, data experts, commissioners and people with personal experience, and colleagues from 11 pilot sites to develop and test such a data set.  This project came to an end in June 2016.

The palliative care clinical data set presented in this document describes a set of data items that can be implemented voluntarily. It specifies the conditions for collecting this data in a way that enables systematic and standardised measurement, analysis and comparison of some of the key outcomes that matter most to people who receive specialist palliative care.

The report should be read alongside the Palliative care clinical data set Evaluation report.

Download the report Palliative care clinical data set Guidance and definitions

*More information about the joint statements can be found on the GOV.UK website.


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