What is an information standard?

High quality health and social care services depend on good information. The right person having the right information at the right time can make all the difference to the quality and experience of care for an individual and their family and carers.

A national information standard describes a way of managing information to improve data quality and allows consistent recording of data. National information standards are important to the delivery of care, especially where information is to be shared.

The Standardisation Committee for Care Information (SCCI) approves information standards for the NHS and adult social care in England.

Why do we need a palliative and end of life information standard?

Staff from a variety of health and social care organisations are often involved in palliative and end of life care, and they all need information about the person and their care preferences and wishes. Without access to shared, consistent information there is real risk that a person's choices will not be taken into account.

Local organisations involved in end of life care often have different procedures in place for sharing information. In some areas, information is recorded and shared using electronic palliative care co-ordination systems (EPaCCS). EPaCCS support NHS England's objectives to increase the use of technology to help people manage their health and care and to use digital systems to support integration of care across different services.

The national information standard - Palliative Care Co-ordination: core content (SCCI1580) - specifies the full information that is needed to provide high-quality co-ordinated care, and provides structures and definitions to support effective holding and use of this data.

Implementation of the standard, which is primarily through EPaCCS, supports consistent, safe and reliable recording and communication of people's preferences and choices for palliative and end of life care. The standard supports health and social care agencies to deliver high quality co-ordinated care and enables more people to die in the place of their choosing and with their preferred care package.

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