Palliative Care Clinical Data Set: Why a new national data collection?

Data and information underpins health and social care and is crucial to professionals, planners, commissioners, researchers and policy makers to:

  • support delivery of quality and cost-effective services
  • improve services for people at the end of their lives and their families

End of life care is provided across sectors including the voluntary and private sectors, NHS, social care, primary and community care. Estimates indicate that around 171,000 people currently receive specialist palliative care and that around 92,000 people per year have unmet palliative needs.

There is a recognition in the specialist palliative care sector that data needs to be more robust and comprehensive. Although providers may be recording and using palliative care patient data, there is no current mechanism for bringing activity data together across sectors to provide a full picture of the care provided to patients. We therefore have significant gaps in our understanding of end of life care provision and a lack of clarity about the quality of end of life care.

What is known is that there are around 400 organisations in England providing specialist palliative care for adults, the large majority of which are not in the NHS sector. The National Council for Palliative Care (NCPC) has been collecting aggregated data from specialist palliative care providers since 1996 via an annual survey. This is limited but has provided some insight into services provided in the sector. We also do not have accurate information on the proportion of people who are dying who have access to specialist palliative care or patterns of care across hospital and community services. We do not know the impact and outcomes of the care provided nor are we able to compare the costs of different models of care.

Public Health England and NHS England, together with our partners, are working towards development of a new national data collection from hospices and specialist palliative care services. We will consult with stakeholders and the public, test collection of a data set and assess the benefits, feasibility, costs and options for a national data collection to inform the decision on whether this will be rolled out nationally.

The proposed data collection will include demographic details, activity information and patient outcomes data to improve the quality of care. This data will also support the requirements of a palliative care currency. Our vision is for a single data set, that will be part of routine clinical data collection and capture activity and outcomes. Our goal is to minimise the burden of data collection by identifying the key data that will be the most useful by incorporating data held in routine clinical and care records wherever possible.

The new data set has the potential to make a real difference to end of life care, providing clear information on the amount and quality of care and filling the gaps in available data. It will also make it possible to link with other national data sets to give a more complete picture of care and to measure its impact.

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