Using routine data to improve palliative and end of life care

Joanna M. Davies, Wei Gao, Katherine E. Sleeman, Katie Lindsey, Fliss E. Murtagh, Joan M. Teno, Luc Deliens, Bee Wee, Irene J. Higginson, Julia Verne

    Research output: Contribution to journalArticlepeer-review

    28 Citations (Scopus)

    Abstract

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.

    Original languageEnglish
    Pages (from-to)257-262
    Number of pages6
    JournalBMJ Supportive and Palliative Care
    Volume6
    Issue number3
    DOIs
    Publication statusPublished - 1 Sep 2016

    Keywords

    • Administrative data
    • Death registration
    • Hospital episode statistics
    • Individual level health data
    • Palliative and end of life care
    • Routine data

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