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Using routine data to improve palliative and end of life care
  1. Joanna M Davies1,
  2. Wei Gao1,
  3. Katherine E Sleeman1,
  4. Katie Lindsey2,
  5. Fliss E Murtagh1,
  6. Joan M Teno3,
  7. Luc Deliens4,
  8. Bee Wee5,
  9. Irene J Higginson1 and
  10. Julia Verne6
  1. 1Kings College London, Cicely Saunders Institute, Department Palliative Care, Policy and Rehabilitation, London, UK
  2. 2National End of Life Care Intelligence Network, Public Health England, London, UK
  3. 3Division of Gerontology and Geriatric Medicine, Department of Medicine, Cambia Palliative Care Centre of Excellence, University of Washington, Seattle, Washington, USA
  4. 4End of Life Care Research Group, University of Brussels and Ghent University, Brussels, Belgium
  5. 5Department of Palliative Care, Experimental Medicine Division, University of Oxford, Oxford, UK
  6. 6Knowledge & Intelligence Team (South West), Public Health England, Bristol, UK
  1. Correspondence to Dr Wei Gao, King's College London, Cicely Saunders Institute, Palliative Care, Policy and Rehabilitation, Bessemer Road, London SE5 9PJ, UK; wei.gao{at}kcl.ac.uk

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.

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

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjspcare-2015-000994

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