Using routine data to improve palliative and end of life care

TY - JOUR

T1 - Using routine data to improve palliative and end of life care

AU - Davies, Joanna M

AU - Gao, Wei

AU - Sleeman, Katherine E

AU - Lindsey, Katie

AU - Murtagh, Fliss E

AU - Teno, Joan M

AU - Deliens, Luc

AU - Wee, Bee

AU - Higginson, Irene J

AU - Verne, Julia

N1 - Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

PY - 2016/2/28

Y1 - 2016/2/28

N2 - 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.

AB - 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.

U2 - 10.1136/bmjspcare-2015-000994

DO - 10.1136/bmjspcare-2015-000994

M3 - Article

C2 - 26928173

SN - 2045-435X

VL - 6

SP - 257

EP - 262

JO - BMJ Supportive and Palliative Care

JF - BMJ Supportive and Palliative Care

IS - 3

ER -