title: Using routine data to improve palliative and end of life care.
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.
authors.affiliation: Kings College London, Cicely Saunders Institute, Department Palliative Care, Policy and Rehabilitation, London, UK.
authors.forename: Joanna M
authors.initials: JM
authors.lastname: Davies
authors.affiliation: Kings College London, Cicely Saunders Institute, Department Palliative Care, Policy and Rehabilitation, London, UK.
authors.forename: Wei
authors.initials: W
authors.lastname: Gao
authors.affiliation: Kings College London, Cicely Saunders Institute, Department Palliative Care, Policy and Rehabilitation, London, UK.
authors.forename: Katherine E
authors.initials: KE
authors.lastname: Sleeman
authors.affiliation: National End of Life Care Intelligence Network, Public Health England, London, UK.
authors.forename: Katie
authors.initials: K
authors.lastname: Lindsey
authors.affiliation: Kings College London, Cicely Saunders Institute, Department Palliative Care, Policy and Rehabilitation, London, UK.
authors.forename: Fliss E
authors.initials: FE
authors.lastname: Murtagh
authors.affiliation: Division of Gerontology and Geriatric Medicine, Department of Medicine, Cambia Palliative Care Centre of Excellence, University of Washington, Seattle, Washington, USA.
authors.forename: Joan M
authors.initials: JM
authors.lastname: Teno
authors.affiliation: End of Life Care Research Group, University of Brussels and Ghent University, Brussels, Belgium.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.affiliation: Department of Palliative Care, Experimental Medicine Division, University of Oxford, Oxford, UK.
authors.forename: Bee
authors.initials: B
authors.lastname: Wee
authors.affiliation: Kings College London, Cicely Saunders Institute, Department Palliative Care, Policy and Rehabilitation, London, UK.
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
authors.affiliation: Knowledge & Intelligence Team (South West), Public Health England, Bristol, UK.
authors.forename: Julia
authors.initials: J
authors.lastname: Verne
mesh_terms: D003625:Data Collection; D006801:Humans; D033181:Information Dissemination; D010166:Palliative Care; D011787:Quality of Health Care; D013727:Terminal Care
keywords: Administrative data; Death registration; Hospital episode statistics; Individual level health data; Palliative and end of life care; Routine data