Authors' objectives: Electronic Palliative Care Co-ordination Systems are central to end-of-life care policy despite critical gaps in the evidence base underpinning their use. It is unclear how Electronic Palliative Care Co-ordination Systems are being implemented across England and there is a lack of research to understand their use in routine care.

Authors' results and conclusions: Two-thirds of surveyed regions have Electronic Palliative Care Co-ordination Systems in place. Where present, there is limited use of Electronic Palliative Care Co-ordination Systems to document patients’ wishes and preferences. Low uptake may be explained by challenges experienced by health professionals. This includes limited interoperability across electronic health record systems in which Electronic Palliative Care Co-ordination Systems are typically nested, affecting information sharing across settings. Uncertainty was common across health and care professionals relating to what Electronic Palliative Care Co-ordination Systems are, who they are for and how organisations should monitor them. Mid-range programme theory was generated to guide the development and evaluation of Electronic Palliative Care Co-ordination Systems alongside recommendations for decision-makers and commissioners for palliative and end-of-life care in England. Electronic Palliative Care Co-ordination Systems are not working as intended for palliative and end-of-life care delivery in England. The application of the recommendations generated through this project can ensure consideration of the wider ecosystem in which Electronic Palliative Care Co-ordination Systems are being implemented, guiding system development that promotes health and care professional engagement and facilitates patient and carer access to Electronic Palliative Care Co-ordination Systems records.

Authors' methods: A mixed-method approach was adopted across the five-stage programme of research. Packages of work included: (1) a national online survey of end-of-life care leads at clinical commissioning groups in England; (2) an online survey of community and hospital-based health and care professionals in West Yorkshire and London; (3) semistructured interviews with a sample of survey respondents; (4) focus groups and interviews with patients with progressive chronic illnesses and carers and (5) regional and national Theory of Change workshops. The project was conducted across England with in-depth health and care professional engagement in two regions of England. This may limit the applicability of findings across England, although the project included large regions with multiple Electronic Palliative Care Coordination Systems operating at different levels of maturity.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR136205

Year Published: 2026

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/published-articles/HSDA7175

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/HSDA7175

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk