Evaluating the implementation of Electronic Palliative Care Co-ordination Systems (EPaCCS) and optimising future service provision for palliative and end-of-life care: a synopsis of the Optimal Care mixed-method study.

Background 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.

Aim To understand how Electronic Palliative Care Co-ordination Systems are currently being used in routine care and to guide the development of interventions to support their optimal implementation and maximise patient benefit.

Method 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.

Results 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.

Limitations 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.

Conclusions 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.

Future work Future research is required to develop approaches that seek to improve health professional engagement with digital approaches to advance care planning documentation and sharing. Furthermore, there is a need to develop and evaluate patient and carer access to digital advance care planning records. Lastly, the mid-range programme theory generated through this project requires continued refinement and use to evaluate Electronic Palliative Care Co-ordination Systems’ implementation.

Funding This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR129171.