Evaluation of Electronic Palliative Care Coordination Systems to support advance care planning for people living with life-threatening conditions (PREPARE): protocol for a multicentre observational study using routinely collected primary and secondary care data in England

Introduction Electronic Palliative Care Coordination Systems (EPaCCS) are electronic registers that aim to facilitate documentation and sharing of up-to-date information about patients’ end-of-life preferences and plans for care among different health services. They aim to improve patients’ experiences and outcomes and mitigate costs linked to undesired aggressive care. However, evidence on the equitable delivery of EPaCCS and the extent to which advance care planning (ACP) enhances end-of-life care remains sparse. This study aims to explore the effect of EPaCCS on healthcare outcomes, service utilisation, and costs. It will also estimate the association between social determinants of health and the content and use of EPaCCS.

Methods and analysis The PREPARE project is a retrospective observational cohort study conducted in two phases. We will analyse routinely collected data from three EPaCCS registers from London, Bradford and Leeds. The first phase will use descriptive analysis to describe the completeness of EPaCCS, the content of EPaCCS, and socio-demographic and clinical characteristics of individuals with EPaCCS, and will model the relationship between social determinants of health and completion of ACP components and the creation of EPaCCS. The second phase will use a natural experiment to compare quality indicators (place of death and hospital use) between individuals with EPaCCS and those without. The control groups will be identified through the Leeds decedent dataset and through linking the London EPaCCS register to an electronic record used in North West London. Also, we will quantify healthcare costs and outcomes.

Ethics and dissemination Research approval has been secured from the Health Research Authority (ref 24/LO/0194), London - South East Research Ethics Committee (ref 24/LO/0194) and Confidentiality Advisory Group (ref 24/CAG/0046). Dissemination of findings will occur through peer-reviewed publications, knowledge exchange events and collaborative efforts with patient and public involvement partners.