Table 1

EPaCCS and data availability

EPaCCS location	EPaCCS specific data
London EPaCCS	Coordinate My Care (CMC) served as the commissioned EPaCCS in London from 2010 to 2022, during which time it was also the largest UK EPaCCS. Covering 32 CCGs serving a population of 8.9 million, this EPaCCS dataset reflects a diverse urban patient population in terms of diagnosis, ethnicity and socioeconomic background. CMC records comprise data from various healthcare settings, including primary and secondary care, hospices and nursing homes. The dataset encompasses demographics, diagnoses, care preferences, the ceiling of treatment, resuscitation status, living circumstances, prognosis, performance status, date and place of death. Additionally, data is available regarding how often the record was accessed by urgent and non-urgent healthcare workers. In later years, patients had the option of starting a ‘MyCMC’ plan, whereby they use a patient portal to input some data themselves. The anticipated numbers for inclusion in the dataset are 140 000 records, of which 100 000 are for deceased patients.
North West London dataset	CMC records will be linked with the ‘Whole Systems Integrated Care’ (WSIC) dataset. WSIC is an electronic record used by healthcare professionals in North West London, which has a population of 2.4 million, to document essential information about patient care in the region (eight health boroughs, previously defined as CCGs).65 The WSIC dataset will include all individuals who have died in North West London within the timeframe spanning from 2010 to 2023. This linkage will allow the creation of two cohorts for comparison: individuals with EPaCCS (CMC) and those without EPaCCS. All decedents with a CMC record within the WSIC catchment area will be identified for inclusion within the linked dataset, while decedents without such records will form the control group. The WSIC dataset includes coded primary, secondary, acute, mental health, community health and social care data. This dataset also includes detailed information on social determinants of health, including ethnicity, and mortality data, including place of death. Cost data is also available as patient-level costs referring to the indicative spend calculated separately for each patient for each healthcare sector. This will be used in a cost minimisation analysis of EPaCCS, and it includes primary care level, acute, community, mental health and social care costs. Data linkage will be carried out by North West London Integrated Care Board and supported by existing data sharing framework.66 Figure 1 illustrates the data flow and linkage process. The linked dataset will be de-identified prior to being made available to the research team for the analysis
Leeds EPaCCS	The Leeds EPaCCS dataset represents a combined dataset from community palliative care providers that includes all primary care practices and two city hospice sites (St Gemma’s Hospice and Wheatfields Hospice) and limited secondary care data (eg, unplanned hospital admissions in the last 90 days of life). This dataset encompasses decedent patient records spanning from 2015 to 2023. It includes linked healthcare records data including primary and secondary care data, such as hospital admissions and diagnosis of severe mental illness or learning disability. The EPaCCS in Leeds covers the entirety of the former Leeds CCG serving a population of around 870 000 people through 94 general practitioners (GP) practices. Since 2019, approximately 50% of all people who die in Leeds have an EPaCCS.67 Data for all deaths across Leeds from 2021 to 2023 are also available, including decedents without EPaCCS. This will enable comparative analysis between patients with or without EPaCCS records. The anticipated number of records for inclusion is 15 500 decedent records.
Bradford EPaCCS	The Bradford EPaCCS dataset is collected and shared among healthcare providers (including both NHS and voluntary sector providers) through electronic health records. This dataset includes decedent patient records spanning from 2015 to 2023. This EPaCCS is commissioned across the Bradford and Airedale districts, serving a combined population of 585 000 with approximately 4800 deaths per year. Approximately 48% of all deaths in this area had an EPaCCS record in 2018/19.68 The anticipated number of records for inclusion is 17 000 decedent records.