Electronic Palliative Care Coordination Systems (EPaCCS): what works for whom and in what circumstances? A realist evaluation

Problem

EPaCCS aim to provide a shared record for Health Care Professionals (HCPs), summarising information about patients’ preferences and plans for care. They are in use across the UK, although empirical evidence into their effectiveness is poor. Previous studies have suggested that primary care staff perceive EPaCCS as a potential burden due to an increased workload, without offering a benefit to them.

Aims:

1. Describe the socio-demographic characteristics of patients who die with an EPaCCS record and their cause and place of death, and compare these with patients who die without an EPaCCS record.

2. Explore the impact of an EPaCCS on the experience of receiving end of life care for patients and carers, and understand HCPs' views and experiences of using an EPaCCS.

Approach

This is a mixed-methods study to explore the impact of an EPaCCS on end of life care, as provided by Bristol, North Somerset and South Gloucestershire (BNSSG) Clinical Commissioning Group (CCG) in England. The study was conducted in five phases: (1) development of the initial programme theory; (2) focus group with CCG stakeholder board; (3) individual interviews with twenty-one HCPs, including in and out of hours GPs, four patients, one current, and seven bereaved, carers; (4) retrospective cohort study of routinely collected data on EPaCCS usage and (5) data analysis and synthesis of study findings.

This study will draw on a realist evaluation approach. A randomised, experimental study design is not possible as the implementation of EPaCCS has been strongly advocated and promoted by NHS England, with 83% of CCGs in England reported to have an operational EPaCCS, or be in the planning stages, by 2013. BNSSG CCG had recently operationalised an EPaCCS at the time of study design.

Findings

Uptake and engagement with the EPaCCS was variable and dependent on engaged leadership. Only 18% of the study sample died with an EPaCCS record and people who died of cancer were more likely to have an EPaCCS record (27%) than those who died of a non-cancer cause (15%). The EPaCCS concept was valued by all HCPs, although it didn’t add extra value to the information that GPs can already access. The lack of appropriate technology was a barrier to usage. Patients and carers were not aware of the EPaCCS, but were positive about HCPs sharing information.

Consequences

This study provides valuable insights into the implementation of EPaCCS. Getting the technology right matters and it is vital that all HCPs can both access and update the information held within the EPaCCS. To support clinical decision-making the information in the EPaCCS needs to be dynamic and reliable.