Title: Electronic Palliative Care Co-ordination Systems (EPaCCS) in end of life care: evaluating their implementation and optimising future service provision
Funder: Department of Health and Social Care

Abstract: PROJECT BACKGROUND_x000D_ _x000D_ A long-term disease or physical ailment which is worsening, growing or spreading is referred to as a ‘progressive chronic illness’. Patients with a progressive chronic illness should be able to discuss their care preferences with health professionals at any point in their illness. These preferences should then be documented so that they are taken into account in the care provided for people approaching the end-of-life. Care preferences might include: being able to receive care in a chosen place (e.g. at home), the type and level of medication prescribed to manage pain, the extent of any necessary visits to a hospital and a patient’s important contacts. _x000D_ _x000D_ Electronic Palliative Care Coordination Systems (EPaCCS) are electronic systems designed to hold this important information and be part of a patient’s electronic medical record. Any health professionals involved in a patient’s direct care will be able to view and update EPaCCS following discussion and agreement with them. This is particularly important for patients approaching the end-of-life, as multiple community-based and hospital-based teams may be involved in the delivery of their care._x000D_ _x000D_ THE PROBLEM_x000D_ _x000D_ Despite the availability of EPaCCS, there has been a distinct lack of research to determine how they are really being used. It is not clear what problems health professionals face in using these systems, what the views of patients and carers are towards them, and whether using these systems actually benefits patients._x000D_ _x000D_ We do know that only a limited number of patients are having their preferences recorded with EPaCCS, and for many patients, this is only occurring in the last few weeks of life. NHS England initially planned for the national rollout of EPaCCS by 2020, but this deadline has been extended indefinitely until they have a clearer understanding of the best approaches to EPaCCS implementation._x000D_ _x000D_ AIM OF PROJECT_x000D_ _x000D_ This project, in collaboration with NHS England and Public Health England, aims to develop that clearer understanding by:_x000D_ _x000D_ a) identifying where and how EPaCCS are currently being used in routine care._x000D_ b) making suggestions as to how these systems can best be integrated within existing/modified ways of working, in order to maximise patient benefit._x000D_ _x000D_ PROJECT APPROACH_x000D_ _x000D_ To achieve these aims we will:_x000D_ _x000D_ 1. Find out more about where and how EPaCCS are being used across England._x000D_ _x000D_ 2. Explore how health professionals in West Yorkshire and London are currently using EPaCCS_x000D_ _x000D_ 3. Identify any barriers or difficulties in using the systems, and what impact these have on patient care _x000D_ _x000D_ 4. Gather patient and carer views on EPaCCS, and their expectations and/or experience of the benefits provided to them_x000D_ _x000D_ 5. Use the findings from all of the above to make suggestions as to how best to:_x000D_ i. use EPaCCS within existing or modified ways of working_x000D_ ii. monitor/evaluate their use and the real-world benefits derived from that use_x000D_ iii. identify if and how these systems need to be improved to ensure national adoption_x000D_ iv. explore how EPaCCS can be developed to increase patient access to their own care record._x000D_ _x000D_ Towards the end of the project, we will hold workshops with service commissioners, health professionals, patients and caregivers to reflect on findings throughout the project. The findings from these workshops will help to guide the best approaches to using EPaCCS as part of the NHS._x000D_ _x000D_ DISSEMINATION_x000D_ _x000D_ NHS England and Public Health England have agreed to collaborate with the research team on this project. This will ensure that the findings, including patient and carer contributions, inform the planned national rollout of EPaCCS and any future development of these systems. The results will be published in suitable journals, presented at conferences, and through public engagement events. _x000D_ _x000D_ PUBLIC AND PATIENT INVOLVEMENT_x000D_ _x000D_ Public and Patient Involvement has been incorporated within the project from the beginning. A small, highly experienced team of patients, who have all been through the trauma of a difficult diagnosis, are and will be continuously involved throughout the lifetime of this project.

Lay abstract: BACKGROUND_x000D_ _x000D_ Electronic Palliative Care Co-ordination Systems (EPaCCS) are central to end of life care Policy. However, there are critical gaps in the evidence base underpinning their use. It is not clear how EPaCCS are currently being implemented across England, and there has been a distinct lack of research on how they are being used in routine care._x000D_ _x000D_ AIM: To understand how EPaCCS are currently being used in routine care, guide the development of interventions to support their optimal implementation, and maximise the benefit to patients._x000D_ _x000D_ RESEARCH OBJECTIVES_x000D_ _x000D_ 1. To examine how EPaCCS are being implemented nationally, their intended impact, cost, and the existing processes for monitoring their uptake and use._x000D_ _x000D_ 2. To examine the perceptions of healthcare professionals, both in the community and hospital-based, on the value and impact of EPaCCS in advance care planning (ACP) in the management of patients with_x000D_ progressive chronic illnesses._x000D_ _x000D_ 3. To explore factors influencing the uptake and use of EPaCCS to support ACP in routine clinical practice._x000D_ _x000D_ 4. To explore the perspectives of patients with progressive illness, and their caregivers, on EPaCCS, their anticipated impact, and expectations for their future development._x000D_ _x000D_ 5. To synthesise findings to form a conceptual map underpinning EPaCCS, detailing optimal implementation, linkages with the intended outcomes, monitoring, methods of evaluation, and_x000D_ identification of future intervention development to support user engagement._x000D_ _x000D_ METHODS_x000D_ _x000D_ We combine international expertise in palliative care research and intervention development, to support improvements in palliative and end of life care. In partnership with NHS England and Public_x000D_ Health England, using a mixed method approach, our study will involve five related work packages:_x000D_ _x000D_ WP1: Online questionnaire survey of end of life care leads at clinical commissioning groups in England. Building on a previous survey by the team and working jointly with Public Health England, we will identify_x000D_ models of EPaCCS implementation, barriers and facilitators experienced, and the extent of information sharing via EPaCCS._x000D_ _x000D_ WP2: Online survey of community and hospital-based healthcare professionals in West Yorkshire and London to identify the perceived value and impact of EPaCCS on ACP and the management of patients_x000D_ with progressive chronic illnesses, identifying how EPaCCS are used in routine care delivery and how intended outcomes from EPaCCS use are understood._x000D_ _x000D_ WP3: Qualitative interviews with a sample of survey respondents (WP2) to understand the use of EPaCCS in routine care, determinants of when and how they are used, and barriers and facilitators to uptake._x000D_ _x000D_ WP4: Workshops with patients with progressive chronic illnesses, and caregivers, to explore their perspectives on EPaCCS, and any anticipated positive and negative impact from their use, alongside_x000D_ identifying expectations around access to their own EPaCCS record._x000D_ _x000D_ WP5: Regional and national Theory of Change workshops, presenting and validating a synthesis of findings from WP1 – 4 in a conceptual map. We will agree the ultimate intended impact from EPaCCS,_x000D_ determine preconditions, and identify ways of enhancing or developing new interventions to optimise their implementation._x000D_ _x000D_ ANTICIPATED IMPACT AND DISSEMINATION_x000D_ _x000D_ Provision of evidence needed to inform planned national rollout of EPaCCS as part of routine NHS service delivery. Supported by NHS England and Public_x000D_ Health England, we will ensure our findings can directly inform the future development of EPaCCS.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE