Equitable Palliative care In the Community through Primary Care (EPIC-PC): a realist study to propose a new integrated neighbourhood team approach to palliative and end of life care

Description

Joint PIs – Dr Sarah Mitchell and Professor Lucy Ziegler

Background

There are unfair differences in access to palliative care and high quality end-of-life care, particularly for people living in socio-economically deprived areas. Most care is provided at home, with support from primary and community teams, but the quality varies greatly. This is often an overlooked area in palliative care research, policy, and service design.

The Reducing inEQUalities through Integration of Primary and Palliative (RE-EQUIPP) Care Partnership (NIHR135170), led by Sarah Mitchell and Catherine Evans, generated new insights from Patient and Public Involvement and research evidence to inform the EPIC-PC study. The partnership conducted a series of realist workshops with key stakeholders, which led to the development of a programme theory for the integration of primary and palliative care.

The EPIC-PC study aims to identify how, when, why and with what resource, more effective palliative care can be delivered through an integrated approach. The study will particularly focus on achieving an equitable approach for communities facing high levels of socio-economic deprivation.

Key Objectives

1. To understand more about what matters most in healthcare for people who have palliative care needs, people at the end-of-life, and their carers / families. 

2. To understand how , when and why integrated care models can improve quality and reduce inequalities.

3. To provide an understanding of the healthcare resources required in order for these models of care to achieve the outcomes that matter most to patients. 

4. To identify practical steps to support implementation.

Project Work Packages

1. Patient priorities: Interviews and case note reviews with patients and carers in the North East and Yorkshire region of England, followed by a national survey. The aim is to better understand the preferences, priorities, and experiences of people receiving palliative and end of life care.

2. Realist Evaluation: Interviews and focus groups with healthcare professionals to explore how integrated models of palliative care and end-of-life care function in practice. This will help identify what works, for whom, and under what circumstances, particularly in areas of high socio-economic deprivation. A model of care will be described using the data from work packages 1 and 2.

3. Simulation Modelling: Health economics work to understand likely effects of the integrated care model on outcomes, costs, and equity.

4. Stakeholder Workshops: Co-design practical solutions for implementing integrated models of care with patients, carers, professionals, and commissioners.

This research will generate evidence to shape more inclusive, effective, and sustainable access to palliative care and high quality end-of-life care.
 

Impact

The study outputs will make a timely and important contribution to the evidence base needed to support integration in practice and address inequalities, particularly as healthcare services across the country transition toward more integrated neighbourhood team models. This remains a longstanding policy priority, underpinned by statutory duties set out in the Health and Care Act 2022, yet the existing evidence base remains limited.

We will work with Patient and Public Involvement (PPI) members to ensure accessible outputs, disseminated via networks across policy, practice, and patient groups, reaching key stakeholders locally, regionally, and nationally throughout the study.