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.

Research question:

What are the key contexts, resources and components required for an integrated approach to palliative and end of life care to deliver improved and more equitable outcomes for patients and carers? Background:

Avoidable and unfair differences in access to high quality palliative care exist for different groups of people and communities. Primary and community care teams deliver most palliative and end of life care to people at home but the quality of care provided is highly variable in practice. This is an under-researched area and receives little attention in service design and policy.

Aims / Objectives:

This realist research will investigate the key contexts, resources and components required for an integrated approach to palliative and end of life care, to achieve more equitable, beneficial outcomes. Objectives:

1. To understand patient and carer experience, priorities, and preferences, regarding the provision of community end of life care, with a focus on areas of socioeconomic deprivation.

2. To understand the service development and training needs of primary care and specialist palliative care staff to enable delivery of integrated palliative care in the community. 3. To propose how, when why and for whom the approach improves outcomes (programme theory). 4. To define the potential economic value and impact of the integrated approach.

5. To determine the key enablers, including commissioning and contracting processes, to enable the integrated approach to be implemented in practice. Methods: The objectives will be addressed through four work packages (WPs):

WP1 (Objectives 1&3): Multi-perspective mixed-methods study, to understand patient preferences and priorities in palliative care, with a focus on deprivation. The WP will comprise (i) qualitative interviews with patients and their family members / carers, (ii) review of their primary care case notes and (iii) a broader discrete choice experiment.

WP2 (Objectives 2&3): Realist evaluation of integrated models of palliative and end of life care comprising (1) interviews (theory-refining) and (2) focus groups (theory consolidating) with professionals. Realist analysis will bring together data from WPs 1&2, leading to a proposed integrated approach to palliative and end of life care (key contexts, beneficial outcomes, and the underlying mechanisms) and parameters to inform WP3.

WP3 (Objective 4): Dynamic simulation modelling to evaluate the impact of the proposed integrated approach on the healthcare resources needed to deliver it, quality of care and inequalities. Parameters, including estimation of healthcare costs and resources, patient demographics, and outcomes, will be informed by WPs 1&2.

WP4 (Objective 5): Two expert stakeholder workshops to determine the key enablers to implementation of the approach in practice. Timelines for delivery:

The research will be delivered within a three-year timeframe, with a dissemination strategy to inform key stakeholders including patients and families, professionals in primary care and specialist palliative care and service commissioners of findings throughout. Anticipated impact and dissemination:

The results will inform service delivery to reduce inequalities and optimise the use of finite resources to maximise impact. The research team have the professional networks necessary to deliver impact through a targeted dissemination strategy across service delivery, policy and academia.