{
  "abstract": "Introduction Avoidable and unfair variation in access to palliative care exists for different groups of people and communities. Primary and community care teams deliver most palliative care and care to people at the end of life at home but the quality of care provided is variable. This is an under-researched area and receives little attention in service design and policy. This study will investigate the key contexts, resources and components required for an integrated approach to palliative care to deliver improved and more equitable outcomes for patients and carers.Methods and analysis This mixed-methods study adopts a realist methodological approach, and comprises four work packages:A multi-perspective mixed-methods study to understand patient preferences and priorities in palliative care, prioritising recruitment of patients and family members/carers from areas of socioeconomic deprivation. Data collection will comprise: (1) qualitative interviews, (2) review of patient case notes and (3) a discrete choice experiment. Realist analysis will result in the development of theory based on the identification of the key contexts and underlying mechanisms required to achieve beneficial outcomes through an integrated approach to palliative care.A realist evaluation of existing integrated models of palliative care will involve theory-refining interviews and theory-consolidating focus groups with professionals working in three different service areas.Dynamic simulation modelling of the healthcare resources needed to deliver the proposed integrated approach, ensuring quality and equity.The theoretical and economic modelling will be tested out at two expert stakeholder workshops to determine the key enablers to implementation in practice.Patient and public involvement The study design was informed by patient and public involvement (PPI) with 16 patients and members of the public from diverse and socioeconomically deprived communities for 12 months in a National Institute for Health and Care Research-funded palliative care partnership. PPI will be continuous throughout the study, prioritising inclusivity.Ethics and dissemination Ethical approval was obtained from the East of Scotland Research Ethics Service Research Ethics Committee 2, on 20 August 2025 (IRAS ID: 354755) and Health Research Authority approval on 1 October 2025. The targeted dissemination strategy will include outputs and resources for key audiences including patients and families, professionals in primary care and specialist palliative care and service commissioners. The results will inform service delivery to reduce inequities and optimise the use of finite resources to maximise impact.Trial registration details The study is registered with the ISRCTN UK Clinical Study Registry: https://www.isrctn.com/ISRCTN61092011.",
  "authors": [
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Sarah Mitchell"
    },
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Jacqueline Birtwistle"
    },
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Aaishah Javeed"
    },
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, PPIE Co-Author, Leeds, UK"
      ],
      "name": "Jude Beng"
    },
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, PPIE Co-Author, Leeds, UK"
      ],
      "name": "Lisa Hulbert"
    },
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Carole A Paley"
    },
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Emilie Couchman"
    },
    {
      "affiliations": [
        "Academic Unit of Health Economics, Leeds Institute of Health Sciences, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Paola Cocco"
    },
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Matthew Allsop"
    },
    {
      "affiliations": [
        "Department of Applied Health Sciences, University of Birmingham, Birmingham, UK"
      ],
      "name": "Justin Aunger"
    },
    {
      "affiliations": [
        "Academic Unit of Health Economics, Leeds Institute of Health Sciences, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Edward Webb"
    },
    {
      "affiliations": [
        "Academic Unit of Health Economics, Leeds Institute of Health Sciences, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Bryony Dawkins"
    },
    {
      "affiliations": [
        "Wolfson Palliative Care Research Centre, University of Hull, UK, Hull York Medical School, Hull, UK"
      ],
      "name": "Fliss E M Murtagh"
    },
    {
      "affiliations": [
        "King’s College London, Bessemer Road, London, Cicely Saunders Institute of Palliative Care and Rehabilitation, London, England, UK"
      ],
      "name": "Catherine Evans"
    },
    {
      "affiliations": [
        "Academic Unit of Palliative Care, Leeds Institute of Health Science, Worsley Building, Clarendon Way, University of Leeds, Leeds, UK"
      ],
      "name": "Lucy Ziegler"
    }
  ],
  "title": "Equitable Palliative care In the Community through Primary Care (EPIC-PC) study protocol: a realist study to propose a new integrated neighbourhood team approach to palliative care",
  "uid": "3cfb7e90-a30d-5b5f-901f-c152afb5cfec"
}