{
  "abstract": "Patient and public involvement and engagement (PPIE) refers to the different ways those with lived experience, including patients, family, friends and carers, and the public engage with the design, delivery and dissemination of research. The aim is to ensure relevance and acceptability of studies, aligning them with the unmet needs and priorities of research participants and end-users. PPIE is now an essential part of research planning, funding acquisition, conduct and communication of findings.This article describes what PPIE is, why it is important and how it can be undertaken well and meaningfully. As a case study, we explore how PPIE has been put into practice in Open-IBD: A longitudinal multi-omic inception cohort study in inflammatory bowel disease (IBD) and examine its impact on both the research and members of the Lived Experience Advisory Panel (LEAP). This article is authored by a collaborative of LEAP members, researchers and clinicians, celebrating the central and meaningful role that PPIE played in shaping this study.",
  "authors": [
    {
      "affiliations": [
        "NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle upon Tyne, UK"
      ],
      "name": "Katherine Jacques"
    },
    {
      "affiliations": [
        "Translational & Clinical Research Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK",
        "Department of Gastroenterology, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, Tyne and Wear, UK"
      ],
      "name": "Robert J Mulligan"
    },
    {
      "affiliations": [
        "Newcastle Clinical Trials Unit, Newcastle University, Newcastle upon Tyne, UK"
      ],
      "name": "Dean M Allerton"
    },
    {
      "affiliations": [
        "Newcastle University, Newcastle upon Tyne, UK"
      ],
      "name": "Open-IBD Collaborators"
    },
    {
      "affiliations": [
        "Human Genetics, Wellcome Sanger Institute, Hinxton, UK"
      ],
      "name": "Carl A Anderson"
    },
    {
      "affiliations": [
        "Open-IBD Lived Experience Advisory Panel, Newcastle upon Tyne, UK"
      ],
      "name": "Simon Andrew"
    },
    {
      "affiliations": [
        "Human Genetics, Wellcome Sanger Institute, Hinxton, UK"
      ],
      "name": "Georgina Bates"
    },
    {
      "affiliations": [
        "Open-IBD Lived Experience Advisory Panel, Newcastle upon Tyne, UK"
      ],
      "name": "Katie Best"
    },
    {
      "affiliations": [
        "Newcastle Clinical Trials Unit, Newcastle University, Newcastle upon Tyne, UK"
      ],
      "name": "Irena Bibby"
    },
    {
      "affiliations": [
        "The Edinburgh IBD Unit, Western General Hospital, Edinburgh, UK"
      ],
      "name": "Jonathan Blackwell"
    },
    {
      "affiliations": [
        "NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle upon Tyne, UK",
        "Translational & Clinical Research Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK",
        "Department of Gastroenterology, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, Tyne and Wear, UK"
      ],
      "name": "Chaonan Dong"
    },
    {
      "affiliations": [
        "Open-IBD Lived Experience Advisory Panel, Newcastle upon Tyne, UK"
      ],
      "name": "Melissa Ganendran"
    },
    {
      "affiliations": [
        "Open-IBD Lived Experience Advisory Panel, Newcastle upon Tyne, UK"
      ],
      "name": "Richard Gardner"
    },
    {
      "affiliations": [
        "Guy's and St Thomas’ NHS Foundation Trust, London, UK"
      ],
      "name": "Peter M Irving"
    },
    {
      "affiliations": [
        "Gastroenterology, Royal Devon and Exeter NHS Foundation Trust, Exeter, Devon, UK",
        "IBD Pharmacogenetics, University of Exeter, Exeter, UK"
      ],
      "name": "Nicholas A Kennedy"
    },
    {
      "affiliations": [
        "Human Genetics, Wellcome Sanger Institute, Hinxton, UK"
      ],
      "name": "Cristina Cotobal Martin"
    },
    {
      "affiliations": [
        "Open-IBD Lived Experience Advisory Panel, Newcastle upon Tyne, UK"
      ],
      "name": "Samantha McCormick"
    },
    {
      "affiliations": [
        "Newcastle Clinical Trials Unit, Newcastle University, Newcastle upon Tyne, UK"
      ],
      "name": "Naomi McGregor"
    },
    {
      "affiliations": [
        "Barts Health NHS Trust, London, UK"
      ],
      "name": "Shameer Mehta"
    },
    {
      "affiliations": [
        "Open-IBD Lived Experience Advisory Panel, Newcastle upon Tyne, UK"
      ],
      "name": "Andrew Megginson"
    },
    {
      "affiliations": [
        "Open-IBD Lived Experience Advisory Panel, Newcastle upon Tyne, UK"
      ],
      "name": "Naomi Moreland"
    },
    {
      "affiliations": [
        "Barts Health NHS Trust, London, UK"
      ],
      "name": "Gareth C Parkes"
    },
    {
      "affiliations": [
        "St George’s University Hospitals NHS Foundation Trust, London, UK"
      ],
      "name": "Kamal Patel"
    },
    {
      "affiliations": [
        "Newcastle Clinical Trials Unit, Newcastle University, Newcastle upon Tyne, UK"
      ],
      "name": "Jonathan Prichard"
    },
    {
      "affiliations": [
        "Open-IBD Lived Experience Advisory Panel, Newcastle upon Tyne, UK"
      ],
      "name": "Kelly Saunders"
    },
    {
      "affiliations": [
        "Translational & Clinical Research Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK",
        "Department of Gastroenterology, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, Tyne and Wear, UK"
      ],
      "name": "R Ally Speight"
    },
    {
      "affiliations": [
        "Translational & Clinical Research Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK"
      ],
      "name": "Christopher J Stewart"
    },
    {
      "affiliations": [
        "Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK"
      ],
      "name": "Sreedhar Subramanian"
    },
    {
      "affiliations": [
        "Translational & Clinical Research Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK"
      ],
      "name": "Hannah Watson"
    },
    {
      "affiliations": [
        "NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle upon Tyne, UK",
        "Translational & Clinical Research Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK"
      ],
      "name": "Gregory R Young"
    },
    {
      "affiliations": [
        "NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle upon Tyne, UK",
        "Newcastle upon Tyne Hospitals Department of Cellular Pathology, Newcastle upon Tyne, UK"
      ],
      "name": "Alastair D Burt"
    },
    {
      "affiliations": [
        "NIHR Newcastle Biomedical Research Centre, Newcastle University, Newcastle upon Tyne, UK",
        "Translational & Clinical Research Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK",
        "Department of Gastroenterology, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, Tyne and Wear, UK"
      ],
      "name": "Christopher A Lamb"
    }
  ],
  "title": "Patient and public involvement and engagement in research: who, why, when and how to get it right",
  "uid": "8db3a9ea-f141-52f4-86c5-cd01706a8a13"
}