{
  "abstract": "Ethnicity data are essential in understanding how different groups are impacted by different treatments/healthcare interventions, but more work is needed in how these data should be collected, handled and reported in trials to address distrust among marginalised ethnic groups towards healthcare research. To do this, researchers need effective training and opportunities to engage with communities from a diverse range of ethnicities. Developing guidance on how to meaningfully involve diverse ethnic groups in all stages of a trial including planning the collection of ethnicity data is one way to improve the impact of clinical trial results and ensure these groups can access equitable healthcare.Our collaborative work between health researchers and diverse ethnic communities produced 13 initial recommendations aimed at academic health researchers to change their practice involving diverse ethnic communities in areas from trial design through to reporting. The first four recommendations are concerned with the planning stage of the trial, the fifth with how researchers interact with funding bodies. Recommendations 6, 7 and 8 are relevant to data collection during trial set up, and recommendations 9, 10 and 11 focus on training and responsibility during the trial set up and the trial conduct stage. Recommendations 12 and 13 cover reporting.The recommendations will benefit from piloting but have the potential to help trial teams make their research more inclusive with regard to ethnicity, which in turn will support more representative, equitable and impactful research.",
  "authors": [
    {
      "affiliations": [
        "Centre for Primary Care, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, England, UK"
      ],
      "name": "Ratna Sohanpal"
    },
    {
      "affiliations": [
        "Centre for Evaluation and Methods, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, England, UK"
      ],
      "name": "Sian Newton"
    },
    {
      "affiliations": [
        "Transformation Community Resource Centre, Caribbean and African Health Network, Manchester, UK"
      ],
      "name": "Percy Akudo"
    },
    {
      "affiliations": [
        "Social Action for Health, London, UK"
      ],
      "name": "Grainne Colligan"
    },
    {
      "affiliations": [
        "Egality Health, Egality, London, UK"
      ],
      "name": "Annette Crosse"
    },
    {
      "affiliations": [
        "Social Action for Health, London, UK"
      ],
      "name": "Ceri Durham"
    },
    {
      "affiliations": [
        "Freelance Health Equity and Patient Involvement Specialist, Aberdeenshire, UK"
      ],
      "name": "Heidi Green"
    },
    {
      "affiliations": [
        "Nuffield Department of Orthopaedics, Oxford Clinical Trials Research Unit, Rheumatology and Musculoskeletal Sciences, Botnar Research Centre, University of Oxford, Oxford, England, UK"
      ],
      "name": "Sally Hopewell"
    },
    {
      "affiliations": [
        "Usher Institute of Population Health Sciences and Informatics, The University of Edinburgh, Edinburgh, Scotland, UK"
      ],
      "name": "Tracy Jackson"
    },
    {
      "affiliations": [
        "Public Contributor, London, UK"
      ],
      "name": "Sandra Jayacodi"
    },
    {
      "affiliations": [
        "Centre for Primary Care, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, England, UK"
      ],
      "name": "Imran Khan"
    },
    {
      "affiliations": [
        "Caribbean and African Health Network, Manchester, UK"
      ],
      "name": "Charles Kwaku-Odoi"
    },
    {
      "affiliations": [
        "Public Contributor, London, UK"
      ],
      "name": "Emily Lam"
    },
    {
      "affiliations": [
        "Keele Medical School, Keele University, Keele, England, UK"
      ],
      "name": "Gillian A Lancaster"
    },
    {
      "affiliations": [
        "Keele Clinical Trials Unit, Keele University, Keele, UK"
      ],
      "name": "Sarah Ann Lawton"
    },
    {
      "affiliations": [
        "University of Dundee, Dundee, Scotland, UK"
      ],
      "name": "Meiko Makita"
    },
    {
      "affiliations": [
        "SAHA Community Hub, c/o Shree Limbachia Community Centre, Leicester, UK"
      ],
      "name": "Kirit Mistry"
    },
    {
      "affiliations": [
        "Race Equality First, Cardiff, Wales, UK"
      ],
      "name": "Aliya Mohammed"
    },
    {
      "affiliations": [
        "Egality Health, Egality, London, UK"
      ],
      "name": "Beatriz L Ratton"
    },
    {
      "affiliations": [
        "Keele Clinical Trials Unit, Keele University, Keele, UK"
      ],
      "name": "Jo Smith"
    },
    {
      "affiliations": [
        "The University of Manchester Library, The University of Manchester, Manchester, England, UK"
      ],
      "name": "Ria Sunga"
    },
    {
      "affiliations": [
        "Centre for Evaluation and Methods, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, England, UK"
      ],
      "name": "Ann Thomson"
    },
    {
      "affiliations": [
        "Aberdeen Centre for Evaluation, University of Aberdeen, Aberdeen, Scotland, UK",
        "Department of Women’s and Children’s Health, Uppsala University, Uppsala, Uppsala County, Sweden"
      ],
      "name": "Shaun Treweek"
    },
    {
      "affiliations": [
        "UK Association of Black Psychologists, c/o Pattigift Therapy Services, Birmingham, UK"
      ],
      "name": "Clancy Williams"
    },
    {
      "affiliations": [
        "Public contributor, Greater Manchester, UK"
      ],
      "name": "Manoj Mistry"
    },
    {
      "affiliations": [
        "Clinical Trials Collaboration, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK"
      ],
      "name": "Sandra Eldridge"
    }
  ],
  "title": "Improving inclusivity in UK clinical trials through good practice in the collection and use of ethnicity data: recommendations from the INCLUDED study",
  "uid": "f1248260-4e09-5ecb-b72f-adcd4a34bc9b"
}