{
  "abstract": "Introduction Actively engaging patients is essential for diagnostic excellence and patient safety.Objectives To (1) identify and synthesise interventions facilitating patient and family engagement (PFE) across the diagnostic process, and (2a) assess patient involvement and (2b) equity considerations in their design or implementation.Design This scoping review followed Arksey and O’Malley’s framework and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Review) guidelines. An advisory panel guided the review. We searched Medline, Embase, CINAHL, PsycInfo and Northern Light for peer-reviewed literature and conducted grey literature searches using DuckDuckGo and targeted websites. Search terms focused on PFE and diagnostic error. Eligible interventions were published in English between January 1999 and July 2024 and supported PFE in at least one step of the National Academies of Sciences, Engineering, and Medicine (NASEM) diagnostic process. Narrative reviews, case studies and editorials were excluded. Interventions were mapped to the NASEM steps; data were extracted on patient involvement and equity.Results Of the 11 630 studies screened, 250 were included, representing 260 interventions. Most (n=213; 85.2%) were from the grey literature, and patients were primary users (n=166; 63.8%). Interventions spanned all diagnostic process steps but were most common in treatment (n=122; 46.9%) and history taking (n=100; 38.5%), with few in referrals (n=10, 3.8%) and physical examinations (n=6, 2.3%). The evidence base was weak: grey literature interventions lacked high-quality studies, and among the 37 peer-reviewed studies, three were randomised controlled trials, each limited by small samples or high attrition. Only 63 interventions (24.2%) were designed with patients, and 48 (18.5%) incorporated equity.Conclusion PFE interventions exist across the diagnostic process, but few target referrals and physical examinations. The evidence remains weak, and current interventions cannot be considered effective. Future research should prioritise equity, patient involvement and rigorous evaluation.",
  "authors": [
    {
      "affiliations": [
        "Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada",
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Mary A Hill"
    },
    {
      "affiliations": [
        "Mothers Against Medical Error, Columbia, South Carolina, USA"
      ],
      "name": "Helen Haskell"
    },
    {
      "affiliations": [
        "Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada",
        "Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada",
        "North York General Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Katie N Dainty"
    },
    {
      "affiliations": [
        "Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada",
        "Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada",
        "Institute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada"
      ],
      "name": "Kerry Kuluski"
    },
    {
      "affiliations": [
        "Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada",
        "Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Christine Shea"
    },
    {
      "affiliations": [
        "MedStar Washington Hospital Center, Washington, District of Columbia, USA"
      ],
      "name": "Layla Heimlich"
    },
    {
      "affiliations": [
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Sharifa Kazi"
    },
    {
      "affiliations": [
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Mark Sochaniwskyj"
    },
    {
      "affiliations": [
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Alessia Priore"
    },
    {
      "affiliations": [
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Taylor Leslie Marie Mason"
    },
    {
      "affiliations": [
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Tess Coppinger"
    },
    {
      "affiliations": [
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Simran Isani"
    },
    {
      "affiliations": [
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Nicole Scala"
    },
    {
      "affiliations": [
        "Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada",
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Sara Shearkhani"
    },
    {
      "affiliations": [
        "MedStar National Center for Human Factors in Healthcare, Columbia, Maryland, USA",
        "School of Medicine, Georgetown University, Washington, District of Columbia, USA"
      ],
      "name": "Sadaf Kazi"
    },
    {
      "affiliations": [
        "Houston Veterans Affairs Center for Innovations in Quality, Effectiveness and Safety, Michael E DeBakey VA Medical Center, Houston, Texas, USA",
        "Section of Health Services Research, Department of Medicine, Baylor College of Medicine, Houston, Texas, USA"
      ],
      "name": "Traber D Giardina"
    },
    {
      "affiliations": [
        "MedStar National Center for Human Factors in Healthcare, Columbia, Maryland, USA"
      ],
      "name": "Kristen E Miller"
    },
    {
      "affiliations": [
        "Patient-Oriented Research, Toronto East Health Network Michael Garron Hospital, Toronto, Ontario, Canada"
      ],
      "name": "Kelly M Smith"
    },
    {
      "affiliations": [],
      "name": "The Patient-Partnered Diagnostic Center of Excellence"
    }
  ],
  "title": "Scoping review of patient and family engagement interventions in diagnosis: a paradox of too much, yet so little",
  "uid": "affbb91c-c903-5cd4-994a-875a6a6c8303"
}