Scoping review of patient and family engagement interventions in diagnosis: a paradox of too much, yet so little.

Hill MA, Haskell H, Dainty KN, Haskell H, Dainty KN, Kuluski K, Kuluski K, Shea C, Heimlich L, Shea C, Heimlich L, Kazi S, Kazi S, Sochaniwskyj M, Sochaniwskyj M, Priore A, Priore A, Mason TLM, Coppinger T, Mason TLM, Coppinger T, Isani S, Isani S, Scala N, Scala N, Shearkhani S, Shearkhani S, Kazi S, Kazi S, Giardina TD, Miller KE, Giardina TD, Miller KE, Smith KM, Smith KM, Patient-Partnered Diagnostic Center of Excellence , Patient-Partnered Diagnostic Center of Excellence. Scoping review of patient and family engagement interventions in diagnosis: a paradox of too much, yet so little. BMJ quality & safety. 2025 Dec 23 DOI: 10.1136/bmjqs-2025-019145.

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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.