A scoping review of guidance on sharing trial results with patients and the public finds inconsistent recommendations and limited methodological development.

OBJECTIVES: To identify, analyse and summarise existing guidance on sharing trial results with patients and the public and to provide recommendations for developing a high-quality reporting guideline that is user-friendly, effective, and accessible. STUDY DESIGN AND SETTING: We included English-language documents providing guidance or recommendations on sharing research study results with patients and/or the public, published anytime, in journals or grey literature. We systematically searched Ovid MEDLINE® and Web of Science Core Collection, performed citation tracking in PubMed®, and conducted extensive grey literature searches, including Google and Google Scholar, and other key websites (e.g., EQUATOR Network, government and research organisations, publishing groups, research and policy centres). Titles and abstracts were screened for eligibility, followed by full-text review. The results were thematically analysed. RESULTS: A total of 2,289 potentially eligible records were screened, and twenty-four met eligibility criteria and included in the review. Of these, only nine were broadly applicable to clinical trial designs. No specific guidance or reporting guideline were identified focusing on sharing results of randomised trials with patients and the public. Recommendations on content, presentation, timelines, and dissemination varied in quality and specificity. Most guidance documents lacked details on tailoring information for diverse audiences, with minimal focus on cultural sensitivity or inclusivity. Only five of the documents had been pilot-tested prior to implementation, and stakeholder involvement was reported in thirteen, though often inconsistently. CONCLUSION: While there has been progress in developing guidance for sharing research results, many existing documents lack a standardised approach, do not sufficiently address diversity considerations and have not undergone formal evaluation. Future efforts should focus on co-producing a tailored reporting guideline following established methodology with meaningful stakeholder-involvement and pilot-testing to ensure that recommendations meet the diverse needs of patients and the public.