What we know, don't know, and need to know about patient authorship: a scoping review, evidence gap analysis, and research roadmap.

BACKGROUND

Patient authorship is an innovation, challenging a centuries-old medical publishing model. To guide best practices for patient authorship, a strong evidence base is required. The objectives of this research were to: (1) Identify 'what we know' about patient authorship via a scoping review. (2) Describe 'what we don't know' about patient authorship via an evidence gap analysis. (3) Propose 'what we need to know' about patient authorship via a research roadmap.

METHODS

This patient-led, voluntary, research project was conducted according to best practice guidelines. Using a registered protocol, the Population, Concept, and Context framework was applied and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses - Scoping Reviews checklist completed. The literature search strategy, prepared with a university information specialist, focused on peer-reviewed publications reporting empirical evidence on patient authorship. Database searches (MEDLINE, EMBASE; all dates up to 03/04/2025) were complemented by hand-searching and expert recommendations. References were downloaded into EndNote 21, screened using Covidence, and data (40 variables) extracted. Published evidence gaps were coded using eight deductive topic-summary themes and categorised (ethical/effective practices; lifecycle stage -planning, generating, sharing, evaluating). Frequency analysis of evidence gaps was used to generate proposed research questions.

RESULTS

Of 1,036 retrieved publications, 29 were eligible, yielding 1,160 datapoints. Most publications on patient authorship are recent (86% published between 2020-2025), accessible (90% open access), include patient authors (83%), but are limited in terms of reporting (34% used GRIPP2) and representativeness (97% from high-income countries; 79% from English-language countries). Published evidence on patient authorship exists to support ethical and effective practices for each publication lifecycle stage. However, 90 evidence gaps were identified. The resulting research roadmap includes research questions to address high-frequency gaps.

CONCLUSIONS

This study provides the first structured and integrated synthesis of peer-reviewed, published, empirical evidence on what is known, not known, and what we need to know about patient authorship. Citable and structured evidence is now readily available to help support patient authorship practices and resources. The novel roadmap could help reduce research waste and accelerate evidence-based best practice guidelines for patient authorship. An infographic plain language summary is available (Additional File 1).

(TRIAL) REGISTRATION: Not applicable. An a priori protocol for this research was registered and is available at https://doi.org/10.17605/OSF.IO/BGK24.