Hidden in plain sight? Identifying patient-authored publications

Area of Science:

• Scholarly publishing
• Patient advocacy
• Health research

Background:

• Patient advocates are authoring peer-reviewed publications, enhancing patient care and lived experience understanding.
• Identifying patient-authored publications is challenging, hindering recognition of their value.
• Patient authorship is an emerging innovation in scientific communication.

Discussion:

• A proposed definition for patient authors and their publications is outlined.
• Factors driving patient authorship include patient interest, funder recognition, and the value of patient voices.
• Guidance for patient advocates on authoring peer-reviewed publications is emerging.
• PubMed's affiliation search with a "Patient Author" metatag offers an efficient identification method.
• A nine-fold increase in identified patient-authored publications was observed from 2020-2021 using this tag.

Key Insights:

• Patient authorship is legitimate and aligns with diversity, equity, and inclusion principles.
• A standardized metatag is crucial for identifying and quantifying patient-authored publications.
• Consensus on a suitable metatag is needed to reflect the true extent of patient authorship.

Outlook:

• Publication stakeholders must review policies to remove barriers to patient authorship.
• Promoting awareness and acceptance of patient authorship is a shared responsibility.
• Standardized metatags will ensure patient-authored publications are visible and recognized.