Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications

Area of Science:

• Medical Research
• Publication Ethics
• Patient Engagement

Background:

• Patient involvement in research strengthens partnerships and adds value to publications.
• Current practices often lack sufficient patient representation in authorship.
• A shift towards genuine patient partnership is needed.

Purpose of the Study:

• To propose seven actionable steps for advancing patient authorship and collaboration in peer-reviewed publications.
• To advocate for a paradigm shift from patient-centricity to patient partnership.
• To enhance the inclusion and representation of patient perspectives in scientific literature.

Main Methods:

• Expert consensus from patient advocates, patient and caregiver representatives, and pharmaceutical and medical communications professionals.
• Drawing on research, personal experience, and professional insights.
• Proposal of seven specific actions to foster patient authorship.

Main Results:

• A call to shift publication practices from seeking reasons to include patient authors to justifying their exclusion.
• Emphasis on holistic patient involvement in publication steering committees.
• Recommendations for a 'patient author' affiliation metatag for better identification and standardization.
• Highlighting the need for guidance on patient author compensation for diversity, equity, and inclusion.
• Advocating for extended reach of publications through accessibility and open access.

Conclusions:

• Implementing the proposed actions will foster greater patient inclusion and equitable power balance in research publications.
• Strengthening patient-author partnerships is crucial for improving communication, understanding, and equity.
• Enhanced recognition and compensation for patient authors are essential for a more inclusive research landscape.