Patient partner engagement in the publication process: challenges and possible solutions

Area of Science:

• Health Services Research
• Patient and Public Involvement in Research
• Scientific Communication

Background:

• Patient engagement in health research is increasingly mandated by funding agencies.
• Patients are actively participating in research design, conduct, and leadership.
• Patient involvement in the publication process can enhance research impact and real-world utility.

Purpose of the Study:

• To identify barriers and facilitators for patient partners in scientific publication.
• To provide recommendations for a more transparent and accessible publication process for patients.
• To support patient partners in navigating authorship, collaboration, and submission tasks.

Main Methods:

• Systematic review of existing publication practices.
• Analysis of barriers and facilitators impacting patient involvement in publications.
• Development of evidence-based recommendations for improving publication accessibility.

Main Results:

• Limited systematic guidance currently exists for patient partners in publication.
• Challenges include understanding authorship criteria, collaboration in writing, and submission procedures.
• Facilitators include clear communication, defined roles, and supportive editorial practices.

Conclusions:

• The scientific publication process needs greater transparency and accessibility for patient partners.
• Recommendations focus on standardizing guidance and support for patient involvement in publications.
• Enhancing patient engagement in publications ensures research better reflects patient needs and experiences.