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

Abstract

Patient engagement in research is gaining traction as an international standard, and often requirement, of many health research funding agencies. Drivers of this increase include patient interest, increased attention to and recognition of the value of patients' voices in research, and more patients leading or partnering in the conduct research. Patient engagement includes collaborating and providing insights into research question and study design, and may extend to the publication process. When patients contribute to publications, they can bring unique perspectives that may enhance the impact, reach, and utility of the research in real-world contexts. Currently, there is limited systematic guidance to support patient partners as they navigate this complex publication process. As a result, it can be difficult for patient partners to understand when and how they should be included as authors, how to collaborate in the writing process, and how to complete mandatory tasks during the submission process. In this paper, we review barriers and facilitators within existing publication practices and offer recommendations to ensure that the scientific publication process is more transparent and accessible for patient partners.

Keywords: Co-authorship; Co-production; Collaboration; Patient engagement; Patient partnership.