OBJECTIVES: Publications describing patient engagement (PE) efforts are limited, despite substantial growth in the number and diversity of these efforts. There is a need to share PE methodologies, learnings, best practices, and outcomes and to make these more visible to scientific and patient communities, and to all active in PE. Peer-reviewed publications and congress presentation are validated methods for such dissemination. We explored priorities, motivators and challenges to PE publication development.

METHODS: Online (August 18–September 25, 2023) and live (October 3, 2023) surveys were conducted; participants were active in PE and invited to participate through Patient Engagement Open Forum networks and social media outreach.

RESULTS: 92 respondents participated (51 online, 41 live). Groups were pharmaceutical/medical technology (40%), patients/patient organizations (36%), research/research funders (7%), medical communication agencies (7%), contract research organizations (2%), and other (9%). Overall, 92% of respondents (n=51) indicated that PE publications were a high (61%) or medium (31%) priority. In the online survey, key motivators for PE publication were providing accessible documentation (67%), enhancing visibility (67%), demonstrating robustness of methodology (57%), and providing feedback to interested parties (51%); 88% of live survey respondents agreed. Other motivators (n=2) were academic acceptance and sharing best practice. In the online survey, key challenges to PE publication development were lack of internal resource/budget (41%), absence of clear guidance (25%), ability to reach diverse patient audiences (9%), not being encouraged to share patient perspectives externally (6%), and patient privacy considerations (6%); 82% of live survey respondents agreed. Other challenges (n=2) were potentially lengthy peer-review processes and competing research priorities.

CONCLUSIONS: Our survey results demonstrate that developing publications describing the process and insights from PE activities is a priority but challenges exist. Efforts should focus on providing resources and practical ‘How-To’ guidance to foster more systematic development of peer-reviewed PE publications.