PB0475 - Empowering patient ambassadors to champion research outcomes that are a priority for people who have lived experience with venous thromboembolism (VTE)

Background: The VTE-core outcome set (VTE-COS) study aims to derive an agreed upon set of standardized outcomes that should be measured and reported in clinical trials for VTE treatments. This core outcome set is determined by consensus, including diverse stakeholder groups, with priority given to the experience and opinions of patients.

Aims: Patient engagement was central to the VTE-COS study. The aim of the VTE-COS EMPOWER project was to empower patient partners as VTE Patient Ambassadors to lead the knowledge translation and dissemination of VTE-COS and build a toolbox of resources for including lived experience in knowledge translation.

Methods: Information was gathered from CanVECTOR patient partners on their experience in sharing their lived experiences with research teams. A search for examples of the incorporation of lived experience in knowledge translation was performed. Examples were categorized into themes to form a toolbox of methods for patients. The toolbox was presented at a workshop attended by the CanVECTOR patient partner council and an invited expert speaker. During the workshop, knowledge translation plans were developed using the identified tools and materials.

Results: Patient partners identified six themes of communication with researcher teams. These included: videos, live presentations, letters of support, patient testimonials, representation at team meetings, and one-on-one conversations. Scoping review identified four themes of tools applicable. These included: visual graphics (art, posters, comics and infographics), written texts (narrative stories, poetry, social media, quotations), audio/video (animated video, song, podcast/ audio clip, filmed narrative, filmed interview and video production), live sharing (conversation, presentations). During the 2-day workshop, methods were explored for each tool and plans were outlined for adaptation to specific settings.

Conclusion(s): The process of empowering patient partners to incorporate lived experience in knowledge translation opened avenues for patient partners to be champions of knowledge translation.