'It's easier when you know how': a publications training course for patient advocates, co-created by patient advocates and publication professionals

Objective: Consistent with diversity, equity, and inclusion principles and the 'nothing about us without us'1 premise, patients are increasingly involved in publications. Publication professionals have expertise in ethical and effective publication practices and can help patients plan, author, and disseminate publications from patient-led or patient-partnered research. Our objective was to establish a collaboration between patient advocates and publication professionals to co-create a world-first, open-access, publications training course for patient advocates. Research design and methods: From January-December 2020, the Workgroup of European Cancer patient Advocacy Networks (WECAN) collaborated with publication professionals, with expertise in patient involvement in publications2-4, to develop a publications training course. We used a stepwise process for course development, including (1) forming a core team;(2) conducting needs assessments with patient advocates, publication professionals, and pharmaceutical industry sponsors;(3) securing funding;(4) establishing a patient advocate editorial board to generate and review content;(5) gaining consensus on course objectives, scope, and format;(6) developing course modules according to adult learning principles. Results: Our core team (n=5;patient advocates, publication professionals, project managers) identified strong interest in the proposed in-person course during the needs assessments and secured funding from industry and non-industry sponsors. We established a patient advocate editorial board (n=7) and gained consensus on course objectives and scope. An online format option was added because of COVID-19. Certified Medical Publication Professionals developed four, 1-h, self-study modules with interactive learning exercises. Conclusions: A successful collaboration between patient advocates and publication professionals enabled co-creation of the world's first, open-access, publications training course for patient advocates5.