ISMPP EU 2023
The role of the patient in publications
No topic attracted more commentary at this year’s ISMPP meeting than the role of patients in publications. Everyone agrees that compliant “end-to-end” engagement with patients throughout the research and publication process can improve the quality and accessibility of publications; however, how we get there remains a matter for debate. For that reason, you will see patient considerations mentioned across every topic at the meeting, but here are three big themes that kept coming up.
“Patients” are not a monolith. “Patient involvement in publications” can include independent individuals with a health condition, experienced patient advocates, patient caregivers, and others. Each of these groups offers different insights and has differing needs.
Although payment for authorship is never acceptable, Good Publication Practice 2022 allows the possibility of reimbursing patients for their time. But implementing this in practice remains challenging. A one-size-fits-all approach is not possible, and transparency is essential!
Engagement with patients increases the quality of research as well as the quality of publications. Active collaboration with patients can provide in-depth insights into disease experience and access to patient populations who may not otherwise be represented in trials.
ISMPP, International Society of Medical Publication Professionals.