Plain Language Summaries & Patient Engagement in Pediatrics

Plain language summaries (PLS) of clinical trial results ensure that study participants are informed about study results and that they understand the value of their contribution to science and public health. Patient engagement is key to support PLS development. Factoring patient insights and experience into PLS development drives improvement of PLS quality, readability, and comprehension.
This webinar discussed a recently developed online patient engagement portal to enable patients to provide direct feedback on PLS. Results of surveys taken by reviewers in this portal were be presented. We included perspectives on partnering with patient advocacy groups to ensure that patients can comment and assess the readability of PLS. This webinar focused on the pediatric PLS space, with consideration given to the cognitive development and unique needs and perceptions of children and young people. A model for pediatric patient engagement and PLS development was presented and discussed. By building this level of engagement, sponsors can not only advance clinical research and meet data transparency and disclosure requirements, but also foster closer relationships with the patient community in both the adult and pediatric arenas.
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