Research Workshops 2019-2020

Through support from PCORI funding we have conducted a series of focus groups and generated a large pool of draft research questions. This year we conducted two research workshops and eight research webinars to further prioritize and refine these draft research questions, in order to develop a single research protocol that is meaningful to our community. During our first research workshop we provided training to patient and caregiver participants so that they had a shared understanding of clinical research principles and basic health research literacy. We also provided training to the healthcare researchers on how to collaborate with patients on the research team. Patient and caregiver participants also voted and selected a priority topic and research question that were originally developed during our focus groups. During our research webinars, we continued to obtain the patient's perspectives and opinions about the predictors and outcomes for the research question selected. 

*More information on our recent work is to follow after publication of our paper.