We are interested in incorporating the perspectives of patients and family members. One way we do this is through our PCORI-funded Patient and Family Advisory Council (PFAC). This group, comprised of patients and family members who had experience with high-risk surgery, met regularly for four years to share their stories and provide vital input on the research questions we asked, how we designed studies, what interventions to create, and how we collected data. For example, our PFAC members were directly involved in developing and refining the question list intervention we’re piloting in one of our current studies.
They’ve told us that they appreciate being able to make a meaningful contribution to research and help other patients and families make decisions that they once had to make.
This project is complete.