At all stages of our research, we incorporate the perspectives of patients and family members who have had experience with high-risk surgery. One way we do this is through our Patient and Family Advisory Council (PFAC). This group meets regularly to share their stories and provide vital input on the research questions we ask, how we design studies, what interventions we create, and how we collect 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.
If you or a loved one has had experience with high-risk surgery and you would like to discuss joining our PFAC, please contact Jennifer Tucholka (phone: 608-265-0420; email: firstname.lastname@example.org).