Gynecologic cancer survivors shared their patient experiences with researchers and physicians who help set the scientific agenda at the second annual Gynecologic Cancer Survivor-Researcher Summit.
It’s critical input that changes the answer to the question, “Who decides what research is being done?” noted Dr. Shannon MacLaughlan, University of Illinois Cancer Center member, who along with fellow Cancer Center member Joanna Burdette, PhD, joined colleagues from the University of Chicago to co-sponsor the summit.
“Most of the time, the answer is not the right answer,” Dr. MacLaughlan told the audience. “If patients haven’t been at the table, how do we know what’s right and true?”
Survivors comprised half of the audience for the event, held virtually on May 22. The summit featured recorded presentations and live conversations between patients and academics about priorities, clinical trials and the role of advocacy in research and policy.
Survivors encouraged those in research and care delivery to think through the financial, logistical and emotional challenges that accompany many aspects of treatment that may seem rote to healthcare professionals.
“Ask yourself whether three scans in an eight week period are really necessary,” one survivor noted. “Because it is really a lot to demand of your patients.”
Cancer Center Director Jan Kitajewski, patient advocate Kimberly Richardson, MD/PhD candidate Tova Bergsten and grad student Amanda Maldonado were among the featured speakers.