Patient Researcher Forum
Many of the researchers at Moffitt Cancer Center rarely have an opportunity to connect with patients one-on-one, even though their research is fundamental to developing new cancer treatments. However, a new program called the Patient Researcher Forum is beginning to change that.
The forum is connecting researchers and patients and it’s been evident just how beneficial this partnership can be for its organizers and participants.
The program began when a patient with stage 4 melanoma contacted Dr. Liem Quang Le, a licensed acupuncturist at Moffitt, and told him she wanted to see a research lab. Always willing to help patients, Dr. Le coordinated with Dr. Eric Lau, an assistant member in the Department of Tumor Biology, who gave the patient a tour of his lab.
“We thought this would be an opportunity for my trainees to break down in layman’s terms what it is that they do,” says Lau. “But she turned the tables on us.
“For almost 20 minutes in my lab, she basically told us about everything in her life; from the day she woke up feeling sick to her diagnosis with metastatic cancer in the brain that same week. And it was very emotional, for the patient and for us. We provided an emotional reception that was very different from what she had experienced.”
Organizers knew they had to replicate this experience somehow, and set to work exploring how they could duplicate and expand the program. Working the manager of Moffitt’s Patient and Family Advisory Program Anne Bidelman, the program recruits patients who are willing to participate in the process. With some help from Bidelman, patients learn how to share their stories in a meaningful and impactful way.
“[This program is] not only beneficial for the researchers, but it’s also beneficial for the patient who is sharing their experience because they feel listened to, they feel heard. They feel as though, from what they have experienced, that something good can come from it to impact research,” Bidelman said.
A key to the program’s success is the close integration of clinical, translational and basic scientists who help bring novel therapies from their labs directly to the patient. In this way, Moffitt is continually improving patient outcomes and enhancing quality of life.
Since its inception in July 2018, the Patient Researcher Forum has continued to bring patients and researchers together.
To start the program, each patient receives a customized tour of the hosting lab. While the patient and their guests tour the lab, forum researcher participants hear from a Moffitt physician who specializes in that patient’s diagnosis.
Then, over lunch, the patients and caregivers share their stories about what they’ve experienced, including their treatments, hurdles, side effects, recurrences and successes. The researchers, in turn, introduce themselves and explain their research work.
“We’re here to listen, we’re interested in your story, and we are all willing to be as emotionally vulnerable with you as you are with us,” Dr. Lau said.
Participating patients can be anywhere from survivorship to currently undergoing treatment. Caregivers are welcome to attend and speak as well.
If you would like to learn about the many ways to partner with Moffitt, including sharing your story, please email PatientAdvisors@Moffitt.org.