Advocates & Researchers Work Together to Advance Science
Written by Suzanne Mooney
Patients and researchers gathered for the first GRASP program in 2019 at SABCS.
GRASP PROGRAM BRINGS TOGETHER ADVOCATES AND RESEARCHERS
As attendees headed home from the 2022 American Society of Clinical Oncology (ASCO) Annual Meeting, held June 3-7 in Chicago and virtually, a dedicated group of patient advocates and researchers prepared for a series of online poster discussions to dive into the latest research findings. These sessions, organized by Guiding Researchers and Advocates to Scientific Partnerships (GRASP), a nonprofit organization committed to accelerating and improving cancer treatments by connecting patients, clinicians, and researchers, took place June 9-10.
Launched as a pilot program at the 2019 San Antonio Breast Cancer Symposium (SABCS), the GRASP poster walkthrough program helps advocates better understand the science behind cancer treatments while providing researchers an opportunity to hear from another group of cancer experts – the patients themselves.
“These interactions are so rich, for the scientists as well as for us,” said Debbie Denardi, a breast cancer survivor, patient advocate, and GRASP volunteer. “It is so rewarding when we finish those sessions because you know you are making a difference.”
WHAT IS GRASP?
GRASP was founded by Julia Maués and Christine Hodgdon, two breast cancer survivors and advocates who identified a need for breaking down silos and fostering connections within the cancer community. In addition to conference poster walkthroughs, GRASP offers year-round opportunities for discussions and networking.
The idea for the poster walkthrough program was born at ASCO 2019. At that meeting, Hodgdon and an oncology researcher realized that by reviewing poster presentations together, they learned a lot from each other. After the conference, Hodgdon and Maués discussed the benefits of creating a more formal learning exchange and introduced the pilot program later that year at SABCS 2019. That’s where Denardi met the duo.
“I was at the conference when I saw Julia and Christine at their computer, and someone said, ‘You should participate in that program.’ So I walked over and said, ‘What are you doing?’” As soon as they explained the idea, Denardi signed up. Even though she is a breast cancer survivor, she was intimidated by the idea of talking to scientists and researchers. She worried about asking the right questions or knowing what to say. But her first experience with GRASP changed her perspective.
“It used to be very intimidating,” said Denardi, who now mentors other patient advocates. “But that day, we went with very small groups and started asking questions. It was such a success that we said, ‘We have to replicate this.’”
They planned to replicate the program in person at ASCO 2020, but COVID-19 forced the program online. That created some initial logistical challenges, but the GRASP team pivoted, and the virtual sessions were a success. The walkthroughs have remained online, even as ASCO 2022 brought attendees together in person for the first time in two years.
“They were virtual again this year because some people cannot travel,” Denardi said. She added that the online venue allows patients from other countries to participate. “We may do a hybrid of in-person and virtual for the next one, but we will continue doing it virtually because many patients cannot attend the conference,” she said.
WHAT IS A POSTER WALKTHROUGH?
The GRASP poster walkthrough program is open to patient advocates, care partners, scientists, and clinicians. There is no fee to participate. Each session lasts approximately 90 minutes and covers two posters. Patient advocates select the posters ahead of time via a survey and multiple rounds of voting. The session groups are small by design – usually five to six participants each – to allow for constructive conversation. Each group includes a scientist, a mentor, and three to four patient advocates, and everyone plays an important role.
Scientists serve as interpreters, explaining complex scientific terms and concepts in an easy-to-understand and accessible way.
Mentors are patient advocates who have participated in the program and understand the science. Mentors moderate sessions, keep conversations focused, and ensure advocates feel supported.
Patient advocates share their experiences to help the scientists better understand the patient perspective. They ask questions and take notes so they can share what they learn with other patients and care partners.
Ideally, the poster author also attends the session that includes their poster. While scientists can interpret a broad range of concepts, poster authors can provide additional background information and context specific to their work.
“If the poster author is available, that is fantastic,” Denardi said. “They can tell us everything that happened, including who gave them the grant and all the work behind the scenes.”
THE IMPORTANT ROLE OF PATIENT ADVOCATES
Patient advocates bridge the gap between researchers and patients. To prepare advocates for the poster walkthroughs, GRASP provides an hour-long training session via Zoom.
“Everybody can participate [in the poster walkthrough program],” said Denardi. The only requirement is to be a registered member of the GRASP network, which is free to join. “We give advocates training to teach them what kinds of questions to ask and how to guide the conversation because we don’t want it to be about ‘me’ and ‘my treatment.’ We are talking in general about the science and that particular topic, to make sure we understand it and can share it with other patients.”
Denardi believes that she and her fellow volunteers become better advocates when they not only review and discuss the posters, but really understand the science behind them, too. She is passionate about helping others and hopes that her patient advocacy efforts will create a ripple effect that benefits patients and care partners for years to come.
“The more we know as patient advocates, the better we can serve our community,” she said. “The more information we have, the more we can help other newly diagnosed patients and guide them through the process. Hopefully, at some point, I get a call, and they say, ‘I finished my treatment, and I want to do what you do. I want to be an advocate.’ That is the most amazing call that I can receive.”
GRASP will offer poster walkthroughs at the Metastatic Breast Cancer Research Conference, Sept. 7-9, the Metastasis Research Society Biennial Congress, Nov. 13-16, and the San Antonio Breast Cancer Symposium, Dec. 6-10.
For more information, visit GRASPcancer.org.