Why I Work to Bridge the Gap Between People With Cancer and Researchers
By Julia Maués
originally published in ASCO's Cancer.Net blog on May 27, 2021
Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Julia Maués was diagnosed with breast cancer in 2013 while she was pregnant. Following the birth of a healthy baby boy, Julia had tests she couldn’t have while pregnant and discovered the cancer had spread to her brain, liver, and bones. Cancer is part of Julia’s life, but it doesn’t define her. Julia’s goal is to make an impact while she is alive in the lives of others dealing with this disease. She has found meaning and purpose in working with people with cancer and researchers to make cancer research more patient-centered, innovative, and inclusive through her founding of Guiding Researchers and Advocates to Scientific Partnerships (GRASP). You can follow GRASP on Twitter. View Julia’s disclosures.
My advocacy story
I was living my life, working and making plans for the future, when 1 day I was told the 3 most difficult words I have ever heard: “You have cancer.” Like most people diagnosed with cancer, I wasn’t part of the cancer world at the time. My career was in a completely different field, and this disease hadn’t yet directly affected me or my closest loved ones. But then everything changed. I was now among the 13% of women in the United States who would be diagnosed with breast cancer in their lifetime, and among the 6% of those whose cancer was already metastatic at diagnosis. Not by choice, cancer became a part of my life forever.
After harrowing experiences of facing my own mortality due to the progressing cancer and heart issues caused by chemotherapy, my cancer started to respond to treatment. Over time, I grew a renewed sense that my “bonus time” could be spent helping and supporting others living with cancer.
In contrast to people with cancer and their loved ones who have no choice but to be immersed in cancer every day, there are many others who make a conscious decision to have cancer be a part of their lives. There are so many doctors, nurses, researchers, and other health care professionals who dedicate their lives to studying cancer and caring for people living with it. As I navigated my own treatment and helped others with cancer, it became clear that there can be silos and disconnections between people with cancer and researchers. We are all working toward the same goal—to extend and improve the lives of people living with cancer—but rarely do researchers have a chance to meet the people they’re working to help, and vice versa.
Launching a program to bridge the gap between researchers and people with cancer
The need to break down silos across roles and institutions inspired Christine Hodgdon, another young woman living with metastatic breast cancer, and me to create Guiding Researchers and Advocates to Scientific Partnerships (GRASP). GRASP is a patient-led program that connects people with cancer and researchers to exchange ideas and learn from each other. We wanted the program to represent a level playing field where each individual was an expert in their own right. Clinicians are experts in treating people with cancer; researchers are experts in the science of cancer; and people with cancer are experts in living with cancer.
We first launched GRASP at the 2019 San Antonio Breast Cancer Symposium (SABCS) and brought together people with cancer, patient advocates, and researchers to attend the poster session, which was made up of research presentations. GRASP participants talked with poster presenters and learned about the work they were presenting at the conference. It turned out that poster sessions are the perfect environment for informal, authentic conversations between people with cancer and researchers. There is no stage or microphone, and oftentimes it’s hard to tell who is an advocate versus who is a clinician or researcher. What matters is that everyone is there because they want to move the field of cancer research forward and ultimately help people with cancer.
What was originally planned as a small pilot program grew to an inaugural event of 120 participants. Researchers, people with cancer, patient advocates, and clinicians gathered, sharing stories and learning from each another. The poster presenters were honored to meet people who have personally experienced the realities and hardships of a cancer diagnosis, including people with cancer and those who care for them. Scientists and clinicians who participated in the program were invigorated by the experience and eager to return to work and make progress on behalf of those affected by cancer.
One researcher said about the program, “Patient advocates humanize the science. The best research questions come from patients. They allow researchers to prioritize what needs to be done.” To which a patient responded, “I was reminded that they [the clinicians and researchers] are human just like us.”
Adjusting our program for a virtual world
A couple of months after the inaugural GRASP at SABCS in December 2019, the COVID-19 pandemic took the world by storm. Like everything else, GRASP transitioned to a virtual setting. We had already been planning on exploring virtual options for GRASP to facilitate discussions between researchers and advocates, as we felt that the program shouldn’t be exclusive to those who were able to attend in person. Additionally, science doesn’t only happen a few times a year when large meetings take place.
Because of the COVID-19 pandemic, those plans to go virtual were accelerated, and we ran a successful virtual program at the 2020 ASCO Virtual Scientific Program. We had had over 140 participants, representing 7 different cancer types.
For this year’s 2021 ASCO Annual Meeting, we are again bringing together people with cancer, patient advocates, and researchers to discuss research from the meeting and exchange knowledge and experiences. GRASP sessions will take place the week after the ASCO Annual Meeting, on June 9 and 10. The sessions will take place at 3 different times each day to accommodate various schedules and time zones. If you would like to participate, you can join GRASP at no cost and register for events and be part of its collaborative researcher and advocate registry.
In order to attend GRASP sessions, participants will also need to be registered for the 2021 ASCO Annual Meeting. Patient advocates, patients, and survivors can register for this year’s meeting for free. To register, patient advocates can send a bio-sketch or resume to email@example.com. Meanwhile, patients and survivors can send an email to firstname.lastname@example.org and request a unique registration code.
The statistics in this post are from the American Cancer Society website (accessed May 2021).