A patient-led initiative is connecting cancer patients with clinicians and researchers, allowing these parties to exchange ideas and learn from each other, according to the co-founder of the initiative.
Guiding Researchers and Advocates to Scientific Partnerships (GRASP) was founded by 2 breast cancer survivors with the goal of opening up communication about cancer research.
GRASP events take place at cancer conferences and are intended to bring researchers, clinicians, and patient advocates together for personalized discussions about scientific presentations.
Several virtual GRASP sessions were offered at the 2021 American Society of Clinical Oncology (ASCO) Annual Meeting, and more are planned for upcoming meetings.
We interviewed Julia Maués, a metastatic breast cancer survivor and co-founder of GRASP. A related interview with Marlena Murphy, a patient advocate who has attended GRASP events, can be read here.
What prompted the idea to create GRASP, and what gaps was it intended to address?
Maués: GRASP was created from an actual experience that a patient and researcher had at the 2019 ASCO Annual Meeting. GRASP co-founder Christine Hodgdon, a metastatic breast cancer patient and advocate, was walking around looking at the immense lines of posters set up at McCormick Place.
When she ran into a friend and cancer researcher, Corrie Painter, PhD, they decided to walk and check out posters together. [Dr Painter is associate director of operations and scientific outreach in the cancer program of the Broad Institute in Cambridge, Massachusetts.]
What happened next was what GRASP is all about: They exchanged ideas and learned from each other. Sometimes, Corrie would teach Christine something. For example, when she said, “Wow, that’s a beautiful survival curve!” and Christine asked, “What does that mean? How do you know that from just looking at it?” and Corrie explained how Kaplan-Meyer curves worked.
Other times, it was Christine who had knowledge to share, like when she said, “Oh, look at this poster, talking about drug X, which we patients have a diarrhea nickname for, because it causes such bad diarrhea that patients cannot leave their house while on it.”
While diarrhea was one of the many possible side effects listed, Corrie wouldn’t know how bad it was or how patients’ lives are impacted if she hadn’t heard it firsthand from an actual patient.
We are strong believers that while patients have much to learn when it comes to cancer research, they also have knowledge to share. Clinicians are experts in treating people with cancer, and researchers are experts in the science of cancer, but patients are the experts in living with cancer, and that expertise is invaluable.