Closing the Gap

Written by Tori Rodriguez

Patient advocate, Marlena Murphy was interviewed to obtain her perspective of GRASP. from the co-founders of GRASP as they describe the different programs offered for advocates without a science background.

Though cancer research is focused on helping patients — improving their survival and quality of life — there is often a gap in communication between researchers and patients.

A patient-led initiative called Guiding Researchers and Advocates to Scientific Partnerships (GRASP) is aiming to narrow this gap by creating spaces for researchers and patients to discuss emerging topics in 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. One of the sessions, Solid Tumors & Metastatic Breast Cancer — Immunotherapy & Health Disparities,” was led by Isaac Chan, MD, PhD, of UT Southwestern Medical Center in Dallas.

Among other points of discussion, Dr Chan summarized the objectives, methods, and outcomes of the research presented, periodically checking in with participants to gauge their understanding of certain terms and translating them into more familiar terms when needed.

While the group was focused and engaged, the tone of the session was casual and friendly, with one participant noting how much she enjoyed the small group setting.

To learn more about GRASP from the patient perspective, we interviewed Marlena Murphy, a patient advocate who participated in several GRASP sessions at the 2021 ASCO Annual Meeting.

From your perspective, what sets GRASP apart from other cancer research programs?

Murphy: GRASP conferences are set apart from other cancer research programs because they consider the most important people: the patients. Findings from the research are for the patient, yet patients are not considered in discussions about the science behind the research.

GRASP realizes that patients have so much to add to cancer research conferences because of the questions that may arise from patients that researchers would have never thought of. It is also an opportunity for patients to see what research is out there and to speak with scientists and researchers.

GRASP makes speaking with researchers and scientists easy, and the environment is comfortable. Patients are accustomed to speaking with their oncologist but often know nothing about research that an oncologist might be conducting or has conducted.

Patients want to know why certain medications work and why others don’t work, and those answers lie in the research. Attending a GRASP conference allows the patient to be their own advocate and advocate for others not in attendance.

In what capacity have you participated in GRASP, and what has that experience been like for you?

Murphy: I was diagnosed with triple-negative breast cancer in June 2018 and completed all treatment in November 2019. I decided to become a volunteer advocate with My Style Matters at the request of the co-founder, Tiah Tomlin. I jumped right in to be there for other patients going through active treatment while I was still going through active treatment.

As a result of my commitment to advocacy and wanting to continue to learn and be exposed to information relating to breast cancer, I was recommended by Tiah and invited to be a GRASP participant by co-founders Julia Maués and Christine Hodgdon.

I attended the first GRASP conference at the San Antonio Breast Cancer Symposium (SABCS) in December 2019 as a brand new advocate. I also attended the second conference, which was at the virtual San Antonio Breast Cancer Symposium in December 2020, and the third conference at the 2021 ASCO Annual Meeting as an advocate as well.

My experience has been very rewarding because I have made lifelong friends and connections with other members of the breast cancer community.

One important aspect that has been helpful is knowing I am not alone in my overall journey. Being able to see other women who have had or currently have breast cancer but are advocates has been essential as I continue in my role as an advocate. They are inspiring to me, especially Julia and Christine, and I am in awe of their fight to encourage others in the advocacy space.

Another great aspect of GRASP is being able to engage in conversation with so many different researchers and scientists all over the world. Never would I have thought I would have the opportunity to talk with a researcher in Amsterdam or California. Only attending a GRASP conference could allow that to happen.

What are additional components that you would like to see at future GRASP events?

Murphy: I would love to see GRASP events held more than once a year, always with a virtual option for more people to engage in the events and, of course, more researchers and scientists explaining their research. I have found their work very interesting.

From what I remember, prior to attending the first conference, I had no idea that there was even a research exhibition component of cancer research conferences. So I can just imagine attending a conference for the first time, walking up to a researcher’s poster, and having absolutely no idea what anything on their poster means.

GRASP allowed me to understand the science behind the research because the scientist is able to explain their research in a way that I can understand.

What advice would you give to other patients who may be interested in participating in GRASP?

Murphy: My first advice to other patients who may be interested is that they really should participate. Additionally, I would say do not feel overwhelmed or that the information will be too difficult to comprehend.

Lastly, participating will allow them to have conversations with their oncologist that are filled with more understanding because the depth of their knowledge will certainly be greater after participating in GRASP.

This interview was edited for clarity.

A related interview with Julia Maués, co-founder of GRASP, can be read here.