MARP 2023: Gwen and Ahn
Gwen Manchion, Advocate and Anh Tran-Huynh, Researcher
Anh
Growing up as a breast cancer patient advocate myself, it is the curiosity and passion in learning the science of hereditary cancer running in my family that motivates me to pursue this research field. I have an incredible privilege to be trained in such a rapidly advancing translational research environment, where I have received tremendous support from not only my scientific advisors but also the patient advocates I encountered over the past three years. My graduate thesis project was directly prioritized from patient tumors data and will have clinical impact on future therapy regimens. To achieve this, I believe it is crucial to engage in early collaboration and strong bi-directional trust building with patient advocates.
Through MARP participation at MBCRC with my advocate partner, I am more aware that as researcher, we must frame our research landscape to fulfill patient’s needs more realistically by learning the disease from a patient’s standpoint. While it is important to disseminate our research results to academic experts, I also recognize the integral role of sharing our findings to the patient community to prepare for translating new benchwork data into clinical decision-making. Nonetheless, most scientific conference talks and poster presentations still incorporate numerous jargon-laden terms and technical terminology, posing a challenge for patient advocates to grasp and offer feedback. Hence, it is imperative for scientists to proactively prepare lay abstracts for their projects and enhance their communication skills to ensure the delivery of comprehensible messages.
It is also essential to emphasize that the interaction between researchers and patient advocates can be further nurtured beyond brief conversations at these scientific meetings. Scientists can establish a welcoming and friendly environment for advocates to share their treatment experiences and be open to addressing any questions or concerns that may arise. Beyond graduate school years, I aim to dedicate significant efforts to leading my own translational projects with established collaborators in the field of breast cancer, aiming to achieve more beneficial population-level outcomes. This cannot be done without the bidirectional, co-learning process that I hope to gain from MARP partnership with our MBCRC patient advocates. Therefore, we attempted to exchange more real-life stories with my patient advocate partner to drive my scientific aims and aids in better meeting the needs of our patients by addressing the precise questions they seek answers to.
Gwen
I echo everything Anh had to say. As a patient advocate, meeting scientists and researchers has over time gotten easier for me. I have gained more confidence in what I know and what I don’t, and that I’m not expected to get it all. It is helpful when researchers welcome these collaborative meetings, when scientists express their interest by listening to the patient-perspective and including patients in casual conversation or offering lab tours. Including us in the conversation of breast cancer research offers patients confidence that people do care and breast cancer is an urgent problem that people are working on every day.
We often feel as if we’re in a free fall and all control has been ripped away from us. That lack of control in your life can be debilitating. Understanding some of the science behind a disease that has taken over every aspect of our lives can offer people confidence and a greater sense of control. Knowledge is our power and power offers purpose and direction. My experience at the MBCRC conference this year reinforced my advocacy interest in research. As I continue to navigate living with breast cancer, I hope to develop a strong relationship with one or two researchers focused on my subtype or area of focus and that I can be a designated advocate to support their research grants and connection to the patient advocacy community.