MARP 2023: Katie and Hannah
Katie Edick, Advocate and Hannah Carter, Researcher
What do you get when you put patient advocates and researchers in the same room? You get a very loud room! From the outside it may have looked like organized chaos. Perhaps it looked like a conference for co-workers. From all the intense conversations these people have worked together for a long time and are chatting to catch up with each other's lives. However, what you would be witnessing is the magic of putting strangers together in a room with the shared interest of ending breast cancer. You would see people from all walks of life sharing, laughing, perhaps even crying. You would hear meaningful conversations between people living with metastatic breast cancer and researchers that work tirelessly in a lab to save their lives.
We had the opportunity to take part in the inaugural class of the Metastatic Breast Cancer Research Conference Advocate Research Program. The organization paired a patient advocate with a scientific researcher to establish a relationship for the weekend. Not only to learn from each other but with the hope to create a connection that may lead to future collaborations. Having researchers and advocates working together in tandem is essential to advance research in metastatic breast cancer.
As a patient advocate, there is something nerve wracking about sitting down and talking “shop” with a smart researcher. I initially felt worried that I would say the wrong thing, I might not understand the science and look “dumb.” I wondered if she felt this experience would be worth her time, to listen to someone who has breast cancer but is not a scientist, what do I have to offer? For me, it was exciting to hear how Hannah got interested in research and her hope for the future (to be an oncologist specializing in breast cancer). There is something contagious about hearing the excitement of Hannah describing her laboratory research and having her explain how the science could be applied in the future to novel agents in the breast cancer treatment landscape. The time and dedication that researchers put into their projects, the years it takes to earn a doctorate. The hope that their hypothesis will work and lead to phase one clinical trials.
As a researcher, sitting down with Katie was an enlightening experience. I shared her initial concerns about effectively conveying the complexities of my work, but those apprehensions quickly dissolved as our conversation progressed. Katie's genuine curiosity and dedication to understanding the scientific aspects of breast cancer research were truly inspiring. Our collaboration wasn't just about exchanging information; it was about sharing a common mission – to combat metastatic breast cancer. Katie's perspective provided invaluable insights into the real-world impact of my research, reminding me of the lives that could be positively influenced by scientific discoveries. Her passion and optimism were contagious, reinforcing the significance of our partnership in advancing breast cancer treatments. This experience underscored the profound value of bringing researchers and advocates together, transforming what may appear as organized chaos into a powerful force for change in the fight against breast cancer.
Once we started sharing knowledge and realized that we were both excited about killing cancer cells. It became easier for me, as the patient advocate, to ask questions about research even if they sounded dumb to me. It also allowed for a safe space to ask the tough questions. The “so what” questions, the “who cares” questions, to make sure that the research is truly working to stop metastasis. That it is innovative and truly working to move the needle to end breast cancer. I hoped by sharing my story, putting a face to breast cancer it will assist with instilling a sense of urgency to the research community. We need novel agents to help us live longer. I want Hannah and all the other scientists to know that their work is appreciated and vitally important. All the hours in the lab are worth it!!
Being part of MARP and collaborating with Katie has been an immensely enriching experience from my perspective as a researcher. Katie's decision to share her personal journey and become the face of breast cancer added an essential human dimension to our collaboration. It reinforced the urgency and importance of our work, highlighting the critical need for novel agents to prolong lives. I am profoundly grateful for this experience, and I want Katie and all advocates to know that their contributions are deeply valued, motivating us researchers to persist in our tireless efforts in the lab, knowing that every hour invested is indeed worth it.
Being a part of this program and meeting Hannah has afforded me the opportunity to stretch myself out of my comfort zone. In the future I will feel more confident to ask questions and engage in meaningful conversations with scientists and doctors. Patient advocates deserve to be present from the beginning of the research process to the end. We need researchers to find the cure to saving our lives; we have high standards. We want to continue with a decent quality of life and minimally invasive treatment as possible. We feel by working together we can hold each other accountable to engage in quality, high impact research for ending breast cancer.