MARP 2023: Carla and Brooke
Carla Lloyd, Advocate and Brooke Gates, Researcher
Participating in the MAR Program made the Metastatic Breast Cancer Research Conference (MBCRC) a different conference experience for the two of us. Carla Lloyd was accepted to MARP as a Huntsman Cancer Institute research advocate where she chairs the Breast & Gynecologic Cancers Research Advocate committee. Brooke Gates was accepted to MARP as a researcher and is a 5th year PhD candidate at the University of Utah where she conducts her research as part of the Oncological Sciences department in the lab of Dr. Benjamin Spike. We were very lucky to be put together as an advocate/researcher team. Sitting next to Brooke during the conference was really helpful to Carla especially when new terms popped up, a long acronym scrolled across the screen, or a process left her baffled. She simply leaned over and asked Brooke for explanations and clarifications. Brooke did a wonderful job teaching Carla new terminology and concepts. In turn, Brooke learned so much from Carla first as an individual but also as a patient advocate with immense knowledge and experience as an advocate at our home institution. She quickly learned that Carla asks the best questions that really got Brooke to think about the research being presented, and her own research, in a different light. This brought this researcher back to why we do the research that we do: It’s for the patients and creating better, more effective treatments with the patient experience. Advocates and researchers connecting with one another was the most meaningful part of the conference for us both. So often, we stick together in our own groups without much crossover at conferences. MARP did an excellent job of bringing advocates and researchers together in such a meaningful and educational way. It was wonderful to experience a bridging of the gaps that can occur at conferences.
We saw that MARP attracted many graduate students and postdocs to its inaugural program, igniting enthusiastic participation between patient advocates and researchers. This active participation demonstrated MARP’s success and the beginnings to bring patient advocates and researchers together. Every year, our HCI Breast & Gynecologic Cancers Research Advocate planning committee actively recruits emerging researchers to participate in our Project Next Symposium. We have had good luck getting grad students and postdocs to present their studies and participate in our poster session these past two years. However, we think that there is something we can learn from MARP organizers about recruiting emerging researchers to these kinds of research events. The MBCRC also had great in-person attendance, something we would like to increase for our Project Next symposium. With this in mind, we would like to embark on a simple study to learn how Hillary Stires and Josh Newby had such success in attracting emerging researchers to MARP and attendees to the event. What we learn can be applied to our planning for the 2024 Project Next Symposium, which we are in the midst of doing now.
In doing this exploratory research, we would also like to uncover other opportunities beyond the Project Next symposium where advocates and researchers can engage with one another. Are there other ways we HCI advocates could collaborate with the Breast & Gynecologic Cancer Center’s (BGCC) emerging researchers? MARP excelled here. We wonder what other ways we might pair BGCC emerging researchers with advocates at HCI? What might make sense for our two groups? Would there be an opportunity for us to team up with a BGCC symposium this year, for example? We would work with Dr. Alana Welm, our BGCRA Committee’s scientific advisor, to test the feasibility of these additional collaborations. We are grateful to MARP for bringing the two of us together, which spurred our thinking to come up with this proposal. We are eager to continue our amazing advocate/researcher relationship to work on this project.
Opportunities like what the MAR Program initiated for early-stage researchers and patient advocates to build meaningful, long-lasting connections and create a longstanding dialog are extensively important to conducting meaningful and impactful research that first and foremost benefits the patients directly impacted by metastatic breast cancer. Creating these spaces and opportunities for these connections to occur where both parties can learn from each other is the first step in breaking down the existing barriers between researchers and patient advocates who ultimately should be working together towards their collective goal of better understanding metastatic breast cancer and thus improving patient lives.
