MARP 2023: Lianne and Michelle
Lianne Kraemer, Advocate and Michelle Williams, Researcher
Despite sharing an overarching common goal to improve quality of care provided to cancer patients, patient advocates and researchers traditionally work independently of each other. Two main reasons why these groups rarely overlap or come together to form joint advocate-researcher teams are: 1) because it is easier to keep the status quo, and 2) members of either group may be unaware of the benefit of collaboration. Often researchers do not seek collaboration with patient advocates until they have a looming grant deadline and need a letter of support for submission. This approach precludes patient advocates from becoming true partners with input on the scientific goals of the proposal. To address this separation between patient advocates and researchers, the Metastatic Breast Cancer Research Conference (MBCRC) Advocate Researcher Program (MARP) was initiated in Park City, Utah in August 2023. The goal of this program is to bring together advocate and research pairs with the hope they will form long lasting partnerships intended to transform both the work of the advocate and researcher, and possibly the field of metastatic breast cancer research.
Our MARP partnership is comprised of Lianne Kraemer, a patient advocate who has been living with metastatic breast cancer for 7 years, and Michelle Williams, a postdoctoral fellow in the sixth year of training at the University of Colorado Anschutz Medical Campus. Both of us had previous interactions with our counterparts, researchers for Lianne, and patient advocates for Michelle. Through these meetings we learned how valuable, and sometimes transformational, these interactions can be. For example, Michelle attended a Guiding Researchers and Advocates to Scientific Partnerships (GRASP) poster walk-through where a discussion with advocates reinforced her dedication to study breast cancer liver metastasis when she starts her own lab. Lianne was invited to spend a day touring the lab of Diana Cittelly’s, PhD. These experiences motivated us to be members of MARP.
Throughout our time in Utah and subsequent meetings, we had to overcome common barriers to interacting such as feeling rude or insensitive for researchers and interrupting or asking silly questions for the patient advocates. At MARP, we first met at a formal session and had ~45 minutes to discuss a set of provided questions. This structure allowed us to simply gain an understanding of each other’s perspective but did not provide time to break down these barriers. Our second interaction occurred during the poster walk-through at the MBCRC. During this meeting these barriers started to crumple; however, the environment made conversation or interaction challenging because it was loud and busy. Our third meeting was at the 10-year celebration of Theresa’s Research Foundation. This was our least structured interaction but the most informative of the conference during which we discussed Michelle’s research experience and goals in more depth. The free exchange of information during this interaction was possible due to the prior interactions that allowed us to become more comfortable and familiar with each other.
Our most recent meeting was held over Zoom after the MBCRC and MARP had ended. We met with the intension of discussing this blog post, but the interaction turned into an incredibly open and productive conversation that touched on everything from helping Lianne distinguish between basic science research vs translational research, to the website Lianne had co-founded as a resource for patients with breast cancer brain metastases (MBCbrainmets.org). Throughout this month of interaction, we’ve demonstrated the importance of researchers and advocates investing time to create the most beneficial partnership. Advocates should be involved early in the research projects when the ideas for a proposal are just forming so they may have a strong impact on the research direction. We are hopeful that more programs will utilize the format developed by MARP in order to advance the understanding of how critical these partnerships are. It is our belief that this will usher a change in the status quo and inevitably lead to more meaningful research.