Courtney Preusse is passionate about bringing the patient perspective to research. Courtney, a research administrator at the Fred Hutchinson Cancer Research Center in Seattle, was quite familiar with the researcher perspective, as she spent her career enmeshed in the world. However, an experience as a patient herself opened her eyes to the need to bring patient voices to research. Courtney says, “My experience as a patient partner in research began at a very personal decision point in my own clinical care around reproductive care following cancer treatment. The answers as to what to do were unclear for both physician-scientist and me as the patient.” She became involved in research ongoing at the Fred Hutchinson Cancer Research Center, thanks to two researchers who were open to including a patient voice in their work. As their partnership deepened, Courtney and her team developed and conducted multiple projects, collaborated with additional researchers, and partnered on multiple scientific presentations and publications.
Courtney also found other ways to contribute her voice as a patient to the research field. She has served as a stakeholder reviewer for the US Department of Defense and the New York Academy of Medicine, a member of the European School of Oncology breast cancer program, a leader of the West Coast Affiliate of the Young Survival Coalition, a Patient Ambassador for the Patient-Centered Outcomes Research Institute (PCORI), a chairperson for the Young Survivor Coalition’s Research Committee, and a State Leader for the American Cancer Society. She has also completed the National Breast Cancer Coalition’s Project LEAD training program and the American Association for Cancer Research’s Scientist-Survivor Program. “Ultimately,” she says, “my role is to represent the patient perspectives in research, encourage that the right research questions are asked, and disseminate research findings to patient communities.”Over the years, Courtney has realized that patient involvement in research is vital in order for research to meet its ultimate goals. “Engaged patient partners provide scientists with a missing link to evidence-based, translational medicine. It is only via open dialogue and partnership that, in medicine, we will be able to properly ask the right questions, improve upon quality and relevance of research, and better inform clinical healthcare decisions. A trend is already evident in funding agencies; they are interested in investing in translational research with clinical impact. How can we respond to these requirements if we do not include at the decision-making table the one stakeholder who has the most to gain or lose: the patient him/herself?”
Today, Courtney is on the front lines of patient involvement in research at the Fred Hutchinson Cancer Research Center. She is working on developing Partnerships in Research Integration in Science and Medicine (PRISM), a program whose goal is to create an interactive platform for scientists and patient partners that improves quality and relevance of translational research and better informs decision-making around patient-centered cancer care. Additionally, she is working with Fred Hutch/University of Washington Cancer Consortium members and breast cancer survivors to foster patient partnerships for two new research initiatives developing in holistic wellness and reproduction, infertility, and cancer at the Fred Hutch. We look forward to hearing more about the progress of these initiatives in the coming months!