This patient-driven project brings together a unique group of patients and academic researchers to develop the infrastructure to conduct patient-centered research on melanoma prevention and early detection. Specifically, we plan to unite groups of patients from Oregon and Utah—two Western states with abnormally high melanoma rates—with researchers from Oregon Health & Science University (OHSU) and the University of Utah. During the 9-month project period, we plan to develop a new collaboration between melanoma patients in Oregon and the founders of Sol Survivors Utah, a nonprofit organization that focuses on melanoma education and advocacy. We will assess the feasibly of creating an Oregon branch of Sol Survivors, and develop a website and strategy for engaging patients in research.
By the end of the project period, we will have a formalized mission, governance structure, and communications plan. We will be ready to apply for Institutional Review Board approval and to host a patient and stakeholder symposium. Our long-term goals will be to support large-scale comparative effectiveness studies across both states, with significant numbers of patients involved in research direction, project governance, and dissemination of findings.
VIDEO: Developing an Infrastructure for Patient-Centered Melanoma Research
Katie Wilkes talks about how her funding project started and some of the exciting accomplishments that have been achieved thus far.