The Office of Community Outreach and Engagement, a component of the UF Health Cancer Center, works in partnership with community members, patients, families, clinicians, health system leaders, policymakers and UFHCC scientists to reduce the cancer burden in the 22 counties we serve in North Central Florida.
The UF Health Cancer Center Community Outreach and Engagement Speaker Series is designed to bring together cancer researchers, clinicians, community members, stakeholders, students and cancer health advocates to interact with expert guest lecturers whose work aims to advance collaboration between academics and community partners. The goal of the series is to disseminate information about successes and challenges to accelerate understanding of community-engaged research. Each free lecture is followed by an interactive Q&A session.
The inaugural lecture for the Community Outreach and Engagement Speaker Series was held on Aug. 27 and featured Sue Friedman, D.V.M., the founder of FORCE: Facing Our Risk of Cancer Empowered. FORCE is a non-profit advocacy organization that is celebrating 20 years of making a positive impact upon the lives of the patients, families and caregivers affected by hereditary breast, ovarian and related cancers. FORCE provides support and education for those who are navigating risk management and treatment decisions.
Friedman presented on the ABOUT Patient-Powered Research Network, a partnership between FORCE and the University of South Florida, which was established as part of the National Patient-Centered Clinical Research Network (PCORnet). ABOUT has worked with patients to design tools and resources to promote patient engagement in all phases of the research process – from design and implementation to evaluation and dissemination. In addition, Friedman shared some of the FORCE patient-centered strategies for clinical trial enrollment, including personalized search tools, plain language study eligibility and results summaries, and relevance ratings of clinical studies and media coverage. She emphasized that ABOUT’s success hinges on a multi-stakeholder model that brings together not only patients and practitioners but also researchers and policy advocates.
In addition to explaining some of the challenges with hereditary cancer research, including the technical jargon used to write study information and clinical trial competition for patients, Friedman noted that hereditary cancer scientists may be unaware of the process of patient engagement and the tools available to promote success. Project COGENT (Customizing Consumer GENerated Tools to Engage Researchers) is ABOUT’s recent PCORI-funded award that aims to assess researchers’ attitudes, preferences and behaviors for engaging patients in the research process. The project collaborators are guided by the COGENT Steering Committee, which includes COE Program Director Sarah Szurek, Ph.D.
Regarding COGENT’s aims, Friedman said, “By providing investigators with better tools to engage patients and creating additional pathways for patients to provide meaningful contributions to research, we hope to increase the engagement in hereditary cancer research. Working with all stakeholders, we hope to reach a broad audience with tools that are usable and generalizable to research for all conditions.”
For more information about the Office of Community Outreach and Engagement, please visit www.cancer.ufl.edu/community/