Background: One in eight women will develop breast cancer in her lifetime. It is estimated that, in 2018, more than 3 million women were living with a history of breast cancer in the United States, and that 266,120 new cases of breast cancer were diagnosed in women and 2,550 in men. Worse yet, it was estimated that 40,920 women and 480 men in the United States would die from the disease in 2018.
Fortunately, the medical community’s understanding of the biological and genetic processes involved in breast cancer has improved over the last several decades, which has led to an explosion of research into the value and effectiveness of a number of new diagnostics and treatments. As a result, patients increasingly face many difficult risk/benefit trade-offs when considering their options. The importance of patient-centered outcomes research (PCOR) and trained advocates to inform this research is greater than ever before.
Proposed Solution to the Problem: A flagship NBCC program since 1995, the Project LEAD Institute is a free, rigorous science course for lay advocates on the language and concepts critical to understanding breast cancer research. Annually, this program empowers 50-60 new breast cancer advocates, equipping them with the skills and confidence needed to participate in breast cancer research—from grant review, to trial design, to dissemination of key results. NBCC also hosts a yearly summit and ongoing virtual training on key topics.
As a new addition to the training and programing that NBCC makes available to breast cancer research advocates, for this project, NBCC proposes to expand the capacity of its virtual training to create a structured Learning Network offering trainings specifically on breast cancer-related PCOR and comparative effectiveness research (CER) approaches and methodologies. The program will be available to 2,000+ breast cancer advocates and dozens more who will participate over the next two years.
Objectives: NBCC’s objective is to build the capacity of its ongoing training for existing and future Project LEAD graduates by creating a comprehensive and structured PCOR/CER Learning Network that will enhance advocates’ skills and knowledge around PCOR/CER in breast cancer, and advocates’ critical role in informing this research.
Activities: Guided by the results of a needs assessment conducted in September 2018, of former Project LEAD graduates, NBCC has identified a host of training activities desired by advocates that will be used to shape the structure and delivery of ongoing training through the Project LEAD Learning Network. NBCC will develop a four-part quarterly webinar series (presented by live webinar and online in enduring form) specifically focused on PCOR/CER issues in breast cancer research.
Outcomes and Outputs (projected): NBCC will develop an evaluation plan with a mix of qualitative and quantitative measures to assess the short- and long-term impact of NBCC PCOR/CER training on advocate activities in the field of breast cancer-related PCOR. Data will be derived from interviews and surveys of participating advocates. A key outcome of this project will be to strengthen advocates’ understanding of and meaningful participation in breast cancer-related PCOR/CER across the country.
Patient and Stakeholder Engagement Plan: An advocate committee will help inform the curriculum development activities, moderate and facilitate Learning Network activities, and help promote the trainings.