Background

Many funding solicitations, including those issued by LBCA, include a requirement for scientists to engage advocates (sometimes also referred to as “research advocates” or “patient advocates”) in the application and grant implementation processes. Research/patient advocates provide an essential perspective on the design of a research study or an application for funding. In working with scientists, research/patient advocates can help provide a patient experience viewpoint on how a study might feel or work for individuals in cancer treatment; they can help to develop a summary of the research that is easy to understand for the public; and/or they can pose key questions about the ultimate impact on patients of any proposed research study. The patient perspective is an important component of developing meaningful research studies.

LBCA is often contacted by researchers seeking patient advocates with experience and/or training in research advocacy. Our aim is to be ready with a list of research advocates that includes information about their training and experience, so that we can share a name, contact information, and past experience with those researchers. LBCA does not “match” scientists to research advocates but rather provides the Research Advocate Registry (either in its entirety or with selected advocates based on need and/or geography) to the researcher. Researchers are then responsible for reaching out to advocates directly. 

Are you interested in working with researchers?

The Lobular Breast Cancer Alliance (LBCA) is seeking to build a registry of research/patient advocates. If you are interested in working with researchers as a research advocate, please consider adding your name to our registry.

While some training may be preferred, it is not required to be part of the Research Advocate Registry. If you’re interested in being a research advocate but do not yet have the experience, we encourage you to learn about research advocacy and training opportunities by visiting our Research Advocacy Toolkit. 

LBCA also maintains a Research Advocate email list specifically to share information on upcoming training and educational opportunities. If you have questions about the ILC Research Advocate Registry or would like to be added to our Research Advocate email list, please email us at info@lobularbreastcancer.org.