Robert Collyar

Patient Advocate

Titles and Affiliations: 

  • Patient Advocate, Breast Cancer
  • Board Member, Breast Cancer Action
  • Co-Founder, Clinical Trials Information Project

Bob Collyar became a dedicated patient advocate with his wife’s first breast cancer in 1990.  He was made a board member of Breast Cancer Action by its original leader in 1991, and he helped the group take lessons learned from AIDS advocates and apply them to change the traditional view of cancer patients and the organizations representing them.

Bob and his wife Deborah pioneered the concept of cancer patient advocacy specifically focused on the research system, with emphasis on direct involvement at all levels of the process itself.  They created the Clinical Trials Information Project generating single page plain language summaries of complicated trial protocols, which led to involvement with the National Cancer Institute (NCI), substantial changes to its Physician Data Query (PDQ) system, and greatly expanded participation of patient advocates across the NCI.  He helped develop and lead the NCI Specialized Programs of Research Excellence (SPORE) advocate program nationally, has worked extensively with the Coalition of Cancer Cooperative Groups and member organizations, served on numerous committees and working groups, and interacted with hundreds of researchers in both professional and social environments.  Though starting with cancer, many of his efforts have broadened into other diseases and systemic issues working with government agencies, companies, and providers of all types.  Bob is a non-smoker lung cancer survivor, still dedicated to having patients as an integral part of the medical enterprise from the beginning, not just as an endpoint.