An essential partnership: patient advocates and cooperative groups

Cancer patient advocates have been working with the National Cancer Institute (NCI)-sponsored cooperative groups since the early 1990s. These partnerships have evolved over time and have become integral to each cooperative group as they strive to develop and validate better cancer treatments so that patients live longer. Patient advocates are now involved in concept and protocol development in disease, modality, and administrative committees to confirm that requirements are relevant and feasible for cancer patients. Approval and activation steps also are key focus areas, as are recruitment plans. Patient advocates also participate in executive decisions in some cooperative groups to concentrate efforts on clinical trial results that improve patients' live rather than solely answering interesting scientific questions. Patient advocates also contribute collectively through the Patient Advisory Board (PAB) to the Coalition of Cancer Cooperative Groups by sharing best practices, addressing emerging research issues, and challenging cooperative group leadership to work together in new ways. These voluntary efforts with NCI and the cooperative groups endeavor to help fix problems in the research enterprise so that tangible results can be implemented more quickly for people.