Role of Advocates in Research: The Research Advocate Network (RAN) as a Model for Advocate Participation
Authors: Judy Perotti, Elda Railey, Mary Lou Smith, Cheya Pope
Journal: Journal of the National Comprehensive Cancer Network (2006)

After many decades of academia-and government-driven research in the cancer arena, patient advocates are beginning to play an influential role in the research process.Historically, advocates were not broadly included in research discussions and decision-making, or they were involved as token representatives of the patient community, often without the knowledge or ability to actually influence research.Although this trend has been reversing slowly, as cooperative groups and other institutions make efforts to incorporate advocates in research, many issues must still be resolved.Questions include: Are all patient communities represented by the advocates who currently participate in these venues?How knowledgeable are those advocates about the fundamentals of research and science?Even more importantly, how productive are the discussions between advocates and researchers, and can advocates actually influence the direction of cancer research?Involving advocates in all aspects of cancer care has a huge upside.The patient advocacy movement has changed the face of cancer research by doubling National Institutes of Health (NIH) funding, assisting in the development of the innovative Department of Defense (DOD) research program, and lobbying federal and state governments to provide insurance coverage of new drugs and routine patient care costs in clinical trials and to create treatment appeals mechanisms.Patient advocates have also provided invaluable input into selected research processes, with increasing numbers of advocates within the patient community pushing for more inclusion in this realm.As the involvement of advocates in research expands, so does the need for training and support to educate and empower advocates to enhance their efficacy.The Research Advocacy Network (RAN) is an advocacy organization that strives to involve patient advocates in all aspects of the research process.We founded RAN 3 years ago to involve more advocates in the design and conduct of cancer research and to equip them for effective interactions at these assignments.Although many influential organizations already existed in the advocate community, they have been focused on other aspects of patient advocacy such as fundraising, lobbying, policy issues, or increasing disease awareness.However, support is clearly necessary for those interested in research advocacy which is simply advocacy that focuses on the research process and incorporates the patient perspective.Research advocates work with scientists to help advance common goals, such as the development of more effective treatments for patients or the implementation of disease prevention initiatives.By fostering interactions among advocates, researchers, and organizations, we believe the design and prioritization of research ideas can be influenced.Advocates must be armed with the tools necessary to positively impact all aspects of the research continuum, including the design, conduct, and reporting of cancer research.Specifically, advocates involved with clinical trial design must be trained to ask the questions that are essential to patients.