Role of Advocates in Research: The Research Advocate Network (RAN) as a Model for Advocate Participation

Authors: Judy Perotti MS, Elda Railey, Mary Lou Smith JD, MBA and Cheya Pope
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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...

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Judy Perotti, MS, is a co-founder of Research Advocacy Network (RAN) and was the former Director of Patient Services at Y-ME National Breast Cancer Organization. She authored Understanding Your Breast Cancer Pathology Report, a brochure for breast cancer patients, and is a member of the ASCO Aromatase Inhibitors Technology Assessment Panel, NCI Program for the Assessment of Clinical Cancer Tests Breast Cancer Working Group, and the NCCTG and NSABP Patient Advocacy Committees.

Elda Railey is a co-founder of RAN and formerly Director of Grants for the Susan G. Komen Breast Cancer Foundation. She has reviewed for Komen, Avon-NCI, and the CDC. She is a member of the Intercultural Cancer Council and serves on the UCSF Breast Cancer SPORE and Redes En Accion External Advisory Boards. She formerly served on the ACOSOG Patient Advocate Committee, and is currently the editor of Network News and director of the Advocate Institute.

Mary Lou Smith, JD, MBA, is a co-founder of RAN and co-chair of the ECOG Patient Representative Committee. She serves on the NCCN Breast Cancer Treatment and Screening Guidelines Committees and the North Central Cancer Treatment Group and Radiation Therapy Oncology Group Patient Advocate Committees. She is an advocate on caBIG and a community member of the IRB at Rush University Medical Center.

Cheya Pope is an Advocacy Relations Specialist, providing strategic counsel on patient advocacy issues and program planning for clients in the biotech and pharmaceutical industries. She has 10 years' experience in community relations and patient advocacy. She previously worked in Advocacy Relations for Genentech, Inc., where she was responsible for strategically developing and leveraging relationships with advocates from over 30 cancer advocacy organizatons.

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