Abstract LB-68: Dana Farber/Harvard Cancer Center (DF/HCC) Breast Cancer Advocacy Group: A Model of Research Advocacy
Authors: Elizabeth Frank
Journal: Cancer Research (2011)

Abstract The Breast Cancer Advocacy Group (BCAG) is a collaborative group of 16 patient advocates that coalesced with the NCI-funded Breast Cancer SPORE five years ago. Since, BCAG has expanded to support a broad range of activities in the Dana-Farber/Harvard Cancer Center (DF/HCC) Breast Cancer Program. The DF/HCC is a comprehensive cancer center that brings together the cancer research efforts of seven institutions including Dana-Farber Cancer Institute (DFCI); Brigham and Women's Hospital (BWH); Beth Israel Deaconess Medical Center (BIDMC); Children's Hospital Boston (CHB); Harvard Medical School (HMS); Harvard School of Public Health (HSPH); and Massachusetts General Hospital (MGH). The mission of the DF/HCC Breast Cancer Program is to improve survival and quality of life, and ultimately prevent the further development of breast cancer. BCAG members provide an informed patient perspective to DF/HCC investigators involved in both translational and clinical research activities, and on topics directly affecting the patient experience, such as tissue banking and consenting for clinical trials. By participating in the development and oversight of research, advocates aspire to influence the nature of questions pursued to more closely reflect patient concerns and bring treatments from the lab to the clinic in a more efficient and patient-centered manner. The group has substantial experience in partnering with clinicians and researchers to generate ideas for new directions in research. Members serve on review panels for various grant mechanisms, participate in concept discussions for new projects, provide input to improve clinical trial concepts, protocols and consent documents, serve on the Clinical Trials Committee, and collaborate with investigators on funded research and in the development of research proposals. The advocates meet monthly or more frequently if needed. They attend the weekly DF/HCC Breast Cancer Program Seminars Series, monthly research review meetings, as well as larger multi-institutional symposiums. Members of the group have participated in Department of Defense (DOD) Centers of Excellence Projects at DF/HCC, Susan G. Komen Promise Grants, and the Stand Up 2 Cancer (SU2C) grants. Members attend national meetings such as AACR, SABCS, ASCO, the National Breast Cancer Coalition Annual Advocacy Conference, as well as local educational programs. BCAG members also serve on review panels for the DOD, Susan G. Komen for the Cure, The Robert Wood Johnson Foundation, and Breast Cancer SPORE. Members are affiliated with several different breast cancer advocacy organizations including the National Breast Cancer Coalition, Massachusetts Breast Cancer Coalition, Thrive Together, and Susan G. Komen for the Cure. Over the past five years the group has increased its visibility and presence within the DF/HCC. In addition, the BCAG has developed its own research projects and is currently working on a pilot program on how to return clinical trial results to participants. Future plans include developing new ways to enhance the group's ability to support and improve the research enterprise. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 102nd Annual Meeting of the American Association for Cancer Research; 2011 Apr 2-6; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2011;71(8 Suppl):Abstract nr LB-68. doi:10.1158/1538-7445.AM2011-LB-68