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SPOREs

Breast

Breast Cancer Advocates

Dana Farber/Harvard Cancer Center Breast Cancer Advocates

The Breast Cancer Advocacy Group (BCAG) is a group of breast cancer advocates that focuses on influencing breast cancer research to reflect patient concerns by collaborating with DF/HCC researchers in the development and oversight of research to improve patient outcomes.

Advocates come from diverse backgrounds but share their interest in science, the research process, and desire to improve outcomes for future patients. Most of the advocates are breast cancer survivors or are living with breast cancer. Advocates come from both science and non-science backgrounds, are both retired and working and have a varied level of experience with research. Many of the advocates have attended one or more of NBCC’s Project LEAD courses. In addition to their activities with the BCAG, advocates are affiliated with different breast cancer organizations including Susan G. Komen for the Cure, Living Beyond Breast Cancer, the National Breast Cancer Coalition, Stand Up to Cancer, The Metastatic Breast Cancer Network and The Translational Breast Cancer Research Consortium.

BCAG members provide an informed patient perspective to DF/HCC investigators involved in all areas of translational and clinical research. In addition, the group focuses on topics directly affecting the patient experience, such as tissue banking, consenting for clinical trials, and the sharing of research results with patient participants. The group has substantial experience in partnering with clinicians and researchers to generate ideas for new directions in research and has co-developed and jointly led projects.   

The BCAG members participate in a spectrum of research activities including:

  • Membership on the DF/HCC Breast SPORE Project teams and Committees
  • Working sessions with investigators to develop  new research ideas for grant funding
  • Reviewing new concepts for clinical trials within the DF/HCC Clinical Trials Core
  • Reviewing informed consent documents and protocols for clinical trials
  • Reviewing  grants for DF/HCC Women’s Cancer Center and SPORE funded Awards
  • Participating in ongoing research projects funded by the National Cancer Institute (NCI), The Agency for Health Research and Quality (AHRQ), Susan G. Komen for the Cure, and the  Department of Defense Breast  Cancer Research Program (DoD BCRP)
  • Serving as panelists at national and local meetings
  • Participating as external reviewers for several national organizations including DODBCRP, California Breast Cancer Research Program, Susan G. Komen for the Cure, Patient Centered Outcomes Research Institute (PCORI)

To keep our knowledge as current as possible, BCAG members pursue local and national educational opportunities. We meet monthly or more as needed and often invite local investigators to present their research for discussion. Advocates have a standing invitation to DF/HCC Breast and GYN Cancer Center educational seminars and research programs and to the annual Harvard Medical School Continuing Education Course in Breast Oncology. In addition, advocates are encouraged to attend national programs for advocates such as the NBCC Leadership Conference, the AACR Scientist Survivor Program and the Alamo Breast Cancer Program.

The group currently has 15 advocate members. Members of the BCAG include:  Penny Blaisdell, Elizabeth Cahn, Carie Capossela, Mary Ellen Colten, Paulette Cournoyer, Judy Downey, Ruth Fax, Liz Frank, Marcy Gerstenhaber, Judi Hirshfield-Bartek, Barbara LeStage, Marie Artis Levine, Carol Matyka, Karen Price, Amy Reiner.

If you are interested in learning more about the group, please contact Liz Frank, Lead Advocate at elizabeth_frank@dfci.harvard.edu.