Breast Cancer Program

Dana Farber/Harvard Cancer Center Breast Cancer Advocates

The Breast Cancer Advocacy Group (BCAG) contributes an informed patient voice to breast cancer research. The advocates collaborate with breast cancer investigators within and beyond DF/HCC in planning and reviewing translational and clinical research in all its stages, with the goal of finding better treatments, improving patient outcomes, and ultimately preventing breast cancer.

Scientists and researchers frequently invite feedback and guidance from advocates on the direction of their research and its value to patients. In addition, the advocates focus on topics directly affecting the patient experience, such as tissue banking, consenting for clinical trials, suggesting outcome measures that are important to patients, identifying gaps in research, and patient education.

Advocates aspire to influence the nature of research questions to more closely reflect patient concerns, and to help bring treatments from the lab to the clinic efficiently and safely.

Research advocacy puts the beneficiary of the research – the patient – at the forefront. Breast cancer patients and survivors are in a unique position to support cancer research through active participation in research design, review, and patient recruitment. Since researchers may not have direct contact with patients, it is therefore very important for advocates to have the opportunity to provide the patient perspective. Their contributions help make scientific advances offer greater benefit to cancer patients.
Advocates come from diverse backgrounds and share an interest in science, the research process, and the desire to make a difference in the lives of future patients. Most of the advocates are current breast cancer patients or survivors.
The BCAG, which generally includes about 20 members, has substantial experience in partnering with clinical and translational researchers to generate ideas for new directions in research, and has co-developed and jointly led projects.
Ongoing education in breast cancer research is key to effective advocacy. The group meets monthly or more as needed and often invites local investigators to present their research for discussion. Many advocates attend national educational offerings from the National Breast Cancer Coalition, such as Project LEAD or the annual leadership summit.
In addition, BCAG members pursue local and national educational opportunities. Advocates have a standing invitation to attend DF/HCC Breast and GYN Cancer Center educational seminars and research programs, and 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 AACR Scientist Survivor Program and the Alamo Breast Cancer Program, and major conferences such as the annual San Antonio Breast Cancer Symposium and ASCO.
Members serve on review panels for various local and national 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 partner with investigators on funded research and in the development of research proposals. In some cases, advocates attend lab meetings to share their perspectives, and develop relationships with junior investigators.
Other examples include:
- Membership on the DF/HCC Breast Specialized Program of Research Excellence (SPORE) Project teams and committees
- Working sessions with investigators to develop new research ideas for grant funding
- Reviewing new concepts for clinical trials
- 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), Susan G. Komen for the Cure, the Patient Centered Research Institute (PCORI), 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)
Ideally, advocates join a project at the earliest possible point in the project’s development. For clinical trials, this can be early as generating ideas for new concepts. When writing grant proposals, the earlier the better. Many advocates get involved when the letter of intent is written.
There are many different ways to become a research advocate. A great way is to talk with research advocates about what they do and how they got involved in research advocacy. Most advocates begin by joining an established group at a nearby cancer center. There are local and national research advocacy organizations, many of which provide training and opportunities for advocates.

Contact Us

If you are interested in learning more about the group, or research advocacy in general, please email Susan Koegel and Paula Steeves, Co-Lead Advocates.

Testimonials

“What better way to advance breast cancer research than to partner with those who will benefit? Our advocates bring the patient voice to our research efforts, and are key members of our team. By sharing their perspectives, the advocates help influence the direction of our research and contribute to the success of our program. Ultimately, we believe this involvement will improve outcomes for individuals with breast cancer.”

Sandra S. McAllister, PhD (Brigham And Women's Hospital)
Angiogenesis, Invasion and Metastasis, Breast Cancer

“My laboratory takes a multidisciplinary approach to our pre-clinical translational breast cancer research. Working with Liz Frank and the team of DF/HCC breast cancer advocates is a crucial aspect of that approach. Partnering with patient advocates enables us to incorporate the patient perspective from conception through development of projects and preparation of funding proposals. The advocates have introduced us to clinical colleagues, forging collaborations that have influenced clinical trial design. I especially appreciate their continued efforts to support junior investigators in my lab by inviting us to present our work, asking challenging questions, providing input, and participating in our annual lab retreats. I cherish the professional partnership and personal relationships we have developed with Liz and the DF/HCC breast cancer advocates over the past decade of working together.”

Nikhil Wagle, MD (Dana-Farber Cancer Institute)

“The Breast Cancer Advocacy Group gave us valuable insights early in the process of creating our Metastatic Breast Cancer Project, in which we empower patients to share their tissue samples and experiences, with the goal of finding patterns among the data. The advocates were very enthusiastic about our work, given its focus on patient-driven research. They provided feedback on the design and usability of the website and the language we used to talk about patient partnerships.”

LINDSAY NORTHROP

"As a two-time breast cancer survivor, I am passionate about working on projects and discussing research that relates to young women and their unique experiences. I am grateful that I can represent this segment of patients and be sure that their voices and concerns are heard. It has been wonderful to partner with investigators who share their fascinating, cutting-edge research, and work with my fellow advocates who bring wisdom, compassion and thoughtfulness to each discussion."

MAGGIE CARVAN

"It’s a privilege to contribute the voice of the patient to breast cancer research through research advocacy. My fellow advocates and I bring the patient experience to research proposed by senior scientists and researchers, junior investigators, and clinicians, and have a seat at the table where research is being discussed. As a two-time breast cancer survivor, I feel very fortunate to be a member of a group focused on improving the patient experience through scientific breakthrough."