Dana Farber/Harvard Cancer Center Breast Cancer Advocate Group Penny Blaisdell, Patient Advocate AACR Scientist Survivor Program 2014 History and Mission Educational Activities Sharing Clinical Trial Results with Patients Meet monthly or more as needed Standing invitation to DF/HCC Breast and GYN Cancer Center educational programs Attend Annual Harvard Medical School Continuing Education Course, seminars and breast cancer related research retreats Guest lecturers and principle investigators present research at monthly meetings. The Breast Cancer Advocacy Group (BCAG) is a collaborative group of selected advocates that initially formed with the NCI funded Breast SPORE Project. It has expanded to support a broad range of activities in the DF/HCC Breast Program. 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, consenting for clinical trials, and the return of research results to patient participants. By participating in the development and oversight of treatments from the lab to the clinic in a more efficient and patient-center manner. The group has substantial experience in parternering with clinicians and researchers to generate ideas in new directions in research. Study Objectives To evaluate the process of offering and sharing clinical trials results in a subset of patients who participated in a specific clinical trial To evaluate the impact (including potential benefits and harm) of offering and sharing clinical trial results Conclusions If offered, the majority of clinical trial participants would like to receive the aggregate results from the trial Participants receiving a clinical trial results summary are not likely to experience increased anxiety or concern. The level of detail and type of information expected in a clinical trail results summary varies among participants. Clinical trial protocols should include a plan for offering aggregage results to participants. Research Activities DF/HCC 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 is to improve survival, decrease mortality and prevent the development of breast cancer. Breast Program Director: Dr. Eric Winer Partner with investigators on the development of SPORE project proposals Working sessions with investigators for new research ideas Review new concepts for clinical trials Review consent and protocols for clinical trials Participate as members of clinical trials Core Review grants for DF/HCC Women’s Cancer Center Review grants for SPORE funded Career Development Awards Participate in ongoing research as a member of the project team Participate as co-investigators on research projects Develop BCAG research projects Serve as Panelists, Media Interviews, etc Participate as external reviewers for several national organizations including DODBCRP,CA Breast Cancer Research Program, Komen for the Cure, PCORI Study Design Mail letter and response card N Card returned? Resend Y Y Card returned? Advocates Mail trial summary to patient Email trial summary to physician Y Want results? N N 16 Advocate members Most advocates are breast cancer survivors Many advocates have attended one or more of NBCC’s Project LEAD courses Advocates are affiliated with different breast cancer organizations including Komen for the Cure, Living Beyond Breast Cancer, Mass. Breast Cancer Coalition, NBCC, Silent Spring, SU2C, TBCRC, Thrive Together, Triple Negative Breast Cancer Foundation and Friends of Mel. Mail survey 2 1-2 weeks later Mail survey 1 Contact Information Liz Frank, Patient Advocate Yawkey 1238 Breast Oncology Center Dana-Farber Cancer Institute 450 Brookline Avenue Boston MA 02215 Tel: (617) 872-5873 Fax:(617) 632-1930 Elizabeth_Frank@dfci.harvard.edu