1. 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
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
Tel: (617)
Fax:(617)