Breast Cancer Research Advocacy Network (BCRAN)
“Research advocacy brings a non-scientific viewpoint to the research process and incorporates the collective patient perspective into research, making scientific and medical advances more timely and effective for people with cancer. A collective patient perspective is created when the advocate has knowledge of others' disease experiences and conveys this collective patient perspective rather than their singular experience. Research advocates support well-designed studies and help disseminate results that lead to new and better methods to prevent, detect, and treat cancer.” – NCI Office of Advocacy Relations (OAR)
The mission of the Women's Cancer Research Center (WCRC) Breast Cancer Research Advocacy Network (BCRAN) is to build a partnership between breast cancer survivors, co-survivors and scientists to accelerate the progress of cancer research.
Our commitments are:
- To enhance the relevance, to breast cancer patients, survivors and co-survivors, of research questions.
- To connect scientists to survivors/co-survivors who can speak for the concerns of the breast cancer population, beyond their personal experiences, so that research goals and study feasibility can be developed together.
- To increase awareness about participation in research among new patients and those currently in treatment to improve clinical trial recruitment and enrollment.
- To include patients and survivors in developing critical science questions in order to increase funding for high-quality research.
Why do we need breast cancer research advocacy?
Advocacy is crucial in order to advance breast cancer research to find better treatments for breast cancer patients. Breast cancer survivors, their families and caregivers are in the unique position to support cancer research through active participation in research design, review and patient recruitment. Since researchers many times don't have direct contact with patients, it is therefore very important for advocates to have the opportunity to interact and provide the patient perspective. A patient's perspective will make scientific advances more timely and effective for cancer patients.
It is recommended that survivors be out of active treatment for at least one year before engaging in research advocacy initiatives.
Where to learn more about breast cancer research advocacy
Research education and awareness
Interested advocates are invited to participate in monthly meetings with various topics including: purpose and design of breast cancer research studies at UPCI, including novel research on breast cancer treatment, detection and prevention; planning of breast cancer research advocacy-related events; and other topics related to breast cancer research advocacy. The purpose of these meetings is to build a strong breast cancer research advocacy group here at UPCI.
Advocacy mini-retreat/patient-advocate conference
In a one-day session, advocates will receive relevant training regarding public policies, health awareness, out reach programs, breast cancer research, clinical trials, grant review, and how to apply for advocate funding. Advocates will receive a certificate upon completion of the training session.
Making the connection: What are opportunities for breast cancer research advocates?
Research and clinical trial education and awareness
We invite advocates to participate in educational sessions explaining the purpose and design of ongoing breast cancer research studies and clinical trials at UPCI in order to raise awareness in the community about these important research activities and clinical trial opportunities.
Research programs within the WCRC focus on a number of critical topics. For example, researchers are examing the effects of hormones such as estrogen on breast cancer development and treatment; the different subtypes of breast cancer, including invasive lobular carcinoma (ILC) and ductal carcinoma in situ (DCIS); the effects of different stressors on breast cancer; genetic abnormalities in breast cancer; breast cancer metastasis; and discovery of novel drug targets.
UPCI breast cancer advocacy representation at national meetings (TBCRC)
Together, our physicians, researchers and advocates are pioneering efforts to develop novel strategies for diagnosing, treating, and preventing breast cancer, helping to establish more personalized treatments, and improving early detection methods. We need advocates to present our mission at national meetings to help build a nationwide network with other advocacy groups.
Contributions to clinical trial and research project development and research grant review
We invite advocates to review and participate in developing breast cancer research projects, clinical trials, and grant review. This is an excellent opportunity for breast cancer patients to have an impact on the field of breast cancer research. (Meetings are held monthly).
Contributions to various UPCI/WCRC-related committees dealing with breast cancer research
In general, planning and conducting research is overseen by various committees at the university level. Advocates are invited to join some of these committees and contribute to the oversight of basic and clinical breast cancer research.
Financial support efforts to fund breast cancer research
Advocates are invited to organize or participate in fundraising events for breast cancer research or outreach programs together with breast cancer researchers and physicians.
Health and awareness
Advocates are invited to educate others about healthy living, recommended screening, and survivorship issues, among other topics. For more information, check out the Magee-Womens Breast Cancer Program.
Peer support programs
Magee's Breast Cancer Peer Support Program is a group of compassionate, dedicated breast cancer survivors who are available to offer support to women newly diagnosed with breast cancer.
Giving back: financial support efforts to fund breast
Advocates are invited to support fundraising events for breast cancer research and outreach programs together with breast cancer researchers and physicians. In addition, financial contributions can be made in many different ways. For example, money can be donated in the memory or support of a breast cancer patient. For more information visit the Magee-Womens Research Institute & Foundation.
Online training relevant to research advocacy
- National Breast Cancer Coalition's (NBCC) Project Lead
- Research Advocacy Network's (RAN) website
- San Antonio Breast Cancer Symposium (SABCS) Advocate Scholarships
- American Association for Cancer Research's (AACR'S) Scientist Survivor Program (SSP)
- National Cancer Institute (NCI) Advocacy Relations
- Komen Advocates in Science
Participate in regional breast cancer research-related events
November 21, 2015- Second BCRAN "Boot Camp" Session
We held our second BCRAN training session at the Magee-Womens Research Institute. Our agenda included training sessions on breast anatomy and surgical treatment (Dr. Priscilla McAuliffe), breast imaging (Dr. Wendie Berg), survivorship (Dr. Josie van Londen), and clinical trials (Brenda Lee Steele). Our keynote speaker was Carol Matyka, who is a passionate advocate working for the National Breast Cancer Coalition (NBCC).
Principle investigators also informed us about ongoing breast cancer research at UPCI (Mei Zhang, PhD; Yi Huang, MD, PhD; Susan Wesmiller, PhD, RN; Partha Roy, PhD; and Carola Neumann, MD).
October 4, 2015 — BCRAN participated in PAWS for the Cure and informed survivors about BCRAN.
May 10, 2015 — BCRAN participated in the Komen Race for the Cure on Mother's Day.
November 8, 2014 — BCRAN "Boot Camp" session.
This boot camp was our first official breast cancer research advocate training session. The event held three informative sessions: “Basics of Breast Cancer,” “Breast Cancer Advocacy,” and “Moving Forward.” Breast cancer experts from UPCI, UPMC, and Magee-Womens Research Institute were present and gave outstanding educational lectures. The day was a huge success and very well received by the advocates, who in unison indicated that they had learned a lot about breast cancer through this event.
October 13, 2014 — PA Breast Cancer Coalition 2014 Conference
Visit the PA Breast Cancer Coalition website for event recap and for more information.
October 9, 2014 — Breast Cancer Research Foundation luncheon
Breast cancer advocates met in New York City for a Breast Cancer Research Foundation luncheon, to listen to a symposium panel discussion about the current unmet needs in clinical and basic breast cancer research, and to congratulate Breast Cancer Research Foundation grantees, including UPCI investigators Drs. Adrian Lee, Steffi Oesterreich and Thomas Kensler.
June 27, 2014 — WCRC welcomed students to the OSHER program, “Advances in Women's Cancer Research at the Magee-Womens Research Institute.”
Class description: Women's cancer remains a devastating disease in the U.S. despite tremendous advances in detection and treatment and a significant decline in mortality, especially from breast cancer. To address this research need, the Women's Cancer Research Center (WCRC) was developed in 2010 as collaboration between the University of Pittsburgh Cancer Institute and Magee-Womens Research Institute, with a mission to reduce the incidence and death from women's cancer. This mission is achieved through the development and fostering of vibrant basic, translational, and clinical research aimed at translating novel discoveries into improved patient care. A major focus is the recent movement towards personalized or precision medicine, the ability to deliver the right therapy to the right patient at the right time with the goal that personalized medicine will improve patient outcomes while reducing unneeded toxicity. The WCRC aims to provide education and outstanding care to women in Pittsburgh and the surrounding region of Western Pennsylvania. Attendees will learn about recent advances in women's cancer research and will have the opportunity to tour laboratories and see the work being performed towards saving women's lives.
- Dr Adrian Lee (Co-director of the WCRC) gave an overview and goals of the women's cancer research center and update on women's cancer world wide.
- Dr. Bob Edwards (Co-director of the WCRC) provided a clinical gynecologic oncology update.
- Dr. Steffi Oesterreich focused on hormones and hormone resistance in breast cancer.
- Dr. Priscilla McAuliffe updated on DCIS and LCIS focusing on premalignant disease from a surgical point of view.
- Dr. Carola Neumann pointed out the importance of studies on the tumor microenvironment in breast cancer and the efforts undertaken at UPCI/WCRC to form a breast cancer research advocate group here in Pittsburgh.
- Dr. Shannon Puhalla focused on the role of clinical trials in women's cancer research.
- Dr. Xin Huang spoke about the importance of ovarian cancer research at WCRC.
We ended the class with a tour through of the WCRC laboratories. With 40 participants, the class was a huge success.
If you would like to learn more about OSHER or want to sign up for next year, please visit Osher Lifelong Learning Institute.
May 3, 2014 — “Decoding Annie Parker” viewing at South Side Works Cinema, organized by Robin Karlin and Cole Land (Pittsburgh FORCE outreach coordinators and BCRAN members).
This movie follows the incredible, irreverent and heartwarming story of how the paths of cancer survivor Annie Parker (Samantha Morton) and geneticist Dr. Mary-Claire King (Helen Hunt) intersect. With grace and humor the film chronicles how these remarkable women work to make one of the most important genetic discoveries of the 20th century. Dr. Mary-Claire King discovered important breast cancer genes, including the BRCA1 gene. For more info, please read "Evidence Is Evidence: An Interview with Mary-Claire King."
February 2016 — BCRAN featured in the Pittsburgh Post-Gazette
Read the story on the Post-Gazette's website: UPMC group try to demysticize clinical trials
June 2015 — BCRAN receives Susan G. Komen Pittsburgh funding for 2015/2016 to support “Building Breast Cancer Research Advocacy in Allegheny”
Grant summary: In an effort to further refine and enhance the effectiveness of translational research to standard care in our community, it is the objective of this grant to train and educate Research Advocates in Allegheny to ultimately increase the participation of breast cancer survivors and patients in breast cancer research and clinical trials. Our key activities focus on expanding the current UPCI/WCRC BCRAN (Breast Cancer Research Advocate Network) program by opening up the program at UPCI/Magee BC program sites, including North Hills (Passavant) and South Hills (Bethel Park). New BCRAN are trained to provide critical input and feedback on BC research. To increase patient accrual for clinical trials, we will educate newly diagnosed BC patients at BCRAN sites about available clinical trials. The program goals are measured by tracking attendance at the monthly meetings, as well as meeting participation, as documented on meeting minutes. Attendance at external training and any scholarships awarded, are tracked. BCRAN expansion (newly recruited advocates) are counted and asked to complete “pre” and “post” training surveys to measure the benefit of the information presented. Complementing BC research through Advocates' input is measured by pairing Research Advocates with scientists & projects. Percentage of funded grants is tracked and increasing clinical trail accrual is measured against the baseline for 2013. Lastly, a Steering Committee will directly oversee the program direction.
Project Director: Carola Neumann, MD
Project Manager: Priscilla McAuliffe, MD, PhD
Project Coordinator: Karen DiVito, BS
If you are interested in more information about the WCRC Breast Cancer Research Advocacy Network, please contact Nadine Ryan at firstname.lastname@example.org.