REsearch

Why should research matter to me?  
Beyond Pink TEAM contributes to breast cancer research through our organizational membership in the National Breast Cancer Coalition (NBCC). Several Beyond Pink TEAM members have taken the NBCC's Project LEAD® Institute and become Consumer Reviewers for the Department of Defense Breast Cancer Research Program, the California Breast Cancer Research Program, and the Patient Centered Outcomes Research Institute (PCORI).

How does National Breast Cancer Coalition (NBCC) help to secure and allocate research funds?
For the National Breast Cancer Coalition, ensuring quality research means working consistently, year after year, to ensure adequate federal appropriations for high-quality, peer-reviewed research. In addition, NBCC is committed to making sure those hard-won research funds are well-spent and that relevant research in the private sector addresses the needs of breast cancer patients. NBCC accomplishes this by demanding advocate representation on all relevant review committees and panels and through collaborations with the scientific community.

NBCC works to increase the effectiveness of breast cancer research in several ways:

• Clinical Trials Initiative: NBCC works with scientists and industry leaders to design, conduct and oversee specific clinical trials in order to increase the quality, number and participation in clinical trials.
• Department of Defense Breast Cancer Research Program (DOD BCRP): NBCC spearheaded the funding of the DOD BCRP, which involves breast cancer advocates in every stage of the decision-making process and promotes innovative models of research.
• Artemis Project®: A research project initiated in 2010, the Artemis Project is an advocate-led, innovative, mission-driven approach of strategic summits, catalytic workshops, research action plans and collaborative research efforts of various stakeholders focused on two areas: (1) Primary Prevention: How do we stop people from getting breast cancer? and (2) Prevention of Metastasis: How do we stop people from dying of breast cancer?

With these scientific-community collaborations, NBCC works to develop new research models, conduct research, design protocols, set research priorities and conduct research aimed at ending breast cancer. This work has resulted in a breast cancer preventive vaccine beginning Phase One clinical trials in 2021.

What is the focus of the research work with which NBCC is involved?
While the majority of breast cancer research is focused on finding the next treatment drug, the National Breast Cancer Coalition is focused on two issues:

1. The causes and prevention of breast cancer metastasis
2. How to prevent the disease from developing in the first instance

What role do advocates play in research?
Breast cancer advocates who are trained, educated and represent a patient constituency must be meaningfully involved in all aspects of decision-making that affect breast cancer research. This is the only way to ensure that funds are effectively spent and adequately address the causes and prevention of breast cancer, develop optimal treatments and cures for breast cancer, and focus on the best possible means to end the disease. Learn more about Breast Cancer Advocate Involvement in the Research Process.

​Learn more about NBCC and Research.

How do you evaluate information to find valid,
​pertinent research for your type of cancer?

Choose Your Web Sites Cautiously
Accuracy

• Anyone can publish anything on the Web.
• Unlike traditional print resources, web resources rarely have editors or fact-checkers.
• Currently, no Web standards exist to ensure accuracy.

Purpose

• A site’s purpose should be clear.
• Content should reflect purpose (i.e. to entertain, persuade, educate, or sell)

Who put up the site?

• Is the author qualified? An expert?
• Is there a sponsor? If so, whom?
• Is the sponsor of the page reputable? How reputable?

Bias

• Could the information be biased?
• Might the page be designed to sway opinion or sell a product?
• Is there any advertising on the page?

Up to Date

• The site’s information should be current.
• Is the page dated? If so, when was the last update?
• How current are the links?

News Story Review Criteria
Breast Cancer is often in the news and breast cancer is also big business. Can you trust what you read/hear?  Become an educated patient and learn how to distinguish between evidence and hype.  Here are a few tools to help (from Healthnewsreview.org):

• Does the story adequately discuss the costs of the intervention?
• Does the story adequately quantify the benefits of the intervention?
• Does the story adequately explain/quantify the harms of the intervention?
• Does the story seem to grasp the quality of the evidence?
• Does the story commit disease-mongering (exaggerate or oversell)?
• Does the story use independent sources and identify conflicts of interest?
• Does the story compare the new approach with existing alternatives?
• Does the story establish the availability of the treatment/test/product/procedure?
• Does the story establish the true novelty of the approach?
• Does the story appear to rely solely or largely on a news release?

We have found the following to be trusted sites to help you distinguish between evidence and hype from the latest breast cancer news.

Living Beyond Breast Cancer: includes a helpline, newsletter, and information. Survivors Helpline: 888-753-5222

Young Survival Coalition connects with other young women diagnosed with breast cancer. 

Cancer Care is a national nonprofit organization offering counseling, support, financial assistance, and education to individuals with cancer and their families. 

Iowa Cancer Consortium offers cancer information and links to resources in Iowa. 

American Cancer Society offers cancer information and services.
National Comprehensive Cancer Network® (NCCN) provides state-of-the-art treatment information in easy-to-understand language to people with cancer and their caregivers. 

National LGBT Cancer Network works to improve the lives of LGBT cancer survivors and those at risk.

National Cancer Institute offers information about cancer, breast cancer, clinical trials, cancer statistics, research and funding, and the latest news. They will also answer your questions by calling 1-800-4CANCER.

National Cancer Institute for NCI dictionaries of cancer terms, genetics terms, and cancer drugs.