Kaiser Permanente Washington Breast Cancer Surveillance Registry

What is the Kaiser Permanente Washington Breast Cancer Surveillance Registry?

Kaiser Permanente Washington has been committed to breast cancer research for decades. In 1985, the organization launched a breast cancer screening program that evolved into the Kaiser Permanente Washington Breast Cancer Surveillance Registry. The registry collects different types of data that are important for breast cancer research, including:

• Risk factors
• Screening outcomes
• Cancer diagnoses and treatments
• Survival

In 1994, with funding from the National Institutes of Health (NIH), the registry became part of the national Breast Cancer Surveillance Consortium (BCSC). Six BCSC registries across the nation collect data related to breast cancer and breast cancer screening.

Through its Statistical Coordinating Center, the BCSC combines de-identified data from the six registries to create the largest collection of breast cancer-related data in the nation. BCSC data come from a representative sample of more than two million women from all over the United States. This large data set allows researchers from the BCSC and elsewhere to study ways to increase the quality of breast cancer screening and improve survival. 

More about the BCSC: For women who get screened at Kaiser Permanente Washington

Women who get screening mammograms at Kaiser Permanente Washington are asked to complete a risk factor questionnaire during their mammography appointments. This questionnaire provides us with updated information about their health, family history, breast cancer risk factors, and other important information.

Women can opt out of having their data used for research purposes at the time they complete the questionnaire. We ensure that data are protected and that we are in compliance with the Health Insurance Portability and Accountability Act (HIPAA) of 1996 and Institutional Review Board (IRB) requirements.

Answers to common questions

What types of research do you do with my information?

Kaiser Permanente Washington has done more than 30 research studies on breast cancer since 1973. Our studies focus on:

• Finding factors that may affect a woman’s chances of getting breast cancer
• Finding ways to diagnose breast cancer sooner
• Increasing the number of women who have a good outcome after having breast cancer

I’ve filled this questionnaire out before. Why do I need to do it again?

Answering these questions again is important for two reasons. First, our research depends on having specific information to link to each mammogram we study. Second, some of your answers may change over time. If you’ve had a mammogram since March 2016, your answers may now be part of your electronic medical record. Answering these questions each time ensures your doctor has up-to-date information about your breast health so that you can make decisions together about future breast cancer screening.

How do you protect my privacy?

Protecting your privacy is a critical part of our research. Federal regulations protect research records even more than your general medical records. A special committee at Kaiser Permanente Washington reviews all the research we do to make sure we’re taking all the rights steps to protect your privacy. All Kaiser Permanente Washington researchers also sign a confidentiality pledge that requires them to keep your information private.

All the information we collect for research is stored on secure, password-protected computer systems. In our records, we label your health information with a code number and keep it separate from your name and other information that could identify you.

Who do I contact if I have questions?

• If you have questions about breast cancer research at Kaiser Permanente Washington, please call Research Associate Erin Bowles, MPH, at 206-287-2708.
• If you have questions about your rights as a research participant, please call the Kaiser Permanente Washington Human Subjects Review Office at 206-287-2919.

More about the BCSC: For scientists and policymakers

The BCSC was created in 1994 in response to the 1992 Mammography Quality Standards Act that mandated evaluating the performance of screening mammography in community practice with related breast cancer outcomes.

Since 1994, women aged 18 years and older have become part of BCSC research when they receive a breast imaging examination at certain radiology facilities in Chicago, New Hampshire, North Carolina, the San Francisco Bay Area, Vermont, or Washington State (Kaiser Permanente Washington). Data from women at each of these sites are combined to form a cohort of 2.2 million women (5 million breast exams) from 100 radiology facilities in six states as of 2015. They represent the racial, ethnic, geographic and socioeconomic diversity of U.S. communities that are the key to research on cancer causes and ways to find cancer early—or even stop it from developing. As of 2015, these resources have led to more than 600 peer-reviewed manuscripts.

Here is a snapshot of the data the BCSC collects through each of six registries and other sources:

BCSC research has been translated into practice and influenced policy

As an unmatched resource for breast cancer screening research, the BCSC has made many important contributions that have improved screening policies and guidelines and benefitted women around the world. Here are some key examples:

• Provided key data informing breast cancer screening guidelines for the United States Preventive Services Task Force and American Cancer Society and contributed to two Institute of Medicine reports,  Assessing and Improving Imaging Interpretation in Breast Cancer Screening and 2013 National Cancer Policy Summit.
• Helped establish breast density as an independent risk factor for invasive breast cancer.
• Created publicly available, web-based breast cancer risk calculator and free iPad and iPhone apps.
• Provided performance benchmarks, quality standards, standardized survey format, and influenced other revisions for 4th and 5th editions of American College of Radiology BI-RADS™ manual.
• Worked with mammography software vendors to enhance data utility without disrupting clinical practice and to incorporate BCSC risk-score for clinical use.
• Established lack of benefit of Computer Assisted Detection (CAD).