The ATHENA Breast Health Network proposes to change the way breast cancer prevention and treatment is delivered by developing a new, integrated system that uses data from 5 of the University of California (LJC) medical centers. By using technology to gather key data and working collaboratively, researchers and clinicians hope to develop new evidence-based interventions that will carry the field forward.
Laura Esserman, MD, director of the UC San Francisco Carol Franc Buck Breast Care Center in San Francisco, California, who initiated the program, saw some basic problems with how research informs prevention and treatment. For example, screening and prevention science are not well integrated with advances that have been made in treatment, she notes. “We want to create a new economy of learning,” she says. “We are going to give everyone the proper incentives and tools to make things better faster by blurring the line between research, clinical care, and quality improvement to improve outcomes.” She likens ATHENA to the Framingham Heart Study, which has followed generations of patients to gain important insights into cardiovascular disease.
Assembling a Data Network
ATHENA will create a statewide network of UC physicians and 150,000 women who are being cared for at UC medical centers and clinics. From the time of their first mammogram, these women will receive care tailored to their personal health situation and will be followed for many years to determine the best ways to prevent, screen for, and treat the disease. “One of the things I've learned in talking to women is that they want to know what they need to do in their personal situation,” Dr. Esserman says. “And right now there is a huge gap between what we're learning through research and getting it out to the public.” For example, breast cancer risk assessment is not routinely performed in primary care, nor do physicians know who is at risk for certain types of cancers, she notes.
Dr. Esserman and other ATHENA leaders hope to bridge that gap. Using new electronic medical record (EMR) technology, they will collect specific, structured data from all 5 centers through a uniform platform that will enable clinicians and researchers to query and learn from the data. “tt's a change in how we collect, store, and organize information as well as integrate the process of care,” she says. “We also hope that if we share our information with insurance providers, and they sec our utilization and how we do things, we won't have to do preauthorizations, which is a waste of time and money for us and for them.”
The process is meant to be highly patient-centered because ATHENA will rely on information that patients provide and will give them information on recommended lifestyle changes and new treatments. Healthy women who are enrolled in the network will undergo mammograms and complete an online personal medical profile that they can continue to update and access as long as they participate in the ATHENA program. They also will provide blood samples, which will be stored for future testing and research. Their health information data will be run against 4 different risk models, and those patients who are found to be at high risk will be referred to either a genetic coun selor or a health coach who can assist with a lifestyle intervention program. “It's a much more holistic approach for healthy women,” says ATHENA Executive Director Kathy Hajopoulos, MPH.
Patients are currently enrolling in the network, which is based at the medical campuses of UC Davis, UC Irvine, UC Los Angeles, UC San Diego, and UC San Francisco.All women will be closely monitored for many years, and those who are diagnosed with breast cancer will have access to the most advanced personalized treatments and molecular biomarker tests such as Oncotype DX, Mammaprint, and others in development.
ATHENA has received a 3-year, $5-million grant from the UC Office of the President, which sees the program as a model that can be adapted to other diseases. Already, some UC medical faculty are discussing developing such a network for prostate cancer. In addition, the Safeway Foundation has provided $10 million for the network. Although the demonstration project does not yet have funding for the full 10 years, principal investigators at each campus are seeking additional funding, Hajopoulos notes.
“We said it'll be 10 years,but I hope it will last forever— I hope it will become a new standard of care that will be self-sustaining,” Dr. Esserman says.
The network includes 3 clinical care and research teams that will address prevention/screening, diagnosis/ treatment, and survivorship/follow-up. Numerous core support working groups also have been established. These teams will address issues ranging from universal fixation as a way to standardize pathology and biomarker testing to how to assess women at high risk and engage them in prevention strategies.
Another issue that ATHENA will address is the “over-biopsying” of many women who ultimately will not have breast cancer. For example, the Breast Imaging Reporting and Data System (BI-RADS) assessment category 4 indicates a suspicious abnormality on a mammogram and suggests that a biopsy should be considered; however, the range of probability of the abnormality being cancer is between 2% and 95%. ATHENA may give women with a BIRADS category 4 result the option of active surveillance. They also will pool mammography samples from all 5 centers in an effort to help standardize how physicians interpret these results, Hajopoulos says.
In an effort to ensure that ATHENA truly is patient-centered, the network is conducting focus groups with women throughout California to understand what resonates with them in terms of entering their data online, receiving information, and having valuable interactions with their physicians. “We're making sure the patient is driving the changes we're implementing,” Hajopoulos says.