October is National Breast Cancer Awareness Month, an annual campaign to raise awareness of breast cancer risks, the value of screening and early detection, and treatment options available. Although symbolic loops of pink ribbon put a spotlight on the disease every October, stamping out breast cancer is a year-round effort for the National Patient-Centered Clinical Research Network, PCORnet, which was founded in 2014 as an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). Here, we are highlighting two PCORnet partner networks—the American BRCA Outcomes and Utilization of Testing (ABOUT) network and the Greater Plains Collaborative (GPC)—that are not only committed to their respective organizational mission to combat this devastating disease, but also joining forces to do so via PCORnet’s new Cancer Collaborative Research Group (CRG).
ABOUT Co-PI urges Empowerment Through Genetic Counseling and Testing
ABOUT is a PCORnet Patient Powered Research Network (PPRN), or group of patients motivated to play an active role in research to further health outcomes. ABOUT’s members are specifically focused on genetic factors that cause an increased risk for breast, ovarian, prostate, pancreatic, and other cancers.
Sue Friedman, co-principal investigator for ABOUT and founder of Facing Our Risk of Cancer Empowered, Inc. (FORCE), recently published a moving blog on AstraZeneca’s website sharing her own journey as a breast cancer survivor that highlighted the genetic link between breast cancer and other hereditary cancers, such as ovarian cancer.
Sue encourages higher-risk women to “connect the hereditary dots” and empower themselves by speaking with experts knows as genetic counselors and considering genetic testing, even when the process may make us uneasy. Her message: “this information is too important to be left to chance.”
GPC’s Breast Cancer Cohort Survey Puts Patient Focus Front and Center
GPC is a PCORnet Clinical Data Research Network (CDRN) of 12 leading medical centers in eight states committed to a shared vision of improving healthcare delivery through ongoing learning, adoption of evidence-based practices, and active research dissemination.
Dr. Betsy Chrischilles, director of the University of Iowa’s Health Effectiveness Research Center is currently leading breast cancer outcomes research studies within the GPC in close collaboration with Cheryl Jernigan, GPC’s lead patient advocate. Using the network’s tumor registries on stage 0-3 breast cancer patients, GPC has developed and administered a survey designed to learn from the experiences of GPC’s breast cancer patients.
“This was a true example of a research effort in which patients were engaged early on and had a key voice in determining questions of interest,” said Cheryl. “For example, while questions related to post-diagnosis quality of life were not a high priority for investigators, patients were eager to learn more, and so these questions were included based on that feedback. This is just one way PCORnet’s unique infrastructure puts the needs of people front and center to drive improved health outcomes.”
GPC’s survey yielded interesting insights that could inform patient care decisions: 10 research papers are currently in development documenting its results, and four of those abstracts have been accepted at the upcoming San Antonio Breast Cancer Symposium.
Cancer Research Partners in the White House Cancer Moonshot Program
In addition to their individual efforts, GPC and ABOUT are also partnering in the creation of PCORnet’s Cancer CRG currently in development as part of a commitment that PCORnet made to support the White House Cancer Moonshot. PCORnet’s Cancer CRG will aim to bring together teams of patients, clinicians, and investigators to prioritize our nation’s top cancer research questions, develop approaches for using real-world electronic data, and reduce disparities in cancer care and outcomes.
“United by PCORnet’s mission to drive efficient, people-centered research, I am proud that networks like GPC and ABOUT are changing the way we learn about and tackle breast cancer, an all-too-prevalent condition,” said Betsy.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.