PCORnet, PCORI's Health Data Initiative, Commits to Advance White House Cancer Moonshot

WASHINGTON, D.C. (June 29, 2016) — The Patient-Centered Outcomes Research Institute (PCORI) today announced its support of Vice President Joe Biden’s Cancer Moonshot program to accelerate progress in cancer research and care. PCORI's support includes a series of commitments by PCORnet, the institute's ambitious effort to harness health data and patient partnerships to increase the pace and power of clinical research.

PCORnet, the National Patient-Centered Clinical Research Network, is a unique collaboration involving 33 individual partner networks working to help the nation conduct clinical research faster, more efficiently, and at lower cost than is currently possible by incorporating patient health information and other data. PCORnet launched with PCORI funding in 2013 and expanded in 2015.

"We and our PCORnet colleagues are delighted to work with the White House Cancer Moonshot Task Force, federal agencies, and private sector partners to support the Moonshot’s mission to advance the vital research needed to offer people with cancer and their families more and more-effective care options,” said PCORI Executive Director Joe Selby, MD, MPH. “This exciting commitment by PCORnet is a natural extension of PCORI’s mission to fund research designed to show which care choices work best for whom under what circumstances, based on outcomes important to patients."

To support the Cancer Moonshot, PCORnet commits to:

1. Enhancing its highly representative national clinical research network—which includes data from more than 110 million patients and supports a learning healthcare system—to allow cancer and other large-scale research to be conducted with greater quality and efficiency
2. Creating data tables that include descriptive characteristics of patient cohorts treated for the most common types of cancer—including breast, colorectal, prostate, lung, and melanoma—within the 130 healthcare systems affiliated with PCORnet’s partner networks
3. Planning a Cancer Collaborative Research Group (CRG) within PCORnet that will convene patients, clinicians and investigators to: identify and prioritize top research questions; develop approaches for using real-world electronic data to address unmet research needs in cancer prevention, diagnosis, and treatment; and reduce disparities in cancer care and outcomes

PCORnet, through its partner networks, already has made substantial progress in supporting high-quality, patient-centered cancer research. Researchers involved with PCORnet’s partner networks have built observational data sets based on large cohorts of patients with colorectal, hereditary ovarian and breast, and pediatric cancers. The vast scale of PCORnet also supports research in rare cancers. 

Among PCORnet partner networks with major investments in cancer research is the American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT PPRN), a patient-driven network focused on hereditary breast and ovarian cancer. In addition, the Patient Outcomes Research to Advance Learning network (PORTAL) has developed a colorectal cancer cohort with detailed clinical data from more than 16,000 patients. The Greater Plains Collaborative network, which includes eight National Cancer Institute-designated cancer centers, has built a large breast cancer cohort. And Pediatric Learning Health System (PEDSnet), which encompasses eight pediatric health systems, provides resources on pediatric cancers.

The PCORnet CRG planning committee, composed of patients, clinicians, and investigators, will survey the landscape of potential additional partners, both inside and outside of PCORnet, and create work plans for the research group. The CRG will build on PCORnet’s resources of standardized EHR, clinical data, and patient-reported data. The planning group will seek funding from PCORI to establish the research group by October of 2016.

In addition to its support of patient-centered cancer research via PCORnet, PCORI has awarded nearly $157 million to support comparative clinical effectiveness (CER) studies related to cancer. These patient-centered studies compare two or more available options for cancer care with the goal of determining which works best for which patients given their needs and preferences. Among them are studies focusing on cancer survivors’ needs as well as on prevention, screening, and treatment.

These studies include the Wisdom study, which is comparing individually tailored breast cancer mammography screening to routine annual screening, and the COMET Trial, which is comparing the outcomes associated with immediate treatment versus watchful surveillance of ductal carcinoma in-situ (DCIS). Another study is comparing acupuncture with a type of psychotherapy for treating insomnia in cancer survivors, and yet another is exploring whether children who have received intensive chemotherapy for acute myeloid leukemia do better staying in the hospital or being monitored at home.

These are just a few of the dozens of PCORI-funded cancer CER projects that involve patients, family caregivers, and other stakeholders as active members of the research teams in a patient-centered approach to CER.

Those interested in collaborating with PCORnet may contact [email protected]. Click here to view PCORnet’s full commitment to the White House Cancer Moonshot.

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About PCORI

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 continuously seeking input from a broad range of stakeholders to guide its work.

About PCORnet

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 comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research. The network directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.