WASHINGTON, DC (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 through a series of commitments by PCORnet, PCORI’s ambitious effort to harness health data and patient partnerships to accelerate 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 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 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:
- 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.
- 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.
- Planning a Cancer Collaborative Research Group (CRG) within PCORnet that will convene patients, clinicians and investigators to: 1) identify and prioritize top research questions; 2) develop approaches for using real-world electronic data to address unmet research needs in cancer prevention, diagnosis, and treatment; and 3) reduce disparities in cancer care and outcomes.
PCORnet, through its partner networks, has already 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, breast, hereditary ovarian and breast cancer, as well as 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 PEDSnet, which encompasses eight pediatric health systems, provides resources on pediatric cancers.
The PCORnet Cancer CRG planning committee, presently led by patients, clinicians, and investigators from the PORTAL, GPC and the ABOUT networks, will survey the landscape of potential additional partners, both inside and outside of PCORnet, and create work plans for the research group. The Cancer CRG will build on PCORnet’s experience and resources of standardized EHR, clinical 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, such as the WISDOM Trial and COMET Trial, 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.
Those interested in collaborating with PCORnet on the Cancer CRG may contact firstname.lastname@example.org. To view PCORnet’s full commitment to the White House Cancer Moonshot Website, submitted on Friday, May 27, click here.
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 that directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit 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. More information is available at www.pcori.org.