The New York City Clinical Data Research Network (NYC-CDRN) has been approved for a three-year, $8.5 million funding award by the Patient-Centered Outcomes Research Institute (PCORI) as part of the second phase of the development of the National Patient-Centered Clinical Research Network (PCORnet).
This funding award continues PCORI’s support for the NYC-CDRN, an innovative effort that aims to create an accessible, sustainable, scalable clinical data network to facilitate patient-centered research, learning healthcare systems, and a national research network. The network provides a range of opportunities for investigators to conduct observational studies and multi-site clinical trials, as well as disseminate research to medical and patient communities, while also providing investigators with expert guidance for engaging patients, clinicians, and caregivers.
“By forming this network, we have been able to establish a dynamic research infrastructure. Our database already contains rich, robust data on 40 million encounters from 4 million patients, and it will continue to grow as we evolve — its potential is quite remarkable,” said Rainu Kaushal, M.D., M.P.H., chair of the Department of Healthcare Policy and Research at Weill Cornell Medical College and physician-in-chief of healthcare policy and research at NewYork-Presbyterian/Weill Cornell Medical Center. “I’m so pleased that we’ve been able to build this foundation and now, with this Phase II funding approved, we can use the infrastructure to help facilitate critical research to improve healthcare delivery across the nation.”
Dr. Kaushal, an expert in healthcare quality, patient safety, and information technology, leads the NYC-CDRN as principal investigator.
The groundbreaking project is a unique collaboration of over 20 New York City organizations, including Columbia University, Montefiore Medical Center, Mount Sinai Health System, New York University Langone Medical Center, NewYork-Presbyterian, Weill Cornell Medical College, the Clinical Directors Network, the New York Genome Center, and the Biomedical Research Alliance of New York.
The first phase of the project focused on creating an effective governance structure, establishing privacy and security policies to protect patient data, developing a centralized technical architecture to store data, and aggregating clinical data from five medical centers and three Federally Qualified Health Centers across New York City. In 18 months, the NYC-CDRN has succeeded in creating a de-identified central data repository with complete clinical data for almost 4 million New Yorkers and establishing a framework to embed research activities in the delivery of healthcare to minimize the burden on stakeholders and health systems.
Phase II will continue to build a sustainable infrastructure that can facilitate patient-centered research, improve health, and save lives through clinical research. The NYC-CDRN will continue engaging patients, caregivers, and clinicians to explore groundbreaking ways to advance the practice of and strengthen the public’s trust in research. The development of a collaborative community that attracts a diverse set of researchers and funders will continue, as will meaningful research topics and questions and disseminated research results.
Advanced collaborations will be created between other CDRNs, patient-powered research networks (PPRNs), and the PCORnet community as a whole. The network will augment its secure data repository and grow in richness, completeness, and quality with the enhancement of data sources including public and private claims data, biospecimen and genomic data, patient genetic information, and data from narrative text.
“We’re pleased that the NYC-CDRN has been approved for this funding support to continue our productive mutual efforts to build what we intend to be a premier national resource for conducting high-quality, patient-centered clinical research,” said PCORI Executive Director Joe Selby, M.D., M.P.H. “I greatly appreciate the contributions of all the PCORnet partners during Phase I, which readied PCORnet for a robust start on an exciting second phase of expansion and the launch of several research studies.”
The funding award to the NYC-CDRN has been approved by PCORI’s Board pending completion of a business and programmatic review by PCORI staff and negotiation of a formal award contract. PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information they need 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.