Newswise — January 28, 2014—(BRONX, NY) — A $7 million contract brings together seven New York City health systems to encourage data sharing and more effective recruitment of patients for clinical trials. The funding was awarded by the Patient-Centered Outcomes Research Institute (PCORI), which was authorized by Congress in 2010 to fund research to provide information about the best available evidence for patients and their health care providers to make more informed decisions. The award will create a Clinical Data Research Network (CDRN) in New York City, one of 29 such health data networks nationwide. Together, these networks will form a new resource known as PCORnet, the National Patient-Centered Clinical Research Network.
The New York City Clinical Data Research Network (NYC-CDRN) is a consortium comprised of 22 regional organizations. The network will share capabilities and develop systems to support data-networking efforts and advance patient-centered research. It will initially demonstrate its capabilities by identifying individuals with diabetes, obesity, and cystic fibrosis, and will partner with patients and clinicians through disease-specific community workgroups. The principal investigator is Rainu Kaushal, M.D., M.P.H., of Weill Cornell Medical College.
“This contract is an exciting opportunity for leading New York City institutions to work together, through patient-centered research, for the health of the people who live here,” said Dr. Kaushal, chair of Weill Cornell’s department of healthcare policy and research. “It validates New York's infrastructural advances in clinical data sharing.”
The NYC-CDRN builds on six existing National Institutes of Health Clinical and Translational Science Award (CTSA) Centers that already work on collaborative research, data sharing and patient engagement. The CTSA centers are at Albert Einstein College of Medicine of Yeshiva University/Montefiore Medical Center, College of Physicians and Surgeons at Columbia University, Icahn School of Medicine at Mount Sinai, NYU School of Medicine, Rockefeller University and Weill Cornell. The project also has strong support from the New York State Department of Health and builds on infrastructure established by two New York State–supported health information exchanges, Healthix and the Bronx Regional Health Information Organization.
The NYC-CDRN network will link medical records for 6 million New York City residents; all records will be anonymized to protect patient privacy. The scale of the data-sharing between institutions will make it far easier and faster to enroll patients in clinical trials and conduct comparative effectiveness and clinical outcomes research. The goal is to allow patients and providers to have access to evidence-based information that they can use to make clinical choices and ultimately to improve healthcare.
Additional institutions involved in the new project include the four principal medical center participants (Montefiore Medical Center, Mount Sinai Health System, New York-Presbyterian Hospital and NYU Langone Medical Center); five organizations for patient engagement (Center for Medical Consumers, Consumer Reports, American Diabetes Association, New York Academy of Medicine’s DASH initiative for obesity, and the Cystic Fibrosis Foundation); one practice-based research network of Federally Qualified Health Centers (Clinical Directors Network); one genome center (New York Genome Center); one research-support organization (Biomedical Research Alliance of New York); and the new Cornell Tech Campus (which includes a focus on developing new technologies to capture patient health information).
The NYC-CDRN is part of a recent investment by PCORI of $93.5 million to develop PCORnet, which includes 11 CDRNs, 18 Patient-Powered Research Networks, and a Coordinating Center.
All proposed projects, including requested budgets and project periods, have been approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.