Thursday, January 30, 2014

NYC gets cash to link 6 million patients with their health records

6 million patients to get their health records linked

Seven New York City health systems have been awarded $7 million in efforts to spur data sharing initiatives and more effective patient recruitment for clinical trials. 

The funding, provided by the Patient-Centered Outcomes Research Institute, or PCORI, will establish a clinical data research network in New York City, one of 29 such networks nationwide, officials say. These networks together will form PCORnet, the National Patient-Center Clinical Research Network, a $93.5 million patient-centered research initiative. 

The New York City Clinical Data Research Network, or NYC-CDRN, is a consortium composed of 22 regional organizations. The network, officials explain, will share capabilities and develop systems to support data-networking efforts and advance patient-centered research. It will initially focus its efforts on identifying individuals with diabetes, obesity and cystic fibrosis, and will partner with patients and clinicians through disease-specific community workgroups. 

"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 Rainu Kaushal, MD, chair of Weill Cornell's department of healthcare policy and research and the project's principal investigator, in a press release. "It validates New York's infrastructural advances in clinical data sharing."

[See also: Kaiser eyes outcomes with new network.]

The NYC-CDRN builds on six existing National Institutes of Health Clinical and Translational Science Award 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 received support from the New York State Department of Health and builds on infrastructure established by two New York 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, and all records will be anonymized to protect patient privacy. Over the next 18 months, award recipients will expand and improve their individuals systems and further work to standardize data. Project officials say 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 they can use to make clinical choices and ultimately to improve healthcare.

PCORI announced back in December it had approved $93.5 million to support the 29 clinical research data networks. 

Earlier this January, it was announced that Kaiser Permanente would be one of these 29 receiving $7 million to build a clinical network focused on obesity, cancer and heart disease.  

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