Changing the research landscape: the New York City Clinical Data Research Network

Rainu Kaushal; George Hripcsak; Deborah D Ascheim; Toby Bloom; Thomas R Campion Jr; Arthur L Caplan; Brian P Currie; Thomas Check; Emme Levin Deland; Marc N Gourevitch; Raffaella Hart; Carol R Horowitz; Isaac Kastenbaum; Arthur Aaron Levin; Alexander F H Low; Paul Meissner; Parsa Mirhaji; Harold A Pincus; Charles Scaglione; Donna Shelley; Jonathan N Tobin; NYC-CDRN

doi:10.1136/amiajnl-2014-002764

Changing the research landscape: the New York City Clinical Data Research Network

J Am Med Inform Assoc. 2014 Jul-Aug;21(4):587-90. doi: 10.1136/amiajnl-2014-002764. Epub 2014 May 12.

Authors

Rainu Kaushal¹, George Hripcsak², Deborah D Ascheim³, Toby Bloom⁴, Thomas R Campion Jr⁵, Arthur L Caplan⁶, Brian P Currie⁷, Thomas Check⁸, Emme Levin Deland⁹, Marc N Gourevitch⁶, Raffaella Hart¹⁰, Carol R Horowitz³, Isaac Kastenbaum⁹, Arthur Aaron Levin¹¹, Alexander F H Low⁵, Paul Meissner⁷, Parsa Mirhaji⁷, Harold A Pincus¹², Charles Scaglione¹³, Donna Shelley⁶, Jonathan N Tobin¹⁴; NYC-CDRN

Affiliations

¹ Weill Cornell Medical College, New York, New York, USA NewYork-Presbyterian, New York, New York, USA.
² Columbia University, New York, New York, USA.
³ Icahn School of Medicine at Mount Sinai, New York, New York, USA.
⁴ New York Genome Center, New York, New York, USA.
⁵ Weill Cornell Medical College, New York, New York, USA.
⁶ New York University Langone Medical Center, New York, New York, USA.
⁷ Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA.
⁸ Healthix, New York, New York, USA.
⁹ NewYork-Presbyterian, New York, New York, USA.
¹⁰ Biomedical Research Alliance of New York Institutional Review Board, Lake Success, New York, USA.
¹¹ Center for Medical Consumers, New York, New York, USA.
¹² NewYork-Presbyterian, New York, New York, USA Columbia University, New York, New York, USA.
¹³ Bronx RHIO (Bronx Regional Informatics Center), Bronx, New York, USA.
¹⁴ Clinical Directors Network, New York, New York, USA The Rockefeller University, New York, New York, USA.

Abstract

The New York City Clinical Data Research Network (NYC-CDRN), funded by the Patient-Centered Outcomes Research Institute (PCORI), brings together 22 organizations including seven independent health systems to enable patient-centered clinical research, support a national network, and facilitate learning healthcare systems. The NYC-CDRN includes a robust, collaborative governance and organizational infrastructure, which takes advantage of its participants' experience, expertise, and history of collaboration. The technical design will employ an information model to document and manage the collection and transformation of clinical data, local institutional staging areas to transform and validate data, a centralized data processing facility to aggregate and share data, and use of common standards and tools. We strive to ensure that our project is patient-centered; nurtures collaboration among all stakeholders; develops scalable solutions facilitating growth and connections; chooses simple, elegant solutions wherever possible; and explores ways to streamline the administrative and regulatory approval process across sites.

Keywords: PCORI; PCORnet; clinical data; electronic health record; research data; research network.

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Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Computer Communication Networks / organization & administration*
Electronic Health Records / organization & administration*
Humans
Information Dissemination
New York City
Outcome Assessment, Health Care / organization & administration*
Patient-Centered Care*

Abstract

Publication types

MeSH terms

Grants and funding