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Lucila Ohno-Machado, Networking the country to promote health and scientific discovery, Journal of the American Medical Informatics Association, Volume 21, Issue 4, July 2014, Page 575, https://doi.org/10.1136/amiajnl-2014-003005
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This special focus issue on research data networks starts with a collection of articles describing a large initiative in the US that will use electronic health record data for patient-centered outcomes research in a privacy-preserving manner. This type of research will include observational and interventional studies. PCORnet, funded by the Patient-Centered Outcomes Research Institute (PCORI), leverages investments of several agencies such as the NIH, AHRQ, and FDA, as well as institutional support from healthcare systems to build a ‘network-of-networks' aimed at helping researchers answer questions that matter most to patients and their caregivers.
An editorial by leaders of the NIH (See page 576) embodies the excitement that has permeated the biomedical science, health services research, and informatics communities around the big challenge of connecting highly diverse systems into a national network. Taken together, the 11 clinical data research networks (CDRNs) and the 18 patient-powered research networks (PPRNs) will have the potential to analyze de-identified data on over 100 million unique individuals located in all US states and territories.
