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February 29, 2016.
Joe Selby, MD, MPH, Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), announced an initiative to enable individuals to access data in their electronic health records (EHRs) and share it for research that could improve care for their conditions.
The initiative involves a pledge by 20 Patient-Powered Research Networks (PPRNs) to help their participating patients more readily obtain information from their EHRs. The PPRNs will encourage their participant members to share their health information with researchers to support studies that have been identified as highly relevant and useful by network members. These PPRNs are part of a research resource called PCORnet, a PCORI-funded initiative to build a national patient-centered clinical research network.