White House Precision Medicine Initiative Summit Highlights Pledge to Facilitate Patient Access to EHR Data

WASHINGTON, D.C. - February 25, 2015 - Today at the Precision Medicine Initiative Summit at the White House, 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) to share 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 electronic health records (EHRs). The COPD Patient-Powered Research Network (COPD PPRN) is a collaborative effort between the COPD Foundation and two federally-funded networks: COPD Outcomes-based Network for Clinical Effectiveness and Research Translation (CONCERT) and COPDGene.

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. The PPRNs are uniquely positioned to facilitate the flow of health data for research and healthcare improvement because they are built to focus specifically on the needs of their participants.

“Information that reflects the everyday, lived experiences of ordinary patients is vital for health research to ensure that it focuses on the questions that matter most to patients and the results are directly applicable and useful to a wide range of patients,” said Dr. Selby.

The 20 PPRNs along with 13 Clinical Data Research Networks based in health systems together comprise PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is an innovative PCORI initiative designed to make it faster, easier, and less costly to conduct clinical research than is now possible by harnessing the power of large amounts of health data with direct guidance and input from patients. In the process, PCORnet is transforming the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them.

“The COPD Foundation is proud to be a part of this critical initiative,” stated Craig Kephart, Executive Director of the COPD Foundation. “The collective objective of the PCORnet Patient-Powered Research Networks and of PCORI is to empower individuals to ask for their health data in order to further patient-guided research. The EHR data and self-reported information we gather will be crucial in understanding COPD from the patient-perspective, and will enhance the quality and efficiency of clinical research for patients and other end-users.”

Click here to learn more about the COPD Patient-Powered Research Network.
Click here to learn more about PCORnet.