The Patient-Centered Outcomes Research Institute (PCORI) announced an initiative to enable individuals to access data in their 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. These PPRNs are part of a research resource called PCORnet, a PCORI-funded initiative to build a national patient-centered clinical research network.

By encouraging 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 will facilitate the flow of health data for research and healthcare improvement.

The PPRNs will help participants to retrieve their own EHR data through existing participant portals and offer them an option to immediately make these data available for research. The networks use different methods to help people acquire their EHR data, such as gathering data electronically either directly from healthcare providers or through intermediaries, including several PCORnet Clinical Data Research Networks (CDRNs).

“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 Joe Selby, MD, MPH, PCORI executive director, speaking at the White House Precision Medicine Initiative Summit.

“The goal of the PCORnet Patient-Powered Research Networks and of PCORI is to ultimately empower people to ask for their health data from healthcare providers and receive it in the easiest and most useful way,” said Sharon Terry, MA, president and CEO of Genetic Alliance, which leads the Community Engaged Network for All (CENA) PPRN and serves in a leadership role in the PCORnet Coordinating Center. Terry also is a member of the Precision Medicine Initiative Cohort Program Advisory Panel.

“This EHR data, combined with information from patient self-reports and other sources, will be critical in understanding patient outcomes for millions of Americans,” Terry added.