The Patient-Centered Outcomes Research Institute announced a plan to make it easy for individuals to access data in their electronic health records and share it for research that could improve care for their conditions.
PCORI Executive Director Joe Selby, MD, revealed at Thursday’s White House Precision Medicine Initiative Summit that 20 of PCORI’s Patient-Powered Research Networks have pledged to help participating patients more readily obtain information from their EHRs.
Selby said the efforts would build toward a future in which an interface for exchanging EHR data based on HL7's Fast Healthcare Interoperability Resources standard, or FHIR, would be widely available.
[See also: PCORI gives $120M for clinical research.]
PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research to provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.
Selby said the research networks would encourage participant members to share their health information with researchers for support studies that have been identified by network members as highly relevant and useful.
They’ll help participants retrieve their own EHR data through existing portals and offer them an immediate option to make the data available for research.