At the Feb. 25 Precision Medicine Initiative Summit at the White House, the Patient-Centered Outcomes Research Institute (PCORI) announced an initiative to help individuals access data in their electronic health records (EHRs) and share it with researchers.
Twenty Patient-Powered Research Networks (PPRNs) have pledged to help their participating patients more readily obtain information from their EHRs. These PPRNs are part of PCORnet, a PCORI-funded initiative to build a national patient-centered clinical research network.
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 will help participants to retrieve their own EHR data through existing participant portals and offer them an immediate option to make these data available for research. They are using and evaluating multiple ways to help people acquire their EHR data with guidance and input from patients and other stakeholders. For example, nine PPRNs are gathering data electronically either directly from healthcare providers or through intermediaries, including several PCORnet Clinical Data Research Networks.
Their efforts will build toward a future in which an interface for exchanging EHR data based on Fast Healthcare Interoperability Resources (FHIR) will be widely available, PCORI noted.
Information shared by patients is crucial for being able to meet PCORI’s and PCORnet’s goal of enhancing the quality, efficiency, and usefulness of clinical research for patients and other end users of study results, noted Joe Selby, M.D., M.P.H., PCORI’s executive director.
“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, in a prepared statement. Her organization 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.