- Several data sharing and EHR interoperability projects came to the forefront yesterday at the Precision Medicine Initiative Summit, including one from the Patient-Centered Outcomes Research Institute (PCORI).
The organization announced that it will allow individuals access to their EHRs and then give them the ability to share their health data with research teams to help improve care for specific conditions. This kind of health data sharing and interoperability will have a significant impact on the President’s precision medicine initiative, allowing for experts to develop more individualized treatment plans for patients handling chronic illnesses.
This project entails 20 Patient-Powered Research Networks (PPRNs) that are a part of PCORI to provide these services to their patients. PPRNs are to encourage their patients to participate in the health data sharing, and are in a special position to be successful in this because of their relationships with the patients and their missions to serve patients with very specific and individualized health needs.
“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,” PCORI explained in its press release. “They are using and evaluating multiple ways to help people acquire their EHR data with guidance and input from patients and other stakeholders.”
The data to be obtained through this project will be crucial in helping the precision medicine movement and developing better treatments for patients. Through health data sharing and interoperability, healthcare experts will be able to create better treatments for patients with specific needs.
“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 PCORI’s executive director Joe Selby, MD, MPH.
This project will also ideally help increase patient engagement. By giving patients the power to contribute their own health data on an interoperable network will allow them to take a stake in their healthcare that they never before could.
“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.
“This EHR data, combined with information from patient self-reports and other sources, will be critical in understanding patient-outcomes for millions of Americans,” she noted.
The Precision Medicine Initiative Summit also brought about several other health data sharing and patient engagement projects. The College of Healthcare Information Management Executives and leaders for OpenNotes announced one of those projects, stating that they will partner to help expand the OpenNotes philosophy and provide more patients with access to their health information.
“Patient engagement is a big part of that movement, but to be true partners in their care, patients must have access not only to their basic health records, but the notes that clinicians make during appointments,” said CHIME president and CEO Russell Branzell, FCHIME, CHCIO. “This partnership with OpenNotes is a terrific opportunity to promote innovative change in medical practice designed to increase patient engagement.”