ONC to develop patient-generated health data policy framework

The Office of the National Coordinator for Health IT will develop a policy framework for identifying best practices, gaps and opportunities for the use of patient-generated health data (PGHD) in research and care delivery through 2024, National Coordinator Karen DeSalvo announced Thursday.

At ONC's annual consumer health IT summit in the District of Columbia, DeSalvo--who called PGHD efforts "near and dear to her heart"--said that the framework will be developed over the next two years.

"It's a framework that's going to look at how we're going to protect that data, how we're going to maximize the doctor-patient relationship using that data, build confidence in providers' and researchers' ... uses of that data and encourage consumers and caregivers to participate" in harnessing the data, she said.

DeSalvo added that the framework won't be theoretical, but rather will help shape the approach of Patient Centered Outcomes Research and Precision Medicine efforts. She said the effort is already working on the ground in some communities, and according to information posted to HealthIT.gov, ONC will conduct pilots to test implementation of and further refine topics identified in the framework.

At Health Datapalooza in June, Rajiv Kumar, an assistant professor of pediatrics at Stanford, dissected the need to integrate PGHD into electronic health record systems so as not to impede provider workflow, talking about his organization's use of Apple HealthKit. He also, however, shared concerns about the reimbursement ramifications of such efforts, saying that being able to constantly assess patient data in real time could render traditional three-month check-in visits obsolete.

DeSalvo noted in her speech the importance of incorporation of PGHD into EHRs.

ONC's updated federal health IT strategic plan focuses more on involving patients in their own care, as opposed to emphasizing the implementation of EHRs by healthcare provider systems.

To learn more:
- check out the updated HealthIT.gov page

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