ONC issues new guide to help patients access their medical data

Doctor talking to senior patient and her husband
Patients were nearly twice as likely to access their medical information online when encouraged by a provider. (Getty/olgachov)

The federal government’s health IT agency has released a new resource to help patients access their health data, following a new initiative to give consumers more control of their medical information.

The new guide, released by the Office of the National Coordinator for Health IT (ONC) builds on provisions of the 21st Century Cures Act that requires the agency to improve patient access to electronic health information, and also supports the MyHealthEData initiative unveiled last month by Centers for Medicare & Medicaid Services (CMS) Administrator Seema Verma.

New data released (PDF) by ONC shows 52% of consumers were offered online access to their medical records in 2017, up from 42% in 2014. Of those that were offered access, 28% viewed their medical record in the last year.

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Patients that were encouraged by their provider to access their information were more almost twice as likely to do so.  

“It’s important that patients and their caregivers have access to their own health information so they can make decisions about their care and treatments,” National Coordinator Don Rucker, M.D. said in an announcement. “This guide will help answer some of the questions that patients may have when asking for their health information.”

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Patient access—a longtime concern for patient advocates—has emerged as a top priority for Verma over the past several months, culminating in the MyHealthEData initiative and Blue Button 2.0, designed to improve the portability of claims data using apps.

The top officials at ONC have been fiercely supportive of giving patients access to their data.

“It’s a paternalistic attitude on the part of doctors like me to think that patients don’t want the data or aren’t ready for it,” Jon White, M.D., the deputy national coordinator at ONC, told reporters at HIMSS.

Exactly how federal officials plan to execute on those initiatives remains to be seen. Verma has called on providers to open up data to patients, and said she plans to “re-examine” the agency’s existing relationship with insurers. But critics have called in the agency to provide more specifics about its effort.