Release of patients' electronic data should be a top priority, says OCR

At ONC’s annual meeting, Deven McGraw, deputy director of health information privacy in HHS' Office for Civil Rights, said the culture change surrounding data sharing will happen because patients demand it.
By Jessica Davis
02:42 PM

A surge of recent developments – the rise in apps for health management and wellness, advances in research data, precision medicine gains – is placing a great responsibility on healthcare leaders to break down data silos to simplify  sharing among providers. And with consumers.

That's according to Deven McGraw, deputy director of health information privacy in HHS' Office for Civil Rights. But to get there, she says, it's going to take more than governance.

"I can enforce people to comply with the law, but the culture change that makes a difference is not because the government is going to force it down people's throat," said McGraw, speaking Thursday at ONC’s annual meeting in Washington. "It's going to happen because people want it and demand it. We need to lay the foundation and get the heck out of the way.

"If we lay the right foundation, then the innovators will come in and kick up and really put some steam behind this revolution," she added.

OCR is pushing for providers to securely release this electronic data at the patient's request, McGraw said.

"This needs a serious underscore, bold, italics and exclamation points," she said. "Whatever the patient wants to do with that information, it's her right to have it and to have it in the form or format that she wants it."

Furthermore, engaged patients can better care for themselves and work with their providers to receive the care they need, when they need it, according to Lucia C. Savage, ONC's chief privacy officer.

"We're trying to bring the technology that people have in their daily lives into healthcare," Savage said. "I see our role as trying to eliminate the real and perceived barriers to the kind of culture change that is inevitable."

During today’s meeting, the ONC and OCR also released consumer-directed videos to inform individuals of their rights to access their patient data, under HIPAA. The effort is one both organizations hope will continue to break down barriers to sharing data, according to Savage.

"The consumer's voice is being heard and what we're hearing is, give me my data," she said.

Twitter: @JessieFDavis
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