Feds Unite to Shatter Resistance to Health Data Exchange

The Office of the National Coordinator for Health Information Technology (ONC)–the agency that promotes the use of electronic health data–and the Department of Health and Human Services (HHS) Office of Civil Rights (OCR)–the agency that enforces health data privacy–have been working together to try to remove barriers to health data exchange.

infograficToday at the 2016 ONC Annual Meeting in Washington, D.C., ONC unveiled a series of consumer-oriented videos and aninfographic, left, about the rights patients have to access their electronic health records (EHRs), as well as a Patient Engagement Playbook for Providers designed to help clinicians and office staff better engage patients through the use of health IT. OCR helped produce the videos.

“Many people are not fully aware of their right to access their own medical records under the Health Insurance Portability and Accountability Act (HIPAA), including the right to access a copy when their health information is stored electronically,” said Lucia Savage, ONC’s chief privacy officer. “The videos we released today highlight the basics for individuals to get access to their electronic health information and direct it where they wish, including to third-party applications.”

The videos, infographic, and playbook all come as part of ONC’s latest effort to dispel provider fears about data exchange, and to encourage consumer awareness. Consumers will drive the flow of information, Savage said in a morning panel session at the conference.

Consumers’ voices are being heard, she said, and they are saying, “give me my data.”

“Sometimes information is not released by one provider, as directed by a patient, potentially due to misconceptions and other business reasons,” Savages said. ONC hopes the videos will make it clear that patients have the right to have their data transmitted electronically.

In researching for the video, ONC discovered that patients “have an intrinsic ethical or moral sense they should be able to get their data,” but they don’t know it’s a legal right, Savage said.

Deven McGraw, deputy director of Health Information Privacy, HHS Office for Civil Rights, said from the beginning, patients’ rights under HIPAA to access their data “has never been limited to certain purposes.”

“[W]hatever the patient wants to do with that information, it is her right to have it, and to have it in the form or format that she wants it,” McGraw said.

OCR did not stress this right enough in earlier HIPAA guidance, but that is now changing under the HITECH Act, she said.

Many recent advances have contributed to the need for greater emphasis on freeing up the data. The explosion of health care apps, both for wellness and for care management, and the use of data for research and precision medicine have all put pressure on the need for the exchange of electronic health data, McGraw said.

OCR is trying hard to get providers to release the data electronically, at a patient’s request. “We felt that this needs a serious underscore, bold italics, exclamation points, so we tried to make it a focus and we are pleased the video focuses on that as well,” McGraw said.

“If we lay the right foundation, then the innovators will come in and kick off–and really put steam behind–this revolution,” she said.

“To some extent, I can enforce people to comply with the [HIPAA] law,” McGraw said. “But the culture change that makes a difference is not because government is going to force it down people’s throats, it is going to happen because people want it and demand it, and we need to lay the foundation and then get the heck out of the way.”

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