HHS Office for Civil Rights unveils new guidance on patient rights to data under HIPAA

In an effort to ensure that consumers are able to rightfully access their health information, the Health and Human Services Department this week released new guidance on the HIPAA Privacy Rule.

"Based on recent studies and our own enforcement experience, far too often individuals face obstacles to accessing their health information, even from entities required to comply with the HIPAA Privacy Rule. This must change," Jocelyn Samuels, director of the HHS Office for Civil Rights, writes in an announcement.

On Thursday, OCR released the first of what will be a series of Frequently Asked Questions documents, as well as a fact sheet.

OCR also will work with the White House Social and Behavioral Science Team and the Office of the National Coordinator for Health IT on similar resources for consumers, according to Samuels.

Despite the push to give patients greater access to their records, 53 percent of respondents to a recent survey said they have no online access to their healthcare information, FierceHealthIT reported last month.

The guidance released this week covers information such as patients' general rights to their protected health information, what data is excluded from that right to access, how an individual may request access and how an entity must provide the information, among other topics.

Early reaction to the release of the guidance is positive, though some feel there are more steps needed in this area.

ACT | The App Association said in a statement that while the organization is "pleased to see guidance from OCR ... [it] does not obviate the need for OCR to create more useful resources for app makers and connected device companies."

"Recent regulatory shifts place greater value on the use of patient-generated health data by care providers," Executive Director Morgan Reed said. "But the companies that make the apps and devices that consumers find so useful must have clear guidelines to continue innovating in this life-changing space."

The GetMyHealthData Campaign also voiced its support for the OCR guidance. The campaign, started by former National Coordinator for Health IT Farzad Mostashari, is a collaborative of consumer groups, healthcare pros and tech organizations.

"HHS' guidance is helpful for health information management professionals who have long been committed to ensuring that patients can get their data in a timely manner," American Health Information Management Association CEO Lynne Thomas Gordon said in a statement from GetMyHealthData. "We're enthusiastic about sharing these new resources with our members, many of whom serve as liaisons between patients and health care providers, to improve the availability of health information across the health care landscape." AHIMA is one of the campaign's co-founders.

This is in keeping with a priority for ONC this year: Usable data needs. Karen DeSalvo told the Federal Times in November that the agency's "near-term health IT strategy" will focus on making sure usable data is readily available. That will include the agency's push for interoperability, as well as the fight against information blocking.

To learn more:
- read the announcement
- here's the guidance

Read more on