Patient Data Access News

OCR Clarifies Patient Access to Health Info in HIPAA Rules

HIPAA grants patient access to health information, helping them become even more empowered in their own healthcare.

By Sara Heath

- In the wake of the Precision Medicine Initiative Summit held last week, the Office for Civil Rights (OCR) has released a fact sheet regarding patient access to health information and patient rights under HIPAA guidelines.


The Precision Medicine Initiative calls for patients to gain control of their own health information and be given the option to donate that health information to research trials for better, more specific, and individualized treatment plans. Because of this, OCR felt it necessary to reiterate the rights patients have to access their health information under HIPAA.

“At the Office for Civil Rights (OCR), we believe strongly that every individual should be able to easily exercise their right to access their health information, allowing them to be fully engaged in their care and empowered to make the health care decisions that are right for them,” OCR said in a public statement. “The HIPAA Privacy Rule has always provided individuals with the right to access and receive a copy of their health information from their providers, hospitals, and health insurance plans. But this right has not always been well-understood, and far too often individuals face obstacles accessing their health information, even from entities required to comply with HIPAA.”

This new set of FAQs regarding patient access to health information discusses barriers patients face in accessing their health information, including excessive fees associated with data sharing. OCR emphasizes that patients can only be charged a just and reasonable fee for the cost of labor and potential materials for the sharing of the health information.

The fact sheet also addresses how patients may elect to send their health information to certain third-party entities, such as a specialist provider, family member, or research team. The agency explains that this right is often misunderstood, but is critical in making the patient the center of his or her own care.

“This clarification moves us toward the health care ecosystem of the future, where the individual is at the center of his or her care and seamless communication of relevant health information takes place among patients, their families, and their health care providers,” OCR wrote.

Overall, these kinds of clarifications are critical in boosting patient engagement. By providing patients with access to their own health information, they are better able to learn about their health conditions and thus make better decisions about their health and lifestyles.

Empowering patients to control who has access to their health information is also critical in promoting patient engagement. When patients act as the epicenter of their care, issuing their information to trusted providers and other members of the care team, they take an active role in maintaining their health and wellness.

“With the increasing use of and continued advances in health information technology, individuals have ever expanding and innovative opportunities to access their health information electronically, more quickly and easily, in real time and on demand,” said the Department of Health and Human Services (HHS) in the fact sheet. “Putting individuals “in the driver’s seat” with respect to their health also is a key component of health reform and the movement to a more patient-centered health care system.”

As the Precision Medicine Initiative kicks off, several other healthcare entities are doing their parts in increasing patient access to health information. Notably, OpenNotes and the College of Healthcare Information Management Executives (CHIME) have partnered to spread a health information sharing philosophy across the care spectrum.

Through this partnership, the pair hope to see more patients gain access to their physicians’ notes at the end of appointments, getting valuable insights into their health that will ideally affect further healthcare decisions.


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