Patient Data Access News

HHS Reviews Patient Data Access for National Health IT Week

Patient data access is an integral part of putting patients at the center of their care, HHS says, highlighting its efforts to promote education during National Health IT Week.

By Sara Heath

HHS is helping patients celebrate National Health IT Week by providing education about their patient data access rights.


In a patient-facing video, HHS illustrates the importance of accessing health data and reviews the agency’s actions to ensure ubiquitous access.

The video discusses key points such as how digital health data helps put patients at the center of their own care. When patient data lives in digital spaces such as EHRs, patients and their physicians can make more informed care decisions by looking at all aspects of patient health.

The video also acknowledges some barriers to patient data access. These barriers may be technological and are also sometimes a part of hospital culture.

“For some patients today, it is still too difficult to access their health care data for a few reasons,” wrote National Coordinator for Health IT Vindell Washington, MD, in an accompanying blog post.

“Different electronic systems sometimes speak different data languages. Some hospitals and doctors are still reluctant to give patients their own information. And too often we’ve paid for health care in ways that don’t support sharing information.”

In order to facilitate patient data access, HHS and ONC are working to establish system-wide data standards. These would facilitate seamless data transfer between disparate providers, and also ensure that data could transmit to patient-facing devices such as personal health records.

The agencies are also working together to educate patients and providers about patient rights to access their health data.

Additionally, HHS and the ONC  are making sure payment reform efforts prioritize patient-centered care. By encouraging providers to adopt value-based care models, HHS and ONC plan to drive care coordination between all key stakeholders, including the patient and her family.

Washington also advised patients to take a proactive role in their healthcare.

“If you’re a patient, you should ask for a copy of your own data, so you can manage your own health,” he said. “You have a right to a copy of your health information, and you have a right to send it wherever you’d like – whether that’s to a family member or to a smartphone app.”

In an effort to underscore those rights, HHS also recirculated a set of patient-facing educational videos reviewing patient data access under HIPAA.

“Providing individuals with easy access to their health information empowers them to be more in control of decisions regarding their health and well-being,” wrote former ONC head Karen DeSalvo, MD, and OCR Director Jocelyn Samuels, JD, in a HealthITBuzz post accompanying the videos.

“Individuals with access to their health information are better able to monitor chronic conditions, adhere to treatment plans, find and fix errors, and directly contribute their information to research.”

These videos aimed to boost patient education on the subject, empowering patients to ask their providers for access to their medical records.

The first video included an overview of patient data access under HIPAA, stating that providers must share medical records with the patients to whom they belong. While there are some exceptions to this rule, the video makes it clear that providers cannot withhold data from patients who have not paid their medical bills.

The second video included an in-depth question and answer session for patients, covering topics such as the wait time patients can anticipate for receiving their records and potential associated costs. HHS emphasizes that patient data access through a patient portal should not include a fee.  

According to DeSalvo and Samuels, it is also important that patients know that they can direct their health records to another person such as a family member of a caregiver.

“Having the right and capability to direct health information elsewhere is an important and empowering step toward achieving patient-centered care,” DeSalvo and Samuels noted. When patients can decide who has access to their health data, they are taking control of their health and how they will be cared for.

These educational efforts are critical for putting patients at the center of their care, the officials said. By pushing for patient-centered data sharing and access to information, HHS and ONC can help drive healthcare system reform and come closer to achieving the triple aim of better care, smarter spending, and healthier patients.

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