Patient Data Access News

ONC Tools Review Patient Health Data Access under HIPAA Rule

ONC has released a video series and a playbook reviewing patient portal adoption and patient health data access under HIPAA.

By Sara Heath

The Office of the National Coordinator for Health Information Technology (ONC) has released a series of patient-facing videos detailing patient health data access rights and regulations under HIPAA, says an ONC blog post.


Patient access to health data is a critical component of building robust patient engagement because it helps patients feel empowered in and well-informed of their own healthcare, say ONC’s Karen DeSalvo, MD, MPH, MSc, and the Office for Civil Rights’ Jocelyn Samuels, JD, in the post.

Research backs this up, the pair note, citing that 80 percent of patients with health data access find that data useful. DeSalvo and Samuels also point to other studies confirming that health data access does indeed make patients feel more empowered in their healthcare.

“Providing individuals with easy access to their health information empowers them to be more in control of decisions regarding their health and well-being,” DeSalvo and Samuels wrote. “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.”

However, far too many patients aren’t aware that accessing their health data is one of their fundamental rights, and often go without this kind of information that is critical for them to take a strong role in their own healthcare.

READ MORE: AHIMA Reviews the Basics of HIPAA Compliant Patient Data Access

To make information on patient health data access under HIPAA more accessible to patients, ONC created its three-video series reviewing the rights patients have under the privacy rule.

“OCR’s guidance on HIPAA provides a wealth of valuable and detailed information about patients’ rights,” the pair explained. “But it is important that this information be equally accessible to patients and other participants in the medical system.”

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

The second video serves as an in-depth question and answer session for patients, covering topics such as the wait time they may expect for receiving their health records, or the costs potentially associated with receiving their records. Importantly, the video explains that health data access should be free when viewed via a patient portal.

The last video explains the role patient caregivers play, and their subsequent rights to health data access. Amidst reviewing the several nuances of sharing health data with third parties, ONC emphasizes how important it is to understand these rights.

READ MORE: Balancing Patient Portal Privacy and Access for Pediatric Care

“Having the right and capability to direct health information elsewhere is an important and empowering step toward achieving patient-centered care,” DeSalvo and Samuels note. 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.

ONC also announced the release of its Patient Engagement Playbook, a provider-facing toolkit which details best practices for improving patient portal use.

These best practices include four central pillars – increasing portal adoption, designing the portal for patient needs, involving caregivers in an appropriate manner, and incorporating patient-generated health data – with the common thread of promoting robust patient education.

By instructing providers to educate their patients on the benefits of the portal, ONC is attempting to improve patient portal adoption rates, eventually boosting patient access to health data.

The ONC Playbook also instructs providers on how to effectively and efficiently use the patient portal. It is not enough to just get patients to sign up for the technology, ONC says; instead, providers need to be using the portal to enhance patient care.

READ MORE: Patient Portal Benefits in Pediatric Care Must Fuel Parent Use

According to 2014 ONC data, patient portal adoption is on the rise, with over half of patients being able to secure message their providers and view, download, and transmit their health data.

However, research shows the portal is not being used to its fullest capacity. In a HealthMine survey, researchers found that only 20 percent of patients and providers are using EHR data access to engage in shared decision-making. Another study shows that portals are only serving as a point of reference for patients instead of sparking patient-provider communication.

When used in tandem, ONC hopes that both the patient-facing video series and the provider-facing Playbook will help to alleviate some of those problems.

“We encourage clinicians and their office staff the information in these videos which, if combined with the information included in the Patient Engagement Playbook ONC also released today, can aid providers in engaging their patients,” DeSalvo and Samuels conclude. “This, in turn, will enable individuals to use tools such as portals and apps to manage their health information.”

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