Patient Health Data Access Top-of-Mind in ONC Draft Framework

Patient health data access is a top priority in the draft version of the Trust Exchange Framework released by the Office of the National Coordinator for Health IT last week.

The Framework establishes a set of guidelines to foster health data interoperability, a mandate of the 21st Century Cures Act. A part of this interoperability is ensuring that patients can access their own health data to improve patient engagement.

Seamless patient data access is one of the core principles included in the draft Framework. Arbiters of patient health data must facilitate the following:

• Patients can easily access their own electronic health records
• Providers can send patient health data to any location
• Patients can learn about how their own health information is stored and used

These mandates are concurrent with HIPAA regulations, which require all covered entities to allow patients to access their own health data to differ that data to an authorized representative. ONC’s Framework will likewise enforce patients’ rights to differ their own health data to an authorized representative.

“Likewise, Qualified HINs and their participants – most of whom are Covered Entities or Business Associates – should not limit third-party applications from accessing individuals’ Electronic Health Information via an API when the application complies with Trusted Exchange Framework requirements and is directed by the individual,” the Framework states.

The Framework also requires health information networks (HINs) to disclose data to individuals who have access a patient’s data upon patient request.

Additionally, HINs must have policies and procedures in place to allow patients to withdraw their own health information from the HIN.

“Such policies and procedures must be easily and publicly available and be consistent with the HIPAA Privacy Rule right of an individual to request restriction of uses and disclosures, and the process for revoking participation must be easily accomplished by patients,” the Framework explains.

These measures are intended to establish clear patient data access, according to ONC. All of this is a part of the ONC and HHS’s goals to support patient engagement and patient-centricity.

“The vision we seek to achieve is a system where individuals are at the center of their care and where providers have the ability to securely access and use health information from different sources,” the Framework says.

The draft Trusted Exchange Network seeks to create policies and procedures to streamline HINs. These efforts will ideally create better health data interoperability.

“The draft Trusted Exchange Framework we issued today reflects the successes and challenges already existing in the exchange of health information and is designed to help guide the nation on its path to interoperability for all,” ONC head Don Rucker, MD, said in a public statement. “The principles and direction we released today, combined with the support of providers, existing health information networks, health IT developers, and federal agencies, are designed to help improve patient care, care coordination, and the overall health of the nation.”

The Framework seeks to create a single interoperability “on-ramp” by which all patients, providers, and other healthcare stakeholders can access relevant health data.

“To scale interoperability nationwide and ensure that patients, providers across the care continuum, community and social services, and many more stakeholders can effectively and efficiently participate in interoperability, our goal is to use the successes in the industry to create the single ‘on-ramp’ we seek,” ONC wrote in the draft Framework.

In addition to better patient health data access, the Framework also calls on HINs to enable population-level health data exchange and open and accessible APIs.

The draft Framework is currently open for comment until February 18. ONC will then use the public comments to finalize the Framework.