Winter 2023

Information Blocking: Leading the World in Patient Access: Two Insights Post Data Liberation Day
By Rita Bowen, MA, RHIA, CHPS, CHPC, SSGB
For The Record
Vol. 35 No. 1 P. 30

While the UK struggles with mandating patient access to health information, HIM professionals reflect on information blocking compliance and new professional roles in the United States.

October 6, 2022, marked the formal enforcement and compliance deadline for the United States health care industry to provide patients with access to their electronic health information (EHI). Also coined “health data liberation day,” the celebration was an important milestone in the Office of the National Coordinator for Health Information Technology’s information blocking and interoperability roadmap. Patients are now officially empowered to demand online access to their health records. And all stakeholders, from providers to payers, are obliged to honor patient requests for EHI, with expected enforcement at the end of 2023.

While the United Kingdom flounders in its attempts to establish a national mandate for patient access to records, HIM professionals in the United States are already learning important lessons only three months into the nationwide release of information blocking rules. This article summarizes insights thus far and establishes valuable predictions for HIM’s journey ahead.

Patient Requests: Trickle vs Tsunami
The past became prologue during the first 90 days of information blocking. Just like the rush of IT disaster predictions never materialized on January 1, 2000, the expected tsunami of patient requests for information never occurred. There have been no significant increases in patient requests for health information, according to MRO Corp, a leading processor of health release of information requests. And during the Sequoia Project Annual Meeting held in Washington, D.C., in December 2022, attendees reported no serious ramifications from patients requesting their electronic information.

Consumer access to health information is a primary focus area for The Sequoia Project. As such, the group will keep a watchful eye on patient requests for EHI. Furthermore, the Office of the National Coordinator for Health Information Technology tapped the nonprofit Sequoia Project to manage its eHealth Exchange in 2012 and selected the organization to serve as the Recognized Coordinating Entity to support the implementation of the Trusted Exchange Framework and Common Agreement.

HIM professionals are encouraged to visit The Sequoia Project’s website as it relates to compliance with the new information blocking rule. There are a number of valuable information blocking industry resources on the project’s website, including the following:

• good practices for information sharing and information blocking compliance;

• operational implications of the move to an expanded definition of EHI;

• web of information systems included in the expanded definition of EHI infographic;

• further exploration of the expanded definition of EHI and related considerations; and

• policy considerations.

Time will tell if the lack of patient requests for EHI is due to limited awareness or simply a lull in the consumer demand for personal health information. Most patients don’t realize they need EHI until they find themselves (or a family member) in a clinical situation where medical history is required. In the interim, the inconsistent definition of EHI remains another information blocking compliance concern.

EHI Definition: The Wild West of Information Blocking
EHI is the electronic version of each organization’s designated record set (DRS), according to Steve Gravely, JD, MHA, founder and CEO of the Gravely Group. Different from an organization’s legal medical record, the DRS is a critical component for compliance with the information blocking rule. Therefore, it must be accurate, maintained, and socialized across the organization.

During his educational session at the AHIMA 2022 Global Conference in Columbus, Ohio, Gravely reminded attendees that every health care provider organization determines what constitutes its own DRS. And since the DRS varies from hospital to hospital, so does the definition of EHI. For example, some hospitals may include EKG tracings in the DRS. But others may not include the tracings if they are interpreted within a DRS report.

Furthermore, there are exceptions to inclusion of certain information within EHI, leading to even more confusion and gaps in understanding.

A uniform and standard definition of EHI requires prompt industry attention in 2023. Several associations (including AMIA, AHIMA, and the Electronic Health Record Association) are actively working to create a uniform list of patient information that should be included in EHI. While the technology exists to pull electronic patient information, the lack of a uniform national definition creates confusion and represents a handicap to the full enforcement of the information blocking rules.

In the interim, facilities are encouraged to update their DRS and solidify the definition of EHI for their own organizations. It’s important to document every step taken and the rationale for each decision along the way. HIM plays an important role in both of these initiatives.

New HIM Roles Ahead: Education and Quality
In the wake of data liberation day, HIM professionals find themselves in a unique and assuring career position to educate stakeholders and ensure data quality. Our deep knowledge and expertise in the overlapping areas of health information, patient privacy, and data quality are essential to increase patient awareness and ensure full organizational compliance across both HIPAA law and information blocking rules.

Nearly every health care stakeholder, including patients, is well versed in HIPAA’s privacy and right of access laws. HIPAA still exists, and patients still have a right to restrict the flow of their information. However, the new information blocking rule is different from HIPAA. There is great need for HIM expertise to educate the health care industry on the similarities, differences, and individual nuances of each rule.

For consumers, HIM professionals serve as valuable advisors to define the importance of access to health information, improve health literacy, and help patients monitor the accuracy of their growing EHI database. AHIMA’s new initiative to improve health literacy is a harbinger of new roles in patient and consumer education for our profession.

From a health care provider organization’s perspective, stakeholders must understand how the new information blocking rules constitute “intent-based” laws, according to Gravely. It is not enough for facilities to simply know about information blocking—the requirement to not inhibit or restrict electronic access. They must also be fully aware of the background knowledge about information blocking regarding a patient’s request for EHI. This is where education and documentation are essential. And HIM professionals are well positioned to oversee both.

Focus on Data Quality: Back to Our Roots
Finally, in the year ahead, patients will receive more ubiquitous access to their health information. At the same time, more data will be exchanged electronically through expanded interoperability programs and initiatives.

Resembling a busy traffic roundabout in a major metropolitan city, the intersection of data access and exchange requires facilities to deliver higher levels of health data quality. And data quality is another well-respected area of expertise for HIM professionals.

Now is the time to fully embrace our role as managers of health information. Our skills are needed to ask appropriate and necessary data quality questions such as:

• Who is looking at the quality of EHI within your organization?

• Who knows the source of each data element and its role in creating a complete clinical picture?

The thirst for higher levels of data quality following data liberation day opens the door for more active participation and engagement by HIM professionals. Information sharing and interoperability are the new roads in health care, and we are perfectly positioned to guide the journey ahead.

— Rita Bowen, MA, RHIA, CHPS, CHPC, SSGB, is vice president of privacy, compliance, and HIM policy for MRO. She’s also the company’s privacy and compliance officer. With more than 40 years of experience in HIM, she sits on The Sequoia Project Board of Directors, is an active member of AHIMA, and is a former AHIMA president and board chair.