Rebranding Information Blocking: A Cultural Shift Toward Information Enabling

Data sharing and interoperability efforts have transformed how health information is exchanged, allowing for better patient care and access to information. The 21st Century Cures Act’s Information Blocking (IB) Rule aims to ensure that patients have access to their medical information without any barriers. However, there are gray areas in the rule’s language, and implementation can be challenging.

Clinicians’ and health information (HI) professionals’ understanding of and comfort with information sharing under the rule varies, especially when it comes to sharing sensitive medical information. Some staff also worry about being penalized for misinterpreting the rule’s exceptions, which can be unclear.

In addition to unclear language, HI teams also face other uncertainties about compliance, such as concerns about properly responding to patient-directed authorization requests from third parties, or confusion about when to share information with patients.

To address these ambiguities, healthcare organizations are convening cross-functional groups that include HI professionals as well as IT staff, clinical leadership, privacy specialists, legal teams, compliance departments, and revenue cycle staff. These teams collaborate to learn about the IB rule and to inform internal policies and workflows. HI professionals often lead these teams, acting as IB navigators, educators, and subject matter experts.

A recent AHIMA study underscores these points, and highlights the ruling’s complexity. According to participants, HI professionals play a key role in information blocking compliance. Only by treating the effort as a team sport can they successfully navigate how to share information while adhering to existing federal, state, and local requirements related to the privacy of health information.

Research and Analysis Can Provide Valuable Lessons

When it comes to understanding contradictory language or gray areas in IB exceptions, Susan Carey, MHIM, RHIT, FAHIMA, system vice president information systems for Norton Healthcare in Louisville, Ky., recommends that HI leaders — specifically those who specialize in compliance and legal risk — look to how the U.S. Department of Health and Human Services (HHS) Office of the National Coordinator for Health Information Technology (ONC) manages IB claims.

They can do this by researching existing IB cases on ONC’s website, familiarizing themselves with IB risk factors, and comparing the probability of similar risks in their own organizations.

There are currently more than 680 cases available. While each case is likely different and would need to be judged on its own merits, the cases provide enough material to find patterns and help HI leaders learn from others' mistakes, Carey notes. Such research and analysis can provide HI leaders with “fingers on the pulse” of compliance, which instills confidence from health system leaders and reduces the fear factor around IB, she says.

Carey notes that some providers may be especially wary, and would justify any data exchange as potentially harmful to patients. In these situations, studying IB cases and the types of data withheld can empower HI leaders to have informed conversations with those providers.

“We have to make sure they're educated [about what specifically] is considered harm to the patient,” she explains.

Armed with this knowledge, HI staff, IT teams, legal officers and compliance teams should collaborate to develop risk mitigation strategies, and annually review compliance policies and standard work instructions, according to Carey.

Once policies are in place, Carey says that HI staff should identify and lead an additional team responsible for internal and patient education and communication, comprising inpatient and ambulatory nurses, physicians, ambulatory office staff, IT personnel, and patient engagement leaders.

“Keeping apprised of where we are with IB and subsequent analysis on the gray areas of the rule is imperative to mitigate fear,” Carey says.

Improving Access for Patients to Their Information

Clinician burnout is high, and some providers may be hesitant to release more patient information because they fear being inundated with patient messages and requests. To minimize these concerns, experts recommend educating patients to navigate electronic data and systems, especially for patients with limited digital literacy.

They also recommend a mindset shift. It's important to help clinicians see that sharing patient information is a fundamental aspect of patient care, says Roberta Baranda, MS, RHIA, CHP, director of ambulatory operations at Valley Children's Hospital in Madera, Calif.

Addressing clinicians’ concerns requires a change in culture that fully considers the benefits of patient engagement and the potential for improved outcomes.

Boosting patient access and implementing a culture of transparency can be a significant customer service and patient experience opportunity, while also ensuring compliance with the new rule, Baranda says.

Baranda proposes organizations rebrand IB as "information access” to better reflect its purpose. That way, HI leaders can more easily picture its benefits: prioritizing patients’ access to their health information and empowering them to take control of their healthcare.

Information blocking and Health Insurance Portability and Accountability Act of 1996 (HIPAA) compliance training is ongoing at Valley Children’s Hospital, with activities broken out by month, quarter, and year, she notes. However, training related to the customer service aspect of information sharing is done in real-time.

Baranda says responding to patients’ data requests has “changed our culture” in that staff now “drop everything” to cooperate.

“If I hear my staff saying [to a patient], ‘Well, it'll take us up to 10 days to get your record,’ I lose my religion,” Baranda jokes. “I've told my staff: If a patient walks in or [calls], that is the most important release you're doing at the moment.”

For example, it used to take staff five to eight days to respond to requests for information, which is within California guidelines, Baranda says. It now takes them a maximum of two days as a result of their internal culture change.

“Health information professionals are the best equipped to affect this change, [and to help] not just our workforce, but our audiences, our patients, and our families,” she says.

In the past, HI professionals may have been too risk averse and inadvertently blocked patient health information over concerns about patient privacy and security. It’s time to reimagine their responsibilities, Baranda says.

“We need to embrace our roles as advocates for patients and knowledge experts for healthcare organizations. And we need to see this as our space and lead it,” she says.

Genevieve Diesing is a Chicago-based freelance writer with nearly two decades of experience writing about everything from hospitals to healthcare policy, health IT, DEI, and financial market shifts. As a healthcare journalist and content writer, Genevieve has worked as a staff writer and editor at Hospitals & Health Networks magazine, and written for national publications including The Atlantic, Elle Magazine, and the Chicago Tribune.