Sharing health information will help patients. Blocking data remains a problem.

Healthcare leaders say the wide exchange of healthcare data between hospitals, insurers, practices, and patients will eventually be a game-changer.

“We’re at a transformational moment in healthcare,” says Chad Dodd, vice president of product management at athenahealth, a healthcare technology firm that provides electronic health records.

The greater exchange of data can help patients be better informed about their health, and allow systems to get a more comprehensive view of their patients. “That’s essential for improved patient care and improved patient outcomes,” Dodd says.

However, Dodd and others say the key is to remove barriers blocking health data and allowing for true interoperability, where systems can exchange and use health information, he told Chief Healthcare Executive in a recent interview. Federal officials say some organizations aren’t sharing health data.

In October 2022, a federal regulation took effect greatly expanding the scope of health information to be shared by health equities. It’s part of the 21st Century Cures Act, which then-President Barack Obama signed in December 2016.

The Cures Act also includes a “blocking rule” to prohibit healthcare organizations from denying access to information.

“Information blocking is a critical component of it. It’s a critical driver for the true interoperability across healthcare,” Dodd says.

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Hundreds of complaints

The U.S. Department of Health and Human Services has yet to introduce penalties for those refusing to share health data. The Cures Act technically allows the health department to issue fines of up to $1 million, but the agency still has to define a system of penalties.

Federal officials say information blocking is happening.

Since April 2021, 571 claims of possible information blocking have been reported, the Office of the National Coordinator for Health Information Technology (ONC) says. According to the agency’s data, 472 of those complaints, or 82%, involve healthcare providers. Most of the complaints have been issued by patients (352), or by third parties representing patients (84). Providers have filed 67 complaints about denials of access to information.

Dodd says it’s clear some healthcare organizations are blocking the sharing of information.

When asked about information blocking, Dodd says, “It exists. It’s a problem. It’s real.”

U.S. Health and Human Services Secretary Xavier Becerra said last March that the majority of the complaints about information being blocked have involved healthcare providers. One patient wrote about waiting to hear about a biopsy and being told the results are available, but the patient couldn’t get the results because the doctor was out of town, Becerra said at the HIMSS Conference.

The penalties have yet to be announced, but Becerra said last March, “Closing this enforcement gap is an HHS priority.”

Micky Tripathi, head of ONC, told Healthcare Dive in December that federal officials were working on crafting penalties but didn’t have a timeline, due to the complexity of the effort.

The Office of Inspector General in the Department of Health & Human Services is drafting the penalties. When the penalties for information blocking are announced, Dodd says, that’s when “the change is going to happen.”

“When penalties are established, we’ll see movement,” Dodd says.

Health systems and hospitals have been struggling to comply with the expanded requirements for sharing information. Last fall, ten healthcare groups, including the American Hospital Association and the American Medical Association, among others, petitioned unsuccessfully for a delay in the information blocking deadline.

‘Momentum and energy’

Despite some delays, including the COVID-19 pandemic, some healthcare technology leaders say they are seeing much more momentum building for true interoperability in the industry.

Earlier this month, the federal government selected the first batch of companies as prospective Qualified Health Information Networks. Those companies will eventually be tasked with implementing the Trusted Exchange Framework and Common Agreement (TEFCA), which establishes a set of governing principles for the exchange of health information.

“We continue to make progress along the interoperability route,” Dodd says.

Critically, Dodd says that healthcare organizations are moving beyond talking about simply sharing the data and are now focusing on exchanging information in ways that can be integrated into workflows.

“I think you see a momentum and energy unlike ever before,” he adds. “Everyone is speaking the same language.”

Patients are going to be a key factor toward more interoperability because they want their healthcare information, Dodd says. Patients are seeking a different relationship with their healthcare providers, one that’s not just transactional, he adds.

“Patients are becoming consumers of healthcare,” he says.

As patients can get information earlier by viewing results on an app rather than waiting to hear from a provider, they can be more proactive. Dodd says he has heard of a case where a patient received lab results over a weekend when the practice was closed and checked into a hospital, a decision that saved the patient’s life.

“There are great outcomes happening by giving patients access to information,” Dodd says.

Dodd says the greater exchange of health information could be a boon to help independent practices and smaller healthcare providers.

“The independent practice can now have the same information as the primary care practice that sits within the health system,” Dodd says.

“That's critical for our independent practices to thrive,” he says.