Patients, lawyers, developers, and others across the country have lodged more than 250 federal complaints against health care providers they say have made it harder for patients to access their own electronic medical data. Now, pressure is mounting on the federal agencies investigating the claims to handle them faster — and to disclose far more details about what they find.
Health technology leaders and former federal officials have started publicly pressing the Department of Health and Human Services to more aggressively approach instances of “information blocking,” or any interference with the exchange and sharing of patient data.
Since the information blocking rule took effect last April, patients themselves have submitted 176 complaints to an online portal managed by the Office of the National Coordinator for Health IT, the agency responsible for defining which practices qualify as information blocking. But the agencies tasked with levying penalties against health providers and organizations that violate the ban have yet to announce how they’ll do that nor exactly when enforcement will begin.
In a report released earlier this month, ONC said 77% of complaints were filed against providers, and just about 17% were filed against the companies developing health IT, which includes electronic health records, and whom critics have long accused of opposing data sharing to preserve business.
“This is like the police department describing the quality, sources, and suspects of 911 calls,” Jacob Reider, former deputy national coordinator of health IT, told STAT. “It’s interesting but doesn’t really tell us much about whether crime is being committed and by whom, and how we might prevent such crimes in the future.”
The names of the individual violators, he said, matter less to him than broader patterns in information blocking behavior, which could help the health care industry “act on such insight now rather than wait for full investigations to be completed.”
Part of the confusion is that no single agency is solely responsible for enforcing the ban. While ONC collects the complaints, only the HHS’ Office of Inspector General is authorized to investigate them and to crack down on health IT vendors and health information exchanges. And it’s up to HHS Secretary Xavier Becerra’s office to define disincentives for providers, according to the 21st Century Cures Act, which banned information blocking.
While OIG is expected to publish its final rule on enforcement later this month, Becerra’s office did not respond to requests about a timeline for actions against providers.
“The HHS secretary needs to act so that providers are also subject to the same disincentives and penalties as health IT vendors and [health information exchanges],” Lisa Bari, former health IT and interoperability lead at the Centers for Medicare and Medicaid Services, told STAT. Bari now heads Civitas Networks for Health, a nonprofit collaboration pushing for better exchange and use of health data.
”The key message coming out of ONC is that, number one, providers have a higher share of complaints than people had anticipated relative to EHR vendors,” Aneesh Chopra, the White House’s first chief technology officer under former President Barack Obama, told STAT, adding that it “creates more policy pressure to formalize penalties with respect to physician adoption and use” of data sharing standards. Chopra now leads the health care analytics company CareJourney.
Providers say that until the enforcement process is made clear, they have little understanding of the consequences they’ll face for interfering with data sharing, Steven Lane, a primary care doctor who sits on ONC’s federal Health IT Advisory Committee, told STAT. “We want clarity from [HHS] regarding the disincentives for providers in particular,” he said.
While they wait for enforcement, other former federal officials have pressed ONC to share more about the complaints they’ve received against providers, with some taking to Twitter to call for greater transparency on violators and violations. The agency told STAT that federal statute limits what it can disclose publicly.
Reider said he also suspected most of the complaints came from patients already familiar with the information blocking rule and their federal rights to access their own medical information.
That patients are filing complaints signals that they “really do want their data, and they have learned that they are supposed to be able to get it, no questions asked,” said Lucia Savage, formerly ONC’s chief privacy officer under Obama. Savage is now the privacy and regulatory lead at digital therapeutics company Omada. “I just hope that the data holders, from multistate hospital systems and nationwide plans to small offices, are paying attention.”
While the standards ONC set have established data sharing norms for health care organizations, the government still lacks an “end-to-end process from complaint to action with feedback loops,” Chopra said. “Which is why you saw the debate on Twitter, to say ‘This is half a loaf, where’s the rest of the loaf?’”