Most Information Blocking Allegations Come From Patients

Over the nearly one year since the 21st Century Cures Act rules against information blocking went into effect, only a few hundred complaints have been submitted to the ONC. The bulk of complaints about alleged information blocking have come in from patients.

Since April 5, 2021, when the regulations kicked in, nearly 300 complaints have come into the ONC through its information blocking portal. Given the apparent scope of the problem, this seems like a relatively small number, and suggests that the public may not be fully aware of the information blocking rules or perhaps not clear how to submit a complaint when they have one.  It’s also possible they don’t care to submit since most of the enforcement for information blocking have still not been outlined.

To be classified as potential information blocking incidents, the submissions had to be related to actions by an information blocking “actor,” which include healthcare providers, health IT developers of certified health information tech and health information networks/exchanges.

The claim also had to be related to electronic health information (EHI) as defined by regulations. (Until October 6, 2022, the definition includes a limit that the EHI must be identified by data elements represented in the USCDI v1, which means that certain EHI types, like image files that might otherwise meet the definition of EHI, don’t count at present.)

While a total of 299 submissions came through, 25 of them didn’t seem to present an actual claim of information blocking, ONC found.

Of the remaining 274, the largest category of claimant was patients, who submitted 176 of the claims (or had attorneys submit the claim on their behalf).  Thirty-two were submitted on behalf of patients by third parties, such as the patient’s parents or personal representatives, 32 seemed to come from providers and 20 from developers of health IT.

When analyzing the actors involved, ONC concluded that 211 claims were probably against healthcare providers. Forty-six claims seemed to allege information blocking by a health IT developer, and of those, 42 were against health IT developers participating in the ONC Health IT Certification Program.

When considering what concerns were arising among the claimants, they seemed to square with ONC’s examples of practices likely to interfere with access, exchange or use of EHI described in the information blocking rules.

For example, the ONC analysis found that healthcare providers reported being charged with what they consider to be excessive fees to access EHI or to export EHI to a new EHR system or encountering needless delays in getting EHI required for their patients. On the patient side, they reported being charged fees for electronic access to their health information, running into unnecessary delays in getting EHI access, or both.

In most of the cases, the HHS Office of Inspector General is the agency tasked with investigating information claims, but not always. Some of the claimants said that a health IT developer of certified health IT had engaged in information blocking, and in these cases, the ONC has the authority to investigate these claims internally in addition to sharing them with OIG.

It’s still not clear how many of these complaints are founded. That being said, the process of finding and addressing information blocking issues has at least begun.

   

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