Reintroduced bill could give data brokers more options under HIPAA

By Jonah Comstock
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Congresswoman Cathy McMorris Rodgers (R-Washington) introduced to the US House of Representatives that would change the way HIPAA applies to health data clearinghouses. Versions of the bill, called the "Ensuring Patient Access to Healthcare Records Act," has been introduced in previous sessions but has never made it to the floor.

Healthcare clearinghouses are organizations that receive healthcare claims data and convert it into HIPAA compliant forms. They have always been considered covered entities under HIPAA, along with payers and providers, but they could also be considered business associates depending on the situation. The new legislation would see them always counted as covered entities -- with both the rights and responsibilities that entails in terms of patient data. 

That means that patients will be able to request their records from clearinghouses the way they can now request data from their healthcare provider. Because clearinghouses have longitudinal records compiled from multiple sources, the theory is that this will make it easier for patients to get access to accurate, complete versions of their own records. 

“Even in the age of technology, it can be difficult for patients to obtain their comprehensive health records," Rodgers said in a statement. "Whether it’s because of a move to a new state, switching providers, an unexpected visit to the emergency room, or a new doctor, patients must track down their own records from numerous different sources based on what they can or cannot remember. It shouldn’t be this burdensome. Our bill gives patients the ability to see a snapshot of their health records at just a simple request, allowing them to make better, more informed healthcare decisions in a timely manner.”

But experts aren't sure the bill will necessarily have that effect. David Harlow, a noted healthcare lawyer , says the kind of data clearing houses have isn't really all that useful to patients.

"The issue there is that claims-only data rather than full clinical data is sort of notoriously untethered to reality for a variety of reasons," he told Babyforyou.net.ua. "For some patients with complicated and involved medical histories it may be useful, but for individual patients I’d rather have full clinical records than claims data alone."

Barring a big change in how clearinghouses operate, Matt Fisher, chair of the health law group at Mirrick O'Connell, said he doesn't see the law working as designed.

"There’s a feeling that this is going to help increase the ability of individuals to access their records by going to a clearinghouse [because] it’s more likely to contain a complete record set because it’s gathering it from multiple sources," he told Babyforyou.net.ua. "I think that’s probably a very optimistic view of it. ... Given that off the top of my head I don’t know that I could identify a helathcare clearinghouse for you, I don’t know how much it helps the individual. Are they going to know the clearinghouse is actually holding their data?"

Still others see the law as actively harmful. Writing on The Healthcare Blog about a previous version of the bill, Dr. Adrian Gropper said it amounted to "a coalition of data brokers ... asking Washington to remove the little control over privacy that we have left by giving the data brokers the same HIPAA lack-of-consent treatment that our hospitals and insurance companies already have." From Gropper's perspective, treating clearinghouses as providers is disingenuous since patients at least choose their provider whereas their clearinghouse uses and sells their data without express consent.

Data brokers currently make most of their money off of deidentified data, which is exempt from HIPAA. But currently it's not possible to create longitudinal data out of deidentified data. Under the new law, it might be, which could create a tempting new product, useful for population health and real-world evidence, but also potentially sellable. 

"This seems to me like an acknowledgment of the complete failure of things like interoperability," Harlow said. "These things already could have happened but they’re not happening. The problem of an individual patient not being able to put together a lognitudinal record is helped here only because there’s a longitudinal record of claims."

Critics have also noticed that the bill allows clearinghouses to charge a fee for patient access to their own data, though Fisher says the amount of this fee is strictly limited by the law, just as it is for providers, so patients are unlikely to be extorted.

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