As the information blocking debate rages on, one researcher is advocating for an unorthodox approach: Allow vendors and providers to charge fees for managing and exchanging health data.
Pointing to the banking industry as the gold standard for information exchange, Niam Yaraghi, an assistant professor of operations and information management at the University of Connecticut’s School of Business and a fellow at the Brookings Institution's Center for Technology Innovation, believes that instead of making access to health information a right, Congress should make legislative adjustments to the Health Information Technology for Economic and Clinical Health (HITECH) Act and HIPAA to allow companies to charge data transmission fees.
Currently, under HIPAA, companies are limited to charging a “reasonable, cost-based fee” to cover labor, supply and postage costs associated with processing a records request. Last year, the HHS Office for Civil Rights specified that providers can’t charge a fee to patients that access their health data using the “View, Download, and Transmit functionality” of a certified EHR.
Under HITECH, providers are prohibited from charging a fee that exceeds the labor costs associated with responding to the request.
“Declaring something as a right creates expectations, but it does little to help overcome specific obstacles,” Yaraghi wrote on Health Affairs Blog. “Congress’s decision to declare free transmission of medical data as a patient’s right does nothing to help it happen. More importantly, its decision to ban charging data transmission fees has eradicated any incentive for entrepreneurs to invest in providing this service.”
Declaring something a right doesn't make it happen!— Niam Yaraghi (@niamyaraghi) September 19, 2017
Patients are hurt by Congress's decision to declare "free access to EHR" a right.
Allow EHRs and HIEs to charge fees for data access, management & transmission. This is the only way to stop #datablocking— Niam Yaraghi (@niamyaraghi) September 19, 2017
His view runs counter to many who believe patients should have access to their health information free of charge. At Datapalooza in April, privacy attorney Ann Waldo advocated for doing away with medical record fees altogether.
“We need to get to that point now where we don’t charge people a fee at all to find out what happened to them in their own lives,” she said.
In fact, Yaraghi’s perspective is a notable reversal from his previous position outlined in a 2015 post in which he argued patients should have free access to their medical data. On Twitter, he said he changed his position after he “got to think deeper about the issue,” noting that “previous efforts don’t seem to yield results.”
Last month, Lucia Savage, former chief privacy officer at the Office of the National Coordinator for Health IT wrote that “protected health information in the custody of the EHR developers is not theirs to monetize,” and urged the Office of the Inspector General to use HIPAA recover improperly paid EHR incentives and identify instances of information blocking.
But Yaraghi counters that the vast majority of EHR vendors are compliant with Meaningful Use regulations and that “it is not reasonable to blame only uncooperative EHR vendors and dishonest providers for the system’s broad failure to effectively exchange information.”