The CMS's proposal was intended to give patients data that is portable and can move with them if they switch insurers or doctors.
A federal effort to bolster data-sharing between health care systems and patients is getting pushback from doctors and hospitals, who express concerns about the implications for patient privacy.
In February, the Centers for Medicare and Medicaid Services and the National Coordinator for Health Information Technology released a proposed rule to require providers and insurers to put in place technological solutions that will allow patients easy access to their health care data. The idea was for patients to have data that is portable, and can move with them if they switch insurers or doctors.
Two prominent medical groups, however, have raised concerns about the use of third party apps that could sell patient data.
"Once the information is out there, it's virtually impossible to get it back," said Barbara McAneny, a past president of the American Medical Association. "The technological capability to implement these controls exists. If ONC doesn't implement controls, it is making a policy decision to not prioritize privacy."
The AMA said it is not necessarily opposed to requiring more data-sharing from providers, but that there need to be strict controls on how that information is shared, and with whom. As proposed, the group argues, providers may be required to share data with third party apps that are not governed by HIPPA.
The American Hospital Association said it was similarly disturbed by the potential for abuse.
"We are deeply concerned that third-party applications and tools not governed by HIPAA are increasingly accessing patient data and using it in ways in which patients likely are unaware," said the hospital group in June. "Patients' data is their own, and no organization, whether regulated by HIPAA or not, should be allowed to capitalize and monetize their data without the patient fully understanding what is occurring and agreeing to it."
ONC director Donald Rucker has tried to tamp down fears of data trafficking, arguing recently that patients can evaluate the privacy protections offered by various apps. He told Modern Healthcare last week that he believed "most patients are actually going to be as protective of their medical information as they are of their banking information."
However, Rucker also acknowledged that it may not be realistic to expect the average patient to accurately assess an app's privacy protections.
"I think we all realize that these end-user licensing agreements that we click through … don't really work in the modern world," he said to Modern Healthcare.
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