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Privacy group sounds alarms over personal health records systems

Medical data stored online may fall outside of HIPAA's privacy protections, report claims

February 20, 2008 12:00 PM ET

Computerworld - In some cases, people whose health care information is stored in online personal health records (PHR) systems may be exposed to serious data privacy risks, according to a warning issued by a privacy advocacy group.

That's because not all PHR systems are covered by the federal Health Insurance Portability and Accountability Act, the World Privacy Forum said in a 16-page report released today (download PDF). The WPF contended that as a result, many of the privacy protections offered under the HIPAA statute don't apply to the personal health care data being maintained in such systems.

PHR systems typically store medical records gathered from a variety of sources, including health care providers, insurers and patients themselves. The information is made accessible via the Web to individuals and to others who they have authorized to view the data. "As a new type of convenience technology for consumers, PHRs are promoted as giving consumers more knowledge and an opportunity to be more actively engaged in their own health care," the San Diego-based WPF noted in its report.

But people need to be aware that the systems may fall outside of HIPAA's protective umbrella, said Pam Dixon, the group's executive director. The HIPAA privacy rules cover health plans, doctors, hospitals, clinics, nursing homes and even researchers working with medical data collected from those entities, she said. But commercial PHR systems maintained by IT vendors or services providers and supported by means such as advertising may not come under HIPAA's purview, according to Dixon.

And even in cases in which a PHR system is covered by HIPAA, there are circumstances under which an individual's medical records may not be protected, Dixon said. For instance, she pointed to medical information that a person puts into the PHR system on his or her own behalf.

There are several problems that could result from the lack of privacy protections, Dixon said. For starters, she claimed, health records could lose their privileged status if a patient authorizes a doctor to send a copy of the information to a PHR system that isn't covered by the HIPAA mandates.

"Many consumers have this deeply held belief that their health information, no matter where it travels, is protected in the same way as when you have a doctor/patient relationship," Dixon said. In reality, consenting to have data transmitted to a noncovered system likely would be viewed as an indication that you had waived your privacy privilege, she added.

Health information stored in commercial PHR systems is also less protected against subpoenas than it otherwise would be, Dixon asserted. Under HIPAA, if someone seeks to subpoena medical records about an individual from a covered entity, the patient has to be informed first. But that protection doesn't apply to PHRs in all instances, she said.

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