Electronic sharing of health information is still in the “Wild West” stage of U.S. federal regulation, privacy advocates say.
With Congress considering legislation to create a nationwide electronic health information sharing system, privacy advocates say the time for patients to make their voices heard is now. The privacy groups say federal regulations now allow patients’ information to be distributed to more than 800,000 health-related businesses and government agencies without permission. Go here for some background on this issue.
“Right now it is the Wild West in health technology. You (health IT companies) can do whatever you want to do and sort of shoot ’em’ in all of the little towns,” says patient privacy advocate Deborah Peel.
But there are some steps patients can take to protect what Peel, a doctor and founder of Patient Privacy Rights,calls “the most sensitive data about us.”
Ensuring your security
If a patient is concerned about privacy, says American Medical Association’s Joseph Heyman, the most important thing to do is ask questions.
“If they’re going to be sending your information over the Internet, you need to ensure that they are using an encrypted process,” Heyman advises. The AMA has information on how this is done.
It’s important to ask about the destination of information because some doctors use transcribing services overseas where companies do not have to follow U.S. privacy regulations, he says.
Also, ask insurers how they use the information they gather. Heyman says insurance companies often use personal information for administrative purposes like research on the quality of care provided by doctors and hospitals.
Patient Privacy Rights’ Web site offers a downloadable letter that patients can take to a health care provider to request that access to medical records be restricted. Peel says they do not have to comply, but a providera??s answer will let be informative of how it uses medical information.
The AMA says a patient can also take steps of his own, such as not sending personal information using a work computer where an employer owns the information sent.
Organize politically
Peel’s advocacy group is urging Congress to beef up privacy regulations, and he was joined by 25 other advocates in a letter distributed to congressional leadership.
The privacy advocates have a petition that can be electronically signed. Peel says the Web site soon will have a place to enter a zip code to automatically send a letter to a representative or senator. In the meantime she urges concerned patients to send their state delegations letters.
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