Electronic sharing of health information is still in the WildWest stage of US federal regulation, privacy advocates say.
With Congress considering legislation to create a nationwideelectronic health information sharing system, privacy advocates saythe time for patients to make their voices heard is now. Theprivacy groups say federal regulations now allow patients’information to be distributed to more than 800,000 health-relatedbusinesses and government agencies without permission. Go here forsome background on this issue.
“Right now it is the Wild West in health technology. You (healthIT companies) can do whatever you want to do and sort of shoot ’em’in all of the little towns,” says patient privacy advocate DeborahPeel.
But there are some steps patients can take to protect what Peel,a doctor and founder of Patient Privacy Rights,calls “the mostsensitive data about us.”
Ensuring your security
If a patient is concerned about privacy, says American MedicalAssociation’s Joseph Heyman, the most important thing to do is askquestions.
“If they’re going to be sending your information over theInternet, you need to ensure that they are using an encryptedprocess,” Heyman advises. The AMA has information on how this isdone.
It’s important to ask about the destination of informationbecause some doctors use transcribing services overseas wherecompanies do not have to follow U.S. privacy regulations, hesays.
Also, ask insurers how they use the information they gather.Heyman says insurance companies often use personal information foradministrative purposes like research on the quality of careprovided by doctors and hospitals.
Patient Privacy Rights’ Web site offers a downloadable letterthat patients can take to a health care provider to request thataccess to medical records be restricted. Peel says they do not haveto comply, but a providera??s answer will let be informative of howit uses medical information.
The AMA says a patient can also take steps of his own, such asnot sending personal information using a work computer where anemployer owns the information sent.
Organize politically
Peel’s advocacy group is urging Congress to beef up privacyregulations, and he was joined by 25 other advocates in a letterdistributed to congressional leadership.
The privacy advocates have a petition that can be electronicallysigned. Peel says the Web site soon will have a place to enter azip code to automatically send a letter to a representative orsenator. In the meantime she urges concerned patients to send theirstate delegations letters.
Freeman Klopott writes for the Medill News Service.
