Putting Patient Privacy in Peril?

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The idea for "Putting Patient Privacy in Peril?" came from BusinessWeek.com reader WP, a pseudonym for a U.S. federal government employee who wishes to remain anonymous.

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The Food and Drug Administration also has the right to see consumer records as they relate to problems with food or dietary supplements, she says. There's no evidence that government access to people's records will be curtailed by the stimulus package.

Discrimination Worries

Researchers say access to large pools of digitized records will make it easier to find new treatments for diseases and to catch adverse drug reactions much more quickly than possible now. In 2007, Kaiser Permanente started a large research project in the U.S., electronically tracking genetic, health, and lifestyle information from hundreds of thousands of adult patients in Northern California. Researchers hope to glean new insights into illnesses such as heart disease, cancer, diabetes, high blood pressure, Alzheimer's disease, and asthma. Participation is voluntary and requires written consent.

Privacy advocates welcome some aspects of the new legislation. For example, it requires organizations to keep audit trails of those with whom they've shared patient information. "There was clearly recognition by Congress that even as we move perhaps to a more efficient health-care system based on use of electronic records that we need to be very sensitive to privacy violations in the process," says Caroline Fredrickson, director of the Washington legislative office at the American Civil Liberties Union.

A big worry is that potential employers and health insurance providers that get their hands on data could discriminate against people—or their children—based on their future potential for acquiring certain diseases. Fredrickson and others say much will depend on regulations that will be drafted in the next couple of years. Aside from consent, Fredrickson wants to know how much control patients will have with their records and whether there will be adequate penalties for companies that improperly obtain or use information.

One of the government's goals with electronic medical records it to make it easier to share health information among doctors, not only within a hospital but potentially nationwide as well. Even some doctors aren't comfortable with the security and privacy implications. Svetlana Kogan, a private practitioner of internal medicine on the Upper West Side of Manhattan, stores her paper charts in a secure area that is out of reach of anybody except authorized personnel. "If this becomes deposited on my hard drive, it's a matter of a memory stick and people have access to thousands of records," she says, adding, "That makes me feel vulnerable as far as privacy is concerned."

Return to the CEO Guide to Electronic Health Records

King is a writer for BusinessWeek.com in San Francisco.