Is my prescription information private?

Published: July 18, 2014 11:00 AM

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Not exactly. When you pick up a medication from the pharmacy, you probably don’t give much thought to how your prescription information will be used. Or that it could provide pharmaceutical companies with the necessary information to promote drugs to your doctors. But it can. It’s called data mining, and it’s big business.

Prescription data mining uses something called “de-identified” prescription drug information to generate reports about doctors’ prescribing practices. Basically, that’s the prescription details, such as the drug name, dosing instructions, and the doctor who prescribes it—just without your name, birthday, social security number, or other personal information.

While data mining reports can be used for research purposes and to help track drug safety problems, they are also commonly purchased by pharmaceutical companies and used to strategically market drugs to doctors. In  2010, companies engaged in prescription data mining together generated $9 billion in revenue by selling thousands of market research reports, according to the nonprofit advocacy group Privacy Rights Clearinghouse.

HIPAA, or the Health Insurance Portability and Accountability Act, gives you certain rights covering your protected health information, including the right to get a copy of that data and correct any errors. But since de-identified prescription data is not covered by HIPAA, the sale of such information is legal, according to the Privacy Rights Clearinghouse.

Some states have challenged prescription data mining. In 2011, the Supreme Court struck down a Vermont law that attempted to regulate the practice of data mining of prescription information. In their wrap-up of the case, the Clearinghouse stated that the Court agreed with the argument that the law was an unconstitutional regulation of commercial speech and a violation of its corporate First Amendment rights.

"Pharmacies are not wired to keep your prescription data private," Deborah Peel, M.D., founder and chairwoman of the advocacy nonprofit Patient Privacy Rights, said. And there’s not a whole lot you can do to prevent your prescription record from being sold, according to Peel.

One thing you can do:  Ask your doctor if he or she has opted out of sharing prescription information with pharmaceutical sales reps via the American Medical Association’s Physician Data Restriction Program—a program available to all physicians. The program allows physicians to still make their prescribing data available for medical research purposes. They can also register complaints against sales reps or drug companies who they believe are using prescribing data inappropriately.

Peel also recommends that you request a copy of your prescription record from your health care providers, health plans, and pharmacies for the last year, and make sure all your information is accurate. "Your information is everywhere," Peel said. "At the very least you should have a copy of it, too.

—Ginger Skinner


Editor's Note:

This article and related materials are made possible by a grant from the state Attorney General Consumer and Prescriber Education Grant Program, which is funded by the multistate settlement of consumer-fraud claims regarding the marketing of the prescription drug Neurontin (gabapentin).

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