Gathering Information
The advertisements seem benign: Call a toll-free number or complete a survey about your allergy symptoms. In return, receive information about treatment approaches.

To most consumers, this may appear to be just another way for pharmaceutical companies to market their products. Little do they know this personal medical information could go into a database, searchable by pharmaceutical companies or pharmacy benefit managers (PBMs). It could even find its way to their health insurance provider or employer.

Linda R. Hughes, MD, a Dallas psychiatrist, can recall two instances where patients may have unknowingly approved of the dissemination of personal medical information.

"A patient said she sent off for a 90-day prescription, and there's a place on the request for a signature release. The companies try not to get sued by saying this is informed consent-it's not. I have another patient who filled out a seemingly innocuous questionnaire and in the middle of it was a release for her to sign. I recommend that patients don't sign those releases."

Direct Marketing to Patients and Physicians
What's considered a diagnosis to patients or physicians is valuable demographic information to a pharmaceutical company. And they're reaching out directly to patients to get it.

"This is an entirely new consumer resource with direct advertising finding ways to build patient databases without patients even having filled a prescription," says Connie Barron, TMA's associate director of legislative affairs. "It's one thing to call an 800 number if you have allergies; it's another when you're looking for drugs that help prevent breast cancer or when companies start direct marketing Viagra.

"People assume that if they provide information about their health, it's somehow protected and private," Ms Barron says. "They have no idea this is a huge money maker for pharmaceutical firms to have access to these people."

And their physicians.

"I get letters telling me, 'Your patient has diabetes and he should be on this medicine and he is not,'" says Maya B. Bledsoe, MD, an Austin reproductive medicine specialist and member of the TMA Patient-Physician Advocacy Committee. "So, they're telling me what I should be doing with these patients. I'll see patients who switched from one medication to another because it was cheaper, and it doesn't always work as well."

She believes when such information is used by insurance companies, it constitutes the practice of medicine.
Dr Hughes became actively involved in seeking a solution to this breach of privacy after a marketing representative from a pharmaceutical company visited her office.

"She had a list of 31 patients and recommended I change those patients' antidepressant medication to the one her company distributes," she recalls. "Where did they get that information?" she wonders. "That's where I think it's improper. "I have some high-profile patients-lawyers, doctors, judges-and they were horrified that people would know they were seeing a psychiatrist and they were on antidepressants." Dr Hughes believes such breaches of patient privacy permeate the medical community.

"I have lunch with a group of pediatricians every week and they tell me they're getting letters all the time from PBMs about their patients' medications," she says. "They'll get a letter saying one of their patients is on this antihistamine and we want you to change to this antihistamine."

Although the practice is widespread, Dr Hughes questions its success in persuading physicians to change prescriptions.

"I don't know of any physicians who do," she says. "I certainly would change nothing."

How Privacy is Compromised
The sharing of patients' medical histories has been noted across the country, as New York Times columnist Bob Herbert wrote in October. He referred to a Providence, RI, psychiatrist who received a letter from a company that reviews prescription drug benefits for insurers and employers. The letter contained what should have been confidential information about one of his patients, including her prescription records, and noted she was taking an antianxiety drug. The company wanted to know why the patient was taking the medication. Was she depressed or did she have a panic disorder or was she experiencing alcohol withdrawal? Did the physician plan to continue giving her that medication?

The doctor didn't provide the requested information. "Frankly," he was quoted as saying, "it is none of the company's business."

The patient was upset to learn her employer had examined the records of her psychiatric treatment. The psychiatrist said many of his patients are afraid to be completely honest in therapy because they fear people other than their physicians will learn about matters that were supposed to have remained secret.

PBMs who have this information, she says, sell cost-control programs to employers. "For example, a PBM finds patients on antidepressants," she says. "The PBM contacts the physician and wants additional information on each patient-a diagnosis, how long he's been on the medication, how long the physician thinks the patient will be on it.
"Then the PBM goes right to the patient and says, 'We see you're on an antidepressant. At the request of your employer, you've been enrolled in this program to help with your depression and learn the importance of staying on your meds.' If the patient doesn't get the prescription filled, the PBM calls back.

"The patient is concerned about how much the employer knows about his medical record and treatment, especially when it is a condition that unfortunately can have a stigma attached to it," Ms Barron says. "Then the questions become: What else are they doing with the info? Who else are they selling it to?"

Managed care companies, for one, according to Ms Barron. PBMs will write an HMO medical director and tell him which physicians they believe are overprescribing. "And they're going directly to patients, saying, 'The drug you're on is costing this much money, and there's another one that's just as good. Please call this phone number and ask your physician to call in and change your medication.'"

She's heard of patients who said they were afraid that if they didn't change medications, their health insurance would be cancelled. "The amount of fear in patients is incredible," she says.

With good reason, according to Dr Hughes. She believes this is more than a privacy issue. "For years, I have seen a number of patients who have been turned down for life and health insurance because of taking an antidepressant medication," Dr Hughes says. "People need to be aware that there is no confidentiality and that, if they want change, they need to contact their state legislator."

Call Tracy Pulaski, DCMS director of public affairs, or e-mail pulaski@dallas-cms.org for information on how to contact your legislators.

DCMS & TMA Advocacy
DCMS and TMA want to educate the public about its vulnerabilities and this new form of privacy encroachment. The public needs to know that physicians are no longer the only people with access to patient information and are no longer in direct control of where patient information flows.

TMA encourages physicians to contact the TMA Patient-Physician Advocacy Committee with their concerns about such cases.

TMA is looking at what can be done at the state level, perhaps legislatively, regarding better protection for patient medical records. A number of bills have been filed in Congress in an attempt to deal with the issue. Although there is nothing significant to date, the issue is building momentum.

On the local level, DCMS introduced a resolution to the TMA House of Delegates in 1998 regarding the privacy of patient information. The resolution asked TMA to encourage pharmaceutical companies to discontinue providing confidential quality assurance/quality initiative prescription drug profiles for marketing purposes and to seek legislative controls to prohibit the use of patient prescription information in the marketing of pharmaceutical companies. In 1999, the TMA House of Delegates approved the resolution.

 

© 2000, Dallas Medical Journal. The above is for private use by viewer only and is not to be reprinted without permission by the Dallas County Medical Society.

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