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  Last Updated on 07/13/2018

Patient Privacy Rules Bring Wide Confusion; New Directives Often Misunderstood


By Rob Stein, Washington Post, August 18, 2003
HIPAA = Health Insurance Portability and Accountability Act

The transplant patient was recovering well when doctors discovered that his new heart might have been infected with bacteria before the operation. When the doctors sought more information so they could give the man the right antibiotics, the hospital where the donor had died refused, citing new federal patient privacy rules.

"It was ridiculous. The only live part of the donor was in our patient," said Deeb Salem, chief medical officer at the Tufts-New England Medical Center in Boston.

As it turned out, Salem's patient was in no danger from the infection. But because the donor's hospital refused to release any information, doctors were forced, as a precaution, to put the man on multiple antibiotics, potentially exposing him to dangerous side effects.

"It cost our patient the risk of being on multiple antibiotics for 12 to 15 hours, not to mention a lot of money," Salem said.

The case is an example of widespread confusion about the privacy rules, which went into effect this spring and provide the first federal protection of medical records. The rules, in fact, explicitly permit doctors and hospitals to release information without a patient's authorization for treatment reasons -- which would have covered the Boston situation.

But frequent misunderstandings about what the rules allow have been causing frustration, uncertainty and anxiety in doctors' offices, clinics, hospitals and even pharmacies across the country.

Patients are complaining about suddenly having to fill out long, complicated forms. Family members say they often can't find out how a loved one is faring when they call the hospital. Doctors can't get test results for patients. And, at least in some cases, these snags are hindering doctors' ability to care for patients.

"There is not a practicing physician that I run into that doesn't say they've had a problem that might have adversely affected a patient," said Salem, also a professor of medicine at Tufts University School of Medicine.

Confusion over the rules has triggered a fresh round of acrimony over the issue of medical privacy, long a focus of controversy. Supporters argue that doctors are exaggerating the problems, and that some hospitals are intentionally overreacting. Critics contend the regulations are vague, open to various interpretations and overly restrictive.

"It's more than just health care providers being unable to get the information they need to care for patients -- it's patients not being able to get information, family members not being able to get information. It's across the board," said Todd Taylor, an emergency room physician in Phoenix.

Proponents of the rules acknowledge that misinterpretations are rampant. But they say problems are diminishing steadily as hospitals and health care professionals become familiar with the new requirements.

"We saw quite a few reports right after the rule went into effect, but the number of reports and the number of calls we're getting have really decreased," said Richard M. Campanelli, who heads the Office of Civil Rights at the Department of Health and Human Services, which is in charge of implementing the new rules.

The regulations are the result of the 1996 federal Health Insurance Portability and Accountability Act (HIPAA). They are designed to give patients more power to limit access to confidential information, including keeping personal health data out of the hands of marketers.

The overwhelming majority of problems appear to be the result of misunderstanding the law's requirements or erring on the side of withholding information to avoid inadvertently violating the new restrictions.

The rules, for example, unequivocally allow doctors, hospitals and other health care entities to provide information about patients to other treating physicians without authorization from the patient, precisely to avoid endangering care.

"It's one of the big misunderstandings," said Janlori Goldman of the Health Privacy Project at Georgetown University, which has been monitoring HIPAA's implementation. "Many doctors and hospitals either misunderstand the rule or take an extreme reading of it. The privacy law requires no such thing."

In some cases, Goldman suspects that hospitals are using the new law as an excuse for their own, more restrictive policies.

"We are aware of circumstances where hospitals have more restrictive policies than the rule, and they're saying the new law requires this," Goldman said.

Before the rules went into effect, the Bush administration made changes aimed at avoiding interfering with care.

"We wanted to make sure that the correct balance was hit -- that the rule would protect privacy of information but not interfere with access to health care," Campanelli said. "We wanted to make sure that privacy was protected, but when you're talking about treatment, we certainly wanted to make sure the information flowed from doctor to doctor."

But critics such as Taylor say fears about how the rules might be interpreted by courts lead many health care workers to err on the side of caution.

"With any new regulation, you don't know what's going to happen with it until it goes through the courts. The government says one thing but then it gets interpreted differently by the courts," said Taylor, an emergency room physician at Banner Good Samaritan Medical Center in Phoenix.

Taylor said he has encountered several instances in which a patient died and relatives called from out of state to find out what happened, and staff members were uncertain whether they could tell them.

"Here I am, an emergency room physician, and I can't answer that question. I don't know if the question has been addressed, or if it has been addressed, whether it's been litigated yet," Taylor said.

Another problem occurs when doctors are trying to get information about uncooperative patients, Taylor said.

"Prior to HIPAA, we used to be able to call up a national drugstore chain and ask what a patient's medications have been. We can't do that now because of HIPAA. It may be a patient trying to obtain narcotics. You want to verify whether they're telling the truth," he said.

Hospitals in Arizona were creating a statewide computerized system for exchanging patient information, as part of an effort to reduce medical mistakes. That has been put on hold, he said. "Now we have to make sure its HIPAA-compliant," he said.

Campanelli said one of the most common misconceptions is that doctors can't talk about patients to family members or close friends.

"We're seeing a lot of patients who are saying their doctors say they can't talk to anyone but the patient -- not to friends or family members. That's a misconception. The privacy rules let the doctor talk to friends and family members," Campanelli said.

But Judith E. Tintinalli, chairwoman of emergency medicine at the University of North Carolina at Chapel Hill, said it remains far from clear where to draw the line.

"What people are getting skittish about is, 'What are the limits? What are the boundaries of information exchange?' " she said. "Everybody is very skittish about exchanging patient information. There used to be a lot of off-the-cuff exchanging of information. All that has come to a screeching halt."

Trepidation about releasing information is causing problems in many areas of medicine. At the Greater Baltimore Medical Center, cancer chemotherapy patients have had trouble getting treatments because laboratories refused to release their test results to the cancer center.

"We've had a lot of treatment delays because of it," said Dawn Stefanik, clinical manager of the infusion therapy department. "For the patients, it's very frustrating."

But many medical workers and officials say the problems appear to be diminishing.

"Initially, the staff people were probably scared to death about screwing up and getting in trouble, and so were being overcautious. People are getting the hang of it," said Margo Williams of the American College of Physicians.

Charles B. Inlander, president of the People's Medical Society, a consumer group, said the problems have been exaggerated by doctors, who don't like the extra work the new law has created. "It's a good law," Inlander said. "I suspect what you're hearing is very isolated and very rare. It's often the case with these things that doctors have to do more work and try to blow problems into much more than they are."

But Salem and other critics say the rules often do more harm than good.

"One of the most common causes of medical errors is poor communication," Salem said. "HIPAA by nature adds one more barrier to communication. There is a benefit. But there's also a cost."

Salem had another case involving a man who suffered chest pain after an exercise stress test. When the cardiologist asked for a fax of the test results, the request was refused, citing HIPAA. It took two hours before the results were faxed, Salem said, adding to the patient's stress at a precarious moment.

"His face got very red. I think it did contribute to him getting into a mild degree of trouble. He couldn't believe it," Salem said. "That scenario is being repeated many times."




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