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Controversial Changes to Patient Privacy Rules

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March 22 — President Bush wants to drop a new rule making it illegal for doctors or insurance companies to share any medical information without the patient’s written consent. NBC’s Myers reports

SEN. EDWARD KENNEDY, D-Mass., promised hearings and legislation to reinstate the mandatory consent forms. “It’s a violation of the most important and basic privacy rights of an individual. And it is wrong. It is basically a surrender to major corporate interests,” Kennedy charged Friday from the Senate floor. The first comprehensive federal protections for health privacy, which will take effect in April 2003, will apply to nearly every patient, doctor, hospital, insurance plan and pharmacy in the nation. They were developed under former President Clinton and allowed to go forward last year by the Bush administration, which at the same time promised changes. It was these revisions that were announced Thursday.

The rules prohibit health care providers from disclosing patient information for reasons unrelated to health services, and set civil and criminal penalties for violators. They give patients the right to inspect and copy their records and to ask for corrections. Written consent, not now required, would have been necessary under the Clinton rules to disclose patient information even for routine matters such as treatment and payment. The Bush revision does away with that requirement, saying providers must notify patients of their privacy policies. Also, doctors, hospitals and others who directly treat patients must make a “good-faith effort” to get written acknowledgment from patients that they have been notified. The changes also make clear that incidental releases of private information are permitted — a conversation at a hospital nurses’ stand or names listed on a sign-in sheet at a doctor’s office, for example. “These are common-sense revisions that eliminate serious obstacles to patients getting needed care and services quickly while continuing to protect patients’ privacy,” Health and Human Services Secretary Tommy said in a statement. DOCTORS, ACTIVISTS RAISE CONCERN Health care providers welcomed many of the changes. But the American Medical Association, which had urged the federal government to make the consent requirement less burdensome for doctors, joined privacy advocates who opposed eliminating the consent form requirements. “If patients believe that their information will be used inappropriately, patients won’t tell us things that we need to know for diagnosis and treatment,” said Dr. Palmisano, the AMA’s secretary-treasurer. Terri Sergeant, a patient who lost her job after her boss found out she had a genetic disease that would require $4,000 a month in treatment, is alarmed by any rollback of privacy rights. “I’m extremely upset, and I have a lot of fear for people, that now they will no longer have a choice who sees their medical information,” she said.

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Janlori Goldman, who directs the Health Privacy Project at town University, said that “it’s really unfortunate that HHS is proposing to eliminate the consent requirement.” “If people don’t know what their rights are,” Goldman asked, “how are they going to protect themselves?” HEALTH PROVIDERS’ TAKE Hospitals and insurance companies are siding with the president, saying the consent forms add to paperwork, and federal officials said they are not very meaningful because people who did not sign the form could — and probably would — be denied care anyway. HHS officials said the forms would have been a burden for people being treated in emergency rooms and could have caused problems for those who have prescriptions called into pharmacies and picked up by family or friends. “We have met what we think is the reasonable person expectation of how that information will be used,” said Claude , deputy secretary of HHS. RIGHTS OF MINORS Both the Clinton and the Bush versions of the privacy rule allow minors to keep privacy rights if specified under state law. Absent a state law, both would allow doctors to disclose information to parents.

The Clinton rule said, however, that minors who have the right under state law to access certain medical services should have the right to privacy, even from parents. Various state laws give minors the right to obtain services without parental approval for mental health, substance abuse or abortion services. Under the Bush revision, minors would not have that right except in unusual cases where state law explicitly allows it. “It’s a real step back,” Goldman said. “Anything that creates a barrier to teen-agers getting services is a problem.” MARKETING CHANGES The Bush regulation also clarifies the rules concerning marketing of products to patients. Personal information cannot be sold or given drug companies or others wanting to market a product or service without patient permission. Doctors, hospitals and insurance companies can communicate with their patients about benefits, new treatments and products without permission as long as the information is meant to benefit a patient’s treatment. The revised rules will be published next week and are subject to a 30-day public comment period before becoming final. The revisions and other background are online at www.hhs.gov/ocr/hipaa. The Associated Press and Reuters contributed to this report.

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