Contrary to government assurances, in less than two months nearly all medical records will be opened up to the federal government and private corporations, a prominent privacy group has warned.

“Beginning Oct. 15, 2002, your existing medical records – information that you had previously given consent for – will become open to many others,” says a constituent letter issued Monday by the Institute for Health Freedom.

The warning comes on the heels of a Health and Human Services announcement Aug. 9 that the agency has revised a Clinton-era medical privacy rule. The mandate currently requires physicians and other health-care practitioners to get a patient’s consent before releasing personal health information for the purposes of treatment, payment or other “health-care operations” – the latter a “broad definition” IHF says could apply to several uses.

HHS Secretary Tommy Thompson said that rule needed to be revised because as it is, it is cumbersome for patients and inefficient for the health-care industry. He has also tried to allay fears that personal medical data would become an open book.

“Patients now will have a strong foundation of federal protections for the personal medical information that they share with their doctors, hospitals and others who provide their care and help pay for it,” he said. “The rule protects the confidentiality of Americans’ medical records without creating new barriers to receiving quality health care. It strikes a common sense balance by providing consumers with personal privacy protections and access to high-quality care.”

But IHF disagreed, calling Thompson’s reassurances “misleading.”

“Rather than allowing individuals to decide who can see their medical records, HHS is granting federal regulatory authority for data processing companies, insurers, some researchers, government officials and others to access individuals’ personal health information” without their permission, IHF officials said in a letter to constituents.

“While claiming to be committed to ‘maintaining protections for the privacy of individually identifiable health information,’ HHS’s privacy rule does not prevent government or the medical industry from compiling and sharing individuals’ personal health information,” said Sue Blevins, IHF president.

“How can HHS say a patient’s privacy is being enhanced when, in fact, HHS is actually granting legal access to patients’ records without their consent?” she added.

“Currently when we see a doctor the traditional common practice has been to present the patient with a consent form that is used to get permission for the patient to have his medical records released,” says Robin Kaigh, a New York lawyer who has tracked medical privacy since the bill’s passage.

“When we leave an old doctor or want medical records transferred for any reason, that consent form establishes that the patient has approved the transfer of the record,” she told WorldNetDaily. “If we have a personality conflict with a prior physician, we can start over fresh with any new doctor by simply not approving the transfer of the medical record.”

But under the new rules approved by HHS, “the patient is only given notice of who the medical record will be shared with – quite a different scenario,” she said.

According to published guidelines, HHS says patients “must give specific authorization before entities . . . could use or disclose protected information in most non-routine circumstances, such as releasing information to an employer or for use in marketing activities. . .”

“Covered entities generally will need to provide patients with written notice of their privacy practices and patients’ privacy rights,” said HHS. “Patients would generally be asked to sign or otherwise acknowledge receipt of the privacy notice from direct treatment providers.”

“For the first time in our nation’s history, the federal government has taken the patient out of the driver’s seat and given the medical industry full access to individuals’ personal health information without [their] permission,” said Blevins. “If Enron or WorldCom executives had distorted the truth the way HHS officials have about the federal medical privacy rule, they probably would be charged with false advertising.”

Kaigh warns that prior bad experiences with physicians, under the new rule, will now follow patients “forever, like a piece of toilet paper on your shoe.”

“You will lose the ability to start over fresh with a new doctor who will have no preconceived ideas about you,” she said.

Also, she warned that personal details contained in medical records would be provided to insurance companies by doctors, rather than simply the diagnosis.

“Now the health insurer can get the entire medical record, so it means the difference from a diagnosis of vaginal infection versus the entire medical record, which may include . . . other highly personal and sensitive details only meant to exist between doctor and patient,” she said.

HHS counters by noting that “pharmacies, health plans and other covered entities must first obtain an individual’s specific authorization before sending them marketing materials.”

But the rules also say “doctors and other covered entities” may “communicate freely with patients about treatment options and other health-related information, including disease-management programs.”

“Specifically, improvements to the final rule strengthen the marketing language to make clear that covered entities cannot use business associate agreements to circumvent the rule’s marketing prohibition,” HHS said. “The improvement explicitly prohibits pharmacies or other covered entities from selling personal medical information to a business that wants to market its products or services under a business associate agreement.”

Finally, HHS says patients “generally” will be “able to access their personal medical records and request changes to correct any errors.”

“We took great care to make sure we weren’t creating greater hardships or more health-care bureaucracy for patients as they seek to get prompt and effective care,” says Thompson.

But IHF and others say the government had no role to play in the issue in the first place.

“There is so much apathy out there,” Kaigh said. “People hear they are getting a privacy rule and dumbly believe it without thinking further or exploring it further.”

Blevins says those concerned about losing their medical privacy have three basic options:

  • Implore President Bush to sign an executive order to “immediately overturn” HHS’s proposed rule change;

  • Seek legal assistance to “file a lawsuit calling for a temporary injunction to stop the rule from taking effect”; or
  • Press lawmakers “to pass emergency legislation to stop the release” of medical records “or to utilize the Congressional Review Act to stop the revised federal medical privacy rule from taking effect.”

Under the HHS guidelines, most health-care providers must fully comply with the new rule by April 14, 2003, even though they can disclose some personal health information beginning October 15, IHF said.

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