Medical Privacy at Risk as Government Seeks Invasive Patient Information

April 7, 1999 12:00 am

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Wednesday, April 7, 1999

WASHINGTON — Once again demonstrating that Congress must adopt privacy protections for medical records, the federal Health Care Financing Administration will soon force home health care providers to gather and report personally invasive information on their patients.

The new data collection regime is scheduled to begin on April 26 when the health care providers — including nurses and therapists — will be required to fill out a 19-page questionnaire that asks for more than 100 details about a patient’s financial and living situation and mental health. Other questions probe whether a patient is incontinent, smokes, is obese or alcohol dependent.

All of the records — gathered under a program called OASIS or Outcome and Assessment Information Set — will be stored in enormous government databases. Each record will include personally identifiable information, including names and social security numbers. Patients must “consent” as a condition of receiving care.

Although the health care financing agency recently agreed to scale back the breadth of its data collection, the ACLU said that the OASIS program continues to represent the untoward growth of the federal government’s appetite for personal information.

“Congress must quickly adopt legislation to ensure that our medical records are protected from an overreaching government and industry,” said Barry Steinhardt, Associate Director of the national ACLU. “Without legislative protections, there will be no way for the average American to insure that her medical records remain confidential.”

The ACLU recently endorsed medical records privacy legislation introduced in the House and Senate by Senators Patrick Leahy, D-VT, and Edward Kennedy, D-MA, and Representative Edward Markey, D-MA.

By requiring informed consent, limiting law enforcement access and allowing for stronger state laws, the ACLU said the Leahy-Kennedy-Markey legislation offers the best approach to protecting medical records privacy in this era of electronic records and national insurance companies.

“If Leahy-Kennedy is adopted,” said Ronald Weich, an ACLU Legislative Counsel, “this type of heavy-handed government intrusion into our medical privacy will be stopped dead in its tracks.”

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