AEGiS-UPI: Health privacy law hinders research United Press InternationalImportant note: Information in this article was accurate in 2004. The state of the art may have changed since the publication date.
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Health privacy law hinders research

United Press International - September 14, 2004


BOSTON -- U.S. law on the privacy of healthcare information hinders researchers and slows the progress of clinical trials, analysts said.

The Privacy Rule is part of the Health Insurance Portability and Accountability Act of 1996 and covers how, when and with whom a patient's medical information can be shared. Violators risk potential jail time.

Dr. Roberta Ness, of the University of Pittsburgh's Graduate School of Public Health, told the American College of Epidemiology conference in Boston this week unless the law is significantly changed many clinical studies could be moved off-shore and out of reach of U.S. regulations.

"HIPAA has had substantial negative effects on our ability to recruit individuals to participate in research," Ness said.

Before HIPAA, patients who might benefit from a clinical trial of a new treatment were found by a medical records review and then contacted to see if they wanted to participate. Now, patient contacts must be initiated by their physicians -- who often are too busy to make it a priority.


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