A federal patient privacy rule has had a chilling effect on medical research, making it tougher to recruit patients and use their health records, the first national survey on the topic suggests.Two-thirds of the more than 1,500 epidemiologists surveyed said the Health Insurance Portability and Accountability Act, also called HIPAA, has made their research more difficult.
Important research has been stymied by the privacy rule, said Dr. Roberta Ness of the University of Pittsburgh, who led the survey. One in nine researchers said they had abandoned a research idea because they thought it wouldn’t be approved because of the HIPAA privacy rule.
A Pittsburgh colleague of Ness’ said enrollment in a study on preeclampsia, a complication of pregnancy, dropped from eight women a week to one per week because of HIPAA. Researcher Nina Markovic said they weren’t allowed to look at patient information and recruit women only for the preeclampsia study. Instead, clinic staff had to ask patients to join a registry that gave all researchers access to their medical charts.
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