Patient privacy rules said to hinder studies

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, or HIPAA, has made their research more difficult.

The privacy rule has stymied important research, 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 HIPAA.

A Pittsburgh colleague of Ness’s said enrollment in a study on preeclampsia, a pregnancy complication, dropped from eight women a week to one 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.

Eventually, the researchers reached a compromise with the hospital that increased the recruitment rate to four women per week.

{Researchers continue to press for access to the nation’s health information without consent, even though the public strenuously objects only 1% would allow open access to all their health information without consent (See Westin survey Oct 07). Access to personal health information without permission violates state and common law, medical ethics and research codes of ethics. There are an infinite number of potential users of our very sensitive health information, some good, some bad—–but according to the law and ethics, they need to ASK us first~Dr. Deborah Peel, Patient Privacy Rights}

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