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More patient privacy means less medical research

Complying with new federal medical privacy regulations are causing �a drastic drop� in the percent of heart attack survivors and chest pain patients who take part in follow-up surveys after they leave the hospital., according to University of Michigan Cardiovascular Center researchers. Meanwhile, these same privacy regulations cost researchers thousands more dollars, they state.

Reportedly, patients joining the surveys have dropped 96 percent to 34 percent, they state. First year research now costs $8,704.50 more while year after that now costs $4,558.50 more.

Under a two-year-old federal medical privacy law known as HIPPA, patients must now sign a long, complicated consent form before researches could study their case. Previously, researchers only needed to telephone patients to get consent.

According to the researchers, only about one-third of 855 patients returned the new form. Previously, 96.4 percent of 1,221 patients agreed.

According to a press release describing this drop, �The lower participation rate with the HIPAA-compliant written consent means that the data collected would be less meaningful. The study also finds that patients who returned written consents were far more likely to be older, married and white than those who refused to consent or didn't answer�


Comment: The tradeoff between privacy, on the one hand, and open, effective availability of data, on the other hand, is a well-known dilemma amongst computer security experts. Basically, the more secure you make data, the more difficult it becomes to do anything useful with it. This trade-off appears to be working here.

Here is a link to the actual article

Link to HHS's HIPPA website.

Posted by: Duncan Kinder on May 31, 05 | 2:55 pm

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