Patients' Data on Stolen Laptop

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By Ellen Nakashima and Rick Weiss
Washington Post Staff Writers
Monday, March 24, 2008

A government laptop computer containing sensitive medical information on 2,500 patients enrolled in a National Institutes of Health study was stolen in February, potentially exposing seven years' worth of clinical trial data, including names, medical diagnoses and details of the patients' heart scans. The information was not encrypted, in violation of the government's data-security policy.

NIH officials made no public comment about the theft and did not send letters notifying the affected patients of the breach until last Thursday -- almost a month later. They said they hesitated because of concerns that they would provoke undue alarm.

The handling of the incident is reminiscent of a 2006 theft from the home of a Department of Veterans Affairs employee of a laptop with personal information about veterans and active-duty service members. In that case, VA officials waited 19 days before announcing the theft.

"The shocking part here is we now have personally identifiable information -- name and age -- linked to clinical data," said Leslie Harris, executive director of the Center for Democracy & Technology. "If somebody does not want to share the fact that they're in a clinical trial or the fact they've got a heart disease, this is very, very serious. The risk of identity theft and of revealing highly personal information about your health are closely linked here."

The incident is the latest in a number of failures by government employees to properly secure personal information. This month, the Government Accountability Office found that at least 19 of 24 agencies reviewed had experienced at least one breach that could expose people's personal information to identity theft.

Elizabeth G. Nabel, director of the National Heart, Lung and Blood Institute (NHLBI), said in a statement issued late Friday that "when volunteers enroll in a clinical study, they place great trust in the researchers and study staff, expecting them to act both responsibly and ethically." She said that "we deeply regret that this incident may cause those who have participated in one of our studies to feel that we have violated that trust."

NIH officials said the laptop was taken Feb. 23 from the locked trunk of a car driven by an NHLBI laboratory chief named Andrew Arai, who had taken his daughter to a swim meet in Montgomery County. They called it a random theft. Arai oversees the institute's research program on cardiac magnetic resonance imaging and signed the letters to those whose data was exposed.

In the letter, Arai told the patients that "some personally identifiable information" was on the stolen computer, including names, birth dates, hospital medical record numbers and MRI information reports, such as measurements and diagnoses. Social Security numbers, phone numbers, addresses and financial information were not on the laptop, officials said.

Arai's letter said that the NIH Center for Information Technology determined that the theft posed "a low likelihood of identity fraud" or financial harm. "It is, however, an unfortunate breach of our commitment to protect the confidentiality of your research records," he wrote.

An initial effort by information technology personnel failed to encrypt the laptop before it was stolen and Arai neglected to follow up, according to NHLBI spokeswoman Susan Dambrauskas.

According to a chronology provided by Dambrauskas, three offices that focus on information security within NIH and the Department of Health and Human Services were contacted within three days of the theft.

But officials did not report it to the NHLBI Institutional Review Board -- whose job is to protect the well-being of patients in research -- until Feb. 29, six days after the theft. That put the matter on the board's agenda for its next meeting, on March 4, according to the board's chairman, Alison Wichman.


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