Government Loses NIH Patient Data

By Eric on March 24, 2008

Last week, government contractors broke into the presidential candidates’ passport records. Before that, Social Security numbers of visitors to federal nuclear weapons labs were stolen. A year and a half ago, the VA lost insurance data on millions of veterans and active service members. You would think that after so many incidents, the government would get better at securing personal information, right?

Wrong. They did it again.

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 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 laptop contained patients’ names, dates of birth, and medical records, so nobody thought the situation warranted an immediate response:

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.

“We didn’t feel that subjects were at immediate risk,” she said. “We felt that we had some time to be thorough in our evaluation. In the end, that may or may not have been appropriate.”

NIH spokesman John T. Burklow said that during the meeting, the board had “long and intense” discussions about what to do, as “there were concerns about not causing patients undue alarm.” The board nonetheless voted unanimously to ask Arai to draft a notification letter, Wichman said.

At its next meeting, on March 18, the board reviewed the letter. Two days later, it gave final approval.

Glad to see that the internal bureaucracy of NIH wasn’t disrupted by this breach of patient privacy. The one good thing that’s coming about as a result of this theft is that NIH is going to start implementing data security measures… that were issued by OMB in 2006 (PDF). Better late than never, I suppose. I wonder how many other federal agencies are noncompliant?

Tags: identity theft, NIH, OMB

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   —Student Life on March 24, 2008 at 2:04 pm