NIH Delay to Notify Patients on Stolen Data Raises Questions

By Anna Boyd
10:45, March 25th 2008
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NIH Delay to Notify Patients on Stolen Data Raises Questions

The unencrypted medical information of nearly 2,500 participants in a cardiac study conducted by the National Heart, Lung and Blood Institute (NHLBI) were stolen February 23 from the locked trunk of Dr. Andrew E. Arai’s car.

Given the circumstances, the patients involved in the study should have been informed about the situation immediately, but the NHLBI did not send letters notifying the patients until March 20.

“The stunning failure to act….raises troubling questions,” said Rep John D. Dingell (d-Mich.) quoted by the Associated Press.

The House Energy and Commerce Committee, which Dingell chairs, stated an investigation yesterday into the delay and why patients’ records were not encrypted in violation of federal policy.

"Electronic information travels in seconds and minutes, not days and weeks. The NIH should take as much care in protecting its patients' personally identifiable information as it does when handling blood samples," said Sen. Norm Coleman, R-Minn.

The patients were enrolled in a cardiac study, and the password-protected records contain patient names, their diagnosis of heart disease, MRI heart scans and birth dates, but not Social Security numbers, addresses or phone numbers.

The National Institutes of Health “recognizes that such information should not have been stored in an unencrypted form on a laptop computer. 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,” Dr. Elizabeth Nabel, head of NIH’s NHLBI said in a statement according to the AP. She also added that the theft appeared to have been random.

Nabel’s statement did not mention the date of the theft, but it noted that an internal review board at the NHLBI decided March 4 that the participants in the study should be notified of the incident. Therefore, a notification letter was approved last Thursday and then sent via overnight delivery to each of the affected individuals for whom the institute had a current address.

Following the incident, the NHLBI said on Friday it would install encryption software on its laptop and conduct regular security training for its employees.

“We are going to be looking at our policy going forward,” Susan Shurin, deputy director of the NHLBI told CNN Monday. She also added she expects the encryption process to be completed by April 4.

This unfortunate incident comes after the well-publicized theft of a Veterans Affairs laptop computer in May 2006, which contained personal data for 26.5 million veterans and military personnel. The laptop was stolen when an employee took it to his home in violation of agency rules. At the time, the government required encryption of sensitive data stored on laptops, but a review by the Government Accountability Office last month, requested by Coleman, found few federal agencies had taken enough steps to protect personal information.



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