U.S. plans to create massive medical claims database

Advocates for health privacy raise preliminary concerns and call on the Office of Personnel Management to postpone its launch.

By Emily Berry — Posted Nov. 8, 2010

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The Office of Personnel Management, which manages benefits for federal employees, intends to create a giant database of medical claims information about those employees and enrollees in two programs created by the Patient Protection and Affordable Care Act.

In an Oct. 27 letter, the Center for Democracy & Technology, a nonpartisan Washington, D.C.-based group that advocates for health privacy, asked the OPM for more information about its intentions, raised preliminary concerns about the idea and asked the office to delay its launch from Nov. 15.

"The HHS secretary has noted on numerous occasions that privacy and confidentiality ... [are] foundational to the health care system itself," said Harley Geiger, policy counsel for the center.

The letter was co-signed by several organizations, including the American Civil Liberties Union, the American Federation of Government Employees, the AFL-CIO, the Consumers Union and the National Partnership for Women & Families.

"The research it describes in the notice is very open-ended," Geiger said. "Most people believe or should reasonably expect their plans to have their medical claims data and health information, but they do not expect that the government is collecting copies of this information into one large database for purpose of conducting research on it or disclosing it to law enforcement."

In response to the letter, the OPM told the group that it would release a revised notice, ostensibly with more details, as requested.

The agency did not state whether it believed the privacy complaints had merit.

Launch announced

According to its original notice, published Oct. 5 in the Federal Register, the office wants to gather the claims data from the Federal Employee Health Benefit Program; the National Pre-Existing Condition Insurance Program, which launched in August; and the Multi-State Option Plan, which will start in January 2014.

The latter two programs were created under the Patient Protection and Affordable Care Act.

The database would include claims data on millions of people.

The Federal Employee Health Benefit Program has about 8 million enrollees.

The Pre-Existing Condition Insurance Plan, which helps individuals who cannot find coverage in the commercial market because of their health conditions, opened enrollment in July. The program is run by the Dept. of Health and Human Services in 21 states and agencies in 29 states and Washington, D.C.

Anticipated enrollment estimates range from 200,000 to 375,000, according to the Kaiser Family Foundation.

The Multi-State Option Plan is an insurance program scheduled for 2014 that will be available to people in every state and administered by the OPM.

According to the Federal Register notice, the Office of Personnel Management wants to use the proposed database to "actively manage the programs to ensure the best value for both enrollees and taxpayers."

The OPM listed reasons it might share the data, including for law enforcement, court proceedings and congressional hearings.

The OPM could do a lot with the data, including calculating the costs of various health conditions and conducting predictive modeling -- examining claims to find patterns to help predict and prevent serious and costly illnesses, said Jeffrey Gasser, a health data analytics expert and executive vice president of Deerwalk, a data management firm in Lexington, Mass.

"The Holy Grail of predictive modeling is to find people who don't cost a lot of money today, but might cost a lot tomorrow," he said.

Large- and medium-sized employers have been gathering databases the same way for many years, Gasser said.

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