CIA-backed investment stirs health privacy fears

In-Q-Tel's involvement in Initiate Systems opens privacy controversy that the venture firm dismisses


The CIA-backed venture capital firm In-Q-Tel is investing money in a company that sells software used for managing electronic health records. Because U.S. and Canadian health care providers use that software extensively, privacy advocates say they are concerned about the CIA's role.

A spokesman for the software company, Initiate Systems, said the CIA-backed investment might not sit well with privacy advocates who oppose the CIA's involvement. But he said the privacy fears are unjustified.

Donald Tighe, an In-Q-Tel spokesman, said privacy advocates have a misperception about the capabilities of the software, and he added that In-Q-Tel works hard to balance national security interests and individual privacy rights.

Scott Schumacher, Initiate Systems' senior vice president and chief scientist, said the company's master patient index software contains no clinical data. In-Q-Tel invested in the company to help intelligence agencies match data outside the health care field, he said, adding that Initiate Systems' software enhances the privacy of health records.

A spokesman for Canada Health Infoway, a federally funded nonprofit corporation that leads the country's e-health efforts, said the organization was not concerned about the CIA's investment in Initiate Systems because client registries do not hold personal health information on individual patients.

But privacy advocates on both sides of the border say they are concerned that the investment could mean that the CIA will snoop into people's private health records.

Philippa Lawson, executive director of the Canadian Internet Policy and Public Interest Clinic, said In-Q-Tel's investment in Initiate Systems raises a red flag. Lawson has asked federal and provincial privacy ministers to investigate the company's Canadian contracts.

She said she is concerned that the software could be misused. For example, it might be used to identify HIV patients in Canada and then deny them passage across the border.

Twila Brase, president of Citizens' Council on Health Care, a St. Paul, Minn., health care policy organization, said her group opposes master patient indexes because they can serve as national identifiers.

Such an index 'allows disparate pieces of data to be gathered on an individual as part of a countrywide data-sharing system,' she said.

The Department of Veterans Affairs' Veterans Health Administration uses Initiate Systems' Identity Hub software to eliminate duplicate records and improve record matching in its index, which has 12 million entries.

The VHA uses that index to help match patient records in a three-state regional health information organization, which has backing from the Markle Foundation's Connecting for Health. The VA did not return calls for comment by press time.

The software uses a patient identifier that is based on demographic information, such as name, date of birth and address, to locate medical records stored at various medical offices or clinics.

E-health groups, including Connecting for Health, have pitched such indexes as a means to alleviate privacy concerns because they make it possible to find records on the fly rather than relying on a national patient identifier.

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