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Privacy groups urge politicians to ensure safeguards for health IT

Privacy and civil liberties advocates are urging lawmakers working on the forthcoming economic stimulus package to ensure that any language to spur adoption of electronic medical records includes meaningful security safeguards.

The American Civil Liberties Union, Consumer Action, the National Association of Social Workers, Patient Privacy Rights and others sent letters to House Speaker Nancy Pelosi, Senate Majority Leader Harry Reid and President-elect Barack Obama Wednesday asking them to ensure individuals can control the use of their medical records and protect them from what they believe is a thriving industry of firms that share and sell medical data.

"We all want to innovate and improve health care, but without privacy our system will crash as any system with a persistent and chronic virus will," Patient Privacy Rights executive director Ashley Katz said at a Capitol Hill briefing.

Katz said her group has been pleased with progress that the House Energy and Commerce, and Ways and Means committees made last year.

Energy and Commerce passed a bill sponsored by its then-chairman, Rep. John Dingell, D-Mich., and Ways and Means Health Subcommittee Chairman Fortney (Pete) Stark, D-Calif., introduced a bill as well. Both included privacy and security provisions. She said less progress has been made in the Senate.

Senate Health, Education, Labor and Pensions Chairman Edward Kennedy and ranking member Michael Enzi offered a bill in the 110th Congress and they worked with Judiciary Chairman Patrick Leahy to beef up its privacy provisions.

But Senate Small Business ranking member Olympia Snowe does not believe the measure went far enough. Snowe, Rep. Edward Markey, D-Mass., and Rep. Lloyd Doggett, D-Texas, offered letters of support for the privacy group's call to action. "Without robust safeguards, the health IT systems we are planning for today could turn the dream of integrated, seamless electronic health networks into a nightmare for consumers," Markey said in a statement.

At the briefing, ACLU lobbyist Tim Sparapani warned that as more e-health tools are used, the "shadowy" multibillion dollar business of trading patient information will grow stronger.

But America's Health Insurance Plans has concerns that privacy provisions that might wind up in the stimulus bill could harm the healthcare system. While the group supports efforts to move toward an interoperable e-health regime, "it is vital that policymakers consider how this legislation will impact claims payment, quality control, and programs to coordinate care and manage treatment for patients with chronic conditions," a spokesman for the trade group said. AHIP sent a letter to Kennedy recently detailing its concerns.

Meanwhile, Verizon CEO Ivan Seidenberg on Wednesday said that modernizing the U.S. healthcare infrastructure would drive down costs and improve efficiency and health outcomes while creating jobs.

Health IT stimulus discussions playing out on Capitol Hill are focused on giving authority to HHS to establish standards and providing funds for Medicare beneficiaries as well as those outside the system to begin implementing health IT.

Proposals circulating are in the $20 billion range, which from an industry standpoint is a good start, Seidenberg said. Unlike in some areas of the stimulus, those crafting the proposal are not as focused on tax breaks or subsidies to spur health IT adoption, he said. The Congressional Internet Caucus' annual State of the Net conference touched on the topic Wednesday with a panel titled "Five Ways Congress Can Save Healthcare Through Technology."

The Center for Democracy and Technology's Deven McGraw said lawmakers must approach health IT "from a comprehensive policy framework as opposed to a one-size-fits-all solution."

She said rules for health providers that exchange medical records need to be different than rules for personal products that are designed for consumer use like Microsoft's HealthVault, a tool that allows patients and providers to store health information.

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