Bills to Share Health Data Introduced, Stalled

While members of Congress in June introduced legislation that would create nonprofit institutions charged with managing patients electronic health records for a lifetime, a separate House bill to make health information systems interoperable has stalled.

Both bills encourage technology that would allow physicians at one institution to see what treatments a patient has received from another, an ability expected to improve follow-up care and reduce duplicate procedures.

Sen. Sam Brownback, R-Kan., and Reps. Dennis Moore, D-Kan., and Paul Ryan, R-Wis., introduced legislation calling for a new kind of organization known as an IHRB (independent health record bank) to operate lifetime health records. For-profit institutions such as health IT vendors and banks would likely sell services to the IHRBs.

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Supporters of the bill describe it as the backbone of a national health information network that could yield potential savings. Under the legislation, individual patients would be able to view and edit their own records, and could sell blinded data for consumer studies.

Already, dozens of RHIOs (regional health information organizations) are gearing up to help clinicians at different institutions as well as insurance providers share information. Yet according to one recent survey, 70 percent of RHIOs are not yet exchanging live information between multiple partners.

However, many RHIOs do not store data themselves but provide a way for providers in one institution to access information at another institution.

The second bill (HR 4157), sponsored by Reps. Nancy Johnson, R-Conn., and Nathan Deal, R-Ga., was supposed to come to the floor on or shortly after June 19, but legislators decided to delay the vote after the Congressional Budget Office determined it would increase spending and decrease revenues.

The bill would codify the Office of the National Coordinator for Health Information Technology, and establish mechanisms to recommend and govern standards for data storage and operability. The spending increases would come because requirements to update disease classification codes faster than otherwise required could raise health care premiums. Another concern was that provisions to loosen anti-kickback policies in order to allow hospitals and other entities to donate technology would increase levels of Medicaid and Medicare services.

Though the bill is not directly aimed at regional health information organizations, interoperability and common standards would allow organizations to collect and distribute information more easily.

The bill has broad bipartisan support. A similar bill, co-sponsored by Sen. Hilary Clinton, D-N.Y., and Senate Majority Leader Bill Frist, R-Tenn., passed the Senate in January.

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