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U.S. stimulus bill pushes e-health records for all

<b style="color:#900;">commentary</b> A large chunk--about 140 pages of 800--of the Senate bill creates electronic health records for "each person in the United States by 2014," with no clear way to opt out.

Declan McCullagh Former Senior Writer
Declan McCullagh is the chief political correspondent for CNET. You can e-mail him or follow him on Twitter as declanm. Declan previously was a reporter for Time and the Washington bureau chief for Wired and wrote the Taking Liberties section and Other People's Money column for CBS News' Web site.
Declan McCullagh
4 min read

commentary The U.S. Senate on Tuesday approved an $838 billion "stimulus" bill by a 61-37 vote, capping more than a week of political sparring between critics of the measure and President Obama, who claimed during a press conference that an "economic emergency" made it necessary.

What didn't come up during the president's first press conference was how one section of the convoluted legislation--it's approximately 800 pages total--is intended to radically reshape the nation's medical system by having the government establish computerized medical records that would follow each American from birth to death.

Billions will be handed to companies creating these databases. Billions will be handed to universities to incorporate patient databases "into the initial and ongoing training of health professionals." There's a mention of future "smart card functionality."

Yet nowhere in this 140-page portion of the legislation does the government anticipate that some Americans may not want their medical histories electronically stored, shared, and searchable. Although a single paragraph promises that data-sharing will "be voluntary," there's no obvious way to opt out.

"Without those protections, Americans' electronic health records could be shared--without their consent--with over 600,000 covered entities through the forthcoming nationally linked electronic health records network," said Sue Blevins, president of the Institute for Health Freedom, a nonprofit group that advocates health care privacy.

The Democratic politicians pushing this bill have far-reaching ambitions. The legislation (PDF) (on page 244, for the curious) hands to a still-to-be-named health care bureaucrat the "goal of utilization of an electronic health record for each person in the United States by 2014." Selecting official standards will be left to the Department of Health and Human Services (page 265).

The databases will, "at a minimum," include information on every American's race and ethnicity. They will be used for "biosurveillance and public health" and "medical and clinical research," both of which raise privacy questions. They will become part of a "nationwide system for the electronic use and exchange of health information."

Plus, the federal government will use its vast purchasing power--think Medicare and Medicaid--to compel adoption of e-records that meet government "standards and implementation specifications."

"Congress must close a number of the unnecessary and damaging loopholes designed by industry that have been added to the economic recovery package," said Ashley Katz, director of Patient Privacy Rights. PPR is especially concerned with a section of the Senate bill, which did not exist in the House of Representatives version, that may permit marketing literature and direct mail to be sent based on the contents of a patient's e-records.

Marc Rotenberg, director of the Electronic Privacy Information Center in Washington, D.C. says he believes PPR "is right to be concerned that the Senate bill would allow for the commercialization of confidential medical information. It changes the incentive structure in data collection."

Short-circuiting a gradual move toward e-health records
Many physicians are moving toward electronic health records for reasons of their own, including market pressure, convenience, and efficiency. This happens as old systems are being replaced or upgraded, questions about security find better answers, and doctors and their staff become more familiar with the technology.

The Centers for Disease Control and Prevention found, in response to a mail survey last year that 38.4 percent of physicians reported using full or partial e-records system, not counting billing. This is up from 25 percent in 2005.

In the absence of the so-called stimulus bill, doctors and companies have been gradually moving in that direction, individually weighing the costs against the benefits and choosing the technology that best suits their needs.

This is the gradual process that the Democrats who wrote the legislation, and sent it the floor without the benefit of a single hearing, hope to short-circuit. The bill punishes physicians who are not "meaningful users" of a government-certified e-record database, and specifies certain procedures and information exchanges that will "satisfy" the requirement.

Starting in 2015, government reimbursements to physicians who are not participating in the federal e-record effort will begin to decline.

HHS would be required by law to improve the adoption of e-records "over time by requiring more stringent measures of meaningful use."

Betsy McCaughey, the former lieutenant governor of New York and an adjunct fellow at the free-market Hudson Institute, wrote an opinion article this week that argues the e-records idea comes from Tom Daschle, who withdrew as a HHS nominee amid questions about his lobbying and nonpayment of income taxes.

"What penalties will deter your doctor from going beyond the electronically delivered protocols when your condition is atypical or you need an experimental treatment?" McCaughey wrote. "The vagueness is intentional. In his book, Daschle proposed an appointed body with vast powers to make the 'tough' decisions elected politicians won't make."

Twila Brase, a registered nurse and head of the Citizens' Council on Health Care, a grassroots group in St. Paul, Minn., says the "stimulus" bill should include explicit informed consent before sensitive and confidential patient records are injected into a national database.

"To protect the human, patient, and privacy rights of all Americans, the final stimulus bill must include an informed consent requirement," said Brase, who also warns that allowing federal officials to define "effective" care will lead to rationing of it.

There are two pro-privacy components of the "stimulus" package. The first says that e-records holders "shall have a right to obtain" a copy of their data in an electronic format. The second includes a notification requirement in the case of a data breach if the information is not encrypted--although, according to the definitions used, no notification is necessary is the unintentional disclosure was made "in good faith."

Also, a "policy committee" will be created inside HHS to devise "the implementation of a nationwide health information technology infrastructure." But of the 18 members, only one is required to have any knowledge of privacy and security matters.

Because the House version is different than the Senate's, negotiators from each chamber will meet to draft a final version, a process that has already begun.