The E debate: Electronic economics

Included in the economic stimulus bill that goes to vote today is funding that will put the medical records of every American into electronic form with no ability of people to opt-out or give their consent.

This morning, the Washington Post described the lobbying debates that took place in the legislature, saying: “At the heart of the debate is how to strike a balance between protecting patient privacy and expanding the health industry’s access to vast and growing databases of information on the health status and medical care of every American.”

In a must-read article, reporter Ellen Nakashima writes:

The effort to speed adoption of health information technology has become the focus of an intense lobbying battle fueled by health-care and drug-industry interests that have spent hundreds of millions of dollars on lobbying and tens of millions more on campaign contributions over the past two years, much of it shifting to the Democrats since they took control of Congress… Insurers and providers say the House's proposed [privacy] protections would hobble efforts to improve the quality and efficiency of health care, but privacy advocates fear that the industry would use the personal data to discriminate against patients in employment and health care as well as to market the information, often through third parties, to generate profits… [Note that word, “quality.”]

[W]here the House bill expands a patient's right to know who has been given access to his health information, the Senate would defer that issue to the Health and Human Services secretary. And an effort in the Senate to require health-care providers to notify patients if their records were unintentionally disclosed has been blocked. "The Senate really did address many of our concerns," said Mary R. Grealy, president of the Healthcare Leadership Council and a spokeswoman for the Confidentiality Coalition, which includes the American Hospital Association, Aetna, Blue Cross and Blue Shield, CVS/Caremark, drug companies and other major industry players. "We want to make sure that privacy provisions don't become a barrier to improving quality and safety, getting information to patients that would be useful."…

Consumer advocates assert that the health industry is already reaping billions by gathering, mining and marketing personal health data and is mainly worried that the privacy provisions would threaten that income stream. "When a patient walks in the door of a hospital or a pharmacy, that hospital or pharmacy sees not just one dollar sign, but two," said Tim Sparapani, senior legislative counsel for the American Civil Liberties Union. "The first dollar is what they earn from treating the patient. The second is the ability to sell the information about the patient." The risk, he said, is that Americans could face difficulties getting health insurance or a job because of the information available in "for sale" medical records. Industry officials say that they fully comply with federal privacy regulations, which they contend are adequate.

Sparapani said that in the 16 years he has worked on the Hill, he has never seen lines of lobbyists for subcommittee hearings — let alone votes — like those on this issue. "There's so much money invested in this and so many corporate entities that are touched by this legislation," he said…

Last night, Sue A. Blevins, RN, president of the Institute for Health Freedom, reported on the current provisions in the economic stimulus bill, warning:

[It] mandates the federal government to plan for electronic health records for every citizen without providing for opt-out or patient consent provisions. 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.

Among the provisions are “enterprise integration.” Few consumers understand that this term “means the electronic linkage of health care providers, health plans, the government, and other interested parties, to enable the electronic exchange and use of health information among all the components in the health care infrastructure in accordance with applicable law,” said Blevins.

Betsy McCaughey, former Lieutenant Governor of New York, opined in Bloomberg yesterday that some health provisions were slipped into the stimulus bill without discussion, HR 1EH, that “are dangerous to your health.” The bill calls for electronic tracking of all medical treatment by a federal system, she says. More worrisomely, she said, while described as ensuring quality and ensuring cost effective care, do consumers and doctors want or need the federal government, through a National Coordinator of Health Information to Technology, to oversee the care doctors provide and “guide” their decision-making? She expressed concerns about the new penalties for hospitals and doctors who are not “meaningful users” of electronic medical records and go beyond protocols in the interests of their patients.

Three women, three concerns.