Clinton fears Orwellian IT future

President Clinton announced a proposed rule to safeguard electronic medical records from abuse by employers, insurers, banks and law enforcement during a White House press conference Friday afternoon. Seizing upon the worst fears of jaded health-care consumers in a wired world, the President boldly declared that "Americans should never have to worry about the nightmare scenarios depicted in George Orwell's 1984." At present, there are no federal laws limiting access to medical data by interested third parties; and under some state laws, a doctor may act as a patient's legal "agent" and disclose their medical information at his or her discretion, without so much as notifying the patient. Popular pressure for improvements in electronic records security has grown dramatically in the past decade, as more and more Americans have joined managed care plans, often to find themselves vastly underwhelmed by the quality of health care under these new, corporate operational models. The President reported that over two-thirds of American adults doubt that their medical records are secure. "They have good reason," he observed. "Today, with the click of a mouse, personal health information can easily and now legally be passed around without patients' consent to people who aren't doctors for reasons that have nothing to do with health care." The President cited "a recent survey" which he said "showed that more than a third of all Fortune 500 companies check medical records before they hire or promote." The proposed rule would require employers to obtain permission before undertaking such data fishing expeditions, but that may have little real-world effect. Employers can simply bury blanket authorisation in some obscure clause of the employment contract, obfuscate it with a liberal sprinkling of legalese, and so quietly present the candidate with a "take it or leave it" ultimatum. Other provisions in the regulation would guarantee patients the right to examine their medical records and require correction of any false information they discover; enable patients to sue anyone entrusted with such data for releasing it without authorisation; and require law enforcement officers to seek a warrant from a judge before gaining access to a suspect's medical data. The proposed rule is a start, but it is far from comprehensive. Numerous American companies already require random drugs testing as a condition of employment. Most employees assume that they will be tested only for illegal, recreational drugs; but a call from The Register to three medical device companies that manufacture reagent packets for employee drugs testing, and which asked not to be named in this article, reveals that many of the reagent packets marketed to business and industry for employee monitoring also test for numerous prescription drugs, including antidepressants. One can only wonder how many promotions have been aborted by evidence that an employee is taking medication for a life-threatening illness, or some minor psychological imperfection. It all smacks of some loathsome career-path eugenics programme, and implies that the President's 'Orwellian nightmare' has already been realized. The proposal is further limited because it covers only data stored or transferred electronically. A bill sponsored by Senators Edward Kennedy (Democrat, Massachusetts) and Nancy Kassebaum (Republican, Kansas) gave the Administration authority to draft regulations governing electronic medical records if Congress failed to enact legislation within three years, but did not extend that power to paper records. The President did not fail to take a few election pre-season jabs at Congress. "I am taking this action today... because a few years ago Congress explicitly gave me the authority to step in if they were unable to deal with this issue." "After three full years there wasn't a bill passed in either chamber," the President hastened to note. "Only through legislation can we cover all paper records and all employers," he added. In spite of the proposed rule's several flaws and limitations, the Administration did its best to roll it out with good cheer and sunny optimism. In a nice bit of cabaret, Health and Human Services Secretary Donna Shalala held up her Blockbuster video club card and her health insurance card to illustrate the madness permitted under current law. "When I use my Blockbuster card," she said, "federal law protects my privacy. But when I use my health card, I have no protection at all." Georgetown University medical privacy specialist Janlori Goldman added that over one sixth of American patients are so appalled by the lax state of records security that they engage in "protective behaviour", which may include lying to doctors and insurance companies, and can as a result endanger their health. Goldman reported that in a previous draft, HHS Secretary Shalala had sought to give "unfettered access" to law enforcement bodies seeking medical information on suspects and witnesses. "That provision was roundly decried," Goldman said. "No one, not Democrats, Republicans, no one, thought that was a good idea. Only the Department of Justice liked that one," she observed with a sly smile. A proposed rule is published in the US Federal Register -- which is free and available to all citizens -- and is then subject to a 60-day public comment period, after which it is revised as needed and submitted by the Secretary as an amendment to the Code of Federal Regulation (CFR). The apathy of most Americans towards their governmental processes normally ensures that such 'public commentary' comes exclusively from well-funded and well-staffed industry front groups and corporate lobbying organizations. No doubt the data-addicted insurance and managed health care industries will seize upon this opportunity to be heard with great eagerness. It would be no great risk to predict now that industry will advise against enabling citizens to sue companies for lax records security; the cost, they will warn, can only result in higher prices and a consequent reduction in the number of Americans who can afford health insurance. Nice to know they have our best interests at heart, as always. ®