Dying for Data

The United States’ National Health Information Network , or NHIN, will differ from the UK’s project in a number of ways. Rather than having a single, closed network with a central database overseen by one government agency, the U.S. system will be decentralized, operating more like a peer-to-peer network, with records distributed across the system. Think Napster on steroids. Just as the ingenious program created by Shawn Fanning in the late 1990s allowed music lovers the world over to quickly locate and download songs regardless of whose computer they might be on, so the NHIN will allow a doctor to quickly call up a patient’s digital records from whatever databases they may reside in—at a hospital, at the family doctor’s or dentist’s office, at a clinical lab, wherever.

But Napster users weren’t revealing much about themselves by allowing others to view their playlists. A universally accessible medical record system, on the other hand, raises all kinds of privacy concerns: Should your podiatrist be able to see your psychiatric file? If not, how do you ensure that various health care workers see only what they need to see? Who’s responsible for fixing mistakes in your record, and how can you even tell if a mistake has been made?

During a typical hospital stay, for example, it is estimated that an average of 150 people—including nurses, X-ray technicians, and billing clerks—have access to a patient’s medical records. In one incident, a star baseball player who’d been treated at a New York City hospital for a shoulder injury reportedly had his test results looked at by nearly 7000 people. The NHIN, with perhaps billions of records potentially accessible, will undoubtedly prove an irresistible target for hackers interested in probing the secret lives of celebrities and politicians.

Another concern is the myriad data brokers and pharmaceutical and insurance companies, who see the NHIN as the mother lode of consumer data. With access to this information, drug makers could figure out which drugs are being prescribed for which patients or even which patients have which diseases, and then target their advertising accordingly.

David Brailer, the government official who until May had been overseeing the U.S. electronic effort, has insisted that patients themselves will control access to their medical information. But will they? As it is, an ever growing number of employers and insurers are compelling individuals to disclose their personal health information, thus undermining any practical attempt at confidentiality. [For a more detailed discussion of privacy, see the sidebar, ”The Privacy Challenges,” which accompanies this article online.]

And how much will all this cost? The Center for Information Technology Leadership, in Wellesley, Mass., puts the 10-year cost of the NHIN at $276 billion, while the Rand Corp., in Santa Monica, Calif., estimates $115 billion. But both studies also claim that the system will generate huge savings: the CITL study estimates an annual return of at least $78 billion, while the Rand study puts the potential savings at $81 billion a year, through lower administrative costs, the avoidance of needless tests, and so on.

There’s good reason to believe that both studies lowball the costs and overvalue the savings. As the studies’ authors themselves point out, their findings are based on assumptions and extrapolations that are themselves based on expert opinion but little hard data. It’s the proverbial ”turtles all the way down” problem, with overly optimistic assumptions stacked on top of yet more optimistic assumptions.

Steffie Woolhandler, an associate professor at Harvard Medical School, is skeptical of the models used to estimate the costs and benefits of the NHIN. Given that no one has ever built a national health record system before, she says, the studies’ findings should be seen at best as informed guesses.

Indeed, we’re likely to see large numbers of failures as the NHIN is rolled out at hospitals, doctors’ offices, nursing homes, and elsewhere. If historical trends hold, those failures could amount to tens of billions of dollars wasted. A sufficient number of failures could lead health care providers to reject the whole idea of the NHIN, as is a possibility for the UK’s system.

Given the enormous tasks that remain, it is difficult to see how the NHIN will be completed by 2014, just eight years from now. The 2007 federal budget allocates only $169 million for health IT—out of a total expenditure on health care of $675 billion. In other words, most of the financial burden for developing the national network rests on the private sector. But Baron, the Philadelphia physician, predicts that unless there is financial support for small practices to adopt automated medical records, the NHIN will remain a distant wish. In fact, under current conditions, one study projected that it will be 2024 at the earliest before small practices adopt electronic health records in sufficient numbers for a national network to be effective.

If the NHIN effort fails, the consequences will be far-reaching. In­formation technology does have huge potential for improving the quality of care, as the experiences at the Mayo Clinic, Baron’s office, and other places have shown. And so, before we go much farther down this path, we need a realistic assessment of the true costs and benefits, and of the significant social, technological, and financial risks facing us. Will such a reckoning occur? At the moment, Harvard’s Woolhandler says, ”There is no political force behind any call for realism today, except the American people.”