Photo: Joshua Lutz

PATIENT BEWARE: Cheryl Conrad [right] makes sure she always keeps a copy of husband Tom’s medical records on hand, after he experienced an excruciating delay in getting treated at a local hospital.

Cheryl Conrad seethed with frustration. It was now 8 hours since she had found her husband, Tom, passed out on the floor. Now, in the hospital, he was slipping into a coma. Tom suffers from a rare genetic condition that causes deadly ammonia to build up in his bloodstream.

Cheryl knew just what was wrong and what her husband needed: a massive dose of lactulose, a drug that would reduce the ammonia in Tom’s blood. But the emergency room doctors wouldn’t listen. Only months earlier Tom had been treated there for a similar episode, but nobody could locate the medical records detailing his condition. Instead, the ER staff insisted on contacting the specialist who had been treating Tom’s illness. But the doctor couldn’t be reached.

It took another 2 hours before they got through to Tom’s doctor, who immediately prescribed lactulose. After two days of treatment, Tom was released from intensive care. Galvanized by the experience, Cheryl resolved to keep a paper copy of Tom’s medical records with her at all times [see photo, “Patient Beware,” right].

Though the patients, maladies, and medications vary, this wrenching scenario plays itself out in one form or another every day in countless hospitals around the globe. And it is completely unnecessary. Decades after virtually every significant enterprise in the developed world turned to computers to keep records, computers still remain astonishingly underutilized in medicine, their use suppressed by financial, sociological, and political issues—and the sheer complexity of the automation challenge.

With your medical records in paper form and scattered across the offices of various practitioners, the people treating you when you need those records most—when you’re lying on a gurney in the emergency room, say—may have no idea what to do. Sometimes they do the wrong thing: in the United States alone, an estimated 98 000 deaths occur annually from medical mistakes, and 1.5 million people suffer from adverse drug interactions, incorrect doses, and other medication errors. Many of these deaths and injuries could be avoided if the full medical records of patients were available to their treating physicians.

After a history of false starts, a comprehensive system of electronic health records linking hospitals, general practitioners, specialists, insurance offices, and others could debut in the United States within a decade. Other countries, including Australia, Canada, Denmark, Finland, Germany, and the United Kingdom, have also announced national programs to automate medical records [see table, “Major Players”]. Of these, Finland is likely to be first, with a planned launch by the end of next year. Meanwhile, the UK has been struggling to roll out its digital health record system for more than four years, with little to show for its efforts.

The U.S. endeavor is primarily a private-sector effort that has the support of and some funding from the federal government. It will replace paper-based files with a digital record containing your complete medical history, which your health care provider will be able to access almost instantaneously wherever you seek treatment. The National Health Information Network, as it’s called, will consist not of one centralized system but of a large number of independently managed regional networks, somewhat comparable to the Internet itself.

The potential advantages are enormous: having a cradle-to-grave view of a patient will allow doctors to focus on preventive care, rather than just treating diseases. For employers, insurance companies, and the government, electronic medical records promise to help reduce skyrocketing health care costs, which now come to US $1.9 trillion, or about 16 percent of gross domestic product.

In the long term, such a system would also make it easier to do epidemiological studies, to discover which treatments and medications work and which do not. And it would offer the means to conduct surveillance for pandemics and biological terrorist attacks. For all these reasons, President George W. Bush called for the creation of a nationwide system in his 2004 State of the Union address, setting an ambitious goal of creating electronic health records for most Americans by the year 2014.

To date, though, no country has ever built a fully operational electronic health record system, and the hurdles to doing so are huge. One recent study placed the projected cost for a U.S. system at $276 billion—more than three times what’s been spent on creating a missile defense system over the past 20 years.

The many technical, social, and political issues are also formidable. How will the hundreds of thousands of electronic medical record systems interconnect, and how will they exchange data? How will the privacy and security of hundreds of millions of personal files be maintained? Who will pay? And the biggest question of all: Will it work? Given the far-reaching impact such a system would have on the well-being of every citizen, it will be a profound failure if it does not. Unfortunately, signs already suggest that the U.S. effort will be more complicated, more expensive, and much lengthier than is now officially projected. To understand why, let’s look at recent history and some smaller-scale efforts to digitize medical records—the successes as well as the missteps.

Since the 1960s, universities, hospitals, health care providers, and medical software developers have tried to computerize patient medical records. Most of these efforts ended badly. Information technology was still too immature and the costs too prohibitive to make real progress.

Even today, there are few health care IT systems that work as efficiently and as effectively as intended. One happy exception is at the Mayo Clinic, in Rochester, Minn. Nearly a hundred years ago, the clinic was the birthplace of the paper-based medical record, which at the time revolutionized medicine. Back then, Henry Plummer, a partner at the clinic, recognized that having doctors record information in ledgers, organized by date rather than patient, made it almost impossible to appreciate a patient’s full medical history.

So he developed a “patient dossier” system, in which each doctor would enter all aspects of a patient’s visit in a single, comprehensive file that was forever linked to the patient through a unique registration number. The file was stored in a central repository, and if the patient returned, even years later, the file could be retrieved.

In 1993, the Rochester clinic embarked on fully automating Plummer’s ideas. The effort included a $16 million upgrade to its fiber-optic network and the installation of 16 000 client-server workstations, a central database, and software from GE Healthcare, as well as code written in-house. The clinic’s electronic medical record system became fully operational in 2004, giving Mayo one of the most comprehensive completely paperless medical record systems of any hospital in the United States. According to David Mohr, chair of the clinic’s information management and technology committee, the Rochester site now relies on the system to support its 1.5 million outpatient visits and 60 000 hospital admissions every year [see photos, “Mayo’s Way”].

Each new patient at Mayo is assigned an initial electronic medical record that is created using a unique registration number (just as in Plummer’s day). Once you arrive for treatment, your record is called up from the central database, and during and after the visit, your doctor enters notes and other information into that record. Test results are automatically added to your record, and prescriptions are automatically sent to the clinic’s pharmacy, which checks for drug interactions and allergies. The electronic record is also used to schedule additional visits, generate your bill, and handle other administrative tasks.

Mayo won’t say exactly how much it spent, but I estimate that the Rochester facility’s system cost around $80 million over 10 years. What does the clinic get in return? Cost savings of about $35 million to $40 million annually, primarily from the elimination of administrative overhead such as record-keeping staff, and other benefits including improved quality of care.

It has certainly not been an easy path, however. Just figuring out how to integrate the many types of information that could be included in a patient’s record—doctor’s notes, test results, billing data—not to mention the dozens of sources of information, was an enormous challenge. And it was vital to get everyone—all 17 000 clinicians at Rochester who would have to use the system—to give up their old routines and adopt new ways.

Mohr says the clinic looks forward to the eventual establishment of the National Health Information Network and to the day when its record system will be able to connect to other doctor’s offices and hospitals around the country. But to date it hasn’t tried to do so. In fact, it hasn’t even made the record systems at Mayo’s three facilities—in Rochester; Jacksonville, Fla.; and Scottsdale, Ariz.—interoperable, although doctors can view patient records at another location onscreen. Until standards for digitizing and interconnecting patient records have been set, Mohr says, it makes no sense to invest in software and hardware that may quickly become obsolete.

To be sure, Mayo’s system isn’t the only successful effort to automate health care records. The U.S. Department of Veterans Affairs has run a well-regarded medical record system since the mid-1990s. And perhaps the largest to date is the U.S. Department of Defense’s system, which by the end of this year will support 9.2 million active-duty and retired U.S. military personnel and their dependents around the world [see the sidebar, “A Vision of the Future?” which accompanies this article online].