Best Care Anywhere

by Phillip Longman

  Many Vietnam veterans were also insulted by the conditions they found in veterans hospitals. In an autobiography that later became the movie Born on the Fourth of July, Ron Kovic, a two-tour marine who was severely injured in Vietnam, told the story of his experience in a veterans hospital in the Bronx. After describing how the hospital lacked the equipment he needed as an amputee to learn how to walk again, he quoted a young doctor’s matter-of-fact explanation that it was all because of the war. “The government is not giving us money for the things we need.”

  The result of all these tensions, hard feelings, and strained budgets was something approaching complete institutional failure at many veterans hospitals. Part of the problem was that, thanks to improvements in combat medicine and air evacuation, many Vietnam veterans were men who would have died of their wounds in previous wars, and who were now coming home instead with severe injuries and disabilities. But that was hardly an excuse for the conditions many of them faced. Activists among the new generation of vets did everything they could to draw media and public attention to the failings of various veterans hospitals, even if it sometimes meant exaggerating how bad they were.

  One of those activists was Oliver Meadows, a former commander of Disabled American Veterans and staff director of the House Veterans Affairs Committee. He would later proudly recall how he and others “literally staged specials with ABC, NBC, and CBS. We staged the network spectaculars. We had major articles in Reader’s Digest and Life magazine. They were all over the country. We had a specially tailored story written for St. Louis, for example, and the local papers would pick it up. Every VA hospital in the country was covered. We released material to those papers where the hospital was located.”10

  On May 22, 1970, Life published a photo essay about conditions in the Kingsbridge VA hospital in the Bronx that fixed the reputation of veterans hospitals in the post-Vietnam era. The story quoted a quadriplegic lance corporal: “Nobody should have to live in these conditions. We’re all hooked up to urine bags, and without enough attendants to empty them, they spill over the floor. It smells and cakes something awful.… It’s like you’ve been put in jail, or you’ve been punished for something.” Worst of all, the lance corporal continued, were the rats.

  Meadows would later say the Life story “was totally contrived, we helped them all the way.” And indeed, according to Robert Klein, author of the 1981 book Wounded Men, Broken Promises, which is generally an exposé of veterans hospitals, some VA officials, and at least one veteran interviewed for the Life story, claimed that conditions in the various VA hospitals were actually staged by activists to make them look more awful and sensational than they really were. Yet there is also no doubt that many veterans hospitals in this era had sunk into squalor and become little better than medical slums.

  During the Carter years, the VA was headed by Max Cleland, himself a Vietnam veteran and a triple amputee, who would later use his considerable political skills to become a U.S. senator from Georgia and a Democratic Party icon. Yet during his tenure at the VA, many vets came to believe that Cleland had been “fragged” by his own men in Vietnam and resented his attempts to portray himself as one of them. Furious at Cleland’s refusal to acknowledge the link between exposure to Agent Orange and their subsequent cancers and disabilities, a throng of Vietnam vets came close to physically attacking Cleland in his wheelchair during a Senate hearing, taunting, “Did you lose your balls in Vietnam, too?”

  The Iron Triangle

  Probably the only reason the veterans’ health system survived this era was the “iron triangle” of inside politics. Medical schools benefited from their access to, and in many cases, control over, veterans hospitals. The major veterans service organizations, whose leadership often wound up being appointed to high positions in the VA, wanted the system improved and expanded, not eliminated, as did the public employee unions that represented much of the VA workforce. Politicians benefited from the jobs and money the VA brought to their communities, to say nothing of “free” health care the VA provided to indigent and low-income vets who otherwise would have become a local responsibility.

  Even those politicians who believed that “patriotism should be its own reward,” and who regarded the veterans hospitals as “socialized medicine” gone predictably amok, did not feel comfortable voting to close veterans hospitals and found it easy not to. To this day, the various conservative organizations that rank members of Congress count votes for veterans benefits, not as examples of supporting the welfare state, but as votes for national defense.

  And so the checkered course of the VA continued. Fortunately, however, in the deepest recesses of the VA’s moribund bureaucracy, a quiet revolution, initially driven by a few lowly dissidents—some idealistic computer geeks, others idealistic doctors, pharmacists, and other medical personnel—had been set in motion. It was a revolution from below that, once embraced by charismatic new leadership, would lead to the VA’s becoming by the end of the century a world leader in safe, high-quality, and innovative health care. The revolution got ugly at times. At one point, a suspicious fire damaged one of the dissident’s computers. Others were forced to quit or were driven into effective exile. “There were some nasty, nasty games played,” recalls one participant. But in the end, not even the most entrenched plutocrats in the VA’s Washington office, nor their enablers in political office, could put down the insurrection of the Hardhats, as the dissidents came to call themselves.

  THREE

  Revenge of the Hardhats

  Kenneth Dickie still shudders at the memory. One day in 1979, someone snuck into his secret office in the basement of the VA Washington Medical Center. The intruder stacked piles of patient records around Dickie’s DEC minicomputer, doused them with a flammable material, and set them on fire. Smoke filled the room, but fortunately for Dr. Dickie and for the future of American health care, an alarm went off in time, and the computer he was using to build the country’s first practical electronic medical record system was spared. Still, Dr. Dickie recounts today, he had to have the engine of his car rebuilt several times during this period because someone kept putting salt or sand into the gas tank.

  Dickie was one of the Hardhats who developed what is today known as the VA’s VistA software program. VistA, which stands for Veterans Health Information Systems and Technology Architecture, is actually a bundle of nearly 20,000 software programs, most of which were originally written in the 1970s and 1980s by individual doctors and other professionals working secretly in VA facilities around the country. These pioneers had to do their best to hide their work from their superiors because it violated VA policy and was threatening enough to elements within the VA to provoke literal sabotage. But eventually, working without a plan and without a leader, these dissident doctors would wind up creating a wonder of “bottom-up” engineering that many experts say points the way to the future of twenty-first-century health care.

  Today, after a long bureaucratic war that still leaves some of its developers congregating in online support groups, VistA has radically transformed the practice of medicine within the VA and made possible a new model of health care now being emulated around the world. This unique, integrated, publicly owned information system, written by doctors for doctors, has dramatically reduced medical errors at the VA while also vastly improving diagnoses, quality of care, scientific understanding of the human body, and the development of medical protocols based on hard data about what drugs and procedures work best.

  The story of how VistA first came to be is inspirational on many levels. For one, it is a shining example of a time when the “Dilberts” of the world won, and their hidebound bosses were humiliated. Indeed, one of the ironies is that if the VA’s leadership hadn’t been so moribund for so long, the revolution that led to VistA would probably never have happened. A more savvy leadership at the VA probably would have contracted out with some private software developer to provide its information systems. The most likely result would have been computer pro
grams imposed on, instead of created by, doctors and other medical professionals, costing billions of dollars, and written in a buggy proprietary code that ordinary users would have no ability to improve, modify, or integrate.

  This story is familiar in the world of American health care, where what few electronic medical information systems are in place often inspire resistance and fail. That’s what happened, for example, at Cedars-Sinai Medical Center in Los Angeles, which in 2003 turned off its brand-new, computerized physician order entry system. Doctors complained that it took five minutes or more to log into the system and to enter the patient and medication data needed to fill a prescription. At least six other hospitals have shut down computerized drug-dispensing systems in recent years.1

  But precisely because of its ossified traditions, the VA avoided this path. When its management failed to deliver workable information technology, the happy, if unintended, result was that various VA employees took it upon themselves to solve their own individual programming needs. Their individual efforts eventually created a highly effective hospital information system that remains unrivaled by any healthcare software developed by the private sector.

  In 2003, the Bush administration’s top man at the Centers of Medicare and Medicaid Services, Thomas Scully, chastised private software developers for failing to come up with programs that could even begin to match the performance of VistA—let alone its price. VistA is open-source software, meaning that the code itself is free to anyone who cares to download it off the Internet and is accessible to individuals who care to modify it for their own purposes or to improve its performance. (Check out the demo at http://www.ehealth.va.gov/EHEALTH/CPRS_Demo.asp.) The only function VistA can’t do as well as its private-sector counterparts, at least without adding some code, is tracking patient billing. Instead, because of its origins, its focus is on patient care—something the private sector just can’t seem to imitate.

  Cubicle Wars

  VistA’s origins lie in the late 1970s. Like most large institutions of the era, the VA had committed to large, centralized, mainframe computers, such as the IBM 650 Magnetic Drum Data Processing Machine, which it had been using since the 1950s for administrative purposes. These machines were jealously guarded by a tight circle of “high priests,” working out of the VA’s central offices and its main computer center in Hines, Illinois, who regarded anything involving bits and bytes as their exclusive preserve.

  Predictably, as with many other institutions of the time, the software these high priests wrote, or more often procured from private vendors, wasn’t very good, in large part because the people who actually had to use it had little role in its development. Among the many scandals that dogged the VA in the 1970s was the poor performance of its information systems, which at one point in early 1976 completely broke down, causing 647,000 checks to veterans to go unwritten or to arrive late.2

  Nor were the high priests, whose fiefdom was known as the Office of Data Management and Telecommunications (ODM&T), much better at developing software with medical applications. One project ODM&T embarked on, which was supposed to provide doctors with a computer system they could use in laboratories, began in 1968 and wasn’t ready for deployment until 1982. Just completing the VA’s seventeen-step bureaucratic process for approving new software typically took a minimum of three years of paper shuffling on top of whatever time the actual writing of the program required. In 1980, the high priests estimated it would take them at least ten years to develop even a rudimentary patient treatment file that could be stored in the VA’s mainframes.3

  But as it happened, this was the dawn of the era of mini-and personal computers, and a handful of technically minded doctors sprinkled throughout the VA began experimenting with writing their own software to meet their various needs. One was Kenneth Dickie, an internist at the VA Medical Center in Washington DC, who, in an attempt to simplify and improve his own working conditions, began working on a DEC minicomputer in the hospital’s basement to develop a program that would combine lab results, patient history, and other data into a single electronic medical record. “It was unbelievably difficult to track down paper records,” he recalls today, “and unbelievably difficult to track down the data I wanted in those records.” In this era before laptops and wireless modems, Dr. Dickie’s idea was that doctors and nurses could use a single minicomputer on each ward to update, retrieve, and print out complete patient records.4

  Meanwhile, Gordon Moreshead and Wally Fort in Salt Lake City began developing a clinical psychology data system to use in their own facility. Bob Lushene in St. Petersburg, Florida, developed online psychodiagnostic tests; Richard Davis in Lexington, Kentucky, was writing a nutrient analysis program for the treatment of diabetics; and Joe Tatarczuk in Albany, New York, was working to computerize nuclear medicine.5

  Two other key players were the late Joseph (Ted) O’Neill and Martin E. Johnson. Both had been part of early government efforts to explore the potential of information technology in the practice of medicine. In late 1977, they found a new and precarious perch within the VA’s Department of Medicine and Surgery (forerunner of today’s VHA) and began working out of a small office, cryptically labeled “Computer Assisted System Staff,” from which they conspired to build a network of programmers within the VA who came to be known as the Hardhats. In December 1978 in Oklahoma City, O’Neill and Johnson managed to pull off a meeting of freelancing programmers within the VA and persuaded them to write in a common, user-friendly language and to share their code. But everyone had to be careful to work under the radar of those who controlled the VA’s centralized mainframes, even if it meant writing code under difficult conditions.

  For example, many of the freelance programmers were forced to work on “word processors” that lacked tape drives. This was because buying a true personal computer, let alone one of the era’s minicomputers, would have, as one participant relates, “set off alarm bells in the Central Office back in Washington.” Programming on a Wang computer designed for secretaries made sharing information and updating software very difficult. The only ways to do it were with error-prone 300-baud modems or by physically carrying disk packs the size of cake trays from one site to another—a process some characterized as “committing portability.”6 Another key programmer, George Timson, worked out of San Francisco by remote access (“quite unauthorized and quite unpaid-for,” he states) with a Massachusetts firm to develop an elegant and highly effective file-sharing protocol that would become the heart of VistA.7

  Yet, soon enough, the Hardhats ran into trouble from the high priests who manned the VA mainframes. Many Hardhats were fired or demoted; others had their computers confiscated. According to Timson:

  In one case, in Columbia, Bob Wickizer went to lunch, and found, when he got back to his computer room, that his new PDP-11/70 [a minicomputer made by Digital] had been unplugged and was in the process of being crated. By all accounts, the machine never again processed another instruction, anywhere. The Enemy had won—or so it seemed.8

  The “Underground Railroad”

  The turning point finally came in late 1981. By then, on orders from the central office, personal and minicomputers had been ripped out and locked up in closets where doctors couldn’t get to them. The VA’s central office had ordered a radiology system developed by Hardhats in Columbia, Missouri, to be shut down. It had also pulled the plug on a pharmacy system under development in Birmingham, Alabama, and another one in Albany, New York.9 When word leaked out to academic researchers of a promising patient discharge program developed by VA employees in Oklahoma City, the central office refused even to acknowledge its existence in public.

  Stunned by these developments, many doctors and other medical professionals who used Hardhat software and saw its value at last broke out in open rebellion. The controversy, which burst into the medical trade press and caught the attention of Congress, finally caused the VA’s Chief Medical Director, Dr. Donald L. Custis, to take a field trip to the VA’s Washington
medical center on North Capitol Street to see what all the fuss was about.

  This facility is only six miles away from the VA’s central office on Vermont Avenue near the White House, but in those days it was also a world away. This is where Kenneth Dickie, joined by Marty Johnson, labored secretly in the basement, developing electronic medical record software. It was also where another key ally of the Hardhats, the late Paul Schafer, practiced surgery while also serving as executive director of the National Association of VA Physicians. When Custis arrived at the hospital, its director, A.A. Gavazzi, told him straight off that the Hardhats enjoyed “100 percent” support from the hospital’s doctors.

  Custis observed all the homemade software systems in use and also all the programs clandestinely imported from other Hardhat strongholds around the country. These included programs that recorded drug prescriptions, printed pharmacy labels, analyzed psychological tests, maintained tumor registries, and much more. All were running on a DEC PDP 1134 minicomputer that Custis’s office had expressly forbidden use of for such purposes. But despite the obvious insubordination, Custis came away impressed. “It sounds like an ‘underground railway’ has been at work,” he was heard to say, “and doing good work.”10