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WIRED 2.01

The Other Revolution in Health Care

Leave Hillary and Bill out of it - whatever they do in Washington, the way you keep yourself healthy and what you do when you are sick are going to change drastically over the next decade in about fifteen different ways.
By Joe Flower
The coming American health care system has everything to do with smart cards and dumb terminals, big bandwidth and microprobes, genetic markers and info-markets. And it doesn't look like anything you've read in the paper. Picture this:

>> A man walks down the street among strangers in a city far from home. Suddenly he clutches his chest and falls to the concrete. A crowd forms, people shout. Someone runs to call 911. The emergency dispatcher says, "Thank you for calling, sir, but we already know about him. An ambulance is on the way." The ambulance arrives within minutes. The emergency medical technicians jump out, and one of them says, "We're here, Mr. Banning. It will be all right." The paramedic, who has never seen Mr. Banning in his life, knows not only his name but his home town, his wife's phone number, his blood type, his previous history of heart disease, his intolerance for penicillin - everything he needs to know to help this patient. The paramedic has, in fact, already notified Banning's doctor and home hospital, and found space for him in a nearby trauma center - all on the way to the scene.

>> Two doctors operate on a woman with stomach cancer: a general surgeon and a cancer specialist. They never cut her open, and they are not in the same room with her. In fact, they are not even in the same city. A surgical technician, standing over her in Denver, has pushed three probes, each about the size of a pencil, through the wall of her abdomen. Two of them are miniature servo-operated mechanical arms armed with tiny holding, cutting, and suction devices. The other holds a tiny fiberoptic array that contains a set of 3-D video lenses and a light source. The general surgeon, in his office in Boulder, sits in front of a high-definition video monitor, wearing 3-D goggles, a joystick in each hand, cutting. In his ears he can hear the voice of the cancer specialist, coaching him from her office in Colorado Springs - where she watches a similar monitor. The patient goes home the same day - she never even checked into the hospital. There is no infection, since her body was never opened. She has no stitches, just a few small Band-aids like those you'd put on your kid's knees.

>> Twelve-year-old Lisa sits down in front of the family's information appliance, turns it on, and types in her personal code. The appliance says, "Hello, Lisa. Do you want voice or screen?" Lisa blushes and says, "Screen." Among the icons that appear, she chooses a body with a heart symbol: the health icon. Next she chooses a question mark. Step by step, through icons and words, questions and answers, Lisa and the appliance have a discussion about puberty and sex. The program uses words and symbols that are appropriate for Lisa, because it already knows that she is a 12-year-old pre-menarche female with an IQ of 110, a high empathy rating, a scar on her arm from a second-degree burn she got when she was 3, and recurring feelings of loss from the death of her grandfather last year.

Her curiosity satisfied for the moment, Lisa exits her program, then calls to her grandmother, bedridden in the next room: "Grams, what's your code again? I want to run your vital thing." Grams tells her. She could do it herself by remote, but the child likes to do it. Lisa runs Grams's program, which processes information from a node placed on the older woman's chest. The process is a bother, but it's better than being in the hospital or a skilled nursing facility - where she knows she would have been in earlier decades.

A small icon of a face begins flashing in the corner of the screen. Lisa clicks on it, and a the screen fills with the face of a nurse Lisa knows over at the community hospital. "Oh, hi, Lisa," the nurse says. "Helping out with Grams, huh? Why don't you just tell her it's nothing to worry about at this point, but the program picked up a couple of trends we'd like to look at further. We'll send someone by the house later in the morning for a few tests. Okay?"

All three of these scenarios are possible within a decade.

Every dimension of health care is changing, driven by powerful systemic feedback from within and without. Over the next decade, we will see health care become less doctor-centered, and more community- and family-centered. Medicine itself will become less of an art and more fact-based.

Yet at the same time it will come to feel more humane. The very discoveries and inventions that will continue to transform medical practice will push it to be less about hardware, less about vast and powerful machines watched over by highly trained acolytes, and more about shared information. Health care will shift its center of gravity away from last-minute, traumatic, intensive, expensive, short-term hospital-centered care, and toward early-as-possible, preventive, long-term, intimate, inexpensive application of information in the community and the family.

Any way you measure it (per capita, absolute dollars, percentage of gross domestic product), we have the most expensive health care system in the history of the world, yet Americans are less satisfied with their health care than citizens of any other developed nation.

We are far from the longest-lived people, with our infant mortality rate 22nd in the world and our maternal mortality rate 26th. In 1990 I gave what I thought was an alarmist speech at a health care conference, predicting that our health care costs would hit US$1 trillion by 1995. I was wrong. It hit that number in 1993 and it's going up at a rate of $100 billion per year.

This situation has to change, and HOTs (health-oriented
telecommunications) are likely to be a major part of that change, helping to bring Americans a far better state of health for much less money.

The fact is, of all the actions that make up this vast humble-jumble we call "health care," the great majority are already transfers of information rather than shots, cuts, and pills. The information may be diagnostic - such as X-rays, vital signs, and the patient's look and feel. It may be therapeutic - prescriptions and orders for tests. It may be consultative - "The pneumonia is one thing, doctor, but I don't like the look of these infiltrates." It may be educational - "Mrs. Jones, for the good of your baby, you have to keep your weight up during pregnancy. This is not the time for a crash diet." Or it may be about billing and insurance matters.

Much of this information, even today, is handled in ways with which Charles Dickens would be completely comfortable: face-to-face or on paper, in prescriptions, filled-out insurance forms, and notes scribbled on medical charts. Much of the information is never recorded at all. And, even if it is recorded, health information experts estimate that 25 percent of this information does not get where it is needed (it's lost, misrouted, or not sent in time) and must be generated again. "If you get referred to a hand surgeon," says Dr. Richard Satava of the Advanced Research Projects Agency (ARPA), "and the X-rays don't show up with you, he will likely need to take another X-ray in order to be able to treat you."

Health-oriented telecommunications can fix such information problems, while making much larger changes possible.

Having the HOTs would do four major things to health care:

  1. Develop new diagnostics and therapeutics (or support traditional doctoring, but with cooler gadgets).
For decades, medical technology has focused on ways to bring more and better information to the doctor. Now it is finding ways to release the doctor, to make more efficient use of the physician's time so that specialists can fan out to where their expertise is needed - including battle zones, rural areas, inner cities, prisons, and mental hospitals.

For two years already, the Medical College of Georgia in Augusta has been operating telemedicine links that allow doctors in rural hospitals to consult with College specialists over live video links. The same links transmit ultrasound and X-ray images, and the sounds from electronic stethoscopes. To add the element of touch, the College is working with engineers from the Georgia Institute of Technology in Atlanta to develop a sophisticated data glove link: the rural doctor in Dodge County Hospital would don a glove and feel a growth that might be a tumor (for instance), and the specialist 130 miles away in Augusta would put a hand in a sensory generator and "feel" the same tumor, with the same texture, the same temperature, the same feeling of pressure.

The biggest hurdle is not technical but bureaucratic: Most insurers will not pay the specialist to consult on a patient who is not in the same room. Not yet.

But what comes next is even stranger: SRI International of Menlo Park, California is already spinning off a company to market a "telepresence" system that will allow online surgery. ARPA is aggressively pursuing online surgery for military and civilian uses: Last June, at Fort Gordon in Georgia, surgeons in a MASH tent operated on animal intestines that were on an operating table in another MASH tent a hundred yards away - and the surgeons were mentored by a specialist at Walter Reed Hospital in Washington, DC who watched the operation on a video screen.

Currently, there are "telementoring" helmets that could be worn by battle medics - or by civilian paramedics. An EMT puts the helmet on, with its imbedded video cameras and microphones, and the doctor back at the hospital can see and hear what the EMT sees and hears, coach the EMT, and help the EMT to do far more complex things in those first critical moments, to try and stabilize the patient, than is possible today.

The ARPA program transports the "teledoc" to the scene of the battle. According to this concept, instead of throwing the wounded soldier on a Humvee and racing for the field hospital, medics would pull the soldier into a miniature trauma center crammed into a lightly armored vehicle. Guided by "telementor" doctors at the hospital, medics would do everything possible to stabilize their charges on the spot - including telepresence surgery - before taking that long, risky journey back from the front lines.

Civilian facilities such as the Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire and SRI International are developing new ways of seeing into the body. Last June, physicians at Brigham and Women's Hospital in Boston fused a video image with an X-ray image to find a tumor that was otherwise invisible to the surgeons.

Combine "telepresence" surgery with virtual reality, and what you get is a surgical simulator. "Now," says Satava, "we have to practice laparoscopic surgery by sticking probes into plastic boxes, picking up grapes and cutting apart chicken wings. In the future, we will be able to practice on the very same instruments that we use for the actual surgery - first you do it on a virtual human, then you do it on a human."

At the same time, expert systems (which emulate the heuristic "rule of thumb" knowledge of experts in a particular field) will expand and support the doctor's skill. One, the Apache system, is already in use in emergency rooms. Another, the 3M HELP Patient Care System, assists doctors as they work through the testing and decision tree for specific sets of symptoms.

All of these are ways of projecting a doctor's skill and multiplying a doctor's usefulness. "We are closing the loop on the digital physician," says Satava. "To repeat an often-used quote, 'We can put a doctor in every

foxhole.' "
The same technology, in the future, will be able to put a doctor at every bedside in every rest home, in every ambulance, and even in your own home.
  1. Immerse traditional medicine in a wider, deeper information net (or get the docs and hospitals wired).
Medicine is still pretty seat-of-the-pants stuff. Most procedures, in most medical settings, have simply never been rigorously examined to determine when the procedures are needed, when they work, and what would make them work better. To do that, you need what has only recently become available: Massive numbers of computers across the country, reporting huge amounts of data from actual cases. Put that information together in databases and find ways to control for different ways of reporting the raw data, and suddenly you have a way to say, "These five hospitals do a lot better than everyone else on ectopic pregnancies (or premature infants, or renal cancer). Let's go see what they are doing differently."

This is called "clinical benchmarking." It is part of the "outcomes movement" that is spreading rapidly in health care. Many hospitals are paying as much as $100,000 a year for this kind of information.

On the patients' end, this is pushing hospitals and doctors toward fully computerized patient record and clinical systems. Most clinical information - vital signs, doctors' observations, nurses' notes on dosages dispensed - is still recorded on paper. And information from a stay in one hospital usually does not link up with information from a stay in a different hospital. And the hospital records don't link up with records from your doctor's office, a clinic you visited, or an outpatient surgical center.

Most people do not really have a coherent "medical record" gathered in one place. That's one reason you have to fill out those huge forms every time you go to a new place. All that information is recorded somewhere, but if you didn't tell the new place that you are allergic to penicillin, or fought in Vietnam, or have had three children, they wouldn't know - and if you're unconscious, you can't tell them.

Arthur D. Little, a well-known consulting firm based in Cambridge, Massachusetts, conducted one study that counted $15 billion the US could save every year just by digitizing everyone's medical records and putting them online, available to anyone with the right pass codes anywhere in the country. Eventually all health records, from insurance information to X-rays and MRI scans will go digital - and eventually you will carry all that information with you on a card.

On the research end, aggregating vast amounts of clinical information online will lead to "n-dimensional queriable research databases." A researcher will be able to ask "what if" questions, and answer them by dipping into databases with hundreds of millions of records, and aggregating all cases that fit. Currently, a researcher might ask a question with a single dimension and a longitudinal progression, such as: "Give me all the patients who took such-and-such drug, and search their records for six years afterward for these possible after-effects." But even the most powerful Sun workstations may take up to two weeks to provide the answer. So the rapid increases in computer speed and power that are expected by the year 2000 - widely estimated at a 104 per-cent increase in computing power and a 107 percent increase in transmission speed - will make a huge difference.

Combine such databases with expert systems (which mimic the
decision-making skills of experts) and you get expert systems that can learn: "The standard dosage is 10 cc, but the experience in the database shows that, with an elevated plate-let count in a male over age 60 with lung complications, 5 cc would be better."

Tie the entire health care system into a vast data structure, and you get a system that can learn how to do it better, faster, cheaper, and easier.

  1. Tie individuals directly into info nets (or get everybody wired, top-down).
The health info-net is already beginning to spread beyond the hospital and the doctor's office. Some of the first tries are relatively simple. For instance, the District of Columbia Coalition, a group of social services providers, is already using a CD-based multi-media Community Services Workstation, developed by the Coalition, Baylor University, Bell Atlantic, and the Office of Disease Prevention and Health Promotion. A health worker sitting down with a client can access everything the client needs to know to get the right kind of help - housing can be paired with medical care, or a chemical dependency program with child care. It's a lot of work being poor. It's hard, not easy, to find help and get to it. One of the principle things that keeps poor people sick and unproductive is simple lack of information - easily gathered, reliable, and understandable information.

In health care, you can cut costs and do a better job at the same time if you help people learn how to improve their health, if you catch disease as early as possible, and if you take care of people at the lowest appropriate level of intensity - keep the colds and the aching backs out of the Emergency Room; keep Intensive Care free of patients with ailments that a little prevention could have caught.

Telecommunications have powerful potential to help. A two-way, digital, switched broadband fiberoptic network that extended into people's homes would allow a lot more of the frail elderly and the chronically ill to live independently, rather than in convalescent homes. Relatively less-trained practitioners could visit them at home, and tap directly into the technological support and expertise of the hospital, hooking up to share vital signs, advice, and a direct look at the patient with the patient's doctor.

Does this work? In a Dartmouth study, doctors cut clinical visits and hospital days by nearly a third just by making a follow-up phone call after someone had visited the clinic the first time. Information and communication are powerful health measures.

Similarly, some Alzheimer's patients and people with certain types of acute schizophrenia could live with more independence and less constant supervision if remote monitoring - much like that now used on some parolees - warned when they had wandered outside their "safe zone."

Many people at serious risk of heart attacks, strokes, or other sudden, lethal shifts in their body systems would welcome such monitors, if these could give them the freedom to live a normal life. A miniaturized body monitor, either worn or implanted, connected to an Iridium-type global telephone system, would do the trick - since the global phone must establish its position as part of its normal operation.

The ARPA project is already making such monitors part of the battlefield HOTs of the future. Satava pictures every soldier carrying four small devices: 1) a global positioning system locator; 2) a friend/foe identification broadcaster ("We are attempting to decrease the 20 percent of casualties we lose to 'friendly fire,'" says Satava.); 3) a vital sign monitor that can sense blood pressure, temperature, and other indicators, and evaluate whether the soldier is all right, injured in some minor way, in shock, or dead; and 4) an automatic communications link that would start broadcasting as soon as the vital signs went beyond normal parameters.

Our information net is developing rapidly, but so far one of its most powerful possibilities - helping us stay alive and healthy - has been lagging far behind.

  1. Tie individuals directly into decision nets (or get everybody wired, top-down, bottom-up, and sideways). To understand why this would make a difference, take a look at a few read-'em-and-weep statistics on our $1 trillion-a-year bankrupting-the-country health care industry, (cited by Michael McDonald, chair of Communications and Computer Applications in Public Health in Berkeley, California):
>> Most people (estimate: 50 to 80 percent) entering the system don't really need a doctor's care.

>> Most health problems (estimate: 70 to 80 percent) you can take care of yourself if you have the right information.

>> Most people (estimate: 60 percent) who have a serious need for a doctor's care enter the system too late, and end up needing care that is far more intense, painful, expensive, and dubious than they would have needed earlier.

>> Almost all first-line health decisions (estimate: 95 percent) are made outside the system, by the individual, with the help of family and friends.

>> Most of a good diagnosis (estimate: 70 percent) depends on what the patient tells the doctor.

Prognosis? We would save money in big buckets if we gave people an easy way to grab good information about their own health at home. McDonald calls this hypothetical system the Personal Health Information System. Picture the kind of TV/telephone/computer information appliance that people widely expect will a big part of the home in the future. Give it a home version of a medical "expert system," fitted with a highly interactive graphic interface. It can ask the kind of questions, and give the kind of answers, that the doctor at the clinic would: "No, if the boy didn't pass out, it's not a concussion. Here's what to watch for . . ." Or: "If it's round and has definite edges, it's not skin cancer. Here's what skin cancer looks like . . ." Based on what you tell it, the system can triage the cases you can take care of yourself from the ones the require a doctor's care ("Better make an appointment") and the ones that require instant attention ("I've dialed 911").

Such a system would know you. You would give it your digitized medical history and answer its questions. If you were a 48-year-old woman with a family history of breast cancer, it would ask you different questions, and give you different advice, than if you were a 28-year-old gay male, or an African American man thinking about getting married.

This system, with all its interactivity, could be put online. According to McDonald: "Part of the reason self care, prevention, and health promotion are so undeveloped is that traditional print and mass media do not allow individuals to access health information when they need it in a form that aids appropriate decision making. Health-oriented telecommunications are likely to revolutionize this part of the health system by making available anything people need or want to know about their health 24 hours a day, seven days a week, in the home, school, workplace, or through public terminals."

The Health Promotion Resource Center at the San Francisco Health Department already has proposed the first stage of this: bringing people basic information about health through interactive terminals in all their facilities, and through the San Francisco Library, which is developing one of the most advanced library-based telecommunications systems in the world.

But in many ways the most revolutionary part of all these ideas is the part that allows sideways, many-to-many discussions, just as today seniors can talk on SeniorNet, homeless people can tap into HandsNET, and MCHnet deals with matters of maternal and child health. One bulletin board system, CHESS, was designed solely to deliver information to people with HIV - but the people with HIV wanted more than access to the latest information. They wanted to talk to each other. And the people who ran CHESS changed the system to meet the demand.

Many of the factors that can actually build healthier communities can be most power-fully affected at the community level, but the energy has to come from the community. Open "forums" provide a matrix on which this kind of community energy can grow.

Developed and used properly, health-oriented telecommunications carry possibilities that go far beyond gee-whiz Buck Rogers romanticism, and more toys for the big boys. They carry the possibility of providing major assistance in revolutionizing health care, making it both cheaper and better, spreading it wider, involving people in making decisions about their own lives, helping America (and eventually the world) build truly healthier communities.

How close is this stuff? That varies enormously. Some ideas are already being put in place, at least in their first-generation versions. These include expert systems, telemedicine links, and using massive databases for outcomes management and research. Others are in the prototype stage, including data glove links, image fusing, telesurgery, and telementoring. Still others, such as the battlefield "armored ambulance," are just ideas. Some of the ideas will require not just technical work, but large-scale funding, a major expansion of the infrastructure, and a long-term political commitment - especially a universally available personal health information system.

SIDEBARS to _The Other Revolution in Health Care_
How Can We Afford This?

There are several options:

>> A lot of it is actually cheaper than what it replaces. For example, if a doctor at a rural hospital uses telemedicine to consult a specialist in the city, the patient (and the insurance company) saves the cost of traveling to the city and checking into a hospital for a separate consultation. He may not have to check in at all, but if he does, it will be at the rural hospital. If one patient per day checks into the rural hospital instead of traveling to the city, the rural hospital will be able to pay for the telemedicine equipment in a couple of years.

>> Some of the elements that may seem expensive (such as a personal health information system in every home) may not be all that expensive in the context of a $1-trillion-per-year problem. The development costs of the system, for instance, are estimated at under $50 million, with another $5 to $10 million per year for keeping the software current. If the goal were universal access, the hardware would be much cheaper than the retail prices of today's commercial counterparts (such as CD-ROM computer systems). A personal health information system might cost, at most, $1000. But a single night in a hospital can easily cost that.

>> Health promotion tends to pay for itself. Studies show that some of today's state-of-the-art health promotion systems provide a 300 to 600 percent return on investment.

>> Because of the savings, many governments and private companies will be interested in providing health-oriented telecommunications for free. The Harvard Community Health Plan, for instance, reduced the number of people visiting its clinics by 5 percent by using a computer-based Triage and Education System (TES). When people come to the clinic, they sit down at the screen and answer a few simple questions. The system then tells them whether they really need to see a doctor.

Some companies will extend health telecom even to people that are not on their contract. In some circumstances blanketing a population with a service is cheaper than figuring out who qualifies for it.

Medical records can be revealing - with notations of electro-shock therapy, HIV status, abortions, plastic surgery, and treatments for depression, impotence, or chemical dependence. In the hands of a tabloid journalist, a political opponent, an insurance company bureaucrat, or an unfriendly employer, the bits and pieces in an ordinary medical record can be damning.

Many people would be horrified at the prospect that their medical record would be digitized and made available online, and privacy advocates are already speaking up. Janlori Goldman, director of the American Civil Liberty Union's Project on Privacy and Technology explains, "While a hospital storage room full of paper files may raise some very serious worries, the threat to privacy is at least limited to those who are physically there and can get into the room. With remote access from around the country and around the world, electronic data interchange might make possible multiple invasions at the same time by people scattered across the globe."

Michael McDonald of Communications and Computer Applications in Public Health (CCAPH) shares such concerns ("The privacy and confidentiality of all health records must be maintained"), even as he dismisses their threat: "That's like saying 'Cars are dangerous.' Of course they are. That's why we have brakes, stoplights, doorlocks, and ignition keys. There's no reason why digitized medical records cannot be kept safe. With proper computer security, your records, with your name attached, would be available only to the people who have access to them now - your doctor, for instance - plus emergency medical technicians who have the proper access code."

McDonald points out that, at present, individual medical records are comparatively easy to steal by ordinary, non-computer means. "What would be a lot easier to steal by computer is population stuff - aggregations from vast numbers of records, such as lists of all HIV-positive people. The answer is simply not to aggregate that type of information with the names attached."

Does Information Make a Difference?

"My first daughter, Mikayla, was born with cystic fibrosis. . . .If we, her parents, and her doctors had had access to information systems that allowed us to quickly and easily explore information on alternative diagnostic and treatment approaches, she might have been saved from lifelong disfiguring scarring.

"I don't mean to sound ungrateful for the medical care she received. Since the first month of life, she has lived a virtually normal life . . . . We were lucky to have been in an urban hospital and to have had an extraordinary resident who was able to catch her distress early. What would have happened if Mikayla had been born in a rural area or had physicians with less up-to-date expertise? She would surely have died - as infants and children do of preventable and treatable illnesses every day because of a lack of appropriate information and decision support."

Joe Flower (bbear@well.sf.ca.us) is author of Prince of the Magic Kingdom: Michael Eisner and the Making of Disney. He wrote "Iridium" for WIRED 1.5.

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