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What your doctor doesn't know could kill you
Boston Globe Magazine ^ | July 14, 2002 | Chris Gaither

Posted on 07/14/2002 11:16:38 AM PDT by Cincinatus' Wife

Edited on 04/13/2004 2:07:58 AM PDT by Jim Robinson. [history]

D r. Harold D. Cross, an occupational health and emergency physician in Beaufort, South Carolina, recalls few cases during his five decades of practicing medicine as bizarre as that of the flailing plumber. The 47-year-old man had begun to act strangely at work, waving his arms involuntarily for a minute at a time and acting dazed. A few times each night for three years, the plumber would begin thrashing about in bed, then get up and pace for a few moments before climbing back under the covers. The man had been seen by a neurologist, who diagnosed him with a sleep disorder and prescribed a drug. It didn't help, so he stopped taking it and turned to Cross.

(Excerpt) Read more at ...

TOPICS: Business/Economy; Culture/Society; Front Page News; News/Current Events
KEYWORDS: deathcultivation; healthcare; technology; un
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Continued: Weed shared his views on medical training and diagnosis during my visit to his offices, a former wool mill on the Winooski River in Burlington. Darkness crept early into his office that day, but he refused to turn on the overhead lights. To me, sitting in darkness on the other side of his desk, Weed looked like a hysterical shadow puppet, waving his arms about as he complained for three hours about what the medical profession fails to understand about computers and doctoring. He finished with a flourish.

"Medical students will say, `You mean the human mind can't process as well as a computer?' Well, the human mind can make every calculation that you need to get a rocket from here to the moon. That's true. But you can't do it when the rocket's in motion. You can't do it at that speed. When a quantitative difference becomes big enough, it has qualitative implications. Do you see what I mean?"

I was beginning to. But I was paying the price. When I arrived at the PKC Corp. offices that day, Pierce, its CEO, had shaken my hand and said: "It's your first time meeting with Larry, huh? I have aspirin to help with the headache you're going to get." Sure enough, as I sat there talking with Weed, my head began to throb. By the end of the evening, spots danced in front of my eyes and my temples felt about to burst. Maybe it was the lack of light, maybe it was Weed's ideas. Then again, maybe I was just hurrying to a diagnosis on limited evidence.

Not surprisingly, Weed's views have been received coldly by physicians in most medical schools and teaching hospitals, the places in which new technologies make their way into popular use. Dr. Jerome P. Kassirer, a distinguished professor of medicine at Tufts University and the editor of The New England Journal of Medicine from 1991 to 1999, worked on computer-aided diagnosis for two decades before giving up in the 1980s. He has not seen Weed's software but knows doctors who have, and he still believes that no computer software can properly diagnose a patient. Such programs sometimes remind doctors to check for things they might otherwise have forgotten, he says, but they can also prompt doctors to chase unlikely diagnoses and perform unnecessary tests. "I'm skeptical that you could do as well as a doctor with these programs," he says.

Weed's critics and supporters alike admit that his unrelenting attack on the medical establishment's values and his willingness to call out offending physicians by name (as in the Addison's case) have driven away many potential supporters of his software. "It has to be said that, in the medical community, he was his own worst enemy," says Donald Lindberg, the national medical library director.

Other doctors wither at Weed's views without even meeting him. Shortly after Weed's "Black Box" paper was published, a radiation oncologist in Johannesburg named Leopold Reinecke posted a response on the British Medical Journal's Web site, calling it "a black day indeed" if Weed's words were to be accepted. "We (the creators of the computer) must now believe that the computer is able to function as our master. Our brain is `inferior' to this instrument of technology." He concluded dramatically: "Caring is our business, love is our method, and science is our tool - how can a computer do that?"

Despite the resistance, the PKC Corp. has won over some individual followers in the medical community. While it does so, the company has kept itself in business through contracts totaling about $8 million a year with the Department of Defense. The department has commissioned screening couplers for a wide range of things, from general health assessment to diagnostic tools for Persian Gulf syndrome. After September 11, a PKC program surveyed Pentagon employees about their mental health following the terrorist attacks.

For PKC employees, the most exciting use of Knowledge Couplers is in the medical clinics run by the military's department of health affairs. The department is looking for ways to give consistent medical care to US troops, military families, and veterans scattered across the world, and officials think couplers may help. "We know for a fact they will never replace a physician's judgment," says Lieutenant Colonel Scott Goodrich, "but just like having a deskful of textbooks and reference journals is a help to us, the couplers are going to be just that same type of physician-support tool." Goodrich is a family physician and manager of an Army program that is evaluating the couplers.

Yale University is running clinical trials for the Department of Defense on Knowledge Couplers at an Army hospital in Fort Knox, Kentucky, and at a Navy hospital in Mayport, Florida. If the trials show that the software improves patient care without taking too long to complete, Pentagon officials plan to begin tying it in to a second-generation, computerized database of patient records scheduled for widespread rollout starting later this year. The goal, officials say, is to have patient information automatically flow between the couplers and the enormous patient-record database, making it easier to both fill out a coupler session and update the medical record. In addition to possibly improving care for regular patients, the resulting system could make it easier for medics and nurses to follow the proper course of diagnosis and treatment on patients in remote locations, then electronically send the cases for review by specialists anywhere in the world.

Eighteen months ago, at the recommendation of the Department of Defense, the James A. Haley Veterans Affairs Hospital in Tampa completed a seven-month trial of the diabetes-management Knowledge Coupler. Most of the 38 test patients were in their 70s and 80s and had to be taught how to use a computer mouse. The patients filled out their part of the questionnaire with help from a secretary or pharmacist; a physician examined the patients and filled in their history. "I'm astounded at some of the knowledge that comes out" of the software, said Dr. Willard S. Harris, the former chief medical officer, who ran the test. "Much of it is knowledge that is repeatedly shown in the literature not to be used in actual practice," he said shortly after the testing. The trial found that regular use of the couplers improved the ability of the clinic's doctors to control the disease. Patients improved in seven of eight standards for diabetes management, compared with only one improvement for the patients who did not use the PKC software.

Despite the encouraging results, the Tampa VA decided not to incorporate the use of Knowledge Couplers into its clinics - an indication of the administrative resistance that PKC Corp. expects to face.

To reach wide audiences, the couplers would need acceptance by general hospitals, private practices, and health care organizations. Pierce says his company has begun trials with several large companies, which he would not name, to license an Internet version of the software. So, for example, a worker with a sore back could fill out an "acute lower back" questionnaire before visiting the company physician. That might result in a shorter visit.

The average patient may show less tolerance for the software than VA patients. VA patients tend to be less affluent, less busy (many are retired), and more tolerant of bureaucracies. Other visitors to a physician's office may resist the idea of sitting down before a computer each time. But with the rise of health-related Web sites, patients may be more willing to try. A March survey by the Pew Internet Project found that 73 million people in the United States have sought health information online. Other researchers have discovered that, as patients learn more, they are growing more and more skeptical of the "paternalist model" of medicine. Even if patients eventually decide to defer to their doctor's judgment, most want to know as much as possible about their conditions and their options for treatment.

Robert R. Weaver, an associate professor of sociology at Youngstown State University in Ohio, has taken an interest in Weed's work. He surveyed patients in a primary care clinic where Weed's software is used. Some grumbled that the couplers took too long to fill out. Others said they missed the interaction with the doctor. "It is just another way that the patient is alienated from his health care provider," one wrote. But Weaver found that most enjoyed being able to read all of the findings about their cases and print out copies to take home to review later or share with their spouses. "I like to be that much more a part of my own health care," one patient wrote.

Last year, the Institute of Medicine at the National Academy of Sciences, in Washington, D.C., released a report called "Crossing the Quality Chasm." The highly regarded report outlined dozens of flaws in the health care system in the United States. Among them was a tremendous gap between scientific knowledge and practice. That gap will only grow wider, the report said, as new technologies like genetic mapping and cell restoration make medicine more potent but exponentially more complex.

In an article in the Harvard Business Review the previous fall, three Harvard professors wondered in an article of the same title, "Will Disruptive Innovations Cure Health Care?" A disruptive innovation, as the authors described it, is a technology that shatters existing structures and changes everything, like the personal computer did to the mainframe computer. The authors, Drs. Richard Bohmer and John Kenagy and business professor Clayton M. Christensen, author of The Innovator's Dilemma, a bestseller among business books, wrote that the US health care industry is in crisis. "We believe that a whole host of disruptive innovations, small and large, could end the crisis," they wrote, "but only if the entrenched powers get out of the way and let market forces play out."

Both pieces made Weed angry: the first because he felt the Institute of Medicine team didn't go far enough in its criticisms or recommendations; the second because Christensen wouldn't reply to the correspondence in which Weed labeled the Knowledge Coupler as the disruptive technology that was prepared to tear up the health care industry. (A Harvard Business School spokesman says people in Christensen's office, which is swamped with mail, do not recall receiving the correspondence, but Harvard professors generally avoid endorsing any products.)

To disrupt the medical industry, Weed doesn't need every doctor to use his program on every patient, as he himself argues; he needs more hospitals to test the program, alleviate fears that it is impersonal and takes too much time to use, and begin incorporating it into existing medical systems, as the military is considering.

Some physicians and patients may be uncomfortable with the direction in which Weed would have us go. Ten years ago, if we wanted to trade a stock, we had to go to a broker. Today, we have E*Trade. Could Weed's program be disrupting medicine in the same way, bringing us closer to the days of E-Diagnose? In some ways, that will never happen. Patients will always need trained medical professionals to perform physical examinations, order lab tests, write prescriptions, and perform surgeries. Some patients will be too sick (or uninterested) to fill out the couplers. And few patients will be willing to throw their health completely into the virtual hands of a computer program. When we are sick, we need to feel as though our suffering is understood, and computers are poorly designed to show such compassion.

But when the PKC software makes it onto the Web, ordinary people who never labored through medical school will be able to record their own ailments and link those problems with a vast store of medical knowledge that is, in many ways, superior to the physician's memory. Although the software has the potential to become a hypochondriac's dream (or worst nightmare), it could cause the doctor-patient relationship to shift dramatically: The doctor will have to prove to patients that he followed the procedures called for by science.

As patients know more, they can collaborate better with the doctor in both diagnosis and treatment planning. Of course, patients who come into the doctor's office with reams of computer printouts and a newfound sense of understanding might be terribly annoying to physicians who are used to making unilateral decisions. But once their bruised egos heal, doctors may discover that they can leave work each day having cured more patients.

Berwick, the Harvard professor, has considered Weed a hero and "a giant of American medicine" ever since he devised the problem-oriented medical record. Berwick sat as chairman of the Institute of Medicine committee that produced the report that Weed criticized. He has seen the Knowledge Couplers demonstrated several times and has heard Weed's claims that they are ready for widespread use, but Berwick is not yet convinced.

Nevertheless, he contends that Weed's basic concept, that physicians need computers to make up for their brains' limits, is right on. "He's got to be right that it's computer-based," Berwick says of Weed. "Whether it's his [program] or not, I don't know. But my guess is, 30 years from now, we're going to look back on this and say, `How could we ever have thought we should do it the other way?' "

Chris Gaither is a Globe staff member who covers California's Silicon Valley.

This story ran in the Boston Globe Magazine on 7/14/2002. © Copyright 2002 Globe Newspaper Company.

1 posted on 07/14/2002 11:16:38 AM PDT by Cincinatus' Wife
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To: Cincinatus' Wife; *Death Cultivation
Couple this to the fact that some med schools no longer require the Hippocratic oath of their grads, and this story has the potential to grow more lethal -- a virtual cancer.
2 posted on 07/14/2002 11:36:54 AM PDT by Avoiding_Sulla
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To: Cincinatus' Wife
The first time we spoke about his views on health care, he referred to Karl Marx...


3 posted on 07/14/2002 11:41:22 AM PDT by 2 Kool 2 Be 4-Gotten
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To: Avoiding_Sulla
I don't see how this could not improve health care. You go in and give all your info to the nurse or PA and they dutifully take it down. Then the doctor comes in and asks you what's ailing you and A. either you try to go over it all again or B. you believe they will refer to your chart. The sad truth is they don't have much time and/or have an air that they know what is wrong and order a test or pull out that old Rx pad faster than a gun slinger ever dreamed of. "Thank you very much and take this to the front desk." Then there is the follow up, where, because most doctors' office are now mega patient factories, you feel like you're starting all over again when you walk in the door. With a system like this in place, it makes sense to me that a lot of the repeat and shotgun approach to diagnosis might be eliminated. And the part where they think it will make patients take unnecessary tests, I think it could be a wash as to the number, but with more hits than misses.
4 posted on 07/14/2002 11:48:25 AM PDT by Cincinatus' Wife
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To: Avoiding_Sulla
Absolutely fascinating. This is the classic "protocol" taken to a digital masterpiece of a conclusion, and provides much food for thought. The first problem I see in instituting such a process in hospitals and docs' offices is the apparent time-consumption it would demand. Already there is copious documentation to CYA everybody ---hospital, staff, accountant, billing coder, technicians and doctor and consulting doctors-- this documentation may take three or four times as long as the personnel actually spend with the patient...this sounds like a process that could take hours...

Prepared to pay for it?

If this is a diagnstic breakthrough, there'll be some resistence by the diehards who hate change, but what is described here is exaggerated and plays on a tiresome and childish resentment of doctors. Based, IMO, not on the fact that doctors play god, but that they fail to be the god that patients expect and demand.

5 posted on 07/14/2002 11:50:37 AM PDT by Mamzelle
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A surgeon was on C-SPAN this weekend talking about similar issues. He said that the doctors go to all these long years of schools, then are expected to have all that information in their head, instantly available. He said that's ridiculous. He also pointed out that the use of computers simply for creating the prescription (avoiding dosage errors and handwriting recognition problems) would avoid many deaths each year. So I guess I would like my doctor to have a computer handy (a handheld one if it didn't pass germs, etc. from patient to patient).
6 posted on 07/14/2002 11:50:50 AM PDT by RickGee
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To: Mamzelle
If this is a diagnstic breakthrough, there'll be some resistence by the diehards who hate change, but what is described here is exaggerated and plays on a tiresome and childish resentment of doctors. Based, IMO, not on the fact that doctors play god, but that they fail to be the god that patients expect and demand.

I think patients begin with a great respect for their doctors and hope they will be "god-like" in their ability to help them. But I don't think they realistically believe that. I do think, however, patients resent paying through the nose for a lot of wrong diagnoses. Especially those paid out of your estate.

7 posted on 07/14/2002 11:57:55 AM PDT by Cincinatus' Wife
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To: RickGee
8 posted on 07/14/2002 11:59:25 AM PDT by Cincinatus' Wife
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To: RickGee
I have had some semi personal experience with this. My mom had cataract surgery and almost immediately after began experiencing pain in her eye. Her current doctor did not know what was wrong and gave her medicine that did not work. She went back to him several more times and he could not tell her what was wrong. She switched doctors and the new guy began additional treatments that eventually cleared the problem up, as much as possible.

I went to a meeting with the original clinic's risk manager (fancy name for an insurance dude) and during the course of discussion, he handed me a medical story printout about what went wrong with the original procedure. One of the things that so disturbed my mother was that the original doctor did not know what went went wrong. The risk manager was real proud of having been able to pull the info off his company computer which I think was linked to some kind of insurance company/medical database. So I asked him why the doctor hadn't done the same thing. If he had, he could have diagnosed the problem ASAP and my mother would have had to go thru a lot less fear and pain. He got this real amazed look on his face like it had just never occurred to him that the database could be used to help in diagnoses. We settled out of court. parsy.
9 posted on 07/14/2002 12:03:28 PM PDT by parsifal
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To: Cincinatus' Wife
Bumping to finish reading later! LONG! My problems with Doctors is the universal one...EGO. The good ones are wonderful and the egotistical ones are a hazzard to my health!!
10 posted on 07/14/2002 12:04:40 PM PDT by AuntB
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To: 2 Kool 2 Be 4-Gotten
RE: Post #3

Yes, that Marx thing caught my attension also. Where is Weed coming from? And going to? Is he building an argument for medical chip implants so data can be plugged into a computer program?

11 posted on 07/14/2002 12:05:27 PM PDT by CWRWinger
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To: Cincinatus' Wife
Don't misunderstand. I agree with you. The resistance to improvements such as would reduce repetitive and angering additional tests has more to do with other, political, considerations than with the patient's interests.
12 posted on 07/14/2002 12:07:36 PM PDT by Avoiding_Sulla
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To: Cincinatus' Wife
Ok--I read the lead-in patient example, the plumber with the flail, first thing thought of is "night terrors" which is a kind of seizure, and treated with anti-seizure meds. Not really all THAT rare, and I suspect this is exactly what the patient has...whatever that paroxy stuff works out to be...This would have to be confirmed with MRIs and other tools. What I've just given you, in an unprofessinal way, off the cuff, is a "differential diagnosis"--part of a protocol that doctors **already** do.

Now, this program sounds like a nice, orderly way to go about it. I think it could be really cool.

What I am bemused about is the immediate reaction seen a computerized program of differential diagnosis is a "so there!" payback to all these terrible doctors with their huge egos.

This Weed fellow might just have an ego of his own to coddle.

13 posted on 07/14/2002 12:11:52 PM PDT by Mamzelle
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To: Cincinatus' Wife
When we are sick, we need to feel as though our suffering is understood, and computers are poorly designed to show such compassion.

With the fifteen minutes or less that you have to spend with a doctor, there isn't a whole lot of time for compassion. The correct diagnosis and the appropriate treatment is more important than great bedside manner.

It would be great if ordinary folks could have access to this software. Getting a good idea what's wrong with you before you see the doctor would be a great time saver...for everybody.

14 posted on 07/14/2002 12:12:21 PM PDT by JessicaDragonet
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To: AuntB
BIG EGOS--Beware the humble surgeon. You don't want a hand-wringing Oprah weeping over your open chest cavity, but a person confident and sure of his skills. At least, that's what I'd want.
15 posted on 07/14/2002 12:15:22 PM PDT by Mamzelle
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To: CWRWinger
Weed is really who the article says he is, being the Weed of the famous SOAP notes i.e.

S(ubjective): Patient complains of loss of hearing and of having a banana in his ear.

O(objective): Patient cannot hear well and has a banana in his left ear.

A(ssesment): Patient has a banana in his left ear.

P(lan): Remove banana from left ear.

It doesn't seem like much but it actually became common practice and was a bit of an advance.

However if you think about it what was good about the SOAP notes and the problem based medical record is noticeably absent from the current proposal i.e. simplicity and common sense.

And for my part, I instantly distrust anyone who brings up Karl Marx in regards to anything unless it is to disparage him.

16 posted on 07/14/2002 12:16:40 PM PDT by 2 Kool 2 Be 4-Gotten
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To: Mamzelle
I wasn't talking about capability. I was talking about ego getting in the way of healing. Man's greatest fault is the inability to admit he may just be wrong.
17 posted on 07/14/2002 12:17:16 PM PDT by AuntB
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To: Cincinatus' Wife
I like this part: "In the end, Cross says, the man's symptoms satisfied all three findings for nocturnal paroxysmal dystonia, a rare disorder that Cross had never heard of. " I think that is the crux of it - it helps expand the doctors knowledge. Put in the symptoms, and out pops a list of possible diagnoses. Doc says "Hmmm ... I didn't consider that disease .." Not to replace the Doc or diminish their expertise or skills in any way, but it seems like it would be a great tool to help a Doc cover all the bases, so to speak.
18 posted on 07/14/2002 12:25:47 PM PDT by GaltMeister
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To: Mamzelle
That should have be alleviated long ago by tort reform. It was vetoed by x42 for the sake of his buddies.
But tort reform is still not forthcoming. Has it even been on the radar screen in this Congress?

Enviro-wacko death cultivation long ago targetted medical progress. So they and their politicos are naturally allied with these non-productive, resource stealing (especially scarce time consumed for CYA), and very life-threatening lawyers.

That is but one resentment that the lawyers prey upon. Large, lucrative, unlimited judgments against doctors are their first interest though. That remains fettered. Do you agree that should be bumped up in importance?
19 posted on 07/14/2002 12:26:57 PM PDT by Avoiding_Sulla
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To: 2 Kool 2 Be 4-Gotten
I obviously have missed some things in the news. I've never heard of "SOAP" notes or Weed.

Weed makes some good points (but so do communists, at first). IMO, 75% of all doctors are greedy quacks and don't know what they're doing.

The other 25% may know, but are too expensive and too hard to get an appointment with.

20 posted on 07/14/2002 12:27:15 PM PDT by CWRWinger
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