Billionaire Teddy Forstmann has apparently been diagnosed with a serious form of brain cancer.  There’s a tragic twist to the story: according to Fox Business News, Forstmann believes that for more than a year, he had been misdiagnosed with meningitis.

ABC News wonders:

How could such a misfortune befall a billionaire —- a man able to afford the best doctors, best technology and the most sophisticated diagnostic tests?

They’re missing the point.  Misdiagnosis happens with shocking regularity – as much as 44% of the time, depending on the illness.

I’m sure that, as with most things, being a billionaire is better.  But as a neurosurgeon quoted by ABC News points out, even for a billionaire, getting the right care is “still a bit of a crap shoot.”

So how can you improve your odds?  Here are 5 tips that work.

1.  Know your family history – and remind your doctor of it. Don’t assume your doctor remembers that time you told him that two of your aunts died of breast cancer, or that your grandfather and father have a history of malformed blood vessels in their brains.  Research studies have shown that a family history may be a better predictor of disease than even genetic testing.  Find out about your family’s medical history, write it down (the Surgeon General has a good on-line tool to help you do this), and make sure your doctor knows about it – especially if you’re sick and they’re trying to decide what’s wrong.

2.  Ask questions.  The typical doctor sees as a many as 40 patients a day, spending 15 minutes or less with each one.  It’s all too easy to be referred to a specialist and start treatment without having all of your questions answered.  But asking questions won’t just make you feel more comfortable – it can disrupt your doctor’s thought process and make him think about your case in a way that may save your life.  Dr. Jerome Groopman, one of the world’s foremost researchers on how doctors think (he’s written the definitive book on it) agrees:

“Doctors desperately need patients and their families and friends to help them think. Without their help, physicians are denied key clues to what is really wrong. I learned this not as a doctor but when I was sick, when I was the patient.”

You can find some useful tips on how to do this at the U.S. government’s web site, called “Questions are the Answer.”

3.  Don’t Assume Technology Will Save You.  The best medical technology ever available is available today.  Still, studies show it is no more effective at getting the right diagnosis than a doctor piecing together your family history along with more traditional, low-tech tests.  If I had to pick between getting a high-tech test and a doctor who will spend an hour talking to me, thinking about my case and putting all of the pieces together, the research says I should pick the doctor.

4.  Don’t Always Trust the Tests. Some tests, like a review of pathology, can be wrong more than 40% of the time.  Why?  Because interpreting these tests is a matter of judgment, and experience.  As Dr. Lisa Sanders, who writes the New York Times’ Diagnosis column puts it:

“There are lots of diseases that can look like something else.  And that’s where clinical judgment and experience are essential.  Doctors see results as coming straight from God.  But just because a test gives you a yes or no answer doesn’t mean it’s right.”

5.  Get a Second Opinion.  But not just any kind of second opinion.  You need the doctor to look at your case from scratch – to hear you talk about your symptoms in your own words, and to think about your case without being influenced by the conclusions of your original doctor.  Don’t say “I was seen by Dr. X and he tells me I have meningitis and need treatment Y, what do you think?”  Instead, describe your symptoms, tell him about your family history, the tests you’ve had done, and help him come to his own conclusions about what’s wrong with you.  Of course, if you have Best Doctors, you can call us, since that’s what we do.  If you’re not satisfied with the answers, get another opinion – you only have one life, and maybe only one chance to get this right.

I’m in Israel, home to some of the most innovative care in the world.  Doctors here wanted to know if the high-tech tests that are an increasing part of their work help.  A couple of weeks ago, they published their results.

It turns out that in about 90% of cases, it didn’t matter.

A physical exam, the patient’s history, and the basic set of tests that doctors have done for decades was almost always all that was needed to get a diagnosis.  As one of the doctors in the study put it, “basic clinical skills remain a powerful tool, sufficient for achieving an accurate diagnosis in most cases.”

The conventional wisdom is that doctors – at least in the U.S. – order extra tests to protect themselves from getting sued.  But this study was done in Israel, where the problem of medical malpractice is nothing like it is in the U.S.  American-style defensive medicine can’t be the reason doctors in Israel use so many diagnostic tests.

Instead, the answer is revealed in a comment from a Canadian doctor who wasn’t involved in the study.  According to him, the use of high-tech studies has become so “routine” that doctors need to be reminded that they aren’t a replacement for actually diagnosing the patient.

There is something more fundamental happening – and it’s happening around the world.

To understand it, look to something that is happening in courtrooms across the U.S.  Some call it the “CSI Effect,” after the TV show, CSI.  In that show, a police team uses sophisticated technology to identify criminals with almost complete certainty.  Researchers have found that shows like CSI have changed jurors’ expectations of what kind of evidence the prosecution should be able to present.

Something like this is happening in medicine.

Patients show up with the expectation that the doctor will use sophisticated technology to get a quick diagnosis.  They’re often surprised to see how it really works.  Their doctor is rushed, uses paper files, and it can often take a long time before you get a clear diagnosis.  Doctors often order high-tech tests because patients expect it.

But doctors also do it because they are so pressed for time – because a test is a convenient short-cut that might reveal the answer without having to go through the trouble of asking questions, spending time with the patient, studying their medical history, and thinking about the meaning of more routine test results.

So are doctors lazy?  Do patients have overblown expectations of what doctors can really do?  Maybe.  But there is a more important truth which studies like this help reveal.

The most valuable piece of equipment your doctor has is his or her brain.  High-tech tests may give more information, but they are no replacement for your doctor’s training, judgment, and insight.

Some people may tell you that health care IT will solve many of the quality and cost problems in health care.

I don’t believe them.

I know a 70-year old man named Carlos (not his real name) who was hospitalized following a bout of hydrocephalus.  Hydrocephalus is a build-up of fluid in the skull, which affects the brain.  Among other things, people with hydrocephalus can be confused, irritable, and nauseous.  Carlos had all of these symptoms.

Carlos’ problem was fixable by inserting a special kind of drain in his head called a “shunt.”  This kind of shunt is, essentially, a series of catheters that runs from the brain into the abdomen, and which drain the excess fluid.  You can’t see it from the outside, so it’s meant to stay inside of you for a very long time.

For a week after Carlos’ shunt was installed, his symptoms completely disappeared.  But they soon started to re-emerge.  Worried, his family took him to the hospital.  Doctors found that his hydrocephalus was back – the shunt wasn’t draining properly.  They admitted him to the hospital, and the next day they put in a new shunt.  The surgery went well.

But again, about a day later, he started to have the same kinds of symptoms.  The doctors sent him for a CT scan, which showed, to their surprise, no problems with the shunt.  Unsure of what to do, they decided to wait and see if the symptoms resolved.  It was possible, they thought, that the symptoms were from the quick drainage of fluid through the shunt.

A doctor friend (call him Lou, although that’s not his name) happened to be visiting while this was going on.  Lou knew that Carlos had been on certain medications for a number of years.

“Has he been getting those medications in the days he’s been in the hospital?”  he asked the attending physician.

“I don’t know,” said the doctor, who went to check the hospital’s electronic medical record system.  “The meds are listed here, but it doesn’t look like he has been getting them.”

It wasn’t entirely shocking, since Carlos had been in and out of surgery.  Still, it was curious.  “What are you getting at?” asked the doctor.

Lou pulled out his iPhone, and looked up the symptoms of withdrawal from the medications Carlos was taking.  He showed them to the attending doctor:  confusion, irritability, nausea.  Very much what they were seeing and trying to explain as having to do with the shunt.

The attending spoke with the other physicians treating Carlos, and decided to put Carlos back on the medications.  His symptoms went away a short time after that.

One doctor I talked to about this story told me the doctors did the right thing.  Carlos had a history of hydrocephalus and problems with his shunt.  It made sense to rule out issues with the shunt before looking for other answers.

But another doctor I spoke with didn’t agree.  Given that the shunt had just been replaced, it seemed premature to try to explain everything by looking for another defective shunt.  Instead, this doctor told me, someone should have taken a look at his history before sending him for another CT scan.  As this doctor put it, “a patient is not a shunt.”

Carlos’ story tells us something about health care information technology that we may not want to hear.

The IT systems in the hospital were mainly used to order the CT scan, and to keep track of…medications that weren’t being given.  The single most important piece of equipment in Carlos’ case was the brain of the doctor treating him. .

Being a good doctor means asking good questions.  Until a computer can do more than come up with good Jeopardy questions, we must realize that we are still reliant on human judgment, and human fallibility.

And we will be for a very long time.

At noon ET today, I’ll be on a live webinar with Kaihan Krippendorff of Fast Company magazine.

Here’s my post explaining what it’s all about – or you can just go here to register.

Remember, it’s free – so don’t miss it!

There’s a country with an unusual health care system.

In it, you often spend about as much time with your lawyer as you do your doctor.  There are special courts set up to decide what kinds of treatment you are allowed to have.  And doctors have to be careful that they don’t say or do the wrong thing, or else they risk being blackballed by insurance companies.

The country:  the United States of America.

You may not realize it, but if you hurt your back at work, you end up in a different health care system than if you hurt your back at home.  Sure, you may end up with similar doctors or hospitals, but your experience of health care will be completely different.

Here’s why.

If you get hurt at work, you’re covered by the “workers’ compensation” system.  That system has its roots over a century ago, when employers didn’t do much to take care of workers.  So the system is based on laws that mandate employers to take care of injured workers, often for the rest of their lives.  In exchange for this very comprehensive coverage, employers and their insurers get a great deal of control over what care workers get and where they get it.

Does the workers compensation system represent a model of how a future American health care system might work?

It might.  Provisions of the health care reform law propose very scientific-sounding controls over how people will get their care.  The risk is that these well-intentioned programs will become the basis for a new world of conflict and lawsuits.  Just as they have in workers compensation.

But I’m not so pessimistic.

Last week, I participated in a terrific panel on the present and future of workers compensation at the huge National Workers Compensation and Disability Conference & Expo.  The panel was made up of 12 people representing all aspects of the workers compensation industry – lawyers, administrators, insurers, intermediaries, consultants, and, well, me (you can put me in whatever category you like – they had me down as a representing medical services companies).

One thing was clear from the discussion.  No one was satisfied with the current state of the workers compensation industry.   Everyone felt it had become too adversarial, too regulated, and too detached from the needs of the patient.

In this sense, while the current state of that industry is troubling, there are hopeful signs.  Innovative companies are  refusing to accept the old way of doing things.  They find that by focusing on the needs of the patient, they can improve the quality of care, reduce costs, and help create a world where the employer and insurer, doctor and patient are all pulling in the same direction.  The more these kinds of groups are successful, the more difficult it will be for our health care system to turn into something it ought not be.

And so the order of battle is established.  One on side will be the notion that the best way to control cost in health care is to make sure that the needs of the patient come first.  On the other will be those who want to go in a different direction.

We live in the time when this battle will be fought, and we all have a part to play in its outcome.

Who do you think is likely to be a better doctor:

A board certified graduate of one of the top medical schools in America, or a non-certified doctor trained in a foreign country?

If your answer is “I have absolutely no idea,” then you’re probably spending a lot of time looking at the “report cards” that pass for measures of health care quality.  And you’re probably confused.

Researchers in Pittsburgh studied 124 process-based quality measures in 30 clinical areas.  These process measures are the state-of-the-art ways in which government and private insurers are checking up on the quality of medical care.  They include things like making sure patients with heart problems are prescribed aspirin, and that women get Pap smears.  The researchers compared these measures against other, simpler measures, like medical education, board certification, malpractice claim payments, and disciplinary actions.

The result?

You couldn’t tell the differences among doctors:

For example, the average board-certified, U.S.-trained female physician scored only 5.9% better on performance measures than a noncertified, foreign trained male doctor.  There were no statistically significant quality differences when comparing physicians who made malpractice claim payments versus those with no such record.  Doctors who graduated from medical schools ranked in the top 10 by U.S. News and World Report scored no better on the quality measures than physicians who did not.

Surprisingly, the Pittsburgh researchers saw this as good news.  The problem, in their view, wasn’t that the quality metrics don’t make sense….it’s that things like being highly educated and well-trained don’t actually matter that much.  I’m serious.  According to the co-author of the study:

You can feel secure in the fact that some of these varied demographic characteristics that are used to judge one physician from another don’t matter much in the end.

Well, ok then.

If it sounds familiar, it’s because the same thing is going on with hospital quality measures.  Using the government’s quality measures, you can’t tell the difference between a major academic medical center and a local community hospital.

So what’s going on here?

As well-intentioned as these quality measures may be, they veer so drastically from experience that doctors are starting to ignore – and resent – them.  Dr. Danielle Ofri, writing in the New England Journal of Medicine says these measures:

purport[] to make a statement about comparative quality whose objectivity is a fallacy. . . . By and large it serves only to demoralize doctors.  It offers patients a seductively scientific metric of doctors’ performance – but can easily lead them astray. . . .  Doctors who actually practice medicine – as opposed to those who develop many of these benchmarks – know that these statistics cannot possibly capture the totality of what it means to take good care of your patients.  They merely measure what is easy to measure.

And so if the goal of these measures is to improve the quality of care, they’re missing the mark.  Doctors will tell you that the biggest challenge they face in delivering quality care is the fact that they have to see 40 patients a day, spending 15 minutes with each one.  Checklists and report cards continue the systematic devaluation of the thinking, reflecting and deciding aspects of medicine.  So instead, why not start with what really matters: the time doctors spend with their patients.  If you ask Dr. Ofri – what would definitely improve the quality of your patients’ care, she will tell you: “an hour-long visit instead of 15 minutes.”

David Williams, the Charlie Rose of the health care blogosphere, recently interviewed me.

You can listen to the audio of our wide-ranging talk on David’s always-interesting Health Business Blog.

We talked about health care reform, health IT, social media, health care quality, patient navigation, and the role of Best Doctors.

Give it a listen, and visit back to David’s blog regularly.

What’s your opinion on the subjects we talked about?

According to the Annals of Internal Medicine, doctors make the wrong medical decisions surprisingly often.

Using a “mystery patient” technique – in which actors pretended to be patients – researchers found that doctors made errors in complicated cases in 60% to 90% of cases.  Sixty to ninety percent. In uncomplicated cases, they made errors in nearly 30% of cases.

As one study participant put it, “I was shocked.”

The study took place over 3 years, and included more than 100 doctors in six Chicago-area hospitals.  The doctors had agreed to participate in a study on medical decision-making but had no idea that they might see a patient who was actually an actor.  The actors recorded their conversations with the doctors.

The actors used scripted medical situations.  In each case, the actor presented their medical situation, but mentioned “red flags” that should have caused the doctors to pay attention and change their plan of care.  According to the LA Times:

Researchers used the audio recordings and medical records to calculate how often physicians picked up on red flags signifying possible complications and consequently adjusted their plan of care. The failure to do both counted as an error. In contextually complicated encounters, error-free care was provided only 22 percent of the time; in biomedically complicated encounters, the error-free rate was 38 percent.

The researchers called this a “failure to individualize care.”

So what’s going on?

Regular readers here won’t be surprised to hear how one participant explained the failure to pursue these red flags.  Doctors, he said, are under “incredible time pressure and don’t want to go there because it could open up a whole can of worms.”  There’s likely a lot to this explanation. It’s hard to expect even the most gifted clinician, trying to make it through yet another week of a hundred or more patient encounters, to get these difficult decisions right.  Too much of the context of a patient’s care gets lost in the endless churn of patient visits that the health care system imposes on doctors.

I suspect this is enormously frustrating for doctors, although it’s worse for patients.  What the researchers call a failure to “individualize care,” a patient might call “not being paid attention to.”  It’s a dynamic that anyone who’s been ill has probably seen first-hand.

As policymakers talk about comparative effectiveness and electronic medical records and all the rest, they keep repeating the same mistake that brought us to this point.  They fail to understand that doctors need time – time to think, time to reflect, time to consult on their patient’s case.  Time to sit with the patient, time to understand their situation, time to help them make the best decisions.  Time to use their intellect and their training.  Time to make clear to their patient the truth:  that they care, and are here to help.

And so until the time comes when we place the relationship between doctor and patient at the center of everything we do in health care, we’ll continue to see tragic results like those found in this remarkable study.

If a web site touted misleading health care information, you’d hope the government would do something about it.  But what do you do when the government is the one feeding the public bad information?

Last week, the Obama administration launched the new Healthcare.gov.

It’s mostly an on-line insurance shopping site.  It is very much a federal government version of sites like eHealthInsurance.com or Massachsetts’ HealthConnector site, which have been around for years.  So when HHS Secretary Kathleen Sebelius, in announcing the new site, claims it gives consumers “unprecedented transparency” into the health care marketplace, you should wonder what she means.

But that’s not the big problem with this site.

Right there in the middle of the top of the page is a big tab that says “Compare Care Quality.”  If you click on it, you are taken to an “interactive web tool” that claims to show you “44 quality measures” about hospitals.  The site says it will help you compare the quality of care hospitals provide.

I decided to look at hospitals in the area where I live, Boston, Massachusetts.  It gives you a list of hospitals in your area, and gives you options to compare hospitals based on medical conditions and surgical procedures.

I decided to compare the Brigham and Women’s Hospital in Boston with the Hallmark Health System in Melrose.  If you don’t know these two facilities, the Brigham is a Harvard teaching hospital, justifiably world-renowned in many areas of care.   The Hallmark Health System is a network of community hospitals, which I suspect most people even in the Boston area aren’t familiar with.

I decided to run my search based on the idea that I was trying to help someone with breast cancer.

The first problem I ran into is this: they don’t have any data on breast cancer.  Actually, they don’t have data for cancer at all.  The only things they can tell you about are chest pain, heart attack, heart failure, chronic lung disease, pneumonia and diabetes in adults.

How about a search on surgical procedures?  Nothing again.  My only option is a “general” search.

Ok, well, I guess it’s a work in progress.  So how do the two hospitals stack up?

They give you a few ways to compare, but the one that I think most pertinent is “outcome of care.”   If you click on that you see that “outcomes” are based purely on how many people died who had a heart attack, heart failure, or pneumonia.  So much for my “general” search (and my cancer patient).

So how do they stack up?  You can’t tell the difference.  Both hospitals are “no better than the national average” in two categories, and “better than the national average” in one.

You get more detailed information – but it only makes things worse.

For example, in death rates for heart attack, the Brigham and the Hallmark hospitals are both “no better than the national average.”  Is that good?  It turns out that that “above average” hospitals are as rare as four leaf clovers – out of 4,569 hospitals in their data set, only 95 are better than average (2%). Only forty-five (1%) are worse than average.  Two-thousand seven hundred and forty four (60%) were “no better than the national average.”

The other 1,685?  They don’t have enough data to figure that out.  The smart money says they’re all “average,” too.

Maybe if I just compare them to other Massachusetts hospitals I will get a clearer picture.  Nope.  Out of 65 hospitals measured in Massachusetts, only nine were better than the national average (14%).  Fifty-one were average (78%), and zero – zero - were worse than average (5 didn’t have enough data).

I know health care in Massachusetts is good -but not a single hospital is below average?

It is deeply misleading to consumers to suggest they inform their health care decisions in any way shape or form by this kind of data.  It’s not that the data is incomplete – it is – it’s that even within the data you can’t tell the difference between a major teaching hospital and a local community hospital.

I’d love to know if the people presenting this as a useful tool for consumers think it really is.  It leaves you knowing less about the differences among hospitals than before you use it.  That’s shameful because the site encourages people facing medical situations to use it for that purpose.  The only thing it is going to do for sure is heighten patients’ anxiety, and make their decision-making more difficult.

The Jobbing Doctor, a primary care doctor in the UK, writes today about the British version of what Americans call “Pay for Performance,” or “P4P.”

He says something I’ve said many times before (like here, here, and here).  Which is this: incentives fail because they try to treat medicine as an assembly line process, when it’s not.

But what’s most interesting about his post is that it could have been written by a doctor from anyplace on the planet Earth.

The Jobbing Doctor talks about a UK program that started in 2004 called the Quality and Outcomes Framework, or “QoF.”   Now, the American “P4P” is a much more catchy name, so score one for American marketing.  But it doesn’t matter what you call it – that which we call a rose would, by any other name smell as sweet.

Or, as in this case, as sour.

According to the Jobbing Doctor, QoF has actually increased costs (or at least doctors’ income- he says it went up 33%) because the government seemed to have underestimated the extent to which doctors were already delivering high quality primary care.  He also notes that because the guidelines are so crude and so focused on certain illnesses, there are incentives to meet targets rather than understanding a patient’s medical condition.  It’s pretty much the opposite of what doctors are taught to do in their training.  And his complaints about QoF sound very similar to complaints from doctors in other countries about the impact of such well-meaning efforts by government and private industry.

Which is the larger point.

As Jobbing Doctor put it so eloquently, measures like these distort the practice of medicine and take it away from what is really important:

The other downside is that ideas like the QoF diminish a profession’s values and judgements, meaning that high quality care is not driven by an internal motivation for doing a good and valuable job well, rather we have to be driven by targets.  Targets are the antithesis of professionalism.