According to news reports actor Michael Douglas, perhaps most famous for his role of Gordon Gekko in Wall Street, is suffering from stage IV throat cancer.

He started complaining about symptoms to doctors earlier this year.  His doctors didn’t find anything to explain the problem until months later, when they discovered a walnut-sized tumor in his throat.  Even though doctors had originally told him they couldn’t find anything wrong, Douglas and his wife, actress Catherine Zeta-Jones were sure something wasn’t right.

Still, after months of feeling the pain creep up on him, of having a dry throat and hoarse voice, the news of his cancer came as little surprise to both Hollywood stars.

“It wasn’t a huge shock. I knew something was up. He knew something was up,” said Zeta-Jones.

It’s an all-too familiar story.  Being a rich and famous celebrity can make you special.  But when it comes to the right care, you’re as ordinary as the next guy.

How do I know?  Here at Best Doctors, we’ve got a lot of experience and data on what happens to regular people when they get sick.

We get our data from the programs we run.  In our work, members call us when they’re trying to make decisions about their health care.  We do whatever we can to make sure the person knows what’s really wrong and what to do about it.  The people we serve work in factories, behind desks in an executive suite, in retail stores, behind the wheel of a truck – it’s a cross-section of Main Street America.

Our call data is fascinating – and disturbing.

More than one-third (34%) of our calls are from people who haven’t been able to get a diagnosis or have symptoms that aren’t getting better.  They’re trying to figure out what to do, but are finding that the system is failing them, just when they need it to work.

Why does this happen?  I think it’s because health care has become increasingly depersonalized.  Medicine is being turned into something like an assembly line process – 15 minutes per patient, 30 patients a day, please fill out the following form and see the nurse at the front when we’re done. Medicine – the art of listening to patients, thinking about their problems, and offering solutions – is slowly dying under this pressure.  Doctors know this, and they don’t like it.

The trouble for regular people is that you haven’t a clue this is going on until you get sick.

You can’t fix the system, but you can protect yourself from its failings.  Stand up for yourself.  Use every resource available to you to make sure things go right.  Insist that your doctors hear your concerns.  And above all, don’t let anything happen until you’re sure you’re doing the right thing.

If you’re into health care consumerism, and you like, well, me, you will enjoy my guest blog post at CDHC Solutions Magazine.

CDHC Solutions focuses on consumer-driven health plans.  Consumer-driven plans are a form of “high deductible” health coverage that is more popular than ever.

For whatever you want to say about these plans, one thing is clear: they don’t solve the fundamental problem of patients not having enough time with their doctors.

Here’s a taste of what I wrote:

Researchers have been trying to pinpoint the impact of this time starvation on the quality of medical care, and they’re finding disturbing results. A recent study in the Annals of Internal Medicine found that because of time pressures and related factors doctors deliver “error-free” care as rarely as 22% of the time. The researchers called this a “failure to individualize care,” which is a nice way of saying the doctors just weren’t paying enough attention to the needs of their patients.

Read the whole thing here.

ABC News reports on the murky world of discount medical plans.  They scored a series of quotes from me, including this one:

If your gut tells you that you need to wonder about what you’re hearing, it’s a bad sign. If it seems too good to be true, it probably is.

Read the whole thing.

Elsewhere, David Williams of the Health Business Blog now has the transcript of our podcast up on his site.  He’s split up the interesting discussion into two parts, with the first part here and the second part here.

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?

How often do people get the wrong diagnosis?

Too often.

There are things you can do help protect yourself.  Things like, asking questions, being sure everything makes sense to you, not doing anything you’re not sure about.

At Best Doctors, helping people do this is what we do every day, and so I want to tell you a story.  It’s about my brother.

I want to tell it to you it because it will help you understand the important work we do here, and because of something very special that happened for him this weekend.

My brother’s name is Brad Falchuk.  He’s about a year and half younger than me.

Imagine being a kid, like we were, back in the 1970s.  There were no video games or internet, so we spent most of our time on more productive things.  Like, beating each other up.  And, more importantly, talking about, and playing baseball.  When our sister Aimee came along, she got right into the mix, too.  We were a pretty focused little group.

Now, the Red Sox of the late ’70s were as good as they had been in decades.  We became enthralled with everything to do with the Red Sox.  We spent most our afternoons in the back yard pitching and hitting and pretending to be our heroes.  I even kept a scorebook of our games.

As we grew up, our lives went in different directions.  Brad went to Hollywood, where he became executive producer of the TV show Nip/Tuck, and the co-creator and executive producer of the TV show Glee.  I became an attorney, but ten years ago I gave that up to come back to Boston and join Best Doctors, the company our father founded.  My sister became a health care executive and now works for Genzyme.  We’ve grown in different directions, but we haven’t grown apart.

One day, about two years ago, my father told me some shocking news.  “Brad’s been diagnosed with a spinal cord tumor,” he said.  I couldn’t believe it.

When I called my brother he told me the same news.  It was true, he said, and he was afraid he’d never walk again.  He was with good doctors, he said, but he was worried that he didn’t understand what was going on.

What happened next was what makes Best Doctors so special.

Our medical team spent hours talking to him and poring over his medical records.  In them they found something very important that had been overlooked.

We have a family history of a kind of malformed blood vessel.  In my case, and in our father’s and grandfather’s, these have all appeared in the brain.  But, one of the Best Doctors team wondered, isn’t it possible that what was going on in Brad’s spinal cord was really just one of these malformed blood vessels?  We contacted an expert in exactly this kind of problem, and he agreed.  Yes, it could be, he said, and he recommended a test to find out.  Meanwhile, don’t do radiation or surgery until you know for sure, he warned, it could be dangerous.   We gave that information to Brad, and his doctors, and they followed the advice.

The result:  They found exactly what the expert thought they might.  The “malignant” tumor was just one of these bad blood vessels.

Brad needed a major surgery to fix that problem, too, but it was a completely different situation.  The (unnecessary) radiation that had been planned was terribly dangerous.  It could have made the vessel bleed, causing the very paralysis my brother was afraid of, or even death.  It’s something of a miracle, really.  When our father founded Best Doctors, he never could have imagined that 20 years later, the company would save his son’s life.

Brad’s recovery has been excellent, but challenging.  At the beginning, numbness and pain made it hard for him to do the things he was used to.  He’s worked hard, and has been able to get back to exercise and some sports.  Still, I thought his days of playing baseball were over.

I was wrong.

Brad donated some things from Glee to the Red Sox Foundation to help in their charitable work.  The Red Sox, as a thank you, asked him to throw out the first pitch at Fenway Park at a game, which was this past Sunday.

And so it happened that Brad Falchuk took the mound at Fenway Park.

It’s not exactly the way we pictured it happening when we were kids.  But you know what?  This was much better.

You have a right to your medical record.

It’s true – the record of every test and procedure you’ve had done, any films or studies, your doctors notes.  It’s all yours if you ask for it.

But it’s not that simple.

If you’re sick, your “record” is likely in pieces in lots of different places.  Some of it is in paper files and computers in the offices of each of your doctors, or in the clinics where you had a test or procedure.  It’s in multiple computer systems in a hospital, or in a folder in a radiology department, a container in a pathology department, or the computer system of a pharmacy.  Each of these places has their own policy or procedure if you want your record.  There are forms you have to fill out, fees you have to pay, time you have to wait.

So while you have a right to your record, for practical purposes, you’re going to have a very difficult time actually getting it (by the way, this is something our team at Best Doctors does very, very well).

But let’s say you actually get all of your medical records.  Now what?

A national study called OpenNotes, is trying to find out what happens when patients get easy, rapid access to their records – or at least their doctors’ notes.  The early results are mixed.  Some patients say it helps them understand what’s going on.  But some doctors say it leads to extra time with worried patients, adding to doctors’ already heavy case load.   The final results will yield better insight into both of these issues.

But it all reveals a larger issue:  There is a divide between you, your doctor and your medical information.

As your doctor opens up his paper file and logs into his local computer system to reacquaint himself with you, he is looking only at a fragmented piece of your medical history.  He is likely missing valuable pieces of context about you.  Those gaps may not matter very much.  But they might.

All of this is an argument for having electronic medical records, and of course billions of dollars are being spent on this.  But all you have to do is spend time in a hospital or a doctor’s office to know that we are a very, very long way away from making this a reality.  And so as a patient, one of the most important things you can do is exercise your right to get your records.  Make sure you understand what they say, and use every resource at your disposal to make sure you get the care you deserve.

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.

When health care reform became law, HR and benefits professionals I spoke with had two reactions: surprise and annoyance.  Surprise, because they thought reform was dead; annoyed, because the law was full of provisions that didn’t make sense to them.

But it was partly their own fault.

Blogs and other social media were buzzing with health care reform talk for more than a year, and were more influential than ever.  But HR and benefits professionals – experts in the topic – were mostly on the sidelines.  They didn’t shape the debate, didn’t point out when people didn’t know what they were talking about, didn’t talk about how what was proposed would affect what they did for a living.

Don’t take my word for it.  A study last year on social media use by HR professionals revealed some striking results:

• Only 13% use RSS feeds, tags and bookmarks
• Only 5% post original content to blogs and website
• Only 4% post ratings and reviews or comments on blogs and on-line forums

Reform shows there are real consequences to this failure to participate in social media.  If you’re not part of the conversation, you’re marginalizing yourself, losing influence within your organization and the world.

So let this be a wake-up call:  Get involved in social media.

Easy to say.  But how do you get started?

Here are three simple steps you can take – today – that will have you in the game right away.

1. Set up an RSS reader. A what?  An RSS reader is a fancy word for a simple web tool that lets you read multiple blogs, news sites, or other web sites all in one place.  Getting started is easy.

Create an account with an RSS reader provider (I use Google – it’s free and you can sign up for here).   Next, enter the address of each of the websites to which you want to subscribe.  Now, every time there’s a new post or article on that site, you see it show up in your reader, sort of like getting an email.  Now, any time you find a cool or interesting website or blog, you can just add it to your reader.

When you start you’re only going to have a few web sites on your reader.  That’s ok.  When you find a blog you like, here’s a tip.  Most bloggers keep a list of their favorite blogs on the lower right hand side of their blog.  It’s called a “blogroll” and if you like a blogger, you’re sure to find interesting blogs that that blogger reads.  Click through to them, and if you find something you like, add it to your reader.  Check out their blogroll, too.

In no time at all you’ll have a lively, interesting set of things to read every day.  You’ll also probably learn that your favorite TV and print media are often a day or two behind blogs in reporting on interesting stories.  You’ll be “in the know.”

2.  Create a Profile on LinkedIn. LinkedIn is one of those “must haves” mostly because it’s so damn practical.  You probably go to lots of conferences and events where you meet interesting people in your industry and get lots of business cards.  But by the time you get home, you’ve completely forgotten whether that Evan Falchuk guy whose business card you have was the fascinating person you met at lunch that you wanted to follow up with, or if he was the guy at the booth who had nothing to say.  Now what?

What I do is go to LinkedIn and search for his name.  Presto, up comes a picture and a basic resume – ah, now I remember who he is.   Now, if you want, you can press a button and add him to your network.  If he accepts (most people who you’ve met will accept your invitation) you get to see much more detail about them, including who they are connected to.  You’ll be surprised at what a small world it is and how much easier it now is to network.

What’s more, you now have some kind of rudimentary relationship with the person.  More serious users of LinkedIn regularly update their profile with news, or post interesting articles or blog posts, so it’s a great way to get to know someone in a completely passive way – all you have to do is read.  Next time you see them, you’ll have more to talk about than trying to remember each others’ names.

Know this, too: if you’re ever looking for a job or trying to hire someone, having an active LinkedIn profile means you have an installed network of people who can help you.

Setting up your profile is very easy, you can do it here.  Share as much or as little about yourself as you want, but whatever you do make a profile.

3. Create a Twitter Account. Twitter gets a really bum rap as a place where people post inane stuff like what they are eating for lunch.  It’s true, there is a lot of that out there, but that’s not my experience with Twitter.  Think of Twitter like a big cocktail party where you get to decide who’s there, where you can overhear every single conversation, where people agree to only talk about subjects you’re interested in, and where you don’t have to say a single word.

Sounds pretty good, right?

It’s true.  I follow more than 1,000 people on Twitter.  Many are doctors, some are HR and benefits professionals, others are business executives, news analysts and other people interested in health care or business.  As you might expect, almost all of the posts I see have something to do with some health care story that’s in the news, or being talked about on someone’s blog.  It’s a real-time view of what people are talking about.

Setting up a Twitter account is very easy (do it here).  Finding people to “follow” (it’s not stalking – people want to be followed!) may take a little bit of work.  Start by following someone interesting (like me!) and then look at who they follow.  You’re likely to find plenty of interesting people in their list.  Like I said, you never have to say a word, so don’t feel any pressure to say anything.  Still, don’t be afraid, if you have something interesting to say, say it!

Like with your RSS reader, you’ll quickly find that when you turn on your computer there’s a lively conversation going on that you can dip into at your leisure.  You’re very likely to learn something interesting, think about something important in a way you’ve never done before, or even get annoyed.

It might just be enough make you take some more advanced social media steps.  I’ll cover those in another post.

Meanwhile, enough – go get an RSS reader, a LinkedIn profile and a Twitter account!

Yesterday, the Senate yesterday rejected the so-called “doc fix.”   This means that doctors taking Medicare patients will now get 21% less pay for their work.

How’s that getting involved in politics working out for you guys?

Not so good.

But there’s a larger issue here.  Why do we keep trying to control health care costs by just mandating that less money be spent?

It’s failed for decades.  But like a losing gambler that is convinced that if he just keeps doubling down, he’ll finally come out ahead, people keep trying.  For example, the New York Times reported on a study of the impact of pay cuts to doctors for Medicare patients with lung cancer.

The unexpected result, according to one of the authors:  “Hospitals and doctors [] respond to changes in how they are paid.”  (Really?) In this case, doctors ended up treating more patients to make up for lost income.  Other doctors who didn’t want to increase their case load just decided to leave practice entirely.

As another of the doctors who wrote the study said, when you “squeeze” the system, there is a lot of change, “but not always the one you expect.”

So, why do we keep trying to “squeeze” the system?  It doesn’t work, and has all kinds of bad unintended consequences.  The majority of doctor visits have face-to-face time with the doctor of 15 minutes or less.  A fast-growing body of research shows that the time squeeze on doctors has a serious impact on quality.  Some studies show that 20% of patients get with the wrong diagnosis.  The leading cause?  The mental mistakes people make when they have to make hard decisions with not enough time and not enough information.

Instead of asking where can we cut, we should be asking more important questions.

Things like, how well can a doctor do his job if he goes from seeing 100 patients a week to 150?  How is the quality of care affected if experienced doctors find it better to stop practicing?  What happens if smart young people decide that medicine isn’t an appealing profession anymore?  And, most importantly, how much more expensive is our health care system going to be if we have increasing problems with the quality of care?

So, here is a radical idea:  instead of trying to figure out ways to cut health care costs, let’s think about how to make sure the money we are spending on health care is spent correctly.

Over the next 10 years America is going to spend $30 trillion on health care.  The real challenge is to make sure we spend that $30 trillion wisely.  It needs to be spent to make sure each person has the right care.  If we do this, we will look at health care differently.  We would ask – are there enough doctors?  Do they have enough time to make good decisions?  Are they making the right decisions?  Are patients getting the right care?

There are many people laboring to bring these issues into focus.  Patients, doctors, scientists, hospitals, employers.  But there remains much work to do, and doctors are critical to making this happen.

So, doctors, please, instead of trying to fight losing battles over Medicare reimbursements, fight for a real “doc fix.”  Fight to make sure that the the relationship between you and your patient is at the core of our health care system.  Fight for the ideal that whether each patient gets the right care is the only way to measure whether our system is truly any good.

UPDATE: At the always-interesting ACP Advocate Blog, Bob Doherty notes that the Congress is in the process of fixing this 21% cut in reimbursement (well, as Bob notes, sort of).  It’s worth reading the whole thing because he gives typically excellent insights into how hard it can be to square medicine and politics.