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.

There is an endless list of bad things about being sick.  What I want to talk about for a minute is what happens to the relationships you have with people around you when you become ill.

Let me tell you about a man I know.   I will call him Bill, even though that’s not his real name.

Bill is a vital man in his 60s with two grown daughters.  A few years ago, he was diagnosed with a serious illness.  His illness isn’t going to kill him right away, but it has profoundly affected his ability to work and enjoy all the things he used to enjoy.  Worse, he has had a difficult time with his doctors figuring out what exactly is wrong and the best way to proceed.

But all of this isn’t really the hardest part for Bill.

The hard part for Bill is how his friends and family have reacted.  Bill’s two daughters have handled his illness in two different ways.  Although she’s not a doctor, his older daughter has been doing everything she can to help her dad make sense of his problem and figure out the right things to do.  Bill’s other daughter is a different story.  She seems unable to come to terms with her father’s illness, and so has been almost entirely absent from his care.

Bill’s friends have had varied reactions, too.  A few have been like his oldest daughter.  Others have almost entirely disappeared.  One of the people he thought was his closest friend stopped talking to him not long after he was diagnosed.  Another, in the course of a conversation about his illness told him to stop being so self-absorbed.  “I’m not sure what happened,” Bill told me.

It’s hard to be judgmental about people’s reactions.  Everyone handles issues around death and serious illness differently.  Who knows what baggage each of these people who have abandoned Bill carry around with them that caused them to react that way?

Still, the people who have stood by Bill also carry baggage with them — but are able to put it aside in order to help their friend.  To me, the ability to do this is what defines character.

And so if you get sick, you’re going to find out a lot about the character of the people around you.  The family members and friends who you thought were there for you unconditionally may not be.  Then what?

Well, it’s part of a larger point.

If you get sick, no matter who you have around you, you need to realize that you are the one who has the most at stake.  That you’re the one who cares the most about whether you’re being seen by the right doctors, that all of your questions are being answered, and that your personal and emotional needs as a human being are being tended to.  You can hope that the people around you will step up and do their part, but you should plan for the possibility that they won’t, and be prepared to be your own best advocate, and your own best friend.

I think it’s the kind of advice Bill would give you.

The President is out on the road promoting (again) the health care reform plan passed by Congress a few months ago.

Now that it’s been a few months, we can step back and ask: what really happened?

The short answer: on the big issues, not very much.

For those who hoped (or worried) the reform plan was a government take over of American health care, it’s not.

For those who worried (or hoped) the plan would create new competition in the health insurance market, it won’t.

For those who hoped (or worried) it would reduce the cost of health care, it won’t do much.

For those who hoped it would finally end the problem of the uninsured, it won’t.

So what will it do?

You could create a giant laundry list of the many, many different things tucked away in the reform law (here’s a good resource for that).  But this really isn’t the point.

A couple of months ago I was at one of those closed-door conferences where major employers talk about what they really think about health care.  One of the speakers was an old-time Washington health care policy hand, having been closely involved health care reform since the Nixon Administration.  His view?  Reform is a giant laundry list because that’s how we “do” big important things in the United States.  Congress and the President try to take advantage of any running room they have to pass a law, and, knowing that the moment will pass, try to put in as much as they possibly can.  Of course, part of this process leads to conflicting strategies, watered-down changes, gaps in policy and a built-in process of decades of regulatory interpretation.

Look, for example, at ERISA.  First passed in 1974 to address problems in the market for employee benefits and pensions, the law continues to this very day – nearly 40 years later – to be the subject of significant interpretation, reinterpretation and amendment.  Over time, it’s become part of the ordinary fabric of American life, even if there are few people who remember why it was passed in the first place, or what controversy there were around it those decades ago.

It’s like this with the the health care reform law.  It will be the source of controversy and interpretations for the next several decades.  Is it smart for the President to promote the law as solving big problems when in fact it’s just part of the beginning of a decades-long process?  I’ll defer to his political judgment.

But what I can say for sure is this, as I noted way back last year:

It’s reform, American style.

Some things are just part of the problem in health care.  The company “Medical Justice” is one such thing.  I’ve written about them before.

Medical Justice sees the medical malpractice crisis and devised a solution: muzzle the patients.

It’s as misguided as it is ridiculous.

Medical Justice says doctors need to stop their patients from saying bad things about them.  They charge doctors hundreds — or even thousands of dollars a year — to help do this.

Under one of their programs, they give doctors contracts to use with their patients.  The doctor tells the patient that they must agree to the terms of the contract before the doctor agrees to see them.   Ok, so there are lots of forms that patients need to sign when they go to the doctor.  What makes these so different?

Well, with these, the patient has to agree that they will not make anonymous comments on the web about the doctor.  They also have to agree that if they do make comments that aren’t anonymous they will only do it on sites that meet some “minimum standards of credibility.”  If a patient does these things anyway, they’ve broken the agreement and are now subject to being sued by the doctor.

At least one source reports that Medical Justice has another feature in its agreements:  making patients transfer their copyright over these web postings.  That way, the doctor can then send a DMCA takedown notice and have the criticism removed from the web right away.

It’s quite a modern spin on bedside manner.

Think about what it would be like to be presented with these agreements at the doctor’s office.

You’re there, sick, trying to get help.  But instead of helping you in your time of need, your doctor’s first priority is making sure you don’t say anything on the web about what he does.  Well, unless he likes it.  As a patient, the first thing I would think is, “should I be worried about this guy?”

And this is why what Medical Justice does makes things worse.

Patients are vulnerable, needing help, and looking to their doctor as that one source of certainty in a frightening world.  Patients want to feel that the most important person in the doctor-patient relationship is them, the patient.  But by starting off the relationship with contracts like these what the doctor is clearly saying to the patient is, no, I’m the most important person in this relationship.  It disparages and undermines that sacred relationship between doctor and patient by treating it something like buying a used car.

There are patients who will follow their doctor into the grave if they trust them.  And there are patients who won’t take the best advice in the world from a doctor who they don’t trust.  Doctors who use Medical Justice must realize they are sowing the seeds of distrust.

I was interviewed today by Employee Benefit Adviser, one of the leading publications in the employee benefits market.  I spoke with EBA’s Editor in Chief, John Ortman about trends in the health care market, problems with the quality of health care around the world, and, of course, Best Doctors.

The podcast is here.

Like Ezra Klein, smart people keep saying foolish things about the health insurance business.  This time it’s a pair of bloggers talking about the largest expense that health insurers face: their “medical loss ratio.”

According to Richard Dale at the Venture Cyclist:

[W]hy do they call it Medical Loss Ratio? Why is looking after me (or you) called “Medical Loss”, when the whole point of a health care system is to look after me (or you)?

Sigh.

Alan Katz, one of the leading health insurance bloggers, surprisingly links to this with approval, saying “words matter.”

The problem: the word “loss” is probably one of the four oldest words in the insurance industry.  I’d say the others are probably “premium,” “commission,” and “profit.”

Should we start outlawing these words, too?

Let me answer Richard’s question:

The word “loss” in insurance dates back at least to the 17th century, when the first maritime insurance contracts started being underwritten at Lloyd’s Coffee House in London.  A “loss” refers to the cost to an insurer when the insured event takes place.

Imagine I insure a ship that’s crossing the Atlantic.  If it sinks, my “loss” is the cost of the ship.  If I sell home insurance and a tree falls on the roof of the house, my “loss” is what it takes to fix the roof.  And if I insure someone’s health, my “loss” is how much money I pay if the person gets sick.

“Loss,” then, is just the word used to describe these kinds of costs.  Insurers have all kinds of other expenses, and so they differentiate the costs of paying for the sunken ship from the costs of their offices and salaries and other things in this way.

Now, they need separate out their expenses like this this for a number of reasons.

The most important is that how many dollars they spend on paying for insured events is critical for calculating how much they have to charge for coverage.  The ways insurers do this is by calculating – and paying very close attention to – their “loss ratio.”  That’s the the quotient you get when you divide these costs by the amount of premium collected.  In health care you often hear this called “medical loss ratio,” but you just as often hear it called just “loss ratio” or “loss experience.”

So are Richard and Alan right that these words don’t make sense since “the whole point of a health care system is to take care of you (or me)?”  Put differently, is there something sinister in the use of the words “medical loss ratio”?

Of course not.  No matter how you organize a health care system, someone, somewhere, is going to have to pay attention to how much money it costs when someone gets sick. If those people come from the insurance industry, the accounting business, or from the government, they’re going to call those costs “medical losses.”  The term isn’t meant to convey any idea beyond that.

We could, of course, decide to call medical losses something different, but it wouldn’t make a whit of difference as to what they actually are.

What’s in a name? That which we call a rose by any other name would smell as sweet.

UPDATE: For a smart take on medical loss ratios, read David Williams’ latest post at the Health Business Blog.