Dr. Dan and I speak at Connected Health

Videos added 11/23/08, slides added 11/25/08. Original post (text only) is at bottom, posted 10/29/08.

The talk was 55 minutes long. There are six clips, because YouTube's limit is 10 minutes per clip. The slides aren't legible in the video, so I added them below the last clip.


Part 1: Reconnecting and Agenda Setting




Part 2: Discovery and Diagnosis




Part 3: How We Used e-Tools




Part 4: Outcome and Insights




Part 5: Audience Discussion




Part 6: The e-Patient Perspective




The slides: (click the slide-screen icon at bottom right to go full screen, again to restore view)

Illness in the Age of \'e\'

View SlideShare presentation or Upload your own. (tags: ehealth 2.0)

Original text post:

As regular readers know, yesterday [10/28/08] was the long-awaited day when my doctor (Danny Sands) and I spoke at the Sixth Annual Connected Health Symposium, a two-day event at Harvard Medical School. We presented "Illness in the Age of 'e'," the story of how we used Internet technology (and e-patient principles) to improve how things went during my cancer adventure last year.

At dinner the night before I was privileged to sit next to Matthew Holt, famed author of The Health Care Blog, the world's most-read healthcare blog (80,000 readers). He's also the honcho of the Health 2.0 conference, a huge annual event on the west coast.

Matthew attended our session Tuesday, and before boarding the plane, what was the only session he blogged about? John Kerry's keynote Monday? Regina Herzlinger's featured address? No, he wrote about the Dave & Danny show.

Of course, for me this is huge fun. But I'm also very moved by the idea that the principles we're working for in the e-patient group are starting to get some big-time visibility.

Matthew's brief post is here. More to come, he says.

"Half of doctors routinely prescribe placebos"

Before you jump to conclusions, see what this is about. This is "placebo" (Latin for "I believe") in its strict sense. From the NY Times:

Half of all American doctors responding to a nationwide survey say they regularly prescribe placebos to patients. The results trouble medical ethicists, who say more research is needed to determine whether doctors must deceive patients in order for placebos to work.

The study involved 679 internists and rheumatologists chosen randomly from a national list of such doctors. In response to three questions included as part of the larger survey, about half reported recommending placebos regularly. Surveys in Denmark, Israel, Britain, Sweden and New Zealand have found similar results.

The most common placebos the American doctors reported using were headache pills and vitamins, but a significant number also reported prescribing antibiotics and sedatives. Although these drugs, contrary to the usual definition of placebos, are not inert, doctors reported using them for their effect on patients’ psyches, not their bodies.

In most cases, doctors who recommended placebos described them to patients as “a medicine not typically used for your condition but might benefit you,” the survey found. Only 5 percent described the treatment to patients as “a placebo.”

(Full story, again: From the NY Times)

I have a couple of thoughts.

Some people might react with alarm or outrage. (I imagine this might end up on the Most Emailed list.) The headline's misleading, actually, because for me anyway, it creates (at least for a moment) a sense that half of all doctors don't actually do anything meaningful, or trick us, or prescribing useless sugar pills (the common definition of placebo). A better headline might have been "Placebos widely used around the world."

More, though, I'm reminded of the medical value of one's attitude and beliefs. Placebos do produce some benefit, very often; that's why when any medication is tested, it must be compared against a placebo, to try to distinguish between "any unknown pill" and that specific medicine.

There's also the "white coat" effect, in which patients feel better when they've been through what feels like "getting help."

US healthcare reformers often talk about differences between the US system and other nations. What I hear in this store is that there's a global recognition among doctors (even if it's unspoken) that a patient's psyche can be a potent force in their well-being.

Worked for me...

Important: All MRIs are not created equal

The e-patient blog has a potent new author, Christine Gray. She initially described the near-fatal errors in her daughter's treatment here. Now she's posted something that's important for everyone to understand before they need diagnostic imaging: All MRIs are not created equal.

Without a doubt, when your turn comes you will be encouraged to use whatever scanner happens to be in your hospital's building or whichever one they use. It will be very hard to get anyone to tell you where there might be better facilities.

From the original article that Christine cites:

I asked Dr. Kennedy the same question and received the same answer. He explained that in my case the quality of the two images was vastly different. “It’s like the difference between a black-and-white TV and HDTV,” he said.

All well and good, but how was I supposed to know? The radiology center I first went to is accredited by the American College of Radiology, and there is no way I can tell a good M.R.I. image from a bad one. In fact, I never even saw the images. All I saw were the radiologists’ reports.

I'm class secretary for my college class. Last year a classmate wrote that she'd had an extremely awkward growth in her inner ear, and the first images they saw were not sharp enough. She badgered her way to a top academic medical center at Stanford where they had a scanner with three times the power, and the image was crystal clear. She herself used the black-and-white vs HDTV analogy.

What I don't know, at this point, is what to do about this. Wouldn't it be good to have accurate public ratings of the best and more mediocre places, rated by the people quoted in that article?

Runnymede

I’m initially writing this as a simple opening statement, for the benefit of those who’d really rather not read the rest. (Some of my subscribers get an email copy of every post the moment I write it, and I’d rather not dump (so to speak) this subject in their mailbox involuntarily.)

So, the full text of this post will only be online, not in email.

The subject is that, being over 50, I’m preparing for a colonoscopy tomorrow. Dave Barry has written about this process (see below), so I’m not the first, but I’d like to add to those who are demystifying it. The very idea makes a lot of people cringe and hide, and having had one a few years ago, I can attest that it’s really not that bad, and can be the source of much merriment, if you have the right attitude. Which I do.

But if you read the rest of this, you gotta be willing to be playful about the subject matter.

I’ve started the prep process, and by this evening I’ll have posted the story.

(If you're curious about the title of this post, that too will be revealed later.)

3:15 p.m. update

If you don’t know what a colonoscopy is, you can read about it here (Mayo Clinic) or here (Wikipedia). Or, if you’re like me, you’re much more interested in what Dave Barry had to say about it when his turn came last February, which began:

OK. You turned 50. You know you're supposed to get a colonoscopy. But you haven't. Here are your reasons:

1. You've been busy.

2. You don't have a history of cancer in your family.

3. You haven't noticed any problems.

4. You don't want a doctor to stick a tube 17,000 feet up your butt.

Let's examine these reasons one at a time. No, wait, let's not. Because you and I both know that the only real reason is No. 4. This is natural. The idea of having another human, even a medical human, becoming deeply involved in what is technically known as your ''behindular zone'' gives you the creeping willies.

Here’s something most people don’t know: Although colon cancer is the second most lethal cancer in the US (after lung cancer), it’s also really easy to detect. It’s one of the very few organs that can be checked for cancer using a camera,which is really handy, when you think about it. (No camera could have gone for a drive through my kidneys.)

All it requires is for the inside of the organ to be nice and clean. And that’s where the fun starts, because, well, normally it’s not.

A few days before the event they have you start on a modified diet, so by the day of the inspection, there’s no confusing residue in you. The modified diet isn’t bad; you just don’t eat things that could look like a suspicious growth: seeds, red Jell-O, etc.

The day before, you drink a bunch of stuff that causes your insides to completely empty within a few hours – with vigor. Dave Barry describes stuff called MoviPrep; I had a prescription for NuLytely. My experience wasn’t nearly as, um, explosive as he described, but I’ll agree that you don’t want to be far from the bathroom for the several hours that it takes.

Now, some people will make a grumbling misery out of this, but hell, if we can turn a near-fatal cancer into Laugh, Sing, and Eat Like a Pig, we can certainly be playful with this situation.

So instead of grumbling about running to the bathroom constantly, what the hell: I set up shop in there.

I’m sitting here with my laptop on a TV table, online via wireless Internet, with a 10 minute kitchen timer around my neck. Every ten minutes the timer goes off, I drink another glass of the stuff, reset the timer, and go back to my typing. And when I need to be on the john quickly, no problem: I already am.

(Now that I think of it, I can't think of a better way to do my weekly report for work. Oops, I hope they're not reading this.<wink>)

3:40 pm update

I should add that my primary physician, the terrific Dr. Danny Sands, shares my attitude. I’m going to violate doctor-patient confidentiality here and quote, with a little editorial liberty, an exchange we had yesterday in the otherwise-secure PatientSite email system, which he helped invent:

e-Patient Dave: It’s good to see that as my mind has become clearer lately, my memory’s become clearer too.

e-Patient Doctor: After you drink the NuLytely, that’s not all that'll be clear.

Running and Passing

And now we come to the humor – the running joke, you might say.

My wife Ginny is as much of a word brat as I am, always looking for any excuse to abuse some hapless word. So of course we couldn't just call the juice by its brand name.

I observed that although our hometown team the Patriots isn't playing today (they're on Monday Night Football this week), we'd have plenty of running anyway. "Passing, too," she said.

"When are you going to start the juice," she asked. "The diarrhetic?" I asked, abusing "diuretic," and added "They should call it Running Water."

And then it hit me: Runnymede. It's the place where King John signed the Magna Carta, and a perfect brand name for a drink (mead) that makes your honey runny.

(What comes to mind is that Mom taught us "If you're neckin' with your honey and your nose is kinda runny then you may think it's funny but it's snot.") (Might this have anything to do with my inherited word-brattiness?)

[btw – For me, NuLytely doesn't taste nearly as unpleasant as how Barry describes MoviPrep.]

4:55 pm update

Well, it's almost through (so to speak). The Runnymede has run its course, the outcome is clear, so it's time to move on.

As long as we're being candid, I might as well say the other thing that you have to deal with, other than your "behindular zone" concerns: you have to arrange for a driver, because you do get anesthetized. (See Dave Barry, again.)

Personally, I really enjoy being loopy, and I do get loopy when I get anesthetized! I well remember when I was 16 and a dentist put me under - Mom and I giggled a lot as I came out from under.

But yeah, it's not just your own time off work (why aren't these people open weekends???), it's your driver too.

But deal with it. Trust me, you'll have a lot more time off work (and so will your driver) if you end up with a cancer that you might have caught years earlier.

So be a grown-up, as Dave (and Dave) say. Once you're 50, do it - and have fun!

Over and, ahem, out.

See this update, with results, 11/11/08.

Best Care Anywhere, part 4 - the Hard Hats

Last time I finished recounting the "where we are today" stats, about how remarkably the VA has been outperforming other systems on measures of care quality and safety, all while maintaining costs. As I've continued reading I've been quite surprised at how they got there. It's not by any process anyone would design, and yet the methods have tremendous implications.

In the post-Vietnam years the VA health system was in lockjaw. The combination of politics and change-resistant bureaucrats made improvement all but impossible, just as predicted by the observers in the previous installment who felt any government operation was doomed to end up this way.

But for years, way under the radar, operating in basements (literally) and often going directly against orders from upstairs, a loose federation of geeks and medicos were hand-coding computer systems, largely out of self-defense - they were desperate to find ways to handle their impossible workload. They wrote programs that automated admissions and discharge, handled prescriptions electronically, maintained patient records to sniff out potential problems.

They wrote it all in open source: nobody owned the code, and anyone could check it for accuracy or contribute improvements. (For those who aren't familiar with the idea of Open Source software, which anyone can edit, try this: Wikipedia is an open source encyclopedia: anyone who knows how can go in and edit any page they want.) (Of course, someone else might edit it back. Such communities find ways of being civilized, and progress usually happens.)

Unlike today's sickening morass of systems that won't talk to each other, these people wrote programs specifically with the intent that the data should be shareable. Most important, since the programs were written solely to help the users (e.g. pharmacists), the only features that got programmed were ones that the users wanted, and the features worked the way the users wanted.

Mind you, this was before PCs. And to keep their work secret, these people, who came to be known as the Hard Hats, couldn't even write their software on computers - the requisitions would have been too conspicuous. So they often wrote their lines of code on primitive 1970s word processors, so there was no error-checking or system assistance at all. They'd type in the code and then carry the disks to a computer somewhere else, and only then find out if there was a typo or a logic error. (Writing software is much much easier today, but these guys did it blind.)

Management, the "high priests" of computers in those days, hated it. One of the Hard Hat leaders had his DEC (Digital Equipment Corp) computer piled with paper and set on fire; his car engine was rebuilt several times because someone repeatedly put sand or salt in the tank. Computers found to be used for this work were confiscated.

Meanwhile, in a great irony, the people who were squelching this competence-centered programming were incapable of getting anything done themselves, so the gulf between what worked and what was authorized grew wider and wider. In 1979 the VA's computer office removed more systems than it installed. (I had no idea this was going on!)

In 1981 it came to a head, when a broad rebellion arose, finally getting the attention of a top VA manager. Long story short, the situation was turned on its head: hundreds of high priests were fired and the Hard Hats were empowered. With the restraints removed, all the different disconnected programs the Hard Hats had written could be brought together into one big system - and the book says it took less than a week.

Most astounding of all, that combined system came to be called VistA - and it's still in use today. Where's the software anyone else was using in 1981?

---

What do we see here? I'll start, but I'd really like to hear what you see.

First: great systems are built specifically and only for the people who will use them. They're created by asking the users what they need, not by sitting in a conference room trying to anticipate what the user might like.

And the users are brought in early, to see the earliest prototype, which gets modified to work the way the user wants.

Second, extreme need can be a powerful creative force as resources become so overtaxed that people will do anything to relieve the pressure. If you look at how many boomers are about to enter the high-consumption phase of their healthcare "careers," you can read the handwriting on the wall.

Third, the advent of microcomputers and then PCs meant that power (computing power in this case, and power to create) got into the hands of the people, who could then do anything they wanted with that power. Look what happens when access to tools is unlocked, instead of being under centralized control.

It's power to the people, isn't it?

Here's something to think about. Today, with blogs, user forums, and all those other "Web 2.0" tools, we all have a shot at using unprecedented tools for finding, sharing, and publishing information. (Look what I'm doing right here, sharing what I see, and look what you're doing by reading it. This blog costs me nothing - you too.)

What else do you see in this story so far? What raises your eyebrows? What will you tell friends?

Final part in the series

"Medical home": where everybody knows your name

Originally titled "Dr. Ted on 'patient-centered medical home'"

Four weeks ago I posted about a wonderful development: "Patient Centered Medical Home" makes it into NEJM. Today Dr. Ted Eytan of www.TedEytan.com and newly of Kaiser-Permanente, left a comment:

Do you think the description in this article, and this one (on "the medical neighborhood") has enough information about involving patients? How would you advise this body to include them?

Rather than having that discussion get buried, I want to bring it up front.

The short answer is that those articles hardly say bupkus about patients themselves, but that's not what "patient-centered medical home" (PCMH) is about. It's about raising awareness that 40% of Americans don't HAVE a medical home.

When I first learned that last spring, from PCPCC's Paul Grundy (through my fabulous friend Leslie Harkins, who heard him talk), it stunned me. Heck, when I grew up, everyone had a family doctor who knew them. They don't anymore??, I thought.

No wonder, I thought, that PCPCC's data (from Dartmouth) showed such a strong correlation around the world between primary care and lower costs and good outcomes.

But for whatever reason, America's become increasingly focused on specialists, not primary care. And as that's happened, our costs have gone up and outcomes have declined. It's as if the whole system had started out with reliable, cost-effective Toyotas and gone backwards to costly rattletraps.

So I was really happy to see "PCMH" get its first bigtime publicity in a journal the establishment reads!

More about what's in those columns:

Early reports from focus groups suggest that the term "medical home" makes many consumers think of nursing homes, with all the unfortunate connotations.

Maybe they need a marketing consultant. 8^) Here's how I handle that when talking to people:

• "Home. Y'know, home? Like, the place where you always go?"
• "Like the Cheers song: 'Where everybody knows your name'."
• "Robert Frost: 'Home is where, when you have to go there, they have to take you in.'"

Well, okay, we're not yet to the third one - unless you're in the VA healthcare system, or some other countries. But if you've been reading what I'm posting about Best Care Anywhere, that fact may sound peculiarly interesting.

The first article does contain a mention of patients, which I hadn't noticed at first reading, regarding legislation to participate in a Federal demonstration program for PCMH:

These requirements stipulate that medical homes must have "an integrated, coherent, cross-discipline plan for ongoing medical care developed in partnership with patients and including all other physicians furnishing care to the patient involved and other appropriate medical personnel or agencies (such as home health agencies)." [Emphasis added]

Well that's a smart idea!

--- Hey, all you other patients - I know you're interested because you read my blog. :) Would YOU like to be involved in creation of this new system? Same for you healthcare workers - you know better than most people what we could create. Click the Comments link below. (Or if you're reading in email, come online and participate.)

Best Care Anywhere, part 3

Last time I said "Could it be that the principal principle at fault is the idea of letting people say 'Not me' to a part of the problem?" But it didn't quite sit right, and I just edited it to "letting care providers, or insurers, say 'Not me' to particular parts of the problem".

---

Chapter 1

When people read "veterans hospital" what comes to mind is the much-publicized stories of neglect. By the first Clinton administration conservatives pointed to them as proof positive that any move toward "socialized medicine" was doomed. Here's Jarret Wollstein on Hillary's plan, 1994:

"To see the future of health care in America for you and your children under Clinton's plan, just visit any VA hospital. You'll find filthy conditions, shortages of everything, and treatment bordering on barbarism."

Phillip Longman, author of this book, says he made the same argument in a book in the mid-90s. But then he says "Here's a curious fact: who do you think receives better health care? Medicare patients who are free to pick their own doctors and specialists? Or aging vets, stuck in those presumably filthy VA hospitals, with their antiquated equipment, uncaring administrators, and incompetent staff?"

The answer has emerged from serious research completed since 2000, and published in respected journals.

• NEJM* 2003: 11 quality measures compared veterans' facilities with fee-for-service Medicare. On all measures the VA was "significantly better."
• AIM* 2004: VA facilities were compared with commercial managed-care systems in care of diabetics. The VA provided better care on 7 out of 7 measures.
• In the same issue, a RAND Corp study said the VA outperforms everyone else in 294 measures of quality.
• A 2006 article in Medical Care compared life expectancy of elderly VA patients with those in Medicare Advantage. Death rates were significantly lower in the VA.
• The National Committee for Quality Assurance ranks health care plans on many performance measures, such as how well they manage high blood pressure and adhere to various best practices. Highest ranking system: Partners (Mass General)? Mayo? Johns Hopkins? No, the VA.
• In 2005 JAMA* called the VA system "a bright star in the constellation of safety practices."
  
• In 2001 a JAMA paper said the VA does a much better job than others of keeping African American patients alive.
  

Or heck, let's ask the patients, whose butts are on the line.

• Are patients clamoring to get out of the VA system? To the contrary - in 2006 the American Legion fought for a bill to let veterans trade in their Medicare benefits so they could get into the VA.
• For six straight years in surveys by the National Quality Research Center, the highest ratings went to the VA.
• One factor: the system runs well. 69% report being seen within 20 minutes of scheduled time, and 93% report being able to get to a specialist within 30 days of their requested date.
  

So, what's the deal here? What was Wollstein missing when he slurred the VA, ten years before those studies were done?

He might have a kneejerk pre-judgment against anything government - in 2006 he wrote Democracy vs Freedom, arguing that "to have a free and peaceful world ... the powers of government must be strictly limited." (I wonder what he'll think when his turn comes. Perhaps his understandable desire for freedom will lead him to want the freedom to get into the VA system.)

Anyway, doesn't this just make you itch to know what's going on here? It reminds me of how in the 1960s American auto executives testified before Congress, with great sincerity, about how it simply wasn't possible to make a more reliable car. Then along came Toyota.

Funny you should mention that, because the next thing Longman mentions does is call the VA "the Toyota of health care." (Toyota is known for its combination of reducing defects and controlling costs, by continuously and intentionally improving their processes, identifying and removing the sources of recurring problems.)

In 2006 Harvard's Kennedy School of Government cited the VA for innovation in government: "While the costs of healthcare continue to rise for most Americans, the VA is reducing costs and reducing errors, and becoming the model..." [emphasis added]

From 1995 to 2004 the US Medical Consumer Price Index rose 39.4%. At the VA it went up 0.8% - while producing all those quality results.

There's more, but you get the picture. Doesn't it just make ya itch to know how they do it? Don't you want your healthcare to work that well? There's something at stake here, isn't there?

Next: Part 4

*NEJM = New England Journal of Medicine; AIM = Annals of Internal Medicine; JAMA = Journal of the American Medical Association

Best Care Anywhere, part 2a

Updated 10/16... see italics: changed "letting people" to the more-specific "letting providers or insurers," which is much more on point.

In Part 2 I mentioned that one factor in the VA's results is that they're "stuck with" a patient for life. I meant it somewhat glibly, but later I realized I wrote about the same issue from a different angle way back in December, in one of my very first posts: For prettier statistics, omit inconvenient people. It's a long post, and something of a rant, but in short it says that a planner can come up with really nice pricing plans, etc, if you allow excluding the hard parts. I related examples from the health insurance industry from my own experience and friends'.

But isn't it ironic that when you're not allowed to exclude the tricky parts, costs can go down?

This is really interesting, because if you tug at any one part of the system, it seems like a morass (as I commented last week on e-patient). But it appears that if you insist on including the whole puzzle, it becomes solvable!

Preliminary wonderment: could it be that the principal principle (!) at fault is the idea of letting care providers, or insurers, say "Not me" to particular parts of the problem? I don't know. I don't believe in lots of legislative forcing, nor bureaucracy. But I know first-hand (as does the author of this book) that things have not been working out well in healthcare, left to the free market.

Next in the series

Best Care Anywhere, part 2

Part 1 ended with a snip from the introduction:

You don't even have to travel to some far-off foreign country like Sweden, or even Canada, to see it in operation. It's already up and running, right here in America.

Here are some results of this US-based healthcare wonder:

• Most of its doctors have faculty appointments with academic hospitals
• Two have won the Nobel Prize in medicine
• Its innovations include development of the CT scanner, the first artificial kidney, the cardiac pacemaker, the first successful liver transplant, the nicotine patch, and prosthetic devices including hydraulic knees and robotic arms
• Exceptional safety record (more on this later)
• Health promotion and wellness programs
• Pioneering and unparalleled adoption of electronic medical records (instead of the paper too often used by "modern" hospitals and doctors elsewhere)

Costly, eh? No: it's the only healthcare provider in the US where cost per patient has been level in recent years.

I haven't finished the book yet (I'm into chapter 2, and the above is all in the introduction) but so far it seems apparent that one substantial factor in this has been that this provider is "stuck" with the patient for life. (They get no benefit at all from postponing conditions.) It's not that simple, though - if dunderheads were stuck with you for life, they wouldn't necessarily be smart about it, and they certainly wouldn't have necessarily invented all that stuff above. Some smart people are at work here.

Next in the series

Grass roots candidate

Clearly not an establishment candidate. I had no idea! (This is not a YouTube video - it'll take you to another page. C'mon back!)

Human propulsion device for wheelchairs

How cool is this?
Manual Wheelchair Propulsion Developed And Launched In The UK

Man, do I wish I'd had that when I was in a chair!

From The Medical Quack's blog: "The best part about this is that NuDrive attaches in seconds to almost any manual wheelchair with 24inch imagemetal spoked wheels so there's no need to buy a new chair. It even has brakes and goes in reverse! I hope we see this here in the US before too long."

No kidding!

Highlighted in Best Care Anywhere - part 1

I'm reading Best Care Anywhere. This book is hot, and I want to share it with you, but I don't want to wait until it's finished. Also, sometimes when I think too much, I talk too much. So I'm going to try something new.

As I read, I'm highlighting like crazy. As I finish each chapter, I'm just going to post the highlighted parts.

Why is it hot? Because a lot of people I know are wandering around (figuratively) wondering what we can do to make healthcare better, and the US Veterans' Administration has been doing (for years) what I think everyone ought to be doing: taking a long-range view of the total patient, not a short-range view of "what costs will we approve and incur this quarter or this year?" When you look at it that way, a lot of other answers fall out pretty easily.

For instance years ago the VA pioneered e-prescribing, vastly reducing medication errors caused by handwriting; most hospitals don't have that yet. The VA invests in early detection, because unlike your average insurance company, they're responsible for that patient for the rest of his/her life. And so on.

This surprises a lot of people because we keep hearing scandals about VA hospital abuse. This will be covered in the notes. One thing to bear in mind: there's a difference between quality of care, and access to that care. Another: sometimes there have been political agendas involved. We'll get to that; for now, just listen for what works.

---

The author's perspective

The book grew out of an assignment by Fortune to document that government-administered healthcare would be a disaster. The author, a pro-market anti-government thinker, fully agreed. But there was a problem: a few years earlier his wife had been through a terminal cancer, and they'd witnessed all too clearly the inefficiencies and gross errors that are too common in US healthcare today ... and he didn't find that in the VA.

To the contrary, he found a system where they actively prioritize eliminating causes of errors, and they do it successfully. Although he expected to find that "socialized" (government-run) healthcare would be bloated and inefficient,

...as I started asking experts for suggestions about who was delivering the highest-quality, most cost-effective, innovative, and scientifically driven health care in America, I kept hearing an answer I could not believe. It contradicted all that I knew about health care and medical economics, indeed, about markets and governments in general. Yet these experts backed up their assertion by pointing me to study after study ... in prestigious, peer-reviewed journals.

And here's the punch line:

I knew the editors of Fortune would never feature it on their cover. And I was right. We agreed on a kill fee with no hard feelings. Business is business.

Ain't that grand? BUT: he pursued the subject, and wrote this book.

A solution to America's health care crisis does exist, I realized. Better than that, you don't have to rely on mere theoretical speculations or econometric simulations to see how it might work, nor do you have to wait around for a revolution in technology. You don't even have to travel to some far-off foreign country like Sweden, or even Canada, to see it in operation. It's already up and running, right here in America.

Stay tuned. (Or just buy the book - this one's worth the $10.17 at Amazon, and you can do your own highlighting.)

Continued in Part 2

What is Health 2.0?

Here's the definition I like:

Health 2.0 is participatory health care. The combination of content and community enables the patient to be an active partner in their own health care and the citizen to be an equal partner in improving the health system.

It's from the blog of Ted Eytan, a terrific MD who blogs about new healthcare methods from D.C.

Obnoxious ad against my hospital

A post on Paul Levy's blog about SEIU, a union I've mentioned before, led me to look into a new web site they've started, to slander Levy himself and the whole hospital.

As the post describes, they've put up signs at bus stops implying that the hospital is full of corruption and malfeasance, with a companion web site: "eyeonBI.org". I saw a "Share Your Story" link and went there to say how much I (and every employee I've spoken with) like the hospital, but look what I saw: (click to enlarge)



If you're not already familiar with this story, which has been going on for ages, it's summed up in the many comments on Paul's post.

Several months ago in a comment on a similar post I told an SEIU organizer "This gives organized labor a bad name. Why not go after some evil company??" And to me giving organized labor a bad name really is a problem. But, as shown in a link on Paul's post, it appears the union's leadership has ethical troubles of its own now:

The president of the Service Employees International Union said this week that he plans to consult with two labor reform groups in an effort to clean up his scandal-stained organization, beginning with a new ethics code and an internal watchdog commission.

But leaders of both groups said Wednesday that they were skeptical of Andy Stern's proposals.

"Why does he need a new code of ethics?" said Herman Benson, founder of the Assn. for Union Democracy. "People didn't know that what they were doing was wrong? It's preposterous."

New York Times special section on healthcare

From the e-patient blog Wednesday:

New York Times Health Section

The New York Times published an amazing array of health articles yesterday, each one of which is worthy of a discussion on this blog (and not just because we were mentioned in this one).

But I also want to take a minute to appreciate the entire online Health section of the Times, which consistently grabs my attention with its mix of articles, blogs, reference materials, and multimedia offerings. I love reading the comments appended to some of the articles and wish that more articles could turn into such forums. For example, the comments attached to You Can Find Dr. Right, With Some Effort are as useful and thought-provoking as the tips outlined in the article.

On a good blog, the comments are often as valuable as the post itself. (It's all about community, y'know.) A couple of comments on that post are thought-provoking, not the least of which is from Sarah Greene (manager of the Times online health presence).

The comment that really got me is from Christine Gray, a mother who experienced the rudest, most disempowering treatment by doctors who (she says) were annoyed that she wanted to see her daughter's lab tests, etc. Only when she got connected with a powerful peer patient community (on ACOR, where I found mine) did she learn that those same arrogant doctors had made several important mistakes, while belittling her.

You should go read Christine's comment. But in case you don't, I'll post my reply here, because something's starting to come clearly into focus for me: to a very large extent, healthcare delivery in America is a stinking mess. In this post I'm not talking about the financial aspect, or who has access to the best care - I'm talking about the simple ability to execute expected procedures competently.

Here's what I wrote:

Christine, thanks for your comment. The e-Patients White Paper e-Patients: How they can help us heal healthcare (PDF, wiki) details many such stories, but I'm frankly disheartened to hear that yours happened as recently as 2003.

As I talk with people involved in transformation of healthcare, and I raise various issues from that paper's research, I often hear "But we've already figured out how we're going to solve that one." Those people have surely never faced a loved one's medical crisis and experienced the consequence of the fact that it's not solved now. To the contrary, it's too often rigidly entrenched, as you describe.

Conversely, people not involved in transformation often don't want to hear the system's got problems - understandably. (It's like hearing your local fire department, whom you might need desperately one day, is a bunch of drunks.) In polite conversation we have a cultural taboo against saying anything like "These doctors blew it." Doing so often sounds like a kneejerk anti-establishment rant, or like the bozo who told me in May that "Chemo doesn't work. It's a fraud. All you need is ionized water." In the broad population, there is not much listening, yet, for open, transparent discussion of what works and what doesn't.

I myself only read that paper in January, and as time went by I saw that there were several kinds of e-patient stories, and I wrote about them. Many stories tell of doctors who are helpful and supportive of participatory medicine, and many more tell of doctors who are like the ones you describe.

What people don't realize is that today patients have access to far more power-bestowing information than we did 50-60 years ago. But even then, Dr. Spock was excoriated by many of his peers for telling mothers "you know more than you think you do." Clearly the doctors you faced still don't agree with Spock, a half century later.

As much as I love my hospital, they made some serious mistakes in my cancer case last year. After my nephrectomy the nursing team forgot to remove my catheter on the specified day (apparently that was important), and when I came back in for a follow-up urinalysis at a critical time a few days later (to see if my remaining kidney was working ok!), the lab simply lost my specimen. I couldn't just do another one; the moment had been lost. Yet the hospital had no process in place to make sure this potentially vital specimen wouldn't get lost.

We all need to be aware that healthcare in general is extremely (and I mean extremely) behind the times, compared to other modern enterprises. In a modern factory, things simply don't get lost the way they do in hospitals, and the reason is simply that not enough hospitals have thought out how to prevent the loss, or done anything about it.

To be sure, lots of good work is in process. But there's not nearly enough of it, and many facilities haven't even begun the process, and many more don't even agree there's work to be done.

Then we layer on top of that the attitudes of the subset of doctors who think they're godlike - again as detailed in many e-patient stories. Certainly not all of them are like that - mine last year were wonderful. But as Christine's story shows, there's way too much of it still out there. Is that who you want caring for you in your crisis?

I was fortunate to encounter one of those in my 20s - a guy who took offense at my asking if I'd get a scar from the procedure. I should have run, but I figured a doctor wouldn't be unprofessional, right? Well, he was - to remove a tiny basal cell on my nose, he decided to do a large crescent-shaped skin flap, and he never did come see me to discharge me - I had to check myself out. And within a year he'd skipped town.

I'm not disfigured from it but I learned my lesson: do not tolerate professionals who think we shouldn't be privy to our medical data, much less consider that we might have something to contribute. We do.

Many thanks to the Times for publicizing all these ways patient empowerment is happening.

Splitting this blog

Loyal readers have surely noted that this blog has wandered well afield of my "ePatient Dave" medical writings. Tonight, sitting home with a foggy headcold, I decided to use my diminished capacity to split the blog - to move the non-healthcare posts to a separate place.

So now I have two, and you can read whichever you want! There's this one, "The New Life of Patient Dave," and ... hm, what shall we call the other one? Dave's ImPatient Life. Yes, that will do nicely.

So far I haven't set up email subscriptions for it, but if you want, you can beg.

I may invite some guest authors over there. Fair warning; anything non-medical is fair game, and it's likely there will be some political content. (Oops, two such posts already.)