Sled hockey

If you believe in empowerment and making the most of life, no matter what you've got and regardless of what you don't have, you'll be inspired by this.


A tip of the hat to my cousin Chris McCulloh, who's making his way back from a spinal cord injury and recently discovered this sport. He blogs periodically.

I vividly recall how I felt when I was making my way through life during my medical challenges last year. They were challenges, but they didn't stop me from walking or driving or working as much as I could. I doubt that I would have played sled hockey, but then that's probably because I never played hockey before. :)

Making Sense of Health Statistics, part 2

Well, wouldn't you know it??

A perfect example of Saturday's post just arose: Today’s NY Times discusses a “large new study” of Crestor, a statin, involving 17,800 patients. Well, let's take what we learned the other day.

The Times editorial reports that Crestor has dramatic benefits - 54% fewer heart attacks, etc. And the writer correctly asks, “Who should take statins?”

But these “relative risk reduction” numbers (percent reduction) are exactly what Making Sense warns against: what are the raw numbers? We don't know, so from what they wrote, we can't tell whether there's improvement for one person in five or one person in 5,000.

This is not to say we shouldn’t use statins. The whole point is that the Times piece doesn’t give us enough information to know.

And Making Sense argues that without such information, the whole concept of informed consent is a fiction.

Making Sense of Health Statistics

John Grohol, Psy.D., is founder and publisher of PsychCentral, a pioneering community of e-patients. After he read my post the other day about evidence-based medicine, he sent me a paper worth reading: Helping Doctors and Patients Make Sense of Health Statistics.

This is relevant to the e-patient movement because as you and I become more responsible for our own healthcare, we need to be clearer about what we're reading. Plus, it appears we could be more vigilant about what our own professional policymakers are thinking.

The paper is 44 pages, but even the first few will open your eyes to how statistically illiterate most of us are - and that includes MDs.

Consider this question, which was given to 160 gynecologists:

Assume the following information about the women in a region:

• The probability that a woman has breast cancer is 1%
• If a woman has breast cancer, the probability that she tests positive is 90%
• If a woman does not have breast cancer, the probability that she nevertheless tests positive is 9% (false-positive rate)

A woman tests positive. She wants to know whether that means that she has breast cancer for sure, or what the chances are. What is the best answer?

1. The probability that she has breast cancer is about 81%.
2. Out of 10 women with a positive mammogram, about 9 have breast cancer.
3. Out of 10 women with a positive mammogram, about 1 has breast cancer.
4. The probability that she has breast cancer is about 1%.

21% of them got the right answer (#3, 1 chance in 10). 60% guessed way too high, the other 19% guessed #4. (That's 10 times too low).

The paper presents numerous other examples of statistical illiteracy (an example of "innumeracy"), misunderstandings of data that lead to serious unintended policy consequences. My personal favorite is the opening item about Rudy Giuliani's assertion that he's lucky to have gotten prostate cancer here instead of under the UK's "socialized" medical system. It's not because I don't like Giuliani - it's that his own misunderstanding of the data he was quoting led him to advocate something that had nothing to do with his actual odds. He himself would have been harmed if he'd been guided by his own best advice. And he's not alone in that.

The paper proposes uncomplicated ways to improve our comprehension. First among them is to stop talking in percentages and talk instead in raw numbers. Phrased that way, the same three facts that were given to the gynecologists is much clearer:

• Ten out of every 1,000 women have breast cancer
• Of these ten women with breast cancer, 9 test positive
• Of the 990 without breast cancer, 89 nevertheless test positive.

With this view, 87% got it right. (Of the 98 women who tested positive, only 9 actually have cancer: about 1 in 10.)

Another example echoed what The End of Medicine said about Lipitor. (Without Lipitor, 1.5% of the control group had a coronary event; with Lipitor, about 1% still had one.) A 1995 alert in the UK warned that certain oral contraceptives doubled the risk of blood clots in the lung or leg. Understandably, many women stopped taking the pill; within three years, 13,000 more abortions were performed, reversing five years of decline, and there was a matching increase in live births.

What was the risk that led to this? In raw numbers, one woman in 7,000 has such a blood clot anyway; with this pill, one more blood clot happened.

The irony in this case is that both abortion and childbirth carry more risk of clots than the pill itself. In other words, one benefit of the pill is that it avoids the risk of clots associated with the end of any pregnancy.

So although the number presented ("double the risk") was absolutely accurate, the real clinical impact wasn't nearly as absolute.

This is a taste of what's in the first few pages. It gets dry in places but even the first few pages are compelling and informative - and at no point does it require that you be a mathematician. The explanation of Giuliani's error is particularly good.

Thanks to the good Doctor John for the link.

Continued in part 2

Evidence-based medicine

On the fringes of medical knowledge, lives are at stake and medicine doesn't have the answers yet. What do you do?

As I've recently studied the nature of healthcare today, one thing I've learned about is evidence-based medicine. It's a discipline whose intent, at least in part, is to correct what you might call "medical superstition" - overprescribing certain treatments for no reason other than an individual doctor's preferences or superstitions.

Excellent researchers, now at Dartmouth, discovered widely varying practices, such as a fourfold difference in rate of certain surgeries (from tonsillectomies to hysterectomies) in some regions, even after correcting for differences in population. The discipline of evidence-based medicine is to prescribe treatments based on evidence that they make a difference, not based on local doctors' personal favorites.

What I'm also learning, though, is that the discipline has shortcomings. For one thing, not all evidence of effectiveness means something should be prescribed a lot. The End of Medicine cites Lipitor, the cholesterol drug (a "statin"). We spend $25 billion a year on statins. There's statistically significant evidence that it helps - a 35% reduction in coronary events. But that same evidence, if examined closely, shows that it only makes a difference for 0.5% of the population.

Specifically: 1.59% of the placebo group had a coronary event, but 1.03% of those who got a statin had one anyway. (n=19,243. Study=ASCOT-LLA.)

Looked at a different way: if you're over 60 with cholesterol over 240, you have a 51% chance of coronary disease sometime before you die. But 49% still don't. Which group are you in? Nobody knows: we're at the fringes of knowledge.

This reminds me of the situation with my cancer treatment, high dosage Interleukin-2 (HDIL-2). Depending on which study you read, it only works on 7%, 13%, or 20% of patients. At my hospital it works on 20%, and my team said that's largely because they've gotten better at predicting who it won't work on, so they don't even try. But still, only one in five responds.

End says we spend $25 billion a year on statins; this 2005 article says 12 million of us are on Lipitor, not to mention other statins. The 35% decrease is enough to make it justifiable to insurance companies and doctors. Think what else we could do with $25 billion a year.

Another limitation of evidence-based medicine is that if it's used as the gating criterion for using a treatment, it blocks many things that could be useful if you're in need now, and the firm evidence you need now has not yet been developed - or has been developed, and hasn' t been published yet. (See "the lethal lag time" in Chapter 5 of the e-patients white paper.)

Or it's been published and your doctor hasn't seen it yet. (Tens of thousands of peer-reviewed studies are published every year. Who can keep up?)

This comes up time after time in the book Anticancer, which I mentioned the other day. Sample quote from a woman at a breast cancer conference: "If we wait for you epidemiologists to decide what's what, we'll all be dead! We need to make our choices now."

This is not to say that evidence-based medicine is wrong. It's a valid method, but it needs to be understood for what it is, not swallowed blindly.

Runnymede: the outcome

A few weeks ago I wrote Runnymede, about my colonoscopy prep. Amusingly, I received far more expressions of support offline than I got online - I have shy fans! But it's all good.

I thought you'd like to know that I've received the formal report in the mail, and it includes a delightful phrase, which I hope is in your future too:

Colonic mucosa: unremarkable.

Almost poetry, isn't.

Go thou and do likewise.

Best Care Anywhere, part 5: "patient for life"

I started this series a month ago. The most recent post, about the "Hard Hat" code hackers, was here. I finished the book two weeks ago, and on Monday 10/27 I met the author. It's a short, easy read, packed with information and well written - and a great story. I've had a busy two weeks (more on that later)

On the e-patient blog there's a discussion about referrals and second opinions and the difficulties they cause. A whole bunch of patients are really irked at how they're being treated, and I think this is a good thing; I think in the coming year or two we'll see an eruption of people saying how poorly the system works, which could be the start of a long-overdue revolution.

The discussion led me to add a comment based on something important that I found in the book. For your consideration:

-----------
Christine,

I think the time has come to shift the focus for a moment.

A couple of weeks ago I spoke at a dinner along with Phillip Longman, author of Best Care Anywhere: Why VA Health Care Is Better Than Yours. It's a gripping story spanning thirty years, in a book that's just 136 pages long and could be read on a Saturday. I've been "synposizing" it on my blog, starting here.

There are many factors in the VA's success in quality measures and patient safety, but a central one is that they had a patient for life, so there was every incentive for early detection and no incentive to hope the problem would move to a different insurer. So the VA got very good at it, resulting in far less critical care, more effective automation, fewer errors and better care.

I say "had" a patient for life because under the Bush administration, for some insane reason, they changed that rule, totally dissing our veterans by making them prove a problem was service-related.

One might think this was to cut government costs, but the insane thing is that veterans in this bind are then forced to move to Medicare (private medicine), where care is worse and government costs are higher!

The inevitable result is a lengthy appeals process and lawsuits as veterans try to get their case covered, further increasing costs and stressing the veterans and their families. Insane.

Anyway: if our insurers "had us for life," I think they might have greater interest in catching things early and being sure they had the right diagnosis in the first place.
-----------

Thoughts, anyone?

Chocolate Therapy!

I'm not making this up.

My wife steered me to this wonderful new book, Anticancer: A New Way of Life by Dr. David Servan-Schreiber of Carnegie-Mellon University. (He also happens to be founder of the US branch of Medecins Sans Frontiers (Doctors Without Borders).)

He's an MD who had a real bummer one night in the lab. To run a test, he stuck himself in the MRI, and sorta kinda got a rude surprise: glioblastoma in his skull.

He beat it (with surgery and chemo) and figured it proved he was invincible. In 5 years it came back. He beat it again, but this time he decided to look for protection that goes beyond what his medical peers had been telling him.

He found a terrific amount of decently done research about stuff that interferes with tumor growth, or a least doesn't encourage growth, as much of our common diet does. (I'm not talking about la-la stuff, like the person who told me last May that all I needed was properly ionized water. I'm talking about solid biological stuff.)

I hope to write more about several mind-benders from the book, but here's my current favorite: dark chocolate is an anticancer food.

Not milk chocolate, not white chocolate, just dark chocolate, at least 70% cacao. Here's the American Cancer Society page on it (very non-technical).

Yes, friends, "chocolate therapy" isn't just a chick-flick thing. So when I was in San Francisco last week I walked into a Ghirardelli Chocolate store and tanked up: they had a Buy 4 Bars, Get One Free sale.

Funny how rapidly 5 big bars of chocolate can disappear, though.

Now to see if I can submit it to my Section 125 Health Spending Account...

(The other new favorites I've gotten from the book are green tea (green as in unfermented), turmeric, and fresh berries. Oh, and fish and margarine and eggs with omega-3's, not omega-6. These are all things I've heard people jabber about for ages, but somehow until this book, it never sank in that I could influence my odds by eating these things. MUCH simpler than Interleukin.)

PT equipment for tall people?

In May and August I wrote about my cousin Chris McCulloh in New York, who experienced a severe spinal chord injury in January. Today he posted a phenomenal, inspiring update.  I encourage you to read it here.

In it, he says the hospital discovered they don't have a walker on hand that's big enough for him. (He's 6'4".) I was about to start a crusade, then I read on, and learned there's one on the way.

What, having him there for 9 months hasn't given them enough notice? Oy. :)

Anyway, my face broke into a big grin when I read about his new extracurricular activity. Ah, the human spirit:  Some people just don't know how to be incapacitated!

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...