Video of our Connected Health presentation is up

I've uploaded the video of my presentation last month with my primary care doctor, Danny Sands. I added it to my original post about the conference, here.

It's a 55 minute talk, broken into six easy-to-eat segments. :)

More on statistics: deadly omissions, deadly conflicts

It appears that my inquiry into statistics, which I started here and cross-posted onto the e-patients blog, has started something of a storm. I am amused and pleased - after all, the only thing I ever really wanted to do was turn the world upside down, and this is as good a start as any.

(Okay, any of you who think "That doesn't sound very modest, deB," give it up. This is MY blog, and I'm happy to have started something that I think is productive. :))

Here's how the blogosphere works.

First, I wrote about evidence-based medicine, just because I'd been mulling the subject after reading Anticancer. Then John Grohol, one of the e-patients.net authors, sent me a paper, which I wrote about here.

I cross-posted it on the e-patient blog. The timing was great, because that morning the NY Times piece came out, misreporting the new evidence on statins. (Note: I'm not saying they made false statements - I'm saying they didn't give us the info we need.)

The comments on that post led Dr. Ted Eytan to point out a great web site that evaluates the quality of health news reporting, HealthNewsReview.org. Here is their comment on the reporting (in the LA Times) on the statins story.

Gilles Frydman, founder of ACOR, dug into it and wrote Lies, Damn Lies And Statistics: Collective Statistical Illiteracy. (He did some digging and found that the first known publication of that expression was in reference to medical research!)

The Psych Central blog picked up Gilles's post.

Gilles continued Thursday, partially inspired by the issues raised by HealthNewsReview, and wrote the slash-and-burn What's wrong with this picture? He pastes in the conflict of interest fine print that appears at the end of the article: 345 words of disclosures about how the article's authors receive funds from the makers the medications described in the article. And the disclosure then ends with the delightful phrase: "No other potential conflict of interest relevant to this article was reported." [Emphasis added.]

And this was no tabloid rag - this is in the New England Journal of Medicine, one of the most respected journals in the world.

What would you think about news reporting by writers who are literally being paid by the people they're reporting on?

I think I'm going to make a point of keeping an eye on HealthNewsReview, and maybe start bitching at the NY Times when I spot them omitting vital information like that.

Anyway: in the comments on that post, Sarah Greene, who recently left the NY Times online health department, speaks from the perspective of someone who's been on the inside of a big modern news organization. In her comment she remarks, "More to the point, patients don’t get to wear that E-badge if they aren’t first Educated to understand Evidence."

She adds, "my shock-disbelief-sadness centers on the media. Can journalists be held accountable at a time when news organizations are pushing for more & faster & shorter, coupled with desperation for digital advertising dollars?"

All in all, I agree with Sarah's remark that it's up to you and me to dig into the numbers when a treatment is recommended. As Making Sense says, if we don't know the actual numbers, the whole concept of "informed consent" doesn't work.

And, sadly, a new contributor, Karen Vaughan, speaks up from the diabetes community and highlights something I hadn't noticed: "About 20% more people got diabetes in the drug group. For every life 'saved' by the drug, someone else got diabetes. Factor that into the 'costs' of the drug." That issue too is reported in Making Sense: every treatment (or decision not to treat) has side effects, and no informed choice is possible unless all that is laid out.

Vaughan answers the balance question, concluding: "If a person took a 30 minute walk per day they would have better results without the side effects or costs."

Wouldn't you think those alternatives should be laid out for our consideration in a journal that purports to inform the medical trade about how best to achieve health? I don't mind reporting on new medications, but simple decent scientific method requires documenting all the known, relevant pro's and cons.

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!