Sunday, November 30, 2008

Happy Birthday to this blog, part 4

Continued from part 3

The final quarter of my first year started with an unpleasant inquiry into something I think is one dirty little secret in our insurance-dominated healthcare system: the "MIB" is a databank run by the insurance industry, to protect it against fraud by you, but with no protection at all for you. This racket needs reform like the credit rating agencies needed reform, to level the playing field.

After my first post about it, to my amazement, an MIB employee contacted me, and in an extended email exchange, simply argued with me and wouldn't answer whether anyone is responsible for the accuracy of the information they have about you. You should request your free copy of your record.

9/5: What's in *your* MIB?, and part 2 (after the email exchange) on 9/27

9/18: "Patient Centered Medical Home" makes it into NEJM

10/2: New York Times special section on healthcare

"...something's starting to come clearly into focus for me: to a very large extent, healthcare delivery in America is a stinking mess. ... In the broad population, there is not much listening, yet, for open, transparent discussion of what works and what doesn't. ... 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." ...

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."

10/2: Obnoxious ad against my hospital

10/7: 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."

In October I was slated to speak at a dinner with Philip Longman, author of Best Care Anywhere: Why VA healthcare is better than yours, so I figured it'd be a good idea to read his book. Fortunately, it turned out to be a great book. I serialized my notes:

10/9: Highlighted in Best Care Anywhere - part 1
Part 2, part 2a, part 3, part 4 (the "Hard Hats" revolution), part 5 ("patient for life")

10/10: Human propulsion device for wheelchairs

10/17: "Medical home": where everybody knows your name
Explains what PCPCC has been talking about when they say "medical home." Dr. Ted says the concept has a marketing problem, because consumers (that's us) hear the term and think "nursing home," which is not at all the idea.

10/19: Runnymede: making light of the colonoscopy thing. (Results here.)

10/22: Important: All MRIs are not created equal
(Applies to MRI, not CT.) Vital information. I've had a few scans, and trust me on this: your hospital will not want you asking how their scanner compares to local alternatives. But your accurate diagnosis can depend on it, and you will have to push on it.

10/24: "Half of doctors routinely prescribe placebos"

Then the big event - my first serious speaking engagement at a healthcare conference:
10/29: Dr. Dan and I speak at Connected Health

Another book I've been reading is Anticancer: A New Way of Life, about things we can do to improve our odds. One thing it taught me is wonderful: dark chocolate fights cancer!
11/8: Chocolate Therapy!

The quarter nears an end with a decision to start questioning one of the principles I'd learned about in the past six months, evidence-based medicine. It's an important improvement in healthcare practice in recent decades, but it has limitations.

And this led to a flurry of increasingly informative posts both here and on the e-patient blog, which have rapidly changed my whole view of who and what we can rely on, as we search for information to save our butts when everything is at stake:

11/11: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?"
This was my first post to be picked up by notable others. AmyT of the highly rated DiabetesMine blog posted about it, and Terry Graedon of The People's Pharmacy sent praise. (I don't mean to sound puffy; my point is that I've been working to educate myself so I'm able to converse at a reasonable level, know what I'm talking about, and eventually perhaps contribute some original insights. So this post is indeed a milestone for me.)

This arose from, among other things, reading The End of Medicine (medicine as we know it, anyway), which was recommended by a longtime industry friend. That book mentions the evidence for the effectiveness of statins such as Lipitor. That led to a series of incisive posts on the e-patient blog, including e-patient doctor John Grohol introducing me to a great paper:

11/15: Making Sense of Health Statistics and part 2 (11/17)
11/22: More on statistics: deadly omissions, deadly conflicts

Finally, I participated in a "blog rally" - at least 80 95 healthcare-related blogs posted this over Thanksgiving weekend:

11/26: Engage with Grace: The One Slide project


Posts not directly related to my healthcare education:

Two updates on the status of my cousin Chris and his spinal chord injury:
11/7: PT equipment for tall people?
11/22: Sled hockey

And the usual ration of diversions sprinkled throughout -
9/20: Waking Up Is Hard To Do - nurse anesthetists doing a Neil Sedaka parody
10/1: Splitting this blog - announcement of the ImPatient Dave blog
10/10: Grass Roots Candidate (the e-Patient Dave Express!)


So ends my first year as a blogger. I can barely imagine what the next year will bring, but I bet it'll be fascinating and fun!

Saturday, November 29, 2008

Happy Birthday to this blog, part 3

Continued from part 2

In hindsight, the first three months (11/28 through the Texas trip) were germination, early thinking, with signs of what lay ahead. The second three months were about exploration and education, as I started learning the lay of the land, understanding my first layers of how the US healthcare system works.

I also saw that I really want to produce results in this area. So although I didn't write about it here, in late May I attended Landmark's Conference for Global Transformation.

I didn't have the prerequisites to be a registered attendee, but somehow that didn't stop me. (Imagine that!) I just wanted to be in the "space" of a mass of people who are actively engaged in changing the world in all areas of life, so I assisted on the production team.

And man, did I emerge with a different kind of energy and a clearer focus. Landmark's technology is a kind of "applied ontology," a sort of existential booster shot that fortifies who you are in life, with a promise of "the power to be effective in the areas of life that matter most to you."


Q3 (the third quarter of this blog) turned out to be my "coming out" - starting to gain a wider audience.

6/7: CaringBridge story

This was the Associated Press story about CaringBridge and CarePages by Stephanie Nano (a sharp reporter), which started with my story and featured a photo of my daughter Lindsey and me, going out to dinner to celebrate her engagement - an occasion that wouldn't have happened if things had turned out the way the statistics had suggested. :)

That same week, for the first time I was on a panel at the Mass Tech Leaders Council. They asked me to write something for their blog, which led me to write some material for new visitors in my next posts.

6/18: Why I blog and My cancer story - short version

During the spring on the e-patient blog we'd highlighted what we felt were some weaknesses in the viewpoint of CNN's "Empowered Patient" column. So I was very happy to be contacted by Elizabeth Cohen, health correspondent for that series, who asked my thoughts for a "pioneers" feature they were doing for July 4:

7/3: CNN's "Empowered Patient heroes" recognizes e-patient pioneers Tom Ferguson and Gilles Frydman

A profound moment for me was the discovery of two slides by Tom Ferguson MD, which he created when the Web was less than a year old. He foresaw (correctly!) how healthcare would be turned on its head when patients have access medical information and to each other. Visionary, foundational thinking:

7/18: Steal these slides

7/25: Illness in the Age of 'e'
Announcement of the paper and presentation that my doctor and I are doing.

Then came the series where I summarized the e-patient white paper over an 18 day span:

e-Patients: How they can help us heal healthcare, chapter 1: Hunters and Gatherers of Medical Information (8/5)

Chapter 2: Content, Connectivity, and Communityware (Includes the seminal "seven preliminary conclusions")

Chapter 3: Patient-Centered Networks: Connected Communities of Care

Chapter 4: The Surprisingly Complex World of e-Communities

Chapter 5: e-Patients as Medical Researchers

Chapter 6: Learning from e-Patients

Chapter 7: The autonomous patient (8/23)

Intermixed with that was misc. news:

8/10: Inspiring news from my cousin's blog

8/18: To heck with cancer; I don't like having a cold.

8/23: "Born To Be..." (levity from Levy)

8/28: Takin' It Back with Barack, Jack – still a great swing song for swing voters

And that brings us up to three months ago. For me the synopses of the white paper were the big moment: once I'd done that, I became about to express the content on my own. I wouldn't say I can quote it "chapter and verse" but I now have the ability to write and speak without that feeling of "What was that I read... wasn't there something about that in the white paper?"

Series ends with Part 4

Friday, November 28, 2008

Happy Birthday to this blog, part 2

Continued from Part 1

3/5: "Succeeding in online health" lunch meeting
and "Succeeding in online health" lunch: take-aways

Returning from Texas, I immediately had the chance to attend a technology lunch meeting on Boston's Rt. 128 high tech corridor. I started engaging in the conversation about a new generation of healthcare systems and companies.

"I'm not being anti-establishment here, I'm being businesslike. Peer-reviewed medical journals may be full of reproducible experimental results, but (a) they may not answer what people want to ask, and (b) as happened in my cancer, the best current peer-reviewed journal articles may not be useful anymore."

3/6: Susannah Fox's keynote at Health 2.0

"Earlier this week, at the Health 2.0 conference in San Diego, Susannah Fox of the Pew Internet and American Life project gave a terrific yet short keynote speech. I wouldn't be surprised if we someday mark this as a cusp, a turning point. It's the best quick answer to "What's all this e-patient stuff?", plus a bonus super-sharp insight into what the future holds."

3/7: When the Patient is a Yahoo

A response to an unpleasant article in Time called "When the patient is a googler." A vital point as patient and doctor alike wake up to the new world of patients participating in their care.

3/22: Recent posts on other blogs

3/22: The Minnesota "wrong kidney" cancer tragedy

A defining moment, for me. A year after my own nephrectomy, a case that vividly illustrates the value of giving patients access to their medical records online – - if for no other reason than to let them and their families check for errors.

3/23: Cancer patient empowerment for GenX and GenY

3/24: A Neuroanatomist Witnesses Her Own Stroke

Jill Taylor Bolte's phenomenal TED talk.

4/1: Randy Pausch is still kickin'

"Yesterday my wife sent me a very sad story titled Four Get Cancer from Teen's Donated Organs. This morning I wrote a heartfelt post about it on the e-patients blog. If you're trying to understand what the role of an e-patient is, in today's healthcare world, I urge you to read it."

4/13: Beginner's Guide, Part 1
5/9: Beginner's Guide, Part 2

Since the start I wanted to help people get oriented. I started this series and never finished it. Instead, this fall I "synposized" the white paper.

5/3: My cousin Chris: doctor-to-be, paralyzed, blogging

He's coming along strongly. Long way still to go.

5/6: A (female) e-patient clone of you know who

The e-patient blog starts its serious of guest e-patients.

5/8: Patient-Centered Primary Care

Thanks to Leslie Harkins, I got connected with PCPCC, which continues to be one of the best forces for pushing information top policymakers for bringing us back to the point where we have a "medical home" and where primary care is valued by the payment system.

5/20: The Launch of Google Health
5/24: More on Google Health: two reasons to be wary

As noted in the previous post, I'm now inclined to think that our interests (as patients pushing for change) may override the concerns I expressed here.

5/25: e-Patient stories: several types

As the guest series continued on the e-patients blog, a slew of different stories and scenarios arose. A fitting conclusion to my first full quarter as someone exploring the e-patient world!

5/26: Memorial Day 2008

6/4: Beth Israel Deaconess on ... Jeopardy??

Thursday, November 27, 2008

Happy Birthday to this blog

This weekend marks the first anniversary of my first blog post ever. Great time to look back, in preparation for looking forward.

I'm going to post a recap of the past year, in several chunks. This first one covers the first three months, from when I started, not knowing where this would lead. The three month mark happens to come just as I left to join the e-patient working group for their annual retreat in Texas.

11/29/07: Thank you, Beth Israel Deaconess!

Dr. David McDermott, oncologist; Kendra Bradley, RN, manager of my biologic therapy program; Mee-Young Lee and Virginia Seery, nurse practitioners; Dr. Megan Anderson, the orthopedic surgeon who fixed my leg; the nurses of Stoneman 7; Dr. Danny Sands, my primary physician, and, I later learned, a pioneer in the use of doctor-patient email. Lucky me!

I suppose I could thank CEO Paul Levy, too, but what does he know. :)

12/4: Thank you, Dr. Drew Wagner!

Then I remembered there was this surgeon involved, who removed the kidney. Oh yeah, him.Read this, if you haven't. Extraordinary surgeon, but I almost beaned him with my cane.

12/7: What's it gonna take?

12/8: For prettier statistics, omit inconvenient people.

Given that I've been talking a lot about statistics lately, I was surprised to see that it was one of my first posts. But today I see that misunderstanding statistics - or not reading them critically, thoughtfully, inquiringly - may be a root cause of the mess that American healthcare is in today.

12/9: Thank you, Harvard Pilgrim!

1/14/08: Don't fall for SEIU

This was an early warning. This union has gone on to use despicable tactics against this hospital, with all kinds of claims of employer abuse, meanwhile advocating an end to secret ballots when employees vote on whether to unionize. There's a lot about this on Paul Levy's blog. They're liars; don't believe a word they say.

1/19: What is the nature of wellness?

An early inquiry into the nature of the immune system. I continue to think, intuitively, that this is valid. And, in Anticancer, the author cites evidence that the immune system functions better "when it's in the service of a life that's objectively worth living" (whatever that means). My gut agrees.

1/20: On the health of complex systems

A note on my friend Dorron's little blog about his deep work with analyzing statistics to predict system failures. I see a future for this in healthcare.

(1/23: Dr. Sands steered me to

1/24: What's next - Google Health??

My initial, highly skeptical take on Google Health. My views on this are changing: as I study healthcare I'm coming to think that (a) there's a lot of potential patient benefit in aggregating our data, (b) it ain't happening rapidly on its own anywhere else, (c) the privacy concerns that I spoke of are not nearly as "worse" in Google's case than than they are in HIPAA-covered entities, because in reality hardly anything ever happens with HIPAA violations (from what I've heard).

Bottom line, if reality today was what most people think it is (and I thought it was), Google Health would not be worth the risk. But it's not, and there's a real opportunity for us to take matters into our own hands. I'm likely to sign up.

1/26: Colas and kidneys

1/27: Books that make you dumb? I don't think so.

Another early post on misinterpreting statistics.

1/28: e-Patient? Yes, e-Patient.

After reading the e-patients white paper, I "re-branded" myself from Patient Dave to e-Patient Dave. Why? Because I discovered that everything about the way I'd approached my illness was completely aligned with the trends in the paper. And I immediately saw what I'm going to do with "the new life of Patient Dave": do everything I can to promote this agenda for positive change.

1/29: Seeking medical data on the web

"Last week's post on eDocAmerica cites a report by the US Center for Medicine in the Public Interest (CMPI) documenting that searching for medical information on the Internet can cause serious problems. Here's the comment I posted there (edited slightly for this context). Please read it listening for the shift in the wind that's underway with the e-Patient movement I wrote about yesterday...

"Having read most of the e-Patients "manifesto" (white paper) in the past few days, I find the CMPI report rather like a belching volley from a dying breed. (I know they mean well, but they don't yet get it.) ..."

2/7: Latest on the e-Patients blog

"In a time of drastic change it is the learners who survive, while the 'learned' find themselves fully equipped to live in a world that no longer exists.
—Eric Hoffer"

2/7: Web 2.0 means we get to say.

A key topic I've learned about in 2008, at work and in healthcare, is what's called "Web 2.0." Some call it "the read-write Web" because you can post things on the Internet now - it's not "read-only" like the early Web, where you could look things up but you couldn't write anything into the Internet.

The impact of that has been massive. It's not just that we can write blogs and talk to each other; we can now be publishers, and we now have access to thousands of times more information than in the past. Enabled by this, Ordinary Us can learn things and make informed choices that were never possible.

Students of the subject call it User Generated Content (UGC):
"...This that you're reading, right here, is user-generated content.

"And the big thing about THAT is that it's enabled us to spout our opinions, for instance rating books on Amazon or even posting our own book reviews, as short or as long as we want.

"What this means in the world of e-patients is that we ourselves get to talk about anything we want; instead of reading only what a magazine editor thinks we want (or need to know), we ourselves get to start any discussion we want and take it anywhere we want.

"You could put it this way: Web 2.0 means we get to say. We get to say whatever we want, and we even get to say what gets talked about...."

2/10: An e-patient writes in
(about Amy Tenderich of the widely-read DiabetesMine blog)
"Here's a perfect e-patient snip from her article:
I'm just astounded to think that one sick mom in California can reach out to so many fellow patients, create a community, and actually turn the whole thing into a business.
"Amy's story illustrates a major aspect of the e-patient movement: that if patients (the consumers of healthcare) get to start conversations and other patients get to take those conversations wherever they want (a.k.a. "We get to say"), the most useful conversations will thrive, and all of us - consumers and providers alike - will benefit.

2/10: Don't be a jerk to your partner.

As one learns about the fallibility of the healthcare system sometimes there's a tendency to start barking at the doctors, which makes no sense. Some doctors may be arrogant fools, but IMO that's just as true of patients. And good luck to any patient who tries to play the doctor's role in treating kidney cancer or reconstructing a shattered leg.

The world of the future involved participatory medicine, collaborative medicine, a partnership: "The point of the e-patient movement is to create partnership with your providers. If your physician is new to the idea, share, don't clobber."

2/10: Let's spread the term "e-patient"

2/11: MSNBC covers CaringBridge and CarePages

2/18 (my birthday): Randy Pausch: "Alive and Healthy"

2/19: A Singing Valentine from a barbershop quartet

2/20: Our cancer journal is e-published!
I'm so happy to announce that my community's CaringBridge cancer journal has been published online, for anyone to download (free) or read online. Laugh, Sing and Eat Like a Pig: My Year of Living Cancerously now has an official home on the ACOR web site.

A week later, I headed off to Texas, to meet the e-patient team for the first time. Nothing's been the same since. :)

Continued in Part 2

Wednesday, November 26, 2008

Engage with Grace: The One Slide project

Today many bloggers are cross-posting the item below, to encourage conversation about a topic that's close to my heart: how we want to die. Here's why I'm participating.

Last year I approached the end of life. I didn't get close to the moment itself, but the prospect was real enough that I started thinking about which of my organs would fail first and what it would feel like – not from a pain perspective but wondering what it would be like as my body lost strength and shut down forever.

Nothing's a better platform than that for thinking about patient empowerment issues.

It includes calling the shots on how it'll happen, including refusing to go along with unwanted treatments from providers. Nobody wants to think about that, but it still happens. Just last month my friend Paul Grundy MD, of PCPCC, reported that it happened to his own father. And he says it happens "well over 50% of the time."

Let's be informed, empowered, and prepared. As we enter this holiday season and families come together I hope you'll take the chance to discuss this before a crisis arises. My family and I had time to discuss what we want, but you never know.

Here's an image of the slide, and below is the post that many are sharing today. (The original PowerPoint slide is linked within the post.)

Engage with Grace: The One Slide project

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let's start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to This post was written by Alexandra Drane and the Engage With Grace team)

Sunday, November 23, 2008

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. :)

Saturday, November 22, 2008

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 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, 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. :)

Monday, November 17, 2008

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.

Saturday, November 15, 2008

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

Tuesday, November 11, 2008

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.

Sunday, November 9, 2008

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:


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?

Saturday, November 8, 2008

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.)

Friday, November 7, 2008

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!