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.

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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.)

I went through this in the typesetting industry 20 years ago when desktop publishing (DTP) came along. "Horrors, don't let the unwashed own FONTS, for heaven's sake! They'll mix serif and sans in unclean ways!" And so they did. And some still do.

Similarly today, blogs mean a lot of people who can't spell get to publish, or post comments like "u r dum." But with desktop publishing and now blogs, a slew of people have learned how to use fonts (or be publishers) - orders of magnitude more people than all who'd had access to those previously closed technologies.

Of course that analogy's not perfect - nobody gets hurt due to klutzy font use (usually, heh). A better analogy is letting people drive: some people do get hurt by not being driven by a professional. But you ain't gettin' me to buy an armored Hummer and hire a driver every time I want to go to the grocery store.

I need to say here that I completely respect the people who are warning us about garbage Web content. They're right. But there's at least as big a risk from thinking the average physician (even the most conscientious ones) can be on top of all the conditions we show up with. It's especially true given the explosion of new medical information - who could possibly keep up?

While beating a nasty cancer in 2007, I waded through a ton of bad information on the web - and all of it came from respected medical web sites. All of the information I found was out of date; it had all been gathered (and peer reviewed!) before any of today's treatments existed. And when I attended a patient conference that fall, the same obsolete statistics were still being quoted!

The point isn't that "the establishment" is mucked up. A superb part of the establishment (Beth Israel Deaconess in Boston) saved my butt. The point is that there's no substitute for taking responsibility for your own situation. That includes not just learning everything you can get your hands on; it includes taking responsibility for evaluating what you find, learning to sort the garbage from the gold.

And for me the only solution to that is peer review - by *my* peers, the other patients whose butts are on the line, like mine. I joined the ACOR.org listserv for my cancer, lurked for 2-3 days, then asked "Where's the best place for me near Boston?" Within 90 minutes I had three responses, all saying the same thing.

Try asking a medical journal that question when you're in big trouble and need an answer fast. And try figuring out how to tell whether the answer you get is reliable.

Yeah, there's garbage on the Internet. There are also people dying from misinformation due to out-of-date physicians and from overloaded good physicians. (Join one of the ACOR listservs and hear the stories that pop up all the time.) The only viable solution I know is empowerment and teaching each other how to be personally responsible for what we read - and partnering with an excellent physician. It worked for me.

I knew that from personal experience - and then along comes the e-patient manifesto, saying exactly that. Cool.

Please, please, doctors (including CMPI): read the "manifesto," and please understand what it says on page 22: "We modestly suggest that the tentative conclusions below are no more 'anti-doctor' or 'anti-medicine' than the conclusions of Copernicus and Galileo were anti-astronomer."

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What do you think? This is a significant issue. You, or someone you know, will face this issue first-hand, and if you're in my generation it'll most likely happen within 10 years (or already has). What do you think? How will you advise family and friends?

e-Patient? Yes, e-Patient.

In the past few days, with my discovery on 1/23 of the e-Patient Scholars Working Group, my entire outlook on life has changed - so much so that I'm changing the title of this blog from "Patient Dave" to "e-Patient Dave."

That's because I've found my purpose for this blog. And that in turn is because my experience over the past year is a ridiculously close match for the principles and practices recommended by the group. So I think I've found the answer to a question I've asked in recent months: "What am I going to do, what am I going to create in the world, out of my experiences of the past year?"

I'd heard about this "movement" (my term, not theirs) earlier in the month from Dr. Danny Sands, my primary physician, a member of the group. I'll be saying more about the subject in coming posts, but I'm going to start with a few words and a few links. (These will be duplicates, for readers of my CaringBridge journal.)

Here's what I found last Wednesday when I googled the term. First I found the eDoc America blog, which said:

'ePatients are those that use e mail and the internet to become empowered to manage their own health and become partners with their providers. From saving lives to saving dollars, this blog both entertains and instructs in ways to use the internet for better health care. Approach with caution—this may radically change your views about your approach to the health care system!'

(The page with that text went away when the blog moved in January - but it'll live forever here :-).)

Here are a few links I've found since then:

• The e-patients white paper - a manifesto, brilliantly written, with compelling true stories that will bend your outlook on who's responsible for what in health care. 126 pages but it reads fast - someone I know read it Friday afternoon, and called it "thrilling." (The paper was a research project supported by a Robert Wood Johnson Foundation Quality Health Care Grant.)
  
  
• Their blog and its RSS feed
  
  
• A guest appearance (last week!) by group member Dr. Alan Greene on NYTimes.com. (He's founder, with wife Cheryl, of www.DrGreene.com, one of the first e-patient-centric pediatric sites.)
  
  
• An interview with group members Joe and Terry Graedon, founders of PeoplesPharmacy.com and hosts of a Public Radio talk show. (Check out their classic e-patient editorial, just last Monday: "Don't be a good patient." Huzzah!) (And no, it doesn't say "Doctors are jerks." Just read it.)
  
  
• ACOR.org, the free collection of online cancer resources founded by group member Gilles Frydman, including the [KIDNEY-ONC] kidney cancer email group that played such a pivotal role in my case last year.
  
  
• A landmark 2001 article in Wired about people taking command of (and responsibility for) their care. The article won the American Society of Journalists and Authors 2002 Writing Award for Outstanding Article of the Year: Reporting on a Significant Topic. Note - that's not "significant medical topic" or "significant e-topic," it's any topic.
  

There's much more, but enough is enough for a first post. Suffice it to say, this looks to me like the Sixties motto "power to the people," made real in the world, in a way that's touching many many people and could be touching far more - even everyone.

And suffice it to say, it's been a busy few days for me. As I've said to several friends, "It's as if I've discovered a parallel universe where everyone speaks a language I thought nobody else spoke."

I can't believe I went through last year without knowing about this group. Well, I do now.

Books that make you dumb? I don't think so.

Time for another statistics lesson. I'm not the world's greatest statistics whiz (not like the super-geek on TV's "NUMB3RS" show), but that's part of my point: you don't have to be a super-geek to detect major mistakes in statistics that come your way.

This isn't a rant - it's just an interesting example of what to be careful about, with a little entertainment along the way.

I just got an email with something that, on the face of it, is fascinating:

Some one matched up the most popular books in Facebook college groups with average SAT scores at colleges to see what people commonly read at different intelligence levels. http://booksthatmakeyoudumb.virgil.gr/

Nice graphics, and a decent explanation about his method. On the face of it, pretty interesting.

But there's this thing about statistics: you've got to be careful about (at least) three things:

1. When you see a pattern, are you really seeing a pattern you can count on, or is it just a momentary coincidence? (If the first two people to walk into your office are men, does that mean only men will walk in today?)
   
   
2. Even when you do see a pretty reliable pattern, can you be reasonably sure it means what you think it means? (A relationship between the behaviors of two variables is called a correlation, but that doesn't mean you can say one caused the other. A famous example: for some years there was a correlation between wolverine population and the number of sunspots. Did either cause the other? Not likely, and besides, who could tell? The lesson: Similar behavior of two figures could just be a coincidence.)
   
   
3. Finally, you've got to be really careful about whom you actually measured. (If you interview people who are hanging out in skid row bars at 2 a.m., you may reach some interesting conclusions about the opinions of people in skid row bars at 2 a.m., but you can't say they're conclusions about people in general.)
   

Returning to the email: this guy saw patterns in which books were favorites at colleges with different average SAT scores. Addressing #1, he correctly didn't count colleges with very little data. But he blew it on #2, when he titled the page "books that make you dumb," revealing a pretty massive fixation on one aspect of the whole picture, and flying in the face of his assurance that "I know correlation doesn't equal causation."

And besides, on #3, he doesn't even mention the gross sampling error of making an assertion about the book, based on data from Facebook readers who read it AND who participate in listing their favorites. Example 1: the Jesuit scholars at Boston College are highly intellectual, and I imagine that if they ranked their favorite books, the Holy Bible would rank high; but I doubt the Jesuits are ranking books on Facebook, and the Bible ranks among the lowest on this guy's charts.

Example 2: if some book actually made many people so brilliant they ditched Facebook, those people would disappear from this ranking entirely, and all that would remain would be the people who completely didn't get it. And, that book would show up as "making people dumb."

Besides, there's the whole issue of whether SATs are any indication of smartness, not to mention which type of smartness (Gardner's Multiple Intelligences).

He woud have been better off titling it BooksThatLowAndHighSATSchoolFacebookMembersLove.

This isn't just an academic issue - these errors can lead us to drive off a cliff. When we think we see something, and we don't, then with the best of intentions we can make serious mistakes in our conclusions, our policy decisions and our life choices.

Colas and kidneys

Short piece in today's Times about kidney disease.

"In a study published in the journal Epidemiology, the team compared the dietary habits of 465 people with chronic kidney disease and 467 healthy people. After controlling for various factors, the team found that drinking two or more colas a day — whether artificially sweetened or regular — was linked to a twofold risk of chronic kidney disease."

It's specific to colas, not carbonated drinks in general. The problems are kidney stones and kidney failure; cancer isn't mentioned, and I haven't been a big cola drinker for a long time, so I doubt this was a factor in my kidney cancer. But it's good to know.

What's next - Google Health??

Well, what won't Google dip its (extremely large) toe into next? My, it's Google Health. Download your medical records from hospitals and pharmacies, and just give it all to Google and they'll take real good care of it.

Some of us get the creepies just THINKING of how much Google knows about our private stuff. Now "privates" could be more literally true than before.

Mind you, there's a large and legitimate move afoot to create some sort of universal (but private) form of medical records storage, some universally accessible database so when there's an emergency, physicians can treat you accurately and rapidly. (Heck, accurate and up to date information would be useful in non-emergency situations, too. It's amazing how difficult that is to achieve. Many healthcare bloggers have talked about it.)

When I attended a dinner meeting at BI-Deaconess last fall, we saw a new gadget that a patient can wear, a little USB disk drive containing all their medical records. If you were to be away from your usual care when an emergency befell you, this could be immensely valuable. It's a good thing. And if you read my cancer journal last year, you know I love online access to my medical information.

At work I spend a lot of time dealing with Google tools, particularly their "search engine marketing" tools. They write some amazingly good software.

But it'll be a cold day in hell before I hand them my medical data. Sure, they say I'll "own" it. But who could possibly police what they do with it?

Of course, the site says:

Google Health privacy policy: Google respects the privacy of your health information.

But I'm not comfortable that there's integrity behind that. See, there's this motto "don't be evil" that's espoused by CEO Eric Schmidt when discussing issues of privacy when Google reaches into your online underpants and reports its findings to the world. And I'll never forget 2005, when Google (particularly Schmidt) showed its real stripes on that issue.

CNet.com wrote a fairly balanced article about Google and privacy under the uncritical title "Google Balances Privacy, Reach." To illustrate the topic, the writer Googled Eric Schmidt himself, for just a half hour, and published what she found - about him, his salary, his neighbors, his political donations, etc.

And what was the response of The Goog? Why, CNet.com got its goolies chopped off by ... let me see... my, it was CEO Eric Schmidt! This CNN article relates how Schmidt banned CNet from getting any access to Google employees for a year. And when you're a tech news site, that's a major punishment.

GOOG's stock is doing great and I love their free tools, but there's no way in hell I'm giving them sensitive personal data, regardless of what their policy says. New motto for 2008: Don't Be Stupid.

On the health of complex systems

Somewhat related to my "nature of wellness" post is the general question of what is health.

I've known Dorron Levy since November of 1994, and for almost the whole time he's devoted his career to figuring out how to tell whether a system is healthy, with the goal of enabling early detection, which allows solving a problem before its consequences spread, becoming more costly and eventually becoming urgent.

His work that's been published is about computer-based systems, but the underlying theoretical work is quite generalized, and I expect it'll lead to sophisticated early detection of human health problems. He's started a blog, SystemHealth.blogspot.com, to lay out his thinking in easy-to-digest chapters. If you're at all interested in how things work, you might enjoy reading it.

What is the nature of wellness?

Today I was reflecting with wife Ginny about the immune system. My cancer treatment last year involved getting very large boosts to my immune system, and a number of things about my body have responded, beyond the cancer’s retreat. When I combine that with the much-studied interaction between the mind and the immune system, I saw this pattern: “The immune system’s way of being is ‘I am, and I have a right to be,’ and it fights anything that says ‘No you’re not’ or “No you don’t.’”

So the question arises, what has the brain be on one side or the other of that tug of war?

I assert that one factor – a big one – can be the presence of an affirming community that says “Yes you are.” My own blog community during my 2007 cancer experience was a big boost to my sense that I matter to people, and I have no doubt that boosted my sense that I deserved to survive.

About the mind-body connection, years ago I read that in a very real sense, the immune system is a sixth sense, bringing information to the brain about what’s going on in the “corners of the empire” and carrying instructions back. Googling leads to some similar items here (“the nervous and immune systems use a common chemical language for intra and inter-system communication”) and here (“the immune system [serves] as the sixth sense that notifies the nervous system of the presence of entities, such as viruses and bacteria, that are imperceptible to the classic senses”).

The New York Times “Well” blog has a conversation with Michael Pollan, author of In Defense of Food.I am no nutritionist but this makes sense to me:

Americans are a people so obsessed with nutrition yet whose dietary health is so poor. That strikes me as a paradox. We worry more about nutritional health, and we see food in terms of health. Yet we’re the world champs in terms of obesity, diabetes, heart disease and the cancers linked to diet. I think it’s odd. It suggests that worrying about your dietary health is not necessarily good for your dietary health.
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I think health should be a byproduct of eating well, for reasons that have nothing to do with health, such as cooking meals, eating together and eating real food. You’re going to be healthy, but that’s not the goal. The goal should just be eating well for pleasure, for community, and all the other reasons people eat. What I’m trying to do is to bring a man-from-Mars view to the American way of thinking about food. This is so second nature to us — food is either advancing your health or ruining your health. That’s a very limited way to think about food, and it’s a very limited way to think about health. The health of our bodies is tied to the health of the community and the health of the earth. Health is indivisible.

My favorite brain author is Robert Ornstein. I heard him speak once, and he too puzzled about all the talk about not ingesting fats, when (at that time) there was no evidence at all that changing your intake made any difference in what showed up in your blood. Rather, he said, "What about the salutary effects of enjoying a great meal?" Shortly after, he published Healthy Pleasures. (If this concept interests you, check other mind/health books he's co-authored.)

I personally have a strong sense that our beings - our physical beings and our metaphysical ones, be they "souls" or something else - do resonate with each other, and there's something about the very nature of being well that's worth looking at. And it includes having a strong, supportive community.

More about this in future posts, I expect. For now, think about it, and if you have personal experiences to share, post a comment (at the link below).

Don't fall for SEIU

Some of you may have received an email today from MoveOn. I urge you not to donate to this particular campaign, and to go to MoveOn's suggestion form and warn them, as I did:

Be very, very careful about SEIU. I'm a strong progressive myself, very pro-union philosophically, but these people give unions a bad name. They lie, distort, send subversive emails and letters full of half-truths or outright untruths. Creating a strong union movement must not depend on such Bush-like tactics!

I'm quite disappointed to see them showing up in a MoveOn email.

Watch out - they open you to what could be well-documented claims of fraud and deception. That is NOT something MoveOn needs!

Here's why I said that.

These people are weasels. Those of you who've been following Paul Levy's blog, as CEO of my hospital (Beth Israel Deaconess Medical Center, aka BIDMC), and who perhaps have met him, know what kind of man he is: competent, compassionate, committed, honest. SEIU wants to unionize his hospital, and they've been claiming he's a slimy liar who uses manipulative tactics more appropriate to the Bush administration.

Here's a blog post from the other day about a packet they just sent to 500 affiliated doctors (who don't even work for the hospital!). The package suggests, among other things, that Levy is failing to honor the Jewish tradition of social justice.

Furthermore, SEIU is trying to prevent putting the issue to a secret ballot of the affected workers, supervised by the National Labor Relations Board, and has even supported legislation to eliminate those elections. Note - NLRB elections were created specifically to prevent manipulative employers from blocking workers' free choice.

Paul advocated in an August 2006 post for a free exchange of views: "we will vigorously oppose any efforts to short-circuit the legitimate process by which employees of this hospital can consider, debate, and vote on this issue."

Several months later he again advocated that the vote be by secret ballot. Last summer he spelled out specific tactics the union has used in other cities. One commenter said

The initial cause for unions was to avoid worker exploitation and unsafe working environments. I don’t see this happening at BIDMC. If a Hospital or business provides a good safe place to work with decent benefits and livable wages for all its employees than there is no need for union intervention. That being said I do feel there are still places of business that could use a union…Maybe the SEIU should be looking at Wal*Mart????"

I couldn't agree more. I wonder why on earth they're not doing that. Or, consider Nike, which in 2003 went to court to claim the right to lie about whether they'd cleaned up their sweatshops! They finally gave up, six months later, and agreed to donate $1.5M to a workers' rights group.

Paul's "pages from the playbook" post contains comments spanning three months, with back and forth between Levy and various attackers (and supporters). You can decide for yourself whether he's open and honest. Consider in particular the August 13 comment by an employee, which criticizes several things about life as a nurse at BIDMC - Paul published it unedited. This man is not a manipulator.

We need unions where there are rampant abuses, as with Nike and Wal-Mart. But SEIU does not give unions a good name.

I personally believe the Reagan administration did us all a great disservice when they started busting up unions, starting with PATCO... that's one reason the middle class is disappearing in the US, with grave consequences throughout the economy. But the solution is not to lie and go after great not-for-profit institutions. Shame on them - not only are they not attacking the problem, they're giving the solution a bad name in the process.