You go, Chris McCulloh!

I've written several times about my 29 year old cousin Chris McCulloh, who was a few months shy of entering Case Western Reserve medical school when, in January 2008, he fell at home and got a C6-C7 subluxation. (As I understand it, a disc between two neck vertebrae popped out of place and severely scrunched the spinal cord, causing total paralysis from there down. I imagine that's imprecise but you get the idea.)

Like me with my CaringBridge journal, he started a blog. Like me, he's posted anatomically cringe-worthy images of his injury.

The man has battled back phenomenally. At first it was not certain he'd ever stand, let alone walk. It was big news in May when he moved his left big toe, and a few days later I like to kick people. (Attitude runs in the family!)

Started standing (flotation-assisted) in the pool in August, first steps in September, back on the ice playing paralympic hockey in November.

Now, in today's post, I find out the guy's been out traveling, solo – no traveling companion, got himself to Amtrak and to DC and to the hotel to attend his conference. And, of course, he gripes (as I did when I used scooters and walkers) about idiotic "accessible" facilities that clearly were never even tried by anyone in a wheelchair. You go, cuz. :)

Next weekend he takes his first plane trip, to Cleveland, to resume his medical school career where he left off.

Holy cow. He's a monster.

Read it.

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.

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

Cross-posted from the e-patients blog, where I'm an author.

Today's entry in the CNN.com "Empowered Patient" series, by medical correspondent Elizabeth Cohen, is titled Empowered heroes' hard lessons now help others:

This week, as we reflect on American heroes, we're saluting a few "patient empowerment" heroes, whose experiences with the health system have inspired them to help others.

I'm someone who has personally benefitted from the road these pioneers paved and lit, so I'm very glad to see this growing public awareness of their vital work.

The column's details page includes stories of ordinary people who, not unlike America's founders, had experiences that left them feeling that "we the people" could create a better reality with a new balance of power. They set out to create a newly empowered citizenry, and they did. Consider:

• About e-patient founder "Doc Tom" Ferguson, Cohen writes: "If there's a 'George Washington' of the empowered patient movement, it's Doctor Tom Ferguson. In 1975, at a time when many doctors were still viewed as all-knowing and infallible, Ferguson, a physician, author, and researcher, started writing about patients advocating for their own health care."


• Michael Cohen, whose work on medical errors thirty years ago led him to found the Institute for Safe Medical Practices.


• Gilles Frydman, whose experience with his wife's cancer in 1996 led him to form ACOR, the network of free cancer listservs that made such a difference for me during the peak of my cancer experience last year.
  
  
• Ysabel Duron, KRON news anchor whose 1998 encounter with Hodgkins Disease led her to notice (among many other things) that Latinos were largely missing from the cancer treatment scene; she founded Latinas Contra Cancer.
  
  
• Trisha Torry, whose incorrect cancer diagnosis in 2004 led her to found www.DiagKnowsis.com. She also runs patients.about.com.
  
  
• Victoria and Armando Nahum, whose son's 2006 death from an in-hospital infection has led them to form the Safe Care Campaign, teaching about preventing infection.

I want to point out a few things.

First, most of these people took a highly adverse experience and used it to create a new reality that had never existed before. To me this is a high expression of the human spirit.

Second, none of them did it for personal gain. This is people creating things for the public good.

Third - and perhaps most important on this Independence Day in America - although each of them is "just one person" (or couple) facing a massive establishment, think about the results we have today. It's commonplace to research one's own medical condition, doctors increasingly welcome such participation, people increasingly know it's their right to ask questions of their doctors (and the whole system), and more and more, people are banding together (especially on the Internet) to share their knowledge with others.

We still have a long way to go, but increasingly people are empowered to participate in their care.

I never knew Doc Tom, our "George Washington." He died before finishing his manifesto, "e-patients: how they can help us cure healthcare." Members of the e-Patient Scholars Working Group completed it in 2007 (PDF, wiki). The cover carries one more allusion to 1776: "I felt I was looking over Thomas Paine's shoulder."

When I first found this group in January, I said something about "the Sixties motto 'power to the people,' made real in the world." I guess it goes back farther than that. Thanks to all who've done the work so far - and thanks to CNN's Cohen for spreading the word.