I recently attended my college reunion, and had a great talk with a classmate I see far too seldom.  He’s an MD, now spending most of his time on genetic research.  I told him about Patient Wisdom, using one of my favorite anecdotes:

 

So, there’s this drug that can really help patients like me, with just a slight string attached.  The official dosage recommendation (what’s published in the package insert) is so toxic that many patients give up on the drug before it’s had a chance to do its thing.  A lot of doctors have started to experiment with reduced dosages, and there’s plenty of anecdotal evidence showing good results without a lot of the terrible side effects. 

 

However, a lot of docs don’t seem to be comfortable with experiments.  They stick to the package insert instructions, with the expected results.  In the online community in which I’m active, I may see a dozen questions every week from people who are about to start the drug, and are worried about dosage and toxicity.  Those of us with some experience under our belts share our experience with various doses and treatment schedules.  And we wonder to ourselves: why aren’t the people who write the package inserts paying attention to what hundreds of real live patients are saying about how to make this drug tolerable? 

 

My doctor friend listened sympathetically, but I could tell his mind was on a completely different plane.  “Yes,” he said.  “The genetic studies I’m involved with are showing us that there’s not such thing as a single disease.  Really, each patient has their own, unique version, so it’s not surprising that one dosage size wouldn’t fit all.”  

 

We’re at this remarkable juncture in the history of medicine, where researchers at the leading edge are deep into the genome.  Yet, back in the “real” world, patients are pleading not to be treated in cookie-cutter fashion, and often find that the best information on avoiding the cookie cutter is coming from other patients. 

 

A generation or two from now, we may all be the beneficiaries of completely personalized medicine.  In the interim, though, the wisdom of patients is helping to bridge a wide, wide gap. 

 

So, by now you’ve undoubtedly heard that Nintendo has launched the latest incarnation of its wildly successful Wii platform: Wii Fit. NPR’s usually unflappable Steve Inskeep sounded profoundly embarrassed on the radio this morning, as he stood on Wii Fit’s Balance Board and protested to his interviewee: “but you have to understand. I come from a part of the country where people don’t swivel their hips.” Forbes.com reports: “It’s a deceptive piece of technology that turns the monotony of exercise into a charming game.”

I’m all for a mass audience achieving BMI nirvana with a videogame. But what really got my attention is a recent conversation with an “e-patient” I’ve come to know as I’ve nurtured our emerging Patient Wisdom™ platform over the past year or so. E-patients are a growing, Internet-savvy cohort (over 50 million in the U.S., according to Jupiter Research), who are sharing valuable information and experience as they navigate the healthcare system and manage chronic or serious conditions.

It turns out my e-patient friend, who has multiple sclerosis, discovered the fitness benefits of the Wii months and months ago. Even if you have very limited mobility, she tells me, the motion you engage in in almost any Wii game is great for balance, upper body strength, hand-eye coordination – all important to MS patients. Some innovative rehab hospitals have actually integrated the Wii into their therapy programs, more often as a result of word-of-mouth or other viral buzz than an article in any peer-reviewed journal.

Will Nintendo ever build a marketing campaign around wheelchair-bound gamers? I’m not betting on it, at least not yet. But I never cease to be impressed by the wisdom and creativity of patients seeking to improve their quality of life, and the power of the Web to spread the word.