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Cross-posted from my own blog, and then some

E-patients, listen up. We have work to do, work we can do.

For the past year I’ve been learning what I can about the American healthcare system. I started this not as an “injured” patient but as someone who benefitted phenomenally from a brilliant cancer treatment. But when I read “e-Patients: How they can help us heal healthcare,” my eyes popped wide open with new possibilities. I started with no opinions except a new awareness that patients have much more to contribute than I’d thought.

And I know we can do it – I’ve spent my career bringing user ideas into technology and, since 1989, into online communities.

But I’ve recently approached (not reached) the conclusion that this one is not as amenable to transformation as I’m accustomed to. And I think I’ve got it figured out: there are a thousand points of pain resisting change.

First, the challenge. Imagine you’re trying to untangle a massive, knotted ball of strings, and every time you tug on one, you hear a scream of pain.

Now imagine that it’s an economic knot, and every scream is a billion dollars of pain.

And now imagine there are a thousand strings in the knot … a thousand points of pain.

That’s the reality we face in American healthcare. It’s a $2.4 trillion knot, severely dysfunctional in that it costs more and has poorer outcomes than any other developed country. Yet as Tom Daschle’s book Critical details excruciatingly, every time we try to improve it by tugging on one part of the problem, powerful parties scream in pain, because they have a lot of money at stake.

(Strictly speaking, it’s 2400 points of pain, each a billion dollars. I’ll stick with the “thousand points of” meme.)

$2.4 trillion is 40 times bigger than Microsoft and Google put together. Imagine if you had to try to fix something that big. How long would it take?

Another view: it’s been said for years that healthcare costs 50% more here per person than in most developed nations. If we could fix that with the wave of a hand, our total spending would drop by one third. And that means we’d instantly cut out $800 billion of business (1/3 of $2.4 trillion). Somebody would be spending $800B less, and somebody would be getting $800B less.

Citizens, that’s going to hurt. And a lot of people are going to fight against it – not because they don’t want better healthcare, but because they have a lot at stake, and it’s tangled.

This is a big issue, but we do need to fix it: lives are at stake. Patients and their families are facing lethal diagnoses every day, and we/they need the system to work better than it does today. And that brings up another way to look at “a thousand points of pain”: there are 1,000 cancer diagnoses in the US every six hours.* We need the system to serve us well. (And that’s not to mention other life-changing diagnoses: Cushing’s Syndrome, diabetes, and so many others. Did you know rare diseases are more common than the most common disease? Rare Disease Day is Feb. 28. Might be a thousand points of pain every hour – in the US alone.)

Personally, I’m starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.

The thousand points of pain will work on their aspect of it, and we need them to: I may be an e-patient, but I wouldn’t have dreamed up the high dosage Interleukin-2 treatment that stopped my disease.

So let’s get moving – let’s show ’em how e-patients can git ‘er done! Let’s gather our facts, band together, create new tools, and spread the word to each other. And invite them into our world – if they can keep up. :)

*1,444,920 new cases in 2007


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