{"id":1336,"date":"2009-02-14T20:37:35","date_gmt":"2009-02-15T01:37:35","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=1336"},"modified":"2009-02-14T20:37:35","modified_gmt":"2009-02-15T01:37:35","slug":"a-thousand-points-of-pain","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/02\/a-thousand-points-of-pain.html","title":{"rendered":"A thousand points of pain"},"content":{"rendered":"

Cross-posted from my own blog, and then some<\/i><\/p>\n

E-patients, listen up. We have work to do, work we can <\/span>do.<\/p>\n

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.<\/p>\n

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

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.
\n
\nFirst, 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.<\/p>\n

Now imagine that it’s an economic knot, and every scream is a billion dollars <\/span>of pain.<\/p>\n

And now imagine there are a thousand <\/span>strings in the knot … a thousand points of pain.<\/p>\n

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<\/i> 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<\/i> of money at stake.<\/p>\n

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

$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?<\/p>\n

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<\/b> (1\/3 of $2.4 trillion). Somebody would be spending $800B less, and somebody would be getting $800B less.<\/p>\n

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.<\/p>\n

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 <\/span>every six hours<\/span>.<\/span>* We need<\/span> 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<\/span> common disease? Rare Disease Day is Feb. 28.<\/a> Might be a thousand points of pain every hour<\/span> \u2013 in the US alone.)<\/p>\n

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.<\/p>\n

The thousand points of pain will work on their aspect of it, and we need<\/span> 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.<\/p>\n

So let’s get moving \u2013 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<\/em> into our<\/em> world – if they can keep up. :)<\/p>\n

*1,444,920 new cases in 2007<\/a><\/span><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Cross-posted from my own blog, and then some E-patients, listen up. We have work to do, work we can do. 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