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The following blog post is by e-Patient Dave deBronkart, a prodigious blogger in the Health 2.0 movement and patient advisor to the Patient-Centric Primary Care Collaborative (PCPCC).

I’m an e-patient: one of the new breed of patients who are “empowered, equipped, engaged and enabled,” a breed first spotted in the wild by “Doc Tom” Ferguson, founder of http://e-patients.net. Two years ago a routine shoulder x-ray spotted something in my lung; it was metastasized kidney cancer, and it was so far along that my median survival time was 24 weeks.

This kind of news focuses the attention. One rapidly gets very interested in “What’s gonna work? Like, right now??”

I got great care and, although my type of cancer is rarely gone forever, I appear to be completely well. I didn’t yet know about Ferguson, but I was a specimen of what he’d seen: along the way I used every aspect of internet technology I could, from online medical records to a great patient community.

It turns out that my primary physician, Danny Sands, is a member of Ferguson’s e-patient scholars working group http://e-patients.net/about-e-patientsnet, and I have since become a member too, blogging frequently there as well as on my own blog, The New Life of e-Patient Dave http://patientdave.blogspot.com/.

I entered my disease with, and emerged with, the eyes of a business thinker who’s watched tech trends for decades. I’ve watched new technologies start, fail, succeed and expire. So, for the past year as I’ve explored the research done by Ferguson’s group, my business mind has wondered: what’s it going to take to transform it in a way that gets traction?

American healthcare has become a massive, tangled ecosystem, where no matter what you try to change, somebody screams in pain. I’m starting to think we’ll get more results by building something fresh, perhaps something disruptive, patient-centered from the ground up. In February I expressed my concern with this post.

A Thousand Points of Pain

http://e-patients.net/archives/2009/02/a-thousand-points-of-pain.html

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 benefited phenomenally from a brilliant cancer treatment. But when I read the e-patient white paper on this site, “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 was 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 healthcare establishment 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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5 Comments
 
September 21, 2014
6:38 am

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April 1, 2009
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I cited this in my next post about EMRs, Imagine someone had been managing your data, and then you looked. Not the catchiest title, but it ties in with a precursor post.


Posted by: e-Patient Dave
 
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