A thousand points of pain

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


Posted in: e-pts resources | patient networks | positive patterns | pt/doc co-care | pts as teachers | reforming hc | trends & principles




13 Responses to “A thousand points of pain”

  1. Paul Levy says:

    As a wise person in Washington once said, “One person’s costs are another person’s income.” This explains why legislative solutions are difficult to accomplish.

  2. Paul,

    If legislative solutions are difficult to accomplish, what’s the alternative for creating change, other than waiting around helplessly hoping?

  3. “A thousand points of pain” – e-patients.net on Healing the US health system (cites #rare disease) http://tinyurl.com/b5rnfr

  4. ePatientDave says:

    @rilescat Your donkey / pachy morons need to read the Thousand Points of Pain http://is.gd/jOvl. Pts must start to DIY :)

  5. Christine Gray says:

    If the legislative system is entangled with entrenched health care interests, as it is, the alternative is publicity, positive and negative, via the Internet. That is the only other way to move things along. The system at its worst works only because physicians or clinics or health insurance companies are confident they will not find themselves and their practices accountable on the morning news.

    and btw regarding “voice”:

    Dave, I’m glad that you received excellent healthcare from a responsive and responsible physician, but many of us did not. There is nothing wrong with writing from the standpoint as an “injured” patient, however, if that is the truth. To do otherwise when you or a family member has experienced unnecessary damage via the current health care system is to “mask” true feelings, to accommodate, as an exchange for allowing a single portion of your agenda to be heard. This “masking” strategy is laid out in last week’s New York Times book review on Booker T. Washington.

    The e-patient movement did not begin because everything was hunky dory. To paraphrase, it began because it could — the Internet offers vast possibilities for shining a light in dark places — and due to a sense of outrage over what was going on. Over the last eight years or more, Americans have become dulled to the possibility of outrage and therefore protest due to mass media and complacency, basic lack of education, and the fact that the workings of government, like the workings of the healthcare system, are made deliberately opaque to the general public so as to allow corporate interests to go about their work in peace and prosperity.

    And look where it’s got us.

    No one really protested the Iraqu War, even though the costs surpass that of the stimulus package. Now, apparently, finally, there is a citizens’ movement to protest housing foreclosure and eviction — to make it public — to shine the light on the folks and institutions BEHIND the financial maneuvering. I cannot imagine anything more convoluted than to be evicted by a bank or lending company which uses your tax money to stay in business while refusing to extend or alter credit.

    Nice gig if you can get it.

    The first step in health care reform is shining the light where the sun has not heretofore shined. Most folks don’t have a CLUE about billing codes, that they are the secondary payor, etc. The New York Times editorial today speaks of rating physicians, i.e., transparency, which has the profession in a panic. That ought to tell you something.

  6. […] that definition of bubble again, and you can see why I recently reached the conclusion that the Thousand Points of Pain give us additional motivation to get to work on our own solutions – while doing whatever we can to […]

  7. ePatientDave says:

    #ths Dammit, go read Thousand Points of Pain post http://is.gd/jOvl. If vendors won’t untangle themselves, empower pts!

  8. RT @ePatientDave: #ths Dammit, go read Thousand Points of Pain post http://is.gd/jOvl. If vendors won’t untangle themselves, empower pts!

  9. […] systems, and I assert that the industry ain’t getting’ it done on their own. As I said in my Thousand Points of Pain post (cross-posted on IBM’s Smarter Planet blog), it’s fine with me if industry vendors come […]

  10. ePatientDave says:

    @staticnrg See my Thousand Points of Pain post. http://tinyurl.com/b5rnfr

  11. slpeterson says:

    Health care reform: a thousand points of pain http://bit.ly/5zxdt

  12. ePatientDave says:

    @serious_skeptic Nope, didn’t just wake up… Being facetious, faux amazed. (My realization post 2/09: http://is.gd/1JxWl)

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