Archive for July, 2009

What do YOU think they mean by “health reform”?

July 28, 2009 · Filed Under general, news & gossip, policy issues, reforming hc · 5 Comments 

After hearing about 800 million mentions of “healthcare reform” in the past couple of months, this weekend I visited my normal (not-HC-geek) family in Maryland for Mom’s 80th birthday.  (Woohoo! Large clan descends, six siblings and most of the grandlings.)

Inevitably the subject of reform came up, and I realized not everyone is aware of the discussion. And of those who are, not everyone is sure what the heck they’re all talking about. What do you think they’re talking about on Capitol Hill?  Is it: Read more


Guest post on The Ideal Doctor/Patient Relationship (Kent Bottles, MD)

July 23, 2009 · Filed Under general · 23 Comments 
Kent Bottles MD

Kent Bottles MD

Guest post by Kent Bottles, M.D., President of ICSI.

Preface: The Institute for Clinical Systems Improvement is a Minnesota-based non-profit that “brings together diverse groups to transform the health care system so that it delivers patient-centered and value-driven care.”

Needless to say, I like how they think. (Good taste, too – they invited me to do a 90 minute keynote at their conference, May 3-5, 2010 in St. Paul.)

Anyway, Thursday morning on Twitter, @KentBottles retweeted this:

@ICSIorg: The Ideal Doctor/Patient Relationship:
Can Doctors Ever Know What Will Benefit the Patient?

Son of a gun, he’s writing about a book Patient, Heal Thyself that was the subject of a post here in January. The book takes a controversial position, going to the core of who’s responsible for what in the patient-provider relationship. And that’s at the core of participatory medicine. So we’re cross-posting Kent’s thoughts here.

The subject gave him a headache. You? –ePD
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A Participatory Medicine Story

July 22, 2009 · Filed Under e-patient stories · 1 Comment 

The nascent field of Participatory Medicine is currently in the ”debating and defining” stage.    It has been tentatively defined by the steering group of the Journal of Participatory Medicine as: …a cooperative model of health care that encourages and expects active involvement by all connected parties (health care professionals, patients, caregivers, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health.

Much of this definition will be fleshed out by sharing examples and anecdotes which, in some way encourage or inspire others, whether patients or providers, to begin functioning in a more participatory mode.

I was treated to an example of this today:  I founded an online health information service to which a client sent the following question:  “Would a low Glycemic Index diet affect macular degeneration in any way?”

My answer was: ”I didn’t know, but would check with one of my colleagues in the Jones Eye Institute“, an Ophthalmic Institute that is a part of the University of Arkansas for Medical Sciences.   In a short time, I received the following reply from my friend in the Ophthalmology Department:

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Shared Kismet: Wikipedia and the NIH

July 16, 2009 · Filed Under positive patterns · 25 Comments 

The National Institutes of Health hosted a Wikipedia Academy today to train scientists, communications staff, and other NIH staffers in how to contribute to what has become a top source for health information in the U.S.

(For more details, please see the NIH press release, a Wikipedia project page, and a Wikimedia Blog post.)

The NIH communications team invited me to observe this continuation of the conversations we had started about participatory medicine in June and September 2008. It was amazing to be there to see these two learning cultures meet for the first time. Read more


Civil rights activist Dorothy Tillman vindicated
a year after arrest for demanding medical records

July 15, 2009 · Filed Under medical records, news & gossip, policy issues, reforming hc, trends & principles · 15 Comments 

Important addition 7/16/09  6:40 pm EDT:
Be sure to read the HIPAA clarification by commenter “SLC” below, and any subsequent discussion. Dorothy Tillman was requesting her aunt’s records, not her own. This doesn’t change the need (IMO), but it does put a different light on the event.

This is a tiny item, which we might normally put in our “Found On The Net” sidebar. But this is a big one, and a sign of things to come.

We missed it at the time, but Vince Kuraitis’s must-read blog related in March that a year ago…

Frustrated after an overnight stay in the ER which she said yielded “little treatment”, she requested a copy of her aunt’s medical records before leaving. When she was told that it was hospital policy to request records “in writing”, Dorothy escalated her requests for the records. Refusing to leave without the records, she was brought to the floor by security guards and arrested on charges of criminal trespassing….

Vince relates how today’s HIPAA regulations, written in the stone age (relatively), says providers must give you your records, but they can take a month to do it. (And if they want, they can say that’s not enough and take another month.) When someone needs care, that’s not enough.

Significantly, last Friday the Health Data Rights movement gained its 1,000th endorsement. A movement has started. Add your name!


E-patients in U.S. News

July 14, 2009 · Filed Under found on the net · 1 Comment 

U.S. News & World Report’s Best Hospitals guide features 3 articles of particular interest to e-patients:

Getting Medical Advice on the Web from Other Patients

Would You Share Your Health Information Online?

Great Medicine Needs Committed Patients


I’m sick of hearing Washington talk about savings “over ten years”

July 10, 2009 · Filed Under policy issues, reforming hc, trends & principles, understanding statistics · 9 Comments 

I am sick of hearing politicians and money-making parties talk about savings projections “over ten years.” It’s STUPID. We’re stupid if we listen.

Nothing (and I mean nothing) happens as projected ten years ago, not even five. It’s fiction; it’s a bogus way to inflate modest figures.

This is the same issue as e-patients understanding the statistics in research results, so we don’t get buffaloed by spin doctors.

Cutting through the spin isn’t always trivial but it’s also not rocket science. The basic trick is to break everything down into raw numbers using simple arithmetic. When somebody talks about $100B in savings over 10 yrs, think: That’s about $10B this year, out of a total US healthcare tab of $2.4 trillion. Oh wow (not): 0.4%!

Case in point: this week’s “Hospitals Reach Deal with Administration” (Washington Post):

The agreement that three hospital associations reached with White House officials and leaders of the Senate Finance Committee is the latest in a series of side deals that aim to reduce the cost of revamping the nation’s health-care system and to neutralize influential industries that have historically opposed such reforms.

Reduce the cost of revamping healthcare?? Folks, the generally agreed figure is that US healthcare costs per capita are 50% higher than other developed countries. 0.4% is a joke, a diversion. To inflate it, multiplying by ten, makes it a cynical diversion, a PR smokescreen.

But as I say, we can see through it – and I mean all of us, citizens, journalists, everyone. Stories like that get no traction if journalists see through the smoke; great training on that, with examples, is presented in the informative article discussed in our Making Sense of Health Statistics. It has great anecdotes about how policy people, journalists and even doctors very often misunderstand statistics, with good concrete advice about how to correct it.

And if you want to get a little deeper into it, Tim Berners-Lee (inventor of the Web) gave a phenomenal talk at TED this year on the future of the internet. He says the next great potential of the internet will come from new analyses of all the data in the world, and we can’t do that if the Web just contains other people’s interpretations and summaries. His talk ends with a rallying cry: “Raw Data Now! Raw Data Now!”

Use your arithmetic skills; don’t settle for ten year figures. You can do it.

Your first assignment: when you hear someone say “over the next ten years,” divide by ten.


The Economist picks up the meme again

July 9, 2009 · Filed Under found on the net · Comment 

I suspect this has caught the attention of  many of our readers, but I’ll emphasize it anyway.  The Economist often comments on technology and health-care. Recently, they talked up Health 2.0 a bit.  What I was most struck by is the handful of comments.  Most focused on how the Economist piece helped emphasize the shifting relationship between patient and provider, as well as the need for engagement!  Wonderful stuff.


Participatory Medicine at PdF09: Can we get a do-over?

July 8, 2009 · Filed Under reforming hc, trends & principles · 25 Comments 

The poli-tech tribe gathered in New York last week for the Personal Democracy Forum and, as Craig Newmark put it, welcomed “our new nerd overlords.”

Esther Dyson, Jamie Heywood, Rep. Jerry Nadler (D-NY), and I were asked to take on a breakout panel entitled, “From Participatory Politics to Participatory Medicine: The Coming Revolution in Health Care.” Cool, right?

Jerry Nadler joins Esther Dyson, Jamie Heywood and Susannah Fox to talk about "From Participatory Politics to Participatory Medicine" at Personal Democracy Forum 2009

Esther Dyson, Jamie Heywood, Jerry Nadler, and Susannah Fox

Via email, Esther suggested we skip the usual speeches and just tell the audience the questions we’d like to be asked and have a truly participatory session:

  • Jamie was going to talk about PatientsLikeMe, HealthDataRights.org, and the power of patients to take control of their own data.
  • Esther was going to ask how openness, transparency, measurement, and sharing of data affect health care.
  • I was going to talk about which tech trends might forecast higher (or lower) levels of involvement by all Americans in both participatory medicine and participatory democracy.

Then Rep. Nadler arrived and said he’d been told that this was a panel about health care reform. Well, kind of. Not really. But we had to get started.

It didn’t go well. Read more


Dx: Revolting.   Rx: Revolt.

July 1, 2009 · Filed Under general, hc's problem list, medical records, policy issues · 22 Comments 

Tuesday night, endorsement #906 on HealthDataRights.org came from a Judy Beckman, who says:

“I agree all the way I cannot get MY records unless I pay for MY records $1.00 per page WHY WHY these are MINE???????????”

Indeed, why? Whose data is it, anyway?

This spring I’ve been learning (slowly) about HIPAA – the immense and complex 1996 Health Information Portability and Accountability act – it’s become increasingly obvious that the law’s intent has just plain gone sour.
Read more