e-Patient Dave

Power to the Patient!

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Amazing: THE Tom Peters to join our patient engagement session Tuesday

You can’t make this stuff up. Here I am, a cancer patient from Nashua, New Hampshire who goes around raving enthusiastically about engaging patients in better care, and out of nowhere, tomorrow in a session I’m running, Tom Peters has something to say, and asked to comment. So though he wasn’t planned as a speaker, he’ll be in my session.

Thud.

Tom Peters(That’s the banner from the top of his site, TomPeters.com.) He’s the co-author of the absolute classic business book In Search of Excellence, and sixteen books since then. Here’s his Wikipedia page, that book’s Wikipedia page, his Twitter @tom_peters, his other books.

So, what is mister Management Guru doing, asking to comment at a medical conference? In the interest of time, I’ll interview myself.

What’s this event?

This is at the Eleventh Annual Quality Colloquium, at Harvard, today through Wednesday. It’s a top-tier conference on improving quality and safety in medicine.

What do you mean by that?
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“Health IT can improve care, because information can improve care.”

Twitter friend Alicia Aebersold, at George Washington University, just reminded me of this quick video interview recorded last year. I’d forgotten! But I love what it says.

This spring I did a whole speech on the same topic, 35 minutes with slides. That video’s here.

Folks, do you (yes you, the person in your underpants) know what’s in your medical record? Your kids’? Your folks’? Now’s the time to ask – before those records become important in a crisis.

In my speeches I say “Let Patients Help.” Now it’s your turn: do the helping – help your healthcare providers. Make sure the info at their fingertips is correct. How else can they perform to the top of their training?

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Chinese saying: “Prolonged illness makes the patient a good doctor”

Being on vacation (yay), I’m finding lazy time to dawdle in all kinds of things I’ve postponed. One of  them is the conversation a year ago about my TEDx Maastricht talk, “Let Patients Help,” http://on.TED.com/Dave:

Last night I ran across this, from a Chinese college student named Gao Yixian:

Jul 16 2011: Thank you very much, Dave! It is a very good and brilliant idea. In fact, there is an old saying in China- “久病成良医”, which means prolonged illness makes the patient a good doctor. So let patients help patients!

Love it.

And now, back to the beach.:-)

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e-Patient Resources for Parkinson’s Disease

I’ll add this to my list of patient communities. This is an important project – we need to build, somewhere, a publicly available community list that patients everywhere around the world can access. Some sites on my community page are starting, but we have a long way to go.

Here’s an example of why – a true story from tonight’s email.

Tonight a friend emailed me, grumbling about the utterly useless responses a relative had received, trying to find out the latest thinking about the beneficial effects of bicycling for Parkinson’s patients. He’d even contacted one of the biggest-name hospital/clinics in the world, intentionally doing the e-patient “best practice” of seeking the best authority, and had only gotten links to useless news clips:

This is really interesting (snarl). My brother has what I would call early PD. A bad and recalcitrant tremor is his main problem.  He is a lifelong athlete – marathons and triathlons. He is HIGHLY self educated in the research on PD. His question is:  is the ‘forced’ aspect of the bike pedaling a critical factor in achieving the result? The reason is that 90 rpm is not ‘forced’ for him – it’s easy. But faster than 90 rpm and he bounces off the seat.

He has not been able to get an answer even from researchers. There may not be one yet, but here is Cleveland Clinic’s disappointing response – send him 2 news videos with utterly superficial treatment of the subject!!
Blew my mind. We have a long way to go, Dave.

———- Forwarded message ———-
From:
Date:
Subject: Biking PD study
To:

I asked the Cleveland Clinic if the pedaling had to be “forced” to have benefits. I got a canned response to look at these two videos. I did not find the answer after viewing them–did I miss something? Looks like immediate results that remain for days/weeks. Wadda ya think?

http://www.msnbc.msn.com/id/3032619/vp/26510952#26510952
ABC Good Morning America story with Dr. Jay Alberts

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Let Patients Help, Cost-Cutting Edition, part 1: a bill.

I often hear about how patients are a major part of the cost problem – their “non-compliance,” their wanting everything they can get, wanting it for free, etc.  So, let’s see what happens when a patient who wants to help cut costs gives it a try.

So-called "explanation" of benefits for 10-3-2011
Click to enlarge

I was recently scheduled for a semi-annual test, four years after my treatment ended. I thought, “Hm, could I save costs by getting it somewhere else? Perhaps even find a place with higher quality? Get more for less? That’s what consumers like to do.” It turns out that information isn’t readily available. Next time I’ll hunt, but this was in the middle of my busy travel season.

Anyway, the bill just showed up. Actually it’s not a bill (“THIS IS NOT A BILL”), it’s an “explanation” of benefits. But take a good look at it, folks, and see if this “explanation” helps you answer any of these questions:

  • What was done to me?
  • Which line items were mistakenly overcharged, if any?
  • Which items were listed (and billed) without having actually been done? (That would be insurance fraud.)  The insurance company wasn’t there, so I’m in a much better position to audit.
  • All in all, did I get a good deal, for my $1,736 out-of-pocket co-pay?  And did my insurance company get a good deal?  Because when my $10,000 deductible is used up this year, they start paying.

You’d think they’d want to be auditing this stuff. I’ll call ’em Monday, and see what they have to say. (I wonder if they have the information on which providers have the best costs and quality. That would help both of us.)

The accuracy question isn’t just academic; in 2009 I blogged at some length about significant errors in my billing records, such as conditions I never had. I’ll be glad to help reduce costs, and clean up my medical record, if the information is taken out from under the blankets.

Any more of you lazy consumers out there wanna sign a pledge to do the same?

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First “e-Patient Workshop” – patient groups and their docs starting participatory medicine

As I said Thursday, I spent the week at University Medical Center Nijmegen, an hour’s drive southeast of Amsterdam, where Lucien Engelen heads up a program called REshape – reshaping healthcare with patients truly at the center. I mean, at the center – not just the topic of discussion.

On Wednesday we held the first e-Patient Boot Camp, the six hour intensive, in-depth compilation of topics. That was a thrill – to see an action-oriented academic medical center seriously sinking its teeth into what this all means and what they can do with it, starting this week. And the night before we had a terrific prolog: an “e-Patient Workshop,” conceived and organized by REshape’s Stan Janssen. Here’s what it looked like:

(Stan is standing next to the screen.)

We started with lecture – the basics of e-patient-ness. But this time it was different, because the audience was six groups of patients with a common disease, each with one or more physicians who treat that disease, at that hospital. It was the first event I’ve seen where a hospital got to work on making participatory medicine a reality: patients networking, working closely with physicians, who welcome them as partners.

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