e-Patient Dave

Power to the Patient!

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Links for today’s Oracle Health Sciences Innovation Forum

Click to visit event siteI’m speaking today at Oracle’s Health Sciences Innovation Forum in San Mateo, California. They’re into big data and what it can do to create value, and as regular readers know, I love that idea. Heaven knows medicine can use all the “value help” it can get – and heaven knows most of medicine doesn’t think nearly enough about the value of data.

Here are links to the resources I’ll mention:

Also of interest – I may or may not mention it – to optimize consumer value for treatment of my new skin cancer, I published an RFP, specifying what I want from providers. Why? Like more and more consumers, I have high deductible insurance – $10,000 deductible – so I myself am calling the shots.  I’m getting the treatment tomorrow – I’ll be blogging the decision I made, as an outcome of the RFP process.

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Alice’s Restaurant updated: “e-Patient Dave’s PHR”

My buddy Ross Martin MD, an e-patient extraordinaire, member of The Walking Gallery, and song-writer, has updated Alice’s Restaurant in the hopes of starting a movement, as the original did. It’s a fictionalized account of my story. He’s got a sweet voice and astute eyes and ears.

Here’s the post on his songwriting site. On the right side there’s a list of his songs on the ReverbNation site, where the audio lives.

He’s crazy. It starts:

This song is called “e-Patient Dave’s PHR.” It is more or less based on the actual and true story of Dave and his PHR — which is short for “personal health record” — and about how Dave came to be known by the name of e-Patient Dave.

All I want is a PHR
Just like e-Patient Dave
All I want is a PHR
Just like e-Patient Dave
All my information
In the right configuration
So I can choose to share it
Anywhere across the nation
All I want is a PHR
Just like e-Patient Dave

Ross was one of the guys in the garage band that, earlier this year, recorded a version of “Blue Suede Shoes” with the chorus “Gimme My Damn Data.” That post is here.

One for the docta,
Two for th’ nurse –
Y’say you’re try’n to treat me
so don’ make me feel worse
Gimme my damn data… it’s all about me so it’s mine!

Good heavens, Regina Holliday paints murals and jackets with our health stories, and now we have songs about our medical records … should the Journal of Participatory Medicine open an Arts section??

More later. enjoy!

(For the lazy, here’s a direct link to the audio – but I know he’ll love it if you go to his own site so he can count how much we love him!)

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New thoughts on value in healthcare: slides for today’s eHI webinar on chronic conditions

Today I participated in a webinar on chronic conditions hosted by eHI, the eHealth Initiative (NationaleHealth.org). I don’t have any expertise on chronic conditions but they asked for my voice regarding the value of patient engagement – e-patients!

Before me there were two great presentations by diabetes / weight-loss wizard Julie Cabinaw (with the amusing but misleading Twitter handle @Loser_Mama) and cardiac patient Dan Treadwell. An archive of the whole event will be posted soon.

(The webcast used a new technology, ReadyTalk, that had a lot of problems, not least of which was that it has no online audio (dial-in only) and it quickly sold out (“All lines are full”) so people could watch the slides but not hear. There will be an archive of the whole thing, but it still won’t include my slides, because I didn’t send them in soon enough – totally my bad. Thus, this post.)

Here are the slides; below are notes on what I said.

eHI webinar 4-25-2012 on chronic conditions
(Click this link if you can’t see the slides here)View more presentations from e-Patient Dave deBronkart.

Notes on the slides:

[Read more…]

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Busting my buttons: my daughter and the Boston Marathon

Permit me to indulge in excessive joy. On Monday my daughter Lindsey ran and finished the Boston Marathon. Woot.

It was, as they say in Boston, “wicked hot.” 87 degrees, which is about 25 degrees hotter than marathoners like it. So hot that the Marathon allowed people to defer their cherished credentials, to run in 2013 instead; 4,000 took the offer.  So hot that 2,000 people started but didn’t finish. Including both of last year’s winners, men’s and women’s: they started and dropped out before the famous Heartbreak Hill.

She researched. She blogged about the course, her research, and the data on the last hot marathon, 2004. She prepared. And she nailed it. Her first Boston Marathon (only her second marathon ever), and she finished smack in the middle of the pack.

“They say you’re supposed to do it as just a 20 mile run, followed by a 10k race” (10k= the last 6.2 miles), she says. Yeah, except the “10k race” part (at mile 20) starts at Heartbreak Hill. See that big bump on the right side of this elevation map? Yeah, that’s an 88′ climb (27m), like running up a nine story building… after your 20 mile run:

In the Boston Globe an experienced runner said usually when you get to the top of Heartbreak Hill you’re greeted with a cool breeze to carry you to the finish, but this day “The breeze was hot, the water was hot, everything was hot.”

Mind you, it wasn’t a joy; that night she said “I’m never running that course again.” But later I ran into an experienced marathoner at an ice cream place, who apologized for how bad it was that day. Lindsey said that made her feel better :-), and after a good night’s sleep when she read how bad the day was, she realized it was an accomplishment.

Yeah it is.

At a time like this a daddy’s mind goes back to those years of cross country at Salem High, waiting by the course for her to emerge from the woods, yelling “Go Lindsey! You can do it!”

Yeah, you can. You rock.

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Spinal stenosis surgery? Request for e-patient resources.

Addition 4/26: Late in the comments, it turns out this was a wrong diagnosis, but the nature and quality of the discussion isn’t affected by that. Take a look at the issues that came up in my initial research and in the comments. Fascinating!

A friend writes:

Dear Dave,

A friend of mine has to decide if to do a spinal stenosis surgery.

Is there a solid resource to research if that’s a worthwhile option?

Any help, anyone?

Below is the result of a half hour of generic searching. I’d really like to supplement it with advice from other patients and clinicians.
__________

As generic starting info of the “Web 1.0” variety (“read-only” encyclopedias), here are the usual candidates: [Read more…]

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Help TEDMED focus on what patients want. Vote.

Correction 4/12: I’m glad to say that there are in fact several patient speakers at TEDMED. There was a massive communication disconnect in the months leading up to this TEDMED, leading to my impression that there were no patient speakers; I hope to find out how it happened. So I’m editing out those points in the post below. The bottom line remains that we should certainly vote to be sure The Role of the Patient is recognized by TEDMED as one of the Great Challenges facing healthcare.

I apologize to anyone misled by what I wrote because of the disconnect.

Please go to the Great Challenges page
and vote for #19, The Role of the Patient.

The top 20 will be selected. At this writing we’re #4 – down from #1 two hours ago.

See other patient-centered suggestions below.
______________________

The event: A number of SPM members are at TEDMED, the big high-profile conference happening this week at the Kennedy Center in Washington. As I’ve discussed with the conference organizers, I have a great concern that the event is conceived from the old-school perspective: it’s about the business of medicine, not about whether patients are getting the care they need.

In the list of 70 speakers, there is not a single patient. We must vote.  

18 months ago TEDMED opened with a spectacular patient story from Charity Tillemann-Dick. This year there are none.We must vote.

[Read more…]