e-Patient Dave

Power to the Patient!

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Information, at the point where it’s needed, can save a life

At the Joseph H. Kanter Family Foundation’s Learning Health System Summit, at the National Press Club in Washington last month, I was asked to deliver a dinner speech about the power of information to improve the effectiveness of medical care – not just for patients, but for every doctor and nurse at the bedside. Because everyone performs better when they’re better informed.

Important: This was my first major speech that’s not about patient engagement per se – it’s about the value of information, to everyone engaged in any aspect of health or care.

Clinicians, policy makers, everyone can only perform at the top of their training if the relevant information is available where and when it’s needed. That’s IT, baby – information technology – but it’s also culture. We need the will to bring the info to the point of care – and to put an end to information that dies on the vine, unused. We can do it!

If you can’t see the video, click here to view it directly on Vimeo.

About the event:
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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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Gimme My DaM Data: The Deloitte health IT guys rock out

Well.

I haz been busy this week, so only tonight did I get around to absorbing this project that my buddy Ross Martin has had in the works for a while.

Remember the “e-Patient Rap” in my “Let Patients Help” talk from TEDx Maastricht? Lyrics by Keith Boone:

"Gimme My Damn Data" coffee mugI wanna be a e-patient
just like Dave
Gimme My Damn Data!
‘Cause it’s MY life to save!

Well, Ross wrote a decidedly non rap riff, set to “Blue Suede Shoes.” He first introduced it (karaoke) at the big HIMSS health IT convention a couple weeks ago, but then he got together in someone’s garage with fellow Deloitters Harry Greenspun and Chris Brancato, with Harry’s son Ben on lead guitar and drums. (Awesome break, Ben!) Dig it:

Better yet, it’s participatory and crowdsourced: they’re collecting clips of you doing a phrase (or more), for the final video! See instructions here.

Lyrics:

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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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“Give em Mom’s Damn Data”: big event on “putting the IT in care transitions”

There’s a seven hour event tomorrow (8-3, ET) that will be live, webcast, tweeted and discussed on Google+. It’s about information transfer during transitions of care. It’s important. Here’s why.

Read Brian Ahier’s post about it on Government Health IT.
Register here.

Anyone with half a brain knows that the right information makes it easier to do the job right. Unfortunately, to a large extent health providers haven’t done anything about getting information into other people’s hands. And harm can result.

Case in point: on July 14 my mom had a total hip replacement in Maryland. My two super-sisters were all over the case, and everything went well. But her discharge to rehab failed. Why? Because those two facilities don’t have HIE: Health Information Exchange. So the rehab place had to transcribe Mom’s information. Manually. As in, retype everything.

As in, typos.

As in, hyperthyroid got mixed up with hypothyroid.

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