e-Patient Dave

Power to the Patient!

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A Visit to the Emergency Department

Click to go to Hospital CompareLast night my wife and I had occasion to be consumers in the healthcare system: a visit to the E.R. (nowadays called the E.D.) for a flare-up of her foot problem. We used digital resources in two ways: digital x-rays, and hospital quality data provided by the government – your tax dollars at work, to enable informed choice, if you use it! We did.

History:

  • 11 years ago Ginny broke her left foot just before we went on a long trip. The break wasn’t obvious at the time – she’s had foot and leg pain for decades – but during the trip it got really bad. A nurse in Belgium wrapped it tightly, and by the time we got home, it was back to normal, pain-wise – as okay as it ever is.
  • In 2008 a flare-up led us to get a consult at Beth Israel Deaconess in Boston. The ortho diagnosed a  non-union fracture, untreated prognosis – a break that was not recognized at the time and “healed” wrong. The x-rays also showed extensive bone cysts – fluid-filled holes where there should be solid bone. This would make it hard to fix the bones because there’s not enough bone to screw anything into. So, at the time, the patient (Ginny) and doctor agreed on watchful waiting. The cysts also weaken the bone, contributing to pain.
  • Life has gone on, with the ups and downs that are familiar to anyone with chronic pain.

Current episode and decision to act:

[Read more…]

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Announcing: e-Patient Boot Camp!

Patient engagement is reshaping healthcare. Learn how. Learn why. Learn what to do.

I’m thrilled to announce the Next Big Thing (for me anyway!): a full day workshop for doctors, patients, businesses, investors, governments – about the e–patient movement. I’ll deliver it anywhere there’s an audience.

Born of the constant encouragement people have given, it will be launched next month in Silicon Valley. Visit epatientdave.com/bootcamp for the full story.

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New video: “Over My Dead Body”: Why Reliable Systems Matter to Patients

Title slide. Click to play video.

Clicking the image (or this link) will download a small file (.asx Windows Media) that plays the video from AHRQ’s archive of the day. Slides aren’t included in the video; they’re here. (URL updated 8/22/15 due to AHRQ site reorganization)

About the talk: An hour long plenary address, June 2010. I don’t often get a full hour to speak, but when I do, I can really cover the landscape.

About AHRQ: The Agency for Healthcare Research & Quality is a terrific Federal agency that administers grants and contracts for health-related projects, including health IT. This was a high quality group of smart people who manage significant projects. [Read more…]

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“Laugh, Sing, and Eat Like a Pig”: my cancer journal

Front cover Full title: “Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it)

This book is a digest of the cancer journal that I kept on CaringBridge.org in 2007, when I almost died of Stage IV kidney cancer, but survived. It’s my real-time notes about what it felt like at the time, especially how I used my attitude and mind to help all the medical efforts the doctors and nurses were doing. I had an incredibly supportive community of friends and family who posted responses every day, and many of those are included too.

What’s the title about??

It’s the approach I chose to take to the news that I had a lethal cancer – a summary of the advice I got in the first few weeks after diagnosis, before I even started my journal:

  • “Laugh” is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness as Perceived by the Patient
  • “Sing” is the advice my doctor gave. I had asked if I should drop out of my much-loved championship chorus to save energy, but he said, “You don’t want to stop doing life activities that you love – it sends the wrong message.” Wow. So, okay, laugh and sing! Not bad. (More on what “Sing” meant to me in this post.)
  • “Eat like a pig” refers to the diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

In my online community I told people “If I ever write a book about this, that’s what I’ll call it.” And I did.

Admittedly, that’s not a conventional approach to a deadly disease. But that’s the point. And the whole story’s true.

Why a book with this message?

4,000 people a day (in the US alone) discover they have cancer, and face that moment of “What on earth do I do NOW??” I know that feeling. Some look for what to do next; others don’t even think they can do anything — they just think they’re screwed and go into depression. This book is about hope, getting it in gear, and going “e.” (E-patients are “empowered, engaged, equipped, enabled, and educated.”)

What’s the vision?

I’m committed to a world where healthcare works better – and not just for patients but for the people whose work is to deliver care. I agree with the words of Warner Slack MD, who said patients are “the most under-utilized resource” in health IT, and I think it applies to all of healthcare.

Healthcare today has unprecedented challenges. Let patients help (which a year later became my TED Talk, then my next major book).

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“The Quantified Patient”: my talk at “Quantified Self” show&tell, December 2009

Cross-posted from e-patients.net

The Quantified Self (aka “QS”) is an informal San Francisco based group of people who are tracking one thing or another about their lives. (Could it exist anywhere else??) They have occasional “Show&Tell” meet-ups, with elbow-rubbing and a series of quick talks, 10-15 minutes each.

A few weeks ago I was in town for a talk at the northern California chapter of HIMSS on personal health records. Matthew Holt of Health 2.0 and The Health Care Blog told me QS was meeting that Monday, at the headquarters of Wired magazine.

I registered, and at the end it asked “You wanna present?” I never say no to that, though I didn’t know what I’d talk about.

Turns out host Gary Isaac Wolf was really interested in the little spreadsheet where I’d tracked my tumor sizes as my treatment progressed. :–) So in the context of “quantified self,” my topic became “the quantified patient.”

This is an informal production – audio from a camcorder (no mic) blended with my slides and a few other images. It was fun: a responsive, engaged audience. Thanks to the QS gang for the opportunity.

Related notes –

  • QS is a project of Wired‘s Gary Isaac Wolf (Associate Editor) and Kevin Kelly (Founding Executive Editor). “KK,” as he’s known, is also on the advisory board of our Journal of Participatory Medicine.
  • KK’s videos on Vimeo include several others from that night. (Arg: the room was so full the camera had to shoot the speakers from the side – no slides!)
  • Among the other presenters that night:
    • Spectacular e-patient and #getupandmove entrepreneur Jen McCabe
    • Spectacular human and entrepreneur Esther Dyson, also on JoPM’s advisory board.

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Give patients (that’s you) access to all their (your) data – so they can help

I’ve just returned from Toronto, where I gave the opening keynote at the Medicine 2.0 Congress. It was titled  “Gimme My Damn Data,” which is an unconventional title for an opening address, but I meant it. Here’s why.

Thanking Gunther Eysenbach for inviting me
Thanking Dr. Gunther Eysenbach for his extraordinary decision to have a patient open a medical conference

A new world of participatory medicine has been growing for years, largely unnoticed. In this new world, healthcare is not a one-way street: empowered patients are engaged in their care, actively collaborating with their physicians, sharing responsibility for their care. The providers (doctors, nurses, etc) are still the providers, but the patients share in both the knowledge and the responsibility for how it all turns out.

And, certainly, the decision making.

This requires that patients have access to their medical data. (Whose data is it, anyway?) As my primary physician Danny Sands, MD MPH, says, “How can patients participate if they can’t see the data?” But in today’s world (America and, I’m told, many other countries), access to our health data is anything but easy.

In the USA the HIPAA act guarantees that we can get it – but it can take months, which is absurd in a crisis. And, law or no law, Deven McGraw of the Center for Democracy and Technology reports that problems with data access are the #5 complaint #3 HIPAA complaint* reported to the Department of Health and Human Services.
* Deven updated this in an email, saying “it’s consistently the third based on this HHS source.”

Clearly, what patients want and are asking for is not an accomplished reality throughout the world today. This is unacceptable. Lives are at stake. I think people – especially sick people – have a right to take their records and seek care elsewhere. (And that’s beyond the basic issue of a person having access to their data on general principle. Imagine if you couldn’t see your banking information!)

Some providers are great about this. My own medical records, which I can read anytime, are on PatientSite at Beth Israel Deaconess. But there’s still no way for me to get all the data out: I can export some information, but not all. And my hospital’s much better than most: most have no way at all to give you your data – except by fax machine.

There are many technical issues to be ironed out, not the least of which is what format the data should be in. I want to participate in projects to make something happen in this area, something all citizens can get their hands on. If you’d like to partner with me on such a project, contact me.

My slides from the talk should be online within a few days. I’m glad to say that my talk was well received, but to a certain extent I was preaching to the choir. We have much work to do.

So yeah, I meant it: give us our data, and I meant it strongly. No kidding: unleash our data!

It’ll take time. Let’s get to work.

—Addition 9/22/09:

I do this with some trepidation, because the slides are not the talk, they’re just the visual aids. But so many people have asked, I’m posting just the slides.

I also haven’t taken the time to touch up the animations and slide-to-slide transitions; if a slide doesn’t change after 5 seconds, click or right-arrow. (Some of the animations are subtle, e.g. the bursts that show where my metastases were.)