e-Patient Dave

Power to the Patient!

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“I beat cancer so I could dance with my daughter at her wedding”

I’m thrilled that our government has put up a great new website, www.HealthIT.gov, with tons of info about electronic medical records, both for providers (docs & nurses) and for patients & families. I’m even more thrilled that they had the good sense to drive home the impact with five real patient stories – some good, some bad – where medical records or the lack of them) made a difference.

And I’m REALLY thrilled that one of them is about my daughter and me. :–)  Click the picture to go to the site.

So much of health IT discussion is about the geeky “CIO” (chief information officer) stuff, and loses track of what it’s all about: people’s lives. Congratulations and thanks to the good people at that part of our Department of Health & Human Services – Josh Seidman, Claudia Williams, Lygeia Ricciardi are the three I know best – for this TERRIFIC campaign: “Putting the ‘I’ in Health IT.” Yes.

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Putting the I (or eye!) in Health IT: ONC’s regional meetings

"Putting the I in Health IT" screen capture

Updating again on August 11 at the Los Angeles meeting.

Updated 7/22 – added several resources and these bullets on connecting. What was I thinking, not mentioning this?? Get social:

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This week I attended the second in a series of four regional meetings being conducted by ONC*, reaching out to the Federally funded organizations that are making health IT a reality throughout the country. I was the Wednesday lunchtime keynote speaker. (What a time slot – there’s nothing like a “How I almost died” story at meal time! But the message came across, deeply. Great people, very dedicated!)

Here are links to resources I mentioned in my speech, and a few more:

[Read more…]

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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).