e-Patient Dave

Power to the Patient!

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When a patient speaks to patients

As I build my new career in healthcare, speaker fees are my main income. Here’s one I did for free.

Usually when I speak, one of the first things I have to say is “Trust me, your time will come. ‘Patient’ is not a third-person word.” Well, I got to skip that part in June when I spoke to a bunch of people who already have my disease. And boy did we surpass the normal subject matter.

The event was the third annual Kidney Cancer Symposium sponsored by the DF/HCC, aka the Dana Farber / Harvard Cancer Center. That mouthful includes my hospital, Beth Israel Deaconess. Speakers included my doctors, surgeon Andrew Wagner and oncologist David McDermott. (With MDs and Mxxx’s up the wazoo; I love those guys but I gave up on keeping tabs on their credentials. To me they just saved my life.)

They invited me to speak about being an e-patient. Couldn’t turn THAT one down. 35 minutes:

Immense thanks to them for making this event FREE (including lunch) to all patients, and offering the video for free distribution to all who weren’t there.

They say the videos of other talks will be available on their site shortly – with full credentials for the doctors, probably. :–) Thanks to them for letting me have it first!

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eBook experts, advice please: Best way to convert complex layouts?

Update: the questions were answered (thank you all!) and the book’s now available on Kindle. Buy some now!

We have many, many requests for a Kindle, eBook (Sony) or iPad version of Laugh, Sing, and Eat Like a Pig, and the time has come to git ‘er done. BUT (and it’s a big but), for this book there are decisions to be made, so it’s time to crowdsource: what’s our best approach?

I’ve never done this, so correct me or make suggestions. [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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Unboxing “Laugh, Sing and Eat Like a Pig”

For reasons I’ll never understand, “unboxing videos” are a big thing these days: some geek will turn on a camcorder while they unpack some cool new gadget they just received. Examples: Unboxing the iPhone 4 (simplistic, unedited, 1:29), Xbox 360 Unboxing and Review (slick, fancy, edited, 5:58).

Well, my friend Mark Graban, author of the excellent healthcare improvement book Lean Hospitals, just received his copy of my new book Laugh, Sing and Eat Like a Pig (Amazon), and he was so excited he decided to do an unboxing video of it.

Enjoy. :–)

For more information see the book’s web pages. Thanks, Mark!

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Public speaking: “Your delivery was spectacular.”

Speaker fees are how I fund my work, allowing me to do the research and learning that inform my talks, and allowing my participation on behalf of patients in policy meetings in Washington.

I want to be hired for more speaking engagements, so I’d like to share some feedback I just got.

Today I delivered the keynote address at the 13th annual ICSI/IHI Colloquium. ICSI is the Institute for Clinical Systems Improvement, and IHI is the Institute for Healthcare Improvement. Both are magnificent organizations of smart caring people devoted to, well, Improvement. :–)

In the audience was Jim Conway MD, Senior VP of IHI, a tremendous speaker himself. Afterward, he wrote:

“Your content was great, your slides most impressive, and your delivery spectacular. I have no doubt – there are many in the room who are in a different place now because of you.”

That’s my purpose in every talk: to leave people in a different condition than when they walked in. My goal is to awaken new possibilities, speaking on behalf of patients everywhere – I’d even dare to say, I aim to leave people with a different view of life.

Kent Bottles MD, President of ICSI, followed up the next day with these kind words:

“e-Patient Dave gave the best keynote I have heard in years at the ICSI conference in the Twin Cities. If you want to learn and cry, book him.”

On May 12 on the ICSI blog Kent’s colleague Gary Oftedahl MD added:

“…shaking those of us in health care up to the need to pay attention, and ‘use’ the expertise and experiences of our patients.  I’ve heard no one in over 30 years in medicine who has so passionately and personally captured the essence of this powerful message”

If your organization would like to hire me:

  • My schedule of appearances is here
  • Videos of past talks are here
  • Testimonials are here
  • Contact information is here.