e-Patient Dave

Power to the Patient!

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e-Patient Connections: A business and policy conference with real value

I think e-Patient Connections is the highest value business conference for how patient engagement can transform healthcare. Conceived by former pharma marketer Kevin Kruse, last year it attracted a hybrid audience: almost half of attendees were in public health and non-pharma sectors. All came to understand connecting with empowered, engaged patients. It was a high quality event, with smooth logistics and facilities, despite being its first year with a skeleton staff.

This year I’m speaking in the opening keynote on 9/28, and I gladly agreed to participate in this new video. I want to say why.

As regular readers know (here and on my personal blog and e-patients.net), I think healthcare transformation is both a need and an opportunity. We desperately need to stop the cost spiral, we need to much more effectively connect clinicians’ skills with the patients and families who need them, and we need to improve quality and eliminate medical errors.

Innovation has turned many industries inside out – why not healthcare?  Because we’re missing something. When smart people work hard for a long time, unsuccessfully, it’s a good bet they’re overlooking something fundamental. I believe it’s that the engaged patient is a valuable and underutilized resource, and most businesses don’t get it. So they operate, leaving a worthy resource untouched. This resource blindness constitutes waste.

E-Patient Connections 2009 taught attendees how to understand the value of connecting authentically with e-patients. I encourage people to attend.

Full disclosure: I receive no fee from this conference, just travel expenses. My speech will be inside the keynote by Klick Pharma, a client who has me on a small quarterly retainer. I support this conference for exactly the reason I said – it’s a smart, valuable event, addressing a vital aspect of making healthcare more effective and more efficient.

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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!