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 [...]]]> 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!

I’ve never [...]]]> 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.

The problem: the layout has interruptions.

← I’m told eBooks are easiest when it’s a simple flow of text, like the one at left. People can zoom to find the text size that’s best for them on that reader. (Kindle, iPad, whatever.)

But that kind of flow doesn’t work well for complex layouts, with illustrations and sidebars.

1. Illustrations can interrupt a paragraph, like the example at right. →

How do other ebooks do this?

(To me it seems simple – the text should just flow around the illustration the same as they do for a web page. But I hear it’s not that simple.)

2. Sidebars are boxes of text that interrupt the flow of the story, like this example [left]:

For e-readers, do people move sidebars to anywhere they want, e.g. between paragraphs? Or group them between chapters? Or put them at end of chapter, and insert a link to them in the text stream?

The trickiest part is when it’s a big sidebar. In the example at right from my book, the box spans two pages. Should that be inserted at end of chapter, with a link in the stream at the right place?

Advice, folks?

Thanks for the incredible response!

Click to order.

Enjoy.

Thanks!

Well, my friend Mark Graban, author of the excellent [...]]]> 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!

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 [...]]]> 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.

Last Tuesday I testified at a policy meeting in Washington. One point that came up was the frequent wrong impressions patients encounter among medical staff regarding medical records. The truth is, you’re entitled to a copy of your medical records. Don’t let anyone tell you “That’s not our policy”!

We also discussed [...]]]> Teaching HIPAA with a Seinfeld clip

Last Tuesday I testified at a policy meeting in Washington. One point that came up was the frequent wrong impressions patients encounter among medical staff regarding medical records. The truth is, you’re entitled to a copy of your medical records. Don’t let anyone tell you “That’s not our policy”!

We also discussed how useful it would be if we had some quick, informative, entertaining training tools to convey points like that.

Well, why wait for an act of Congress? I made one up. Click to view, print, or download the full page PDF (413k).

Share freely.
________

Trivia:

• The clip in this flyer is from Seinfeld episode #139, “The Package.” It was first broadcast on October 17, 1996, eight weeks after HIPAA was signed into law.
• Your right to your records is specified not in the law itself, but in the regulations that were written by the Executive Branch to implement the law. (That’s what regulators do: they write the regulations.)
  
• So when this episode aired, Elaine was not entitled to her record. Today she would be.
  

Please rearrange your life and join me, Thursday night at Scullers Jazz Club!

The news: I’m announcing my first book. It’ll be out in June. See cover art at left.

It’s my story then and now: excerpts from my online CaringBridge journal, interwoven with what I’ve since [...]]]> I have exciting news and an invitation to all of Boston:

Please rearrange your life and join me, Thursday night at Scullers Jazz Club!

The news: I’m announcing my first book. It’ll be out in June. See cover art at left.

It’s my story then and now: excerpts from my online CaringBridge journal, interwoven with what I’ve since learned about e-patients and participatory medicine.

The title reflects the mind-powered approach I took to my “prognosis is grim” disease. (More on this below.)

The invitation is for all of New England to come celebrate and honor a singer who was a huge, powerful force during the course of the disease: my sister Suede. (Yes, that’s her name.)

With four CDs and a live DVD to her credit (listen to her tracks here), Suede is an independent artist with a phenomenal stage presence. Be prepared to be owned by the diva for the entire evening. You’ll see.

She’s performing Thursday, April 22 at Sculler’s Jazz Club in Boston. One show only. Tickets: http://www.scullersjazz.com/attractions/detail.htm?id=839

All New England, please come join us! It’s a dual celebration – Suede rarely plays Boston (she’s more often found on Olivia Cruises), and I’ve never published a book. April 22, 8 pm. Best seats go to those who buy the dinner/show package.

Below is a basic Q & A about the book (and Suede’s involvement). “Do it!,” as Suede says during one of her songs: buy tickets! Come! :-)

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
• “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.
• “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.

Admittedly, “laugh, sing and eat like a pig” is not a conventional approach to a deadly diagnosis. But that’s kind of the point. And the whole story is true, every word.

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 does Suede have to do with it?

“Laugh Sing” is about facing the unfaceable with power and grace, and nobody was a stronger influence than my sister Suede.

She taught me to have a powerful relationship to the disease (all explained in the book) and not be owned by it. She taught me what she learned about facing death from her years working with patients in the AIDS epidemic. She brought people from her extraordinary fan base to join our support group on CaringBridge.

Most incredibly, she organized an impossible effort to solve another challenge I’ve rarely discussed: The whole time I was sick we owned an extra house.

We’d lived in the Midwest for a while before something told us we had to get home to New England. We put that house up for sale in 2006, just as the market hit the skids, though nobody knew it yet; we thought it would sell soon.

Then I found out I wasn’t getting the job that was 99% (not 100%) certain. So for months I owned two houses with no income. I found a job. And three months later I learned I had Stage IV cancer.

The value of both houses started dropping. 30%, eventually. So, while I was sick we also had carrying costs for two houses on a one-house budget. And not even any showings on the old house. It felt crushing, but we were focused on just staying alive. First things first.

Then, we got an offer. For $18,000 less than we owed.

What did Suede do? She organized an incredible campaign and put on a benefit concert – she and her community raised the $18,000. So, in September 2007 we sold that house and got the official word that I’d survived. It was a very good month.

Join us.

Celebrate the book, Suede, and life!

You can see what a powerful, wonderful, amazing woman this soulful singer is. She will own you for that evening.

At the benefit concert my physician Dr. Danny Sands and wife Libby came to the first half of the show. He was blown away: at halftime they were trying to decide which CDs to buy, and they decided they had to stay for the second half to hear more songs.

That’s how good she is. (He later said “We came for you, but we stayed for Suede.”)

Let’s sell out the house! Bring friends! Rearrange your life for this rare show – buy tickets. Celebrate life!

The speech was titled “Gimme My Damn Data.” Video of this talk and others is on my Speaking page.

Needless to say, I’m thrilled that the NLM will be [...]]]> There’s an interesting conference April 6-7 in Bethesda Maryland, sponsored by the National Library of Medicine and the Friends of the NLM: “The ePatient: Digital and Genomic Technologies for Personalized Health Care.” It’s about 70% sold out – almost 350 of the 500 seats are gone.

Needless to say, I’m thrilled that the NLM will be hearing about e-patients.

A star-studded cast includes

• Day 1 keynote by Dr. David Blumenthal (National Coordinator for Health IT)
• Legendary figures Uwe Reinhardt of Princeton and Dartmouth’s Jack Wennberg
• Day 2 keynote by 23andMe’s Dr. Nicholas Eriksson, PhD
• Health Affairs editor-in-chief Susan Dentzer
• Many more (see full list).

I’ll be on a panel on day 2.

Registration is open to the public for $395; limited scholarships are available. Register online here. For scholarships contact Mirjam Krull.