Coverage of ePatient conference at the National Library of Medicine

This spring I had the thrill and honor of being invited to speak at the National Library of Medicine in Bethesda, Maryland. Why? Because they actually had a conference about e-patients.

Yes, the U.S. National Library of Medicine, part of the National Institutes of Health, had an e-patient conference.

And they brought all the brass. Here's the inside front cover of the current issue of Medline Plus, their (free) magazine: (click to enlarge)

This was one of several times I found myself crossing paths recently with David Blumenthal. Funny, when he was a doctor at Mass. General I never saw him, but now I see him often.

The most fun was meeting Dr. Lindberg, quoted in the article. In every speech I cite something he said that's quoted in the e-Patient White Paper, about how impossible it is for doctors to keep up with the information explosion:

"If I read two journal articles every night, at the end of a year I'd be 400 years behind."

That's one of the most potent quotes to open people's minds to the power of activated, engaged, e-patients. Physicians are overloaded and have thousands of conditions to track; you and I only have our own conditions. They must go wide; we can go deep.

The really fun thing is this: sometimes a skeptic would question Dr. Lindberg's statistic, saying "That's not really true - it's probably different today." Well, now I can say "When I had dinner with Dr. Lindberg this spring, I asked him about that. He said it is different: it's much worse now."

Here's to e-patients - and here's to the amazing realization that these great academics are noticing!

It's my Drop Dead Date plus three years. Thppppt!

Three years ago today was "razzberry day," aka Drop Dead Date. So, today on my CaringBridge journal I posted this picture.

Huh?? Patience, my lovelies; all shall be revealed:

At diagnosis on January 11, 2007 my median survival was 5.5 months, which predicted an "expiration date" of June 26. On that date all my buddies gathered at noon eastern time and blew razzberries (Bronx cheers) at Death as we zoomed past it and into the future.

Here's an email Mom sent yesterday to my siblings:

"Hi, all - Saturday, June 26 is the 3rd anniversary of Dave's beating his "Drop Dead Date" of the average 5.5 months survival time after diagnosis of his particular brand of cancer. I personally plan to give the razzberry salute at noon, again, to commemorate the day, and invite you to join me...

"He's at a conference in SC, home Sunday night; his book Laugh, Sing, and Eat Like a Pig is coming to Amazon SOON. I've spent the past few days doing a bit of proofing for him, and reliving the story; some tears, some giggles, lots of strong reminders of how and where we all were 3 years ago, dealing with HIS cancer, each in our own way. And the book also has much of where he's been since then... I'll (personally) make sure you each get a copy when it's published. My treat, though Dave may have had that thought already. If so, I win because I'm the mother and I said so..."

Dat's my mom - and you're my razzbuddies. Life is crazy good!

A vision of *people-centered* health

Heads-up, people - this is somethin' good.

I was invited to speak today at a meeting on "Patient-Centered Health" sponsored by the Ontario Hospital Association. I was followed to the stage by Vaughan Glover, author of Journey to Wellness, a 2005 book with a terrific vision of healthcare in which patients are truly responsible for the state of healthcare.

I hope to write more about it later, but for now just savor this quote from the back cover:

"We, the patients, must lead the way in building the next generation of health care in our country. The change will be driven by an informed and empowered public, demanding access to what is possible rather than what a government or any other support group is willing or able to provide."

How could I not have met this guy before?? Glad I did.

When BP spills coffee

From the Upright Citizens Brigade comedy site, UCBComedy.com:



(Thanks to Paul Levy for tweeting this.)

Seven minutes of an engaged patient's story

One of my clients is Klick Pharma, a Toronto marketing firm that creates superb websites to help patients be engaged in their care. They're real professionals in all the domains of their work: human interaction (how people use a website), messaging (the way concepts are delivered in words), and every aspect of production.

This spring they invited me to their video studio to record an informal chat version of my story, highlighting the ways patients use the internet to alter how they deal with disease. We spent several hours, and they did a terrific job of editing it down into something coherent.



(Email subscribes - if you can't see the video, click the headline to view the post online.)

The same video is on Klick's site here. Also on that site is a video of a talk I gave with Klick's Brian O'Donnell at a conference in Philadelphia. Most people in pharma marketing talk about the medication itself (in one way or another); Klick's approach is to support the patient in much broader ways - "Beyond the Pill," which is the title of the talk.

My segment starts at about 9 minutes. Thanks to Klick for their patient-centered approach, their competence, and for being a client of mine (in that order).

Urgent call for help - rare pediatric side effect of dialysis

My social media friend Dale Ann Micalizzi sends an urgent call for help. A 3 year old's life seems to be in imminent danger

I need help for a family that I'm working with from a pediatric nephrologist specializing in dialysis where child is having a rare side effect that no one seems to have heard of before. Please email me if you know of someone willing to talk w/family or PICU or answer a few questions for me.
...

Because of this flesh eating infection, he lost all kidney function and is on dialysis. The entire doc team never heard of the reaction that he's having to the dialysis. His face turns red, he screams the entire 2 hours even though he's on high power narcotics. His heart rate races to almost 200 and becomes tachycardic and his BP drops. If you could ask your nephrology friends if they have ever heard of such a thing and what they could do to relieve his pain or if anyone would be willing to talk with the Mom so that she could feel that she tried everything to save him?

More information is in this newspaper story. (Caution - some specifics are unbearable to read, and the important info is above.)

Because time is short and I'm overseas (not online constantly) please email Dale directly: micalizzidag at AOL. Or if you know of a specialist with info, they can contact the hospital directly - the main number is 518-262-3125. The family's name is in the newspaper story.

Leonard Cohen's "Hallelujah" as sung by my sister

When I was in college in Boston, Canadian singer-songwriter Leonard Cohen was a big deal. His dark, pensive voice and poetic lyrics set him apart from much of Sixties music.

His best-known song then was "Suzanne," but Wikipedia says in recent years it's been surpassed by his 1984 "Hallelujah." I'd never heard it until, at my sister Suede's recent concert at Boston's Sculler's Jazz Club, she pulled it out (total surprise to me) and rendered a beautiful, spiritual six minute version of it.

Suede is much loved on Cape Cod, and she sang it at an annual spring bonfire, another much-loved occasion. Perfect.

CaringBridge testimonial video

Last week I wrote about my visit to CaringBridge headquarters. The night before I had an idea - why not pull out a camcorder and record an impromptu testimonial? I've been doing some video interviews lately, and they come out okay; why not give a big thank-you to the website that meant so much to me, and to my community, during my illness?

I was tired (not enough sleep that intense week!), so I was a little hoarse, but here it is. Heartfelt.



(Email subscribers, if you can't see the video, click here to view it online.)

I encourage you to send a donation to CaringBridge, small, large, or tiny. It's a darn good service, and they offer it free to anyone. And at a time of crisis, that's a big deal. You can help make it possible for more people.

"The poster child for patient empowerment" - Mpls Star Tribune

Well THIS is fun.

Last week I gave the keynote address at the 13th annual ICSI / IHI Colloquium - an audience of 500+ physicians, hospital administrators, health plan (insurance) executives, all focused on doing healthcare better. ICSI is forward-thinking and Minnesota-based (not surprisingly - MN is a long-time leader of better health practices), and is finally starting to get recognition outside the state. Attendance in the past has always been around 300, so it's good to see it growing.

In the audience was Maura Lerner, a health reporter for the Star Tribune. We talked afterward, and she wrote a long, great piece that was on the front page of today's paper. A few details of my story are a little off, but she completely got the message right regarding patients being engaged in their health, as effective partners of their physicians.

They wanted a photo, so they came with me the next day when I visited the headquarters of CaringBridge, the wonderful website I used to communicate with family and friends during my illness. This photo is from the tour I was given by Sami Pelton, their director of partnerships. (That's her.)

______

Update 5/17: During the visit I recorded an off-the-cuff testimonial video for them. It's in my next post.

Book launch and jazz show April 22, Boston!

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. Cover art is 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.)

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

With four CDs and a live DVD to her credit, Suede is a self-made independent artist with a phenomenal stage presence. Be prepared to be owned by the diva for the entire evening. You’ll see what I mean.

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.

Q & A follows. "Do it!," as Suede says during one of her songs. :-)

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!