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).