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.

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Thanks to Dr. Gunther Eysenbach for providing, free of charge, full unedited video of my 40 minute opening keynote at his September 2009 Medicine 2.0 Congress in Toronto.

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

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.

If you haven’t found him yet, Bertalan Meskó is one of the best new-generation doctors making the most of social media. While he was still a med student his ScienceRoll blog won Blogger’s Choice in 2007, and last month it won Medgadget’s prestigious Best Medical Technologies/Informatics Weblog for the second year in a row. @Berci, as he’s known on Twitter, provides a glimpse of what healthcare will be like in the coming decades.

Now that he’s become an MD himself and is teaching, he’s taking it to the next step, inviting e-patients to talk directly to his students via two-minute YouTube videos. Here’s my submission. (This is my first “vlog” (video blog) so the quality’s not great – like everything we do online, it’ll improve with experience.)

I was interviewed for the March issue of MM&M, a medical industry marketing magazine. The title they chose is “Visitor from the future.” Indeed – but this time traveler has millions of cousins.

As our country (and world) plan the next generation of healthcare, I urge people to look at what e-patients are doing – and use it as a lever, to improve care and economic efficiency. Heaven knows we could use it.

The article arose from a talk at the ePharma Summit in February. I was the guest of Klick Marketing, a Toronto company that develops superb web sites for consumer engagement, including patient engagement sites for drug companies. I spoke as the “voice of the patient,” within a keynote by Klick’s Brian O’Donnell about engaging with activated patients.

I wanted to make clear that although it seems futuristic, it’s real today. So the first words out of my mouth were “I’m here as a specimen from the future.” MM&M editor-in-chief Jim Chase was there , and this interview resulted.

Truly and literally, that future is here. The article cites that ACOR (my patient community) reaches 1.5 million patients a week, and that’s just one e-patient site; there are many more. (The Society for Participatory Medicine hopes to publish a list this year, to help people find peers.)

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