This isn’t directly involved with my causes of patient engagement and participatory medicine, unless you believe that a patient engaged in their health wants to know the best way to be healthy (duh) and thus avoid the need for health care. It keeps costs lower and keeps the family out of the hospital – good deal, huh?

The best way to do that, of course, is with prevention and good primary care. So you’d think preventive services would be the most highly valued.

Well, they’re not, and a major reason is that there’s been a secretive rate-setting cabal for twenty years, which decides who’ll be paid how much. And those people vote, year after year, to pay primary physicians less, and pay specialists more.  To quote a Wall Street Journal article last fall:

Three times a year, 29 doctors gather around a table in a hotel meeting room. Their job is an unusual one: divvying up billions of Medicare dollars.

The group, convened by the American Medical Association, has no official government standing. Members are mostly selected by medical-specialty trade groups. Anyone who attends its meetings must sign a confidentiality agreement. …

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Time Video has just published a video (below) that rocked me on this Sunday morning. It’s time to talk about something that used to be an important part of my life, and will be again: barbershop harmony.

Readers of my first book Laugh, Sing, and Eat Like a Pig know that before, during and after my disease, a huge part of my support came from the men in my chorus, the Nashua Granite Statesmen. At the time they were the northeast champions of the Barbershop Harmony Society, formerly known as SPEBSQSA. They’re the “sing” in the book’s title: shortly after learning I had cancer I asked my physician (Dr. Danny Sands) if I should stop going to rehearsals to save energy, and he said no: at times like this it’s not good to start dropping life activities that you love.

Amen. And I told people that my cancer Rx included singing – “Could be worse!” [Read more…]

When “Doc Tom” Ferguson first spoke of e-patients in the 1990s – empowered, engaged in their care, etc – those pioneering patients tended to be online. But today almost everyone’s online, empowered or not. In fact being empowered is a separate issue. And today’s “Empowered Patient” column by CNN’s Elizabeth Cohen illustrates that, by highlighting three Hollywood movies about patient engagement, all pre-World Wide Web.

She called this week – she was doing a piece for Oscar week, and the King’s Speech struck her (correctly) as a story of an empowered patient. Excerpts from today’s piece, “The Empowered Patient” Goes To Hollywood:

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I’m humbled to be one of the three people selected by Creation Healthcare for their annual “People in Healthcare Engagement Award.” Creation Healthcare advises companies on how to use social media wisely, to engage actively with their markets, transcending the old-school “We talk, you listen” approach that everyone is learning to move past. It takes new mindsets and new skills to understand how the world has changed and what to do about it. That’s what this is about.

Also honored are Janssen’s Digital Strategy & Social Media Manager Alex Butler (“Nobody should pat themselves on the back for having a Twitter account – it’s what you do with it that matters”) and Sabine Kostevc, author of the social media guidelines for Roche Pharmaceuticals, which were widely praised last year, and justly so. (If you’re interested in this culture change and you haven’t read Sabine’s guidelines, you should.)

In the announcement Daniel Ghinn writes:

Dave deBronkart personifies how the Internet has changed healthcare over the past few years. His book, ‘Laugh, Sing, and Eat Like a Pig’, published in 2010, in which he shares his incredible journey beating Stage IV cancer, is a testimony to the power of the Internet to change lives. It is also a powerful resource not only for patients but for healthcare stakeholders to learn from.

Thanks, Daniel – that’s my fondest dream: that everyone involved will realize how empowered, engaged, socially connected e-patients are changing healthcare … as it says at the top of the e-patient blog, “because health professionals can’t do it alone.” Thanks for getting it!

Today my oncologist, Dr. David McDermott, generously spent 48 minutes answering questions from the ACOR.org kidney cancer patient community. Here’s the recording, including some notes on terms used in the discussion.

Note: it was neither possible nor appropriate for the doctor to comment on specific detailed cases, so the discussion was about issues rather than details.

These audio files will open in a separate window. Blog experts, see note at bottom.

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