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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The first in a series about past papers that I think are important as we create the future of healthcare.

I’m preparing to participate next month in a seminar on shared decision making (SDM). SDM is the general issue of patients sharing actively in decisions about their care, as opposed to physicians and hospitals making the decision without asking.

The seminar’s full title is “The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care.” The first phrase alludes to an expression made famous by Charlie Safran MD, of Beth Israel Deaconess, when he testified in 2004 to the House Ways & Means Committee’s subcommittee on health: “the most under-utilized resource in our information systems – the patient.” I recently learned it was first said years earlier by his colleague Warner Slack MD. Both of them were early mentors to Dr. Danny Sands, my primary physician.

Bluntly, these guys have been working for decades on empowering and enabling patients to be engaged in their care, and it’s a thrill to be connecting with them and moving the ball forward. I’ve met with all of them this year, and they shared copies of some of their writings. This is the first: “Healthcare in a Land Called PeoplePower: nothing about me without me.”
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