My Nashua, New Hampshire neighbor @KevinMD (Twitter, blog) is known as “social media’s leading physician voice,” and I believe it. His blog is terrific, both technically and in breadth, depth, and consistency. I don’t know how he does it, on top of running a vibrant family practice in a busy area.

I’m late in discussing it, but he recently published a new book with many invited contributions, including one from me. It’s Establishing, Managing, and Protecting Your Online Reputation, and it’s smart.

This is a tricky subject, because online reputation is something consumer/patients are increasingly consulting as they start acting like consumers (trying to be informed), and reputation is a form of data – and as with all data, it’s really hard to know sometimes if the data is high quality. That was precisely my point in my submission, which I’m posting here, with permission (which of course Kevin granted, since I wrote the stuff! :-))

Space didn’t permit all these words to make it into the book, but here’s the full text of what I had to say.
__________

Reputation – online or off – means a lot.
But whose opinion is it?

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I just learned that “The Wall Street,” as cool people call it, reported last Tuesday on a session at the uber-hip South By Southwest conference (SxSW), saying this:

SXSW Reporter’s Notebook:
Who Rules the Data?

The full text requires a subscription, but here’s the relevant snip:

… Privacy is only one data concern. John Wilbanks, chief commons officer at research nonprofit Sage Bionetworks, began a panel on “health 2.0” by playing a song called “Gimme My Damn Data.”

While acknowledging the great possibilities of data for improving science and individual health, Mr. Wilbanks lamented the currently “broken” system where people can’t easily use data about themselves. “It is very hard to open-source your data,” he said. “It is owned by whoever has it—and it might be considered a corporate secret or private.”

The power of art in a cultural revolution:
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“Could a greater miracle take place than for us to look through each other’s eyes for an instant?” – Thoreau

Yesterday I spoke in Las Vegas at the Dignity Health Patient Experience Summit. They started with this four minute video, released recently by the Cleveland Clinic, titled “Empathy.” It’s so powerful that I found myself in tears, seriously, as I watched. It starts with those words from Thoreau.

I think without exception everyone who wants to improve medicine should watch this, including people on the patient side, the provider side, insurance, government, media, everyone. It reminds me of the “Walking Gallery of Healthcare” from Regina Holliday (Wikipedia) because it makes us conscious of the story that each of us carries around.

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Last fall I wrote about a new program I’m in, on WNED-TV, the Buffalo PBS affiliate: “My Health Counts: e–Patients”. It also includes the e-patient stories of Lygeia Ricciardi (official consumer e-health guru at HHS) and Buffalo resident Tom Dixon, and is hosted by Susan Hunt.

The program aired Wednesday night for the first time, and is now available online. I’m thrilled with how it came out – the team at WNED, led by producer Christie May, did a phenomenal job. Here’s the video. (Email subscribers, click the headline to come online and view it.)

http://video.wned.org/videoPlayerInfo/2305112748

Watch e-Patients on PBS. See more from My Health Counts!.

Even better, the WNED team developed a terrific web page of related resources, including:

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I’ve long said that the feminist movement has strong parallels with the patient empowerment movement. Both involve people who perhaps at first didn’t feel mistreated (though some did) but who went through an awakening – “consciousness raising,” we called it in the Sixties, started to speak up, and discovered how it feels.

There was a great example today in the New York Times: Mormon Women Set Out to Take a Stand, in Pants. As I said on Twitter, “A long time feminist, I’m tickled to see Mormon women starting the process – by wearing pants to church. Some backlash.” The lede:
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Check this trailer for a new program, to be launched in January, produced by WNED, the PBS affiliate in Buffalo:

One of the challenges of starting a movement like this, especially a Society with little budget, is that you have to bootstrap, like any modern business: you take what you have, make something of it, make something of that, and build from there – always always listening for what others find valuable.

SPM member Regina Holliday’s magnificent “cinderblocks” conference Partnership with Patients was one superb example. Another is that as many of us have gone about our business, we’ve spread the word as we are able.

A lot of people we talk to are “getting it” – and sometimes that turns out to be someone with reach. And boy do I have news.

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