e-Patient Dave

Power to the Patient!

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The flak evangelists draw

Edited 7:45 pm – saved some content for a later post

I need to get this off my chest. I know to some it will sound like whining. Well, it’s my blog and my life, and on my blog I get to express myself.

One of the challenges of this path I’ve chosen – evangelizing in social media, starting with no business model – is that the more visible I’ve become, the more people have…

  • …plucked at my sleeve saying “I know you’ll love this – I just wrote it- please read it” or “please review it.” Truly, I wish I could, but I can’t. Sometimes it breaks my heart. But it disgusts me when people get mad at me or interpret it as me not caring. [Read more…]

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THAT’s what empowerment looks like.

N.Y. Times photo of woman leaving church in slacks

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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Knowledge is leaky now. Farewell to centralized control; hello to rapid spread and discovery.

Too Big to Know covershift index coverPower of Pull coverYesterday I posted about discovering a really good year-old video about something I’ve often blogged: the importance of letting people see the prices of what they buy, in healthcare.

The process by which I found it is a crystal clear illustration of a profound change in how information moves around today. It’s totally different from before the web, and anyone who wants to understand the present and the future needs to understand how it works now. Because as hard as it may seem – especially to a trained scientist – the path to finding the best information is no longer through a methodical, linear, step by step process.

This drives some people insane, but it’s true. In the past year I’ve found four major publications about this from three unrelated sources, and I’m convinced.

First, the story; then about the books. (If you don’t know how Twitter works, ignore the jargon; it’s just a way of messaging, and this story isn’t about Twitter itself.)

How I ran across the video illustrates how the network of social media works, and how centralized control is becoming impotent:

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Regina’s “Partnership WITH Patients” conference: donate, attend. (I am.)

Cross-posted from e-patients.net today.  I know my subscribers here have been following the growth of this movement; look at this truly extraordinary development, created by one widow with two kids and no foundation funding, and a bunch of peer supporters.

This is a hint of what social media can enable in giving voice to the disenfranchised – in healthcare and everywhere. You can help – support it in a large or small way. Use our ready-to-click links below.:-)

Yes, “Regina” – you know who I mean.:-) You know someone’s a star in the firmament when they gain first-name status. (Especially in healthcare, where “the other Regina” happens to be Surgeon General!)

As we reported here in June, Regina Holliday has led a band of patient colleagues and professional partners in creating this event, hosted by EMR vendor Cerner, to train and develop patients’ skills as effective advocates and related topics.

This is as grass roots as it gets – please support it,
as I am, personally, with time and cash.

Also, SPM is providing the infrastructure
for tax-free donations to support patient travel.

Summary of links below:

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“Why Would I Stop Laughing” – important comedy video on dying

Click to go to video on Paul Levy's blog
Click to view on Paul's blog

Long-time readers know that when I faced death, I figured I might as well enjoy myself. I cited Saturday Review editor Norman Cousins in the 1960s, who did the same, and wrote the book Anatomy of an Illness as Perceived by the Patient. “Laugh” became the first word in the title of my cancer journal book.

Paul Levy just posted a video that makes me want to shout from the rooftops: “Yes! Yes!” The video is “Last Laugh” and the post is titled “Why would I stop laughing?” It’s not about surviving through laughter (as Cousins did), it’s about laughing even while you’re not surviving. It’s interviews with several people who are in their last months and would, like Cousins, just as soon enjoy themselves.

I’m not saying everyone should “be that way” or any particular way. When I learned five years ago that I might be at the end, my sister Suede, who’d worked with many dying people in the AIDS epidemic, said, “There’s no right way: everyone does it differently.” Rather, as Twitter friend @JackieFox12 just said, “I recently lost a dear 40 year old friend to breast cancer. She refused to let it rob her of her zest for life.”

I like Oscar Wilde’s supposed words in his final illness: “Either this wallpaper goes, or I do.”:-)

Paul’s post also notes that in her final times, our friend Monique Doyle Spencer felt the need, as does one person in this video, to “edit” her friends, removing those who could only talk about the problems they were having dealing with Monique’s trials.

Please watch this video, and perhaps bookmark it for a time when its need arises in your life. For one thing, it’s really interesting to see a bunch of dying-soon people who aren’t all tubed up in an ICU – and for whom, like Jackie’s friend, a zest for life still has them enjoy living and laughing.

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Let Patients Help, Cost-Cutting Edition, Part 3: Shopping for my next CT scan

Since November  I’ve been blogging about what happens when a patient tries to help control costs, in my cost cutting edition posts. Most recently I noted that this stuff takes time, especially since our glorious American healthcare system seems to be set up to block our access to what things actually cost … or at very best, we have no channels and pathways to let us find the information.

Well, ladies and gents, I’m fed up.  I have to get on with life.  I’ve been trying to be a responsible, engaged patient, and if the established channels won’t make it easy for me to find out what I need to protect myself, I will blow the whistle, announce what I’ve found so far, and move on. And we’ll take it from there.

I’m leaving tomorrow for 11 days of work in more sane countries – Switzerland and Holland – so I’m going to report the status here.

A caution and apology at the outset: I expect this will be read by some of the people I’ve spoken to at these companies. A lot of the frustrations I express here are because we couldn’t connect. I am grateful for your effort; you’re just too hard to reach, which is a problem if you’re the only one at your company who can help with this kind of work. I will appreciate your continued effort as we work through this change in American healthcare.:)

Later I’ll blog about the results of my research into my basal cell carcinoma. But for today, let’s just look at the simple (you would think) matter of getting an important CT scan.

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