e-Patient Dave

Power to the Patient!

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New diagnosis means I can’t attend South By Southwest

Back in August I blogged about my proposal to speak at South By Southwest, the super-hip high impact event every winter in Austin.  In October I was thrilled to announce that my proposal was accepted: Let Patients Help: Why Healthcare Must Wake Up.

Well, I have to cancel. It’s an unhappy side effect of two things:

  • My skin cancer diagnosis, and a couple other items (below), will hit me with $7,000-$10,000 of unplanned medical bills.
  • South By Southwest is such a competitive event that not only do they not pay speakers, you have to pay all your own expenses (travel, lodging, meals).

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Guess who else is saying what HE wants: Don Berwick

Boy, social media is amazing. This just happened on Facebook.

(And, later tonight someone pointed out that it’s a 2005 article based on a 2003 speech! So I edited this post. For some reason people are circulating it again.)

An amazing development in my RFP quest, first pointed out yesterday by Nick Dawson; the link was shared by Giovanna Marsico from Paris:

I had no idea that Don Berwick, head of the IHI, has published in 2005 what HE wants from providers for an upcoming surgery, like I did! Except his is in the Annals of Internal Medicine http://www.annals.org/content/142/2/121.abstract.

Look what he says in the abstract: [Read more…]

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This is it: The secret structure of great talks (TEDxEast)

I just ran across this – brilliant, hot off the presses, from TEDxEast in New York last November: presentation designer Nancy Duarte (@NancyDuarte) puts together just about everything I know about how to do a talk and a lot more. A comprehensive model of how great talks are structured – using “I Have a Dream” and Jobs’ iPhone launch talk as examples.

This is your training kit; if you want to change the world, master this!

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I’ve started an RFP for my skin cancer

RFP thumbnail (click to visit the document)

Be sure to scan the 57 comments readers added, below.

The other day I announced my new skin cancer diagnosis and discussed how I’ll blog my approach to it as an e-patient.

I’ve decided to explore my options by doing what companies do when they’re shopping for a solution: they write a Request for Proposals, and let vendors reply. But in this case what I published isn’t cast in stone – I invite discussion and suggestions. And, significantly, I start with the context: partnership; participatory medicine –

I’m approaching this through an RFP process because I believe in “participatory medicine,” in which patients play an active and responsible role in all aspects of healthcare. I believe patients should play an active role in making care more cost-effective and patient-centered, by being responsible about costs and by saying what they want.

 

Here’s the RFP, in Google Docs. At top right of that page there’s a place to leave comments, or discuss here. Thanks for helping!

Update: This triggered an enormous amount of discussion on social media, additional posts here (with the results of my shopping), and even an article four years later in the New York Times, which I posted about with additional thoughts and resources. [Read more…]

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Time to practice what I preach: I have skin cancer again.

Photo of the lesion, Nov. 15
Photo of the lesion, Nov. 15 (click to enlarge, if you really want)

Update Feb. 11: I’ve decided to publish what I want to find in a provider: see this post.

Be sure too to read the substantial information contributed below in comments, some by e-patients and some by participatory providers. This process is interesting to observe!

An odd consequence of speaking at medical conferences is that sometimes my face is displayed, real big, on monitors at the front of a room. That happened in November at the Aligning Forces for Quality (AF4Q) annual meeting in Washington.

At the end, Lisa Letourneau MD, MPH of Maine Quality Counts raced up, pointed to my jaw, and said “You should have that checked.  I think it’s a basal cell.” (That’s the least serious type of skin cancer – see Wikipedia: “Basal-cell carcinoma (BCC) is the most common type of skin cancer. It rarely metastasizes or kills.”) A few days later I took the picture at left, and started watching.

I had a basal cell removed from my nose 30+ years ago. (More on this in a moment.)

To me it was just a shaving cut… but, I realized, it wouldn’t heal. For the next two months I was a slug (a not-engaged patient!), but I did take pictures, and son of a gun it did not get better, even when I thought it was finally going away.

When I had my annual physical recently, I asked my doctor, and he looked and said, “Get a biopsy.”  I did, this week, and today they called. Yup, it’s a basal cell. Thanks, Dr. L!

Remember how you’ve always heard that a warning sign is “a sore that won’t heal”? I guess they mean it. I kept kidding myself, thinking I was continuing to re-injure it shaving. (Not bright, I know.) Then, just before the physical, I ran across a summer photo, and there it was. So I guess it was there longer than I realized.

I’m going to blog this experience, as I try to practice what I preach: get engaged, learn what I can, explore my treatment options, connect with other patients.

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Ask the Patient feature, on QuantiaMD

QuantiaMD screen captureI was thrilled to be engaged by clinician network QuantiaMD to do an “Ask the Patient” feature. (I get a small stipend.) It’s live, and available for public viewing. Free registration is required to view their videos; you can preview the first minute or so of each one without registering.

We often talk (here and on e-patients.net) about patient social networks and how they help spread ideas and information. Well I’ll be darned, it turns out doctors and nurses are doin’ it too, with similar benefits. Who knew? :-) And you know I was thrilled that they’ve added a new feature, “Ask the Patient.” Here’s hoping every clinician community does the same. Let Patients Help!

It works like this:

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