e-Patient Dave

Power to the Patient!

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Experiences exploring BCC patient communities, part 1

On my first post about my BCC (basal cell carcinoma), seeking patient communities and other information, I was pleased that people submitted four communities.  I posted them to my very informal patient communities page:

Tonight (Feb 20) I’m exploring them for the first time.  I didn’t find any useful information yet, so you may want to come back another day.:)

  • If you know of other communities, please submit the URL in a comment below.

This won’t be of interest to most people – it’s mostly for people who want to study what a site should be, and the process of exploring.

Preface – my purpose and context

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It turns out being an engaged patient/consumer takes time.

Boy, is this interesting.  Five years ago when I found out I was dying, I quickly dropped everything. I quoted Samuel Johnson:

“Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”

My median survival of 24 weeks was more than a fortnight (two weeks), but it sure focused my mind: I quickly joined the patient community on  ACOR, paid close attention, and acted quickly.

This time, mere skin cancer is not doing the job. I got a lot of good feedback to my RFP, and I want to process it, arrive at a plan and get it in gear, but I haven’t done a single thing with it yet. This post is a start.

Approach:

  • I have a lot of travel coming up, and that needs to mesh in with my providers’ plans, complicating things further. So:
    • Just as I dropped my participation in South By Southwest, I’m cancelling many other plans this week. It means I won’t be able to meet up with everyone I’d like to, but I’m already not getting enough sleep.
    • I just posted an out-of-office email message saying that except for current customers, I’ll be ignoring email.
  • I’m going to start blogging smaller chunks as I gather them … I have a tendency to want to write BIPs (Big Important Posts), and that’s not working.

First reports:

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Why does success take so long? One part of the answer

In Outliers, Malcolm Gladwell famously said that sometimes it looks like someone has become an overnight success. (A current example is new NBA darling Jeremy Lin … only 16 games since becoming a star, but look at his massive Wikipedia page.)

But, Gladwell says, almost always that person has put in 10,000 hours practicing their skills and gaining perspective. Then things come together, and it looks like they arose out of nowhere.

I don’t know if he was thinking about this graphic, but I know the feeling it conveys. Not sure where I am on this path, but I know the e-patient movement is farther along than it used to be. We are credible and people are listening.

However far along we are, our movement is driven by one of the most fundamental forces in human nature: people want to take care of their families. So we may face hurdles and diversions, but time is on our side. Especially as we boomers become a problem.:-)

Like, ex-hippies who today are acquiring multiple “co-morbidities.”

(Yeah, that’s what the medicos call it when we have more than one condition at a time. Lovely, eh? You can guess which party decided to call it that … it wasn’t a patient!)

Don’t be put off by obstacles, folks. Do what you need to do. Take care of each other, and help each other do so. Let Patients Help.

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Yo, y’all: I’m FINE :)

Thank you, all of you who’ve written to express concern. But I seem to have come across as more concerned than I am.

Yeah, I have Stuff To Deal With.  Skin cancer (yawn), eye drops (irritating actually) & tests, and dental stuff (annoying cost-wise but I have a damn good dentist I’ve been with since 1980 … post-grad work at the Pankey Institute, heavily patient-centered). Yeah, I have Stuff. But I’m fine. (See the photo, right, taken two weeks ago in San Francisco with the amazing Hugo Campos, whose “gimme my data” TEDx talk is the recent darling of the e-patient world. He Photoshopped a background of numbers into it – wish I could do that!)

I’m not depressed.

I’m not gloomy.

I’m not worried. (This bears no resemblance to metastatic kidney cancer.)

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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…]