e-Patient Dave

Power to the Patient!

Search Results for: "skin cancer"

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Links for today’s Oracle Health Sciences Innovation Forum

Click to visit event siteI’m speaking today at Oracle’s Health Sciences Innovation Forum in San Mateo, California. They’re into big data and what it can do to create value, and as regular readers know, I love that idea. Heaven knows medicine can use all the “value help” it can get – and heaven knows most of medicine doesn’t think nearly enough about the value of data.

Here are links to the resources I’ll mention:

Also of interest – I may or may not mention it – to optimize consumer value for treatment of my new skin cancer, I published an RFP, specifying what I want from providers. Why? Like more and more consumers, I have high deductible insurance – $10,000 deductible – so I myself am calling the shots.  I’m getting the treatment tomorrow – I’ll be blogging the decision I made, as an outcome of the RFP process.

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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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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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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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