e-Patient Dave

Toward a New Science of Patient Engagement

Search Results for: "skin cancer"

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See you in the Library. Yes, *that* Library.

Screen Shot of the announcement (click to go there)How do you know when an idea is taking root? It’s a question I constantly ask, in both my inside and outside voices, as I travel around banging the drum for listening to patients as a worthy voice in healthcare. Well, this month I got a piece of news that blew my mind so much that it’s taken me two weeks to decide what to say:

This blog is now being archived by the National Library of Medicine.  In their History of Medicine Division.

Their post about it is here. Quote:

The National Library of Medicine has a mandate to collect, preserve and make accessible the scholarly biomedical literature as well as resources that illustrate a diversity of philosophical and cultural perspectives not found in the technical literature. New forms of publication on the web, such as blogs authored by doctors and patients, illuminate health care thought and practice in the 21st century. (Emphasis added.)

… NLM has collected the following examples:

And guess who’s listed first:

e-Patient Dave

…a cancer patient and blogger who has become a noted activist for healthcare transformation through participatory medicine and personal health data rights. Mr. deBronkart writes in this post as a newly diagnosed skin cancer patient who is taking action to make his treatment most cost-effective. …

[Read more…]

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A dermatologist responds: “Who the heck is charging $3000 for Mohs first stage?”

Well, that’s not exactly what he said. And I’m not even sure he’s a dermatologist, though it sure sounds like it.

For newcomers, this is the latest in a four month saga, including these posts:

Today (Saturday 6/16) on the “decision” post, commenter “Joe” (apparently a dermatologist) said the most interesting, thought-provoking stuff I’ve ever seen anywhere about basal cell carcinoma treatment options:
[Read more…]

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Raw numbers for treating my basal cell carcinoma at three hospitals

The morning-after edits, originally marked in italics, have been “accepted” (to borrow Word’s term) to show the final text.

Here are the results of my cost shopping research to get my skin cancer (basal cell carcinoma, aka BCC) removed. The first edition was done in a hurry because the #bcsm (breast cancer social media) Twitter chat was happening, discussing costs and shopping, and they asked to see it.

It started in February when I decided to be proactive about finding out what this would cost me. I have $10,000 deductible insurance, so this is all coming out of my pocket. In previous months I’d gotten sick & tired of getting unexpected medical bills, and people at the hospital and insurance companies having wrong answers or no answers about “What’s this going to cost?” (CT scan, shingles vaccines)  So, this time I published an RFP (request for proposals), the same way any business would do when making a substantial purchase decision. The RFP started:

Summary: I seek a care partner to remove a basal cell carcinoma (BCC) from my left jawline, under the ear. For a brief introduction, see blog post and photo (low quality) at http://bit.ly/ePDaveBCC.

I’m educating myself about the condition, I want to explore the available treatment options, and I’m “shopping” for a partner to do the work and follow-up with a good combination of quality, partnership, and cost.

It was a crazy thing to do, because hospitals don’t have RFP response departments (as many businesses do), and I was sure my request was largely uninformed. But I sure learned a lot from the comments on that blog post.

[Read more…]

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The Magic Incantation (for Rich Products)

Speaking at Rich Products May 15 2012I’m speaking today at the annual Health Fair for Rich Products employees in Buffalo. They’re proactive about a family attitude, responsibility, and consumer engagement, and that extends to health.

In preparing for this speech, they asked me to be sure to offer takeaways – specific, concrete to-do’s for people to use after the day is complete. Here they are:

The Magic Incantation
(introducing yourself as an e-patient):

Here’s what I say when I meet a new clinician, to explain my appetite for understanding:

“I’m the kind of patient
who likes to understand
as much as I can
about my health.”

“Could I ask
some questions?”

Shazam: you’re an e-patient! Empowered, engaged, equipped, enabled.

It’s exactly what I said when I met the dermatologist who removed my skin cancer last week. So after our first meeting, when I did have questions to ask, it was natural.

Five starter questions:

When you or your family encounter a diagnosis, here are some basic questions to use:

  1. How can I learn about my condition?
    • Good websites or pamphlets?
  2. What are my options?
    • How much does this cost?
    • Are there any other options?
    • Do other doctors offer anything else?
  3. What are the risks?
  4. How strong is the evidence?
  5. Can I connect with other patients?

Don’t worry, these questions aren’t rude! By asking them you’re being a responsible, activated, engaged patient. That’s great, because throughout medicine one of the most widespread complaints is about patients who aren’t engaged.

Remember, e-patients are empowered, engaged, equipped, enabled, educated, sometimes expert … in your travels you’ll take this wherever it takes you. And don’t forget to use your Health Advocate benefit!

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Decision: Just scrape it off. (“ED&C”)

April 23, after biopsy
April 24 (11 weeks after the biopsy cut part of it off)

 

November photo, before biopsy
November (before biopsy)

As regular readers know, I have a basal cell carcinoma on my jaw line, and since I have $10,000 deductible insurance and have had really bad experiences trying to get a straight answer on costs, I decided to be very proactive about researching my options. I’ve decided, and the treatment is today.

I’ll have a lot to say later about the process I went through. Long story short, I’ve decided not to buy Mohs surgery, which everyone seems to agree is the Cadillac treatment; its cost to me, out of pocket, would be several thousand dollars, and the treatment I chose will be under $1,000: ED&C – electrodessication and curettage (Wikipedia). (Under local anesthetic they slice off some tissue, zorch it with the electrozorcher, and repeat until they’re satisfied.) (I have a lush technical vocabulary, huh?)

Quick background:

Summary of my research: (Much more detail to come in other posts) [Read more…]

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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.