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June 14, 2012 By e-Patient Dave 7 Comments

e-Patient resources for endometrial cancer?

A friend of a friend writes:

I was recently diagnosed with stage III endometrial cancer. Although my doctors are all extremely competent (a top-shelf cancer center), it is disappointing to discover that they do not always have crisp answers and the tests are far from accurate. I had no symptoms until recently and pre-surgery tests indicated I had pre-cancerous cells at worst. It wasn’t until surgery that they discovered “extensive” cancer in my uterus which has spread to the lymph nodes.

We now have a plan which seems to be pretty standard (Radiation and Chemotherapy), and my doctors discuss treatment as though they aim to eliminate the cancer entirely. But stage III doesn’t always have a happy ending and I want to make sure that I do everything in my control to effect the best possible outcome.

Any suggestions for e-patient resources? Best places to learn  about the condition and treatment options? A good patient community?

Filed Under: e-patient requests 7 Comments

June 3, 2012 By e-Patient Dave 8 Comments

Information, at the point where it’s needed, can save a life

At the Joseph H. Kanter Family Foundation’s Learning Health System Summit, at the National Press Club in Washington last month, I was asked to deliver a dinner speech about the power of information to improve the effectiveness of medical care – not just for patients, but for every doctor and nurse at the bedside. Because everyone performs better when they’re better informed.

Important: This was my first major speech that’s not about patient engagement per se – it’s about the value of information, to everyone engaged in any aspect of health or care.

Clinicians, policy makers, everyone can only perform at the top of their training if the relevant information is available where and when it’s needed. That’s IT, baby – information technology – but it’s also culture. We need the will to bring the info to the point of care – and to put an end to information that dies on the vine, unused. We can do it!

If you can’t see the video, click here to view it directly on Vimeo.

About the event:
[Read more…]

Filed Under: decision making, Events, Government, Health data, Participatory Medicine, public speaking 8 Comments

June 1, 2012 By e-Patient Dave 1 Comment

“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.

Filed Under: Uncategorized 1 Comment

May 21, 2012 By e-Patient Dave 86 Comments

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…]

Filed Under: cost cutting edition, decision making 86 Comments

May 15, 2012 By e-Patient Dave 7 Comments

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!

Filed Under: Uncategorized 7 Comments

May 10, 2012 By e-Patient Dave 43 Comments

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:

  • Time to practice what I preach: I have skin cancer again. (Feb 9)
  • I’ve started an RFP for my skin cancer (Feb 11)

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

Filed Under: cost cutting edition, Uncategorized 43 Comments

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