e-Patient Dave

Power to the Patient!

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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:
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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.

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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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About

e-Patient Dave. Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0
Click to access high res version on Wikipedia. Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0.

Quick links:

Cancer survivor “e-Patient Dave” is an international keynote speaker on healthcare who consistently earns extraordinary ratings by understanding each audience and working closely with each client to define their unique “home run.” Audiences have ranged from the Institute for Healthcare Improvement to the Danish Patient Safety Association and the Israel Internet Society. His compelling TEDx Talk “Let Patients Help” was for years in the top half of most-watched TED talks of all time.

Standard Topics:

  • Patient Engagement / Patient Empowerment / Patient Experience
  • Superpatients: Patients who extend science when all other options are gone
  • Healthcare Consumerism: a businessman’s view of the consumer side of healthcare (I published an RFP to shop for skin cancer treatments!)
  • Inspiration / Motivation / Attitude / Mind Power
  • Facing Death (book: Facing Death – With Hope)

See videos of past talks, testimonials, and list of past engagements.

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Dave’s Story

“e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one web site described it.

He received great treatment at Boston’s Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the Biologic Therapy program helped him participate in a clinical trial for the powerful but severe High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions continued to shrink for years after the treatment ended.

Today: Advocate and Activist

An accomplished speaker and writer in his professional life before his illness, today Dave is actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient. This is revolutionizing the relationship between patient and health care providers, which in turn will impact insurance, careers/jobs, quality of life and the distribution of finances across the entire spectrum of health care.

“What’s an e-Patient?”

A year after the diagnosis Dave was invited by his primary physician, Dr. Danny Sands, to join the annual retreat of the e-Patient Scholars Working Group. Founded by the late Tom Ferguson MD, a true visionary, the group consists of pioneers, both medical and lay, who have been quietly (and not so quietly) altering the balance of power in healthcare, demonstrating that as the internet brings patients together with information and with each other, a new world of Participatory Medicine is evolving, in which patients become potent agents in creating and managing their own health, in partnership with physicians.

Tom Ferguson said e-patients are empowered, engaged, equipped and enabled. Dave immediately saw himself as a match, became an active blogger on e-patients.net, and took on educating himself as much as he could. He went part-time in his day job in 2009, and left industry entirely in 2010 to devote himself full-time to healthcare.

“This is the first time in my life I’ve felt I have a calling,” says Dave, “something I can’t get away from: it’s what I need to do. I’ve had plenty of fulfilling jobs in a great career, but not a calling. This is it.”

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Bio for speaking engagements

Note to clients: In publishing conference materials, or introducing me to your audience at the event, I urge you not to focus primarily on my biographical details below; tell them why you invited me to take up their time at this event. I’m presuming there was a specific reason – that I’m not just a necessary evil to fill your agenda. So, share with your audience what called to you, and why you believe it’ll be relevant to their lives!

Having said that, you’re welcome to select from this formal bio.

Full bio, 271 words, updated 2019:

Dave deBronkart, known on the internet as e-Patient Dave, is the author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world’s leading advocates for patient engagement. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. An accomplished speaker in his professional life before cancer, he is today the best-known spokesman for the patient engagement movement, attending over 650 conferences and policy meetings in 26 countries, including testifying in Washington for patient access to the medical record under Meaningful Use.

A co-founder and chair emeritus of the Society for Participatory Medicine, e-Patient Dave has appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Patient Experience Journal,  iHealthBeat, and the conference journal of the American Society for Clinical Oncology. In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better,” and he’s appeared on the cover of Healthcare IT News and the Australian GP magazine Good Practice.

Dave’s TED Talk Let Patients Help went viral, and for years was in the top half of the most viewed TED Talks of all time with over a half million views; volunteers have added subtitles in 26 languages, indicating the global appeal of his message. In 2012 the National Library of Medicine announced that it’s capturing his blog in its History of Medicine Division, and he was the Mayo Clinic’s 2015 Visiting Professor in Internal Medicine.