e-Patient Dave

Power to the Patient!

Search Results for: FacingDeath

Books and publications

Part of creating culture change is to publish documents, professional and mass-market, that spread the word about the new view. In addition to my speeches and videos, I do this through articles and books.

Books

For more information, visit the Books page.

Book chapters written and co-authored

Articles in peer reviewed journals

Search my publications and citations on Google Scholar or PubMed

Articles in health-related publications and blogs

See also the Media page for interviews and articles in mainstream media (Washington Post, USA Today, Time, etc) covering my thoughts on contemporary topics.

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A surprise second book: Facing Death – With Hope

This short book has “mysteries of the universe” written all over it.

Earlier this month I escaped for a few days to write a book called Let Patients Help. For whatever reason, this one came out instead: an updated edition of the “Facing Death” chapter from my previous book, with a new prolog to make it a standalone booklet. It wasn’t what I’d planned to write, yet when I finished, I had a sense of peace and completion – like I had completed what I actually needed to do, whether I knew it or not.

Through Amazon’s automated self-publishing tools, it’s already complete, proofed, and ready to ship. The book’s web page, with links to order it in paper or on Kindle, is ePatientDave.com/FacingDeath.

The message is what I saw in my own crisis. The title says hope, but it doesn’t say hope will cure anything; it won’t. Yet there is hope – Jerome Groopman MD’s book Anatomy of Hope says “There is an authentic biology of hope.”

Whatever your path – wherever you are on this journey – I hope my experience will help. And whatever your outcome, this booklet’s about being awake to life while we have it.

Books

E-book: “The Birth of a Battle Cry: Gimme My Damn Data”

Download free on Bookfunnel (PDF and Kindle are under “my computer”)
or from these e-book stores.

This book is a compilation of 12 essays (blog posts) that unfolded over two years, starting my odyssey as an advocate for patient access to their medical records.

The original articles are all available online for free, but it’s compiled here for convenience, and I hope it will be of use to future students of health IT policy, because it tells how one patient trying to improve healthcare stumbled on a subject that others had struggled with.





Let Patients Help cover

Let Patients Help!
A patient engagement handbook

How doctors, nurses, patients and caregivers
can partner for better care

With Dr. Danny Sands; introduction by Dr. Eric Topol

“Will unquestionably help many individuals become more active and fully engaged in their health care.”
From the introduction by Eric Topol

Read more on the book’s web page here. Order it on Amazon here.

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See also my second book, September 2011: Facing Death – With Hope and my video reading about it for the Mayo Clinic’s “Healing Words” channel.

And my first book (2010), from Changing Outlook Press – from the online journal I kept when I was sick – a real-time e-patient chronicle:

Laugh, Sing and Eat Like a Pig

“How an Empowered Patient Beat Stage IV Cancer
(and what healthcare can learn from it)”

  • Buy it on Amazon:
  • For quick delivery direct from my stock, or for bulk orders, contact me.

LaughSing cover
Cover

The “ultrasound” of my almost-born self – May 22, 2010

Hi, it’s me, the book! I went live on Amazon in July 2010. My title reflects the mind-powered approach Dave took to his “prognosis is grim” disease. Here, let him tell you:
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Dave here …

What’s the title about??

It’s the approach I chose to take to the news that I had a lethal cancer – a summary of the advice I got in the first few weeks after diagnosis, before I even started my journal:

  • “Laugh” is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness as Perceived by the Patient
  • “Sing” is the advice my doctor gave. I had asked if I should drop out of my much-loved championship chorus to save energy, but he said, “You don’t want to stop doing life activities that you love – it sends the wrong message.” Wow. So, okay, laugh and sing! Not bad.
  • “Eat like a pig” refers to the diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

In my online community I told people “If I ever write a book about this, that’s what I’ll call it.” And here we are.

Admittedly, that’s not a conventional approach to a deadly disease. But that’s the point. And the whole story’s true.

Why a book with this message?

4,000 people a day (in the US alone) discover they have cancer, and face that moment of “What on earth do I do NOW??” I know that feeling. Some look for what to do next; others don’t even think they can do anything — they just think they’re screwed and go into depression. This book is about hope, getting it in gear, and going “e.” (E-patients are “empowered, engaged, equipped, enabled, and educated.”)

What’s the vision?

I’m committed to a world where healthcare works better – and not just for patients but for the people whose work is to deliver care. I agree with the words of Warner Slack MD, who said patients are “the most under-utilized resource” in health IT, and I think it applies to all of healthcare.

Healthcare today has unprecedented challenges. Let patients help.

_______

Okay, I’m back – me, the book. I look forward to meeting you. Buy me!

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.