e-Patient Dave

Power to the Patient!

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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.

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eBook experts, advice please: Best way to convert complex layouts?

Update: the questions were answered (thank you all!) and the book’s now available on Kindle. Buy some now!

We have many, many requests for a Kindle, eBook (Sony) or iPad version of Laugh, Sing, and Eat Like a Pig, and the time has come to git ‘er done. BUT (and it’s a big but), for this book there are decisions to be made, so it’s time to crowdsource: what’s our best approach?

I’ve never done this, so correct me or make suggestions. [Read more…]

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.

_________________________

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:
_________

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!

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Book launch and jazz show April 22, Boston!

I have exciting news and an invitation to all of Boston:

Please rearrange your life and join me, Thursday night at Scullers Jazz Club!

The news: I’m announcing my first book. It’ll be out in June. See cover art at left.

It’s my story then and now: excerpts from my online CaringBridge journal, interwoven with what I’ve since learned about e-patients and participatory medicine.

The title reflects the mind-powered approach I took to my “prognosis is grim” disease. (More on this below.)

The invitation is for all of New England to come celebrate and honor a singer who was a huge, powerful force during the course of the disease: my sister Suede. (Yes, that’s her name.)

With four CDs and a live DVD to her credit (listen to her tracks here), Suede is an independent artist with a phenomenal stage presence. Be prepared to be owned by the diva for the entire evening. You’ll see.

[Read more…]

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The AI Revolution, Revisited: It’s Succeeding at Real Work

When The AI Revolution in Medicine came out in 2023, I called it the best book I’d seen on AI in healthcare, because it resonated deeply with realities I’d heard in thousands of conversations at hundreds of conferences. Today we can say with confidence that co-authors Peter Lee, Carey Goldberg, and Zak Kohane correctly anticipated not just the scientific impact, but the human and institutional realities of what would unfold when generative AI entered medical practice.

And the impact of patients using it.

[Read more…]

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“Your Map to the Future”: learning to deal with disturbingly uncertain times

This is my first post in months, and isn’t specific to healthcare. I’m doing it for a couple of reasons. First, this is an important new book by one of the sharpest minds I’ve ever known, and second, it’s about a dangerous situation that’s driving a lot of people nuts. The danger is real, and I think there’s a way to not lose our minds over it.

As I approach age 75, I’m in a position to say this bluntly: we live in disturbingly uncertain times, and “we” includes you. I say this as someone who’s spent his whole career working to understand what’s going on under the surface, whether it was in graphic arts or then in healthcare. Such questions require asking a lot of “Why??” so that any improvement you propose can be built on understand what’s eternal.

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