e-Patient Dave

Power to the Patient!

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“Simply, bravo” – a wonderful endorsement

This weekend I received a note of support for my new book that moved me, partly because of who it was from, but also because he gets it: patient engagement isn’t just about care providers listening to patients. Patients need to be engaged – to get it in gear – to speak up about what they want, and be active partners in their care.

The note came from Jim Conway, one of my greatest inspirations in this journey:

Jim Conway photoDave, I just finished Let Patients Help! Simply, Bravo!

While I am a confirmed fanatic of patient and family centered care, and would endorse the book enthusiastically for that, I read it as much this week as a patient. I’ve been having some problems with my diabetes and blood sugar—nothing big—and it triggered strong reflections on my care partnership and my role also as a member of my team.

Much like you, I have a strong team with access to great info (Open Notes and PatientSite). Yet like many healthcare professionals, I can move into a shell, or even sulk, when it is about me. The Ten Fundamental Truths About Health and Care not only confronts the license we all have to be engaged in our own care but also comfortably helps us use it for a collective good.

Thanks to you and Danny for a job well done on a journey we all must take.

For information on how to buy this book ($8 or less), see the book’s web page. As reviewer Catherine Rose said on Amazon, “it’s cheaper than most parking fees at the hospital.”:-)

And please, tell friends … and your contacts in medicine. It’s concise, designed to be worth the time for every reader, patient and clinician alike. It really could help improve health and care.

If you don’t know Jim …

[Read more…]

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Orders resume for “Let Patients Help”

Let Patients Help coverWhat a fascinating experience this self-publishing is. You compose the book in Word, save as PDF, and upload it. If you did everything right, within 24 hours they say “Okay, go!” And it’s instantly available for sale.

And if you want to do a revised edition – e.g. to fix 7,000 typos….. or a major rewrite, or anything…. well, just upload another one.  NO COST.

This is sooo different from the print production cycle I grew up with. There, significant costs were incurred every time you make a new master, so you check check check check check before sending it to press. Today, it’s all digital.  And Amazon’s CreateSpace wants to encourage people to just try it, so they charge nothing for uploading files. Not a penny for setting up a title, not a penny for changes.

SO I WENT AHEAD THIS MONTH and released the first version for print, without checking carefully. How interesting! And what feedback I already got from my empowered, engaged readers.

I love that the all-digital workflow means I can make use of all this feedback! So here’s what’s already in this updated edition:

“Let Patients Help”: a patient engagement handbook

Book cover

With Dr. Danny Sands
Introduction by Eric Topol MD

A concise, action-oriented handbook on how to do what medicine calls “patient engagement” – an activated, empowering partnership between patients and their medical professionals.

“I am a better doctor for having read this book. It is clear, concise, and practical. It contains powerful truths that will help both patients and providers (and all the organizations that support them) work together towards what really matters.”

— Laith Bustani, MD, Kingston (Ontario) General Hospital

For more praise, see below.

Where to buy (in eight languages!):

1. English:

  • Amazon (in English; print edition $10 or Kindle $6): Amazon US / UK / France / Deutschland
  • eBook, $6 on Smashwords (ePub for iBook, PDF, Kindle, etc)
  • I can arrange quantity discounts with slower delivery than Amazon. Write to the priority address on the contact page.

2. Spanish (Feb. 2014): “¡Dejad que los pacientes ayuden!”


3. Dutch (Nov. 2013):

  • eBook – email for information

Let Patients Help Chinese cover
4. Greek (Nov 2013): “Οι ασθενείς µπορούν να βοηθήσουν!”


5. Hungarian (Jan 2016): “Engedjük a beteget segíteni!”


6. German (June 2014): “Lasst Patienten mithelfen”


7. French (Nov. 2014): “Impliquons les Patients!”

  • Available on Kindle. Print edition may be available later. 


8. Chinese (2015): 请患者参与

_________________________

From the book’s sale page:

Concise reasons, tips & methods for making patient engagement effective.

The third book by e-Patient Dave, cancer beater, blogger, internationally known keynote speaker and advocate for patient engagement; co-founder and past co-chair of the Society for Participatory Medicine.

It’s concise – less than 100 pages, takes 60-90 minutes to read – because I want people to READ it all. And DO IT.  And if there’s one thing I’ve learned about medicine in recent years, it’s this rhyme:

Useful advice is often concise.

It’s a book of lists:

  • Part 1: Ten Fundamental Truths
  • Part 2: Ten Ways to Let Patients Help
  • Part 3: Tip Sheets

As the subtitle suggests, this book is about partnership between patients and professionals. It tells why it’s valid and important for medicine to listen to patients, with specific how-to’s on making it a reality. A patient engagement handbook.

In keeping with that spirit, I managed to talk some slick doctors into contributing:

“With Dr. Danny Sands”

My famous primary physician, Dr. Danny Sands, is not only on the cover, he’s in the pages: he wrote some of them. In part 3 (Tip Sheets) he wrote:

  • Ten Things Clinicians Say That Encourage Patient Engagement
  • Ten Things Clinicians Say (or do) That Discourage Patient Engagement
  • For Patients: Collaborating Effectively with Your Clinicians
  • Dr. Danny Sands’ Rules for Smart Web Use

Regular readers will know that Dr. Sands has been a pioneer of patient engagement since the 1990s. Way back then he…

  • co-created the first medical record system and patient portal at our hospital, Beth Israel Deaconess
  • co-authored the first published guidelines on how to do doctor-patient email successfully
  • became a friend and colleague of “Doc Tom” Ferguson, founder of the e-patient movement.

(Why does Danny Sands not have a Wikipedia page??)

Introduction by Eric J. Topol, M.D.

I’m really thrilled to be honored that the amazing Eric Topol wrote the introduction. Read the full text of it here: “This book will unquestionably help many individuals become more active and fully engaged in their health care.”

If you don’t know Dr. Topol’s name, here are a few glimpses:

Praise for Let Patients Help!

“I am a better doctor for having read this book. It is clear, concise, and practical. It contains powerful truths that will help both patients and providers (and all the organizations that support them) work together towards what really matters.

“Dave’s story is a testament to the power of people working together to accomplish amazing things against all odds. That’s what we need to do. This is how to start doing it.”

— Laith Bustani, MD, Kingston (Ontario) General Hospital

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“If you’re interested in getting up to speed fast on patient engagement, Let Patients Help is your passport.”

— Susannah Fox, Pew Internet and American Life Project (blog post here)
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“Simply, bravo! … The Ten Fundamental Truths About Health and Care not only confronts the license we all have to be engaged in our own care but also comfortably helps us use it for a collective good.”

–Jim Conway (see blog post), senior quality and safety leader (former senior VP at IHI ; former EVP and COO at Dana Farber Cancer Institute)
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“Will unquestionably help many individuals become more active and fully engaged in their health care.”

From the introduction by Eric J. Topol, MD
_____________

“There’s not a doctor or patient in the land who won’t benefit from reading this clear, concise manual which sets out how each can contribute and collaborate to get better and safer healthcare.”

Dr. Tessa Richards, Analysis Editor, British Medical Journal
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“The culture change that will cure medicine.”

“A must read – a clarion call for the culture change that will cure medicine. If enough people – patients, clinicians, researchers – read this book and act on its wisdom, health and care will be changed, forever, for the better.”

Michael Seid, PhD, Professor, Cincinnati Children’s Hospital Medical Center; Co-Principal Investigator, C3N Project
_____________

“Every medical student must read your book.
How shall we achieve that?”

Bertalan @Berci Meskó, MD, PhD, medical innovator, Webicina.com, author of the award-winning Scienceroll.com
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Questions about the book

  • Why just $8?
    Because I want a gazillion people to buy and read this. I want the decision to be a no-brainer: if you’re at all interested, buy it and read it. And heck, get one for someone else.
  • Volume discounts? I want one for everyone at my conference.
    What, you want discounts off EIGHT BUCKS?? Okay; write to me – dave at epatientdave.com

More questions? Ask in comments below, or email me.

Thank you to everyone who’s supported my work for the past three years, to get to the point where this book is not just possible, but a reality.

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“This book will unquestionably help many individuals become more active and fully engaged in their health care.”

As I said yesterday, my new book Let Patients Help is available for sale now. Here’s the introduction, generously contributed by the famed Dr. Eric Topol.

An extraordinary paradox exists in medicine and health care today. On the one hand, as a recent Consumer Reports cover article on cancer tests pointed out “cancer screening remains stuck in a 1960s view of the disease.”[1] This problem of being stuck in our ways is much broader than cancer screening and can certainly be viewed to be operative across the board in health care. On the other hand, we have the newfound potential to obtain unparalleled, critical data and information about each individual. Whether this is via wearable sensors that capture one’s vital signs or sequencing the DNA that comprises one’s genome, we have new tools at our disposal – tools that were not available just a couple of years ago.

The buzzword of “big data” is used to refer to the immense amount of data that is currently being generated throughout the world—more than a zettabyte per year (that is 10,000,000,000,000,000,000,000 bytes). At the same time we can now generate “big data” for each individual and define his or her medical essence. So we have entered an unprecedented time of the information era finally invading and converging with the medical world.

Moreover, this information is flowing in a new way. [Read more…]

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Neuropathy + chemo brain: Urgent request for expert consult

Lodewijk Bos portraitLodewijk Bos (Twitter @ICMCC), is a good friend in Holland – my wife and I have visited him twice. (My US friends always wonder about the name – Lodewijk (“lodevike”) is the Dutch equivalent of Ludwig.)

Lodewijk has an extraordinary medical history – he theoretically shouldn’t be alive today but he continues to beat all odds. One factor has been his incessant research: an ultra-e-patient, multi-degreed (bio here), author of several books, publisher of the great ICMCC site on health IT (“compunetics,” actually), and editor of the Springer journal Health and Technology, he stops at nothing.

Well, Lodewijk is “Unhappy again,” as he puts it mildly, at the end of his rope again, this time with pain and chemo fog.  I can’t explain it precisely so please see his post, pass this around, and if you find anyone who might be able to help, have them reply on his blog.

A few bits from his post:

On July 2 I had surgery on my left foot … from there on it went wrong, seriously wrong. I was told I should not stand or walk on that foot for at least two day. And I was sent off, on foot. So by the time I arrived at the reception desk 5 floors down … I was given new bandaging and this time someone went to find a wheelchair.

Previous conditions and treatments have left him with neuropathy (nerve damage, causing continuous pain). This new wound wasn’t healing, so days later he contacted a previous wound nurse, who …

… suggested a new kind of bandage Promogran Prisma. And lo and behold, it seems to work. [But] my neuropathy worsened.

The open wound on top of my neuropathy was already hell, but that diminished considerably after a couple of days. However, after applying the new bandage, my foot started hurting much more, but above all, my chemo brain came back in full force. [It can recur years after chemo ends.] When I get out of bed I stumble, having to catch myself not to fall.

After 5 minutes that acute problem disappears (balancing problems remain however), but then the next one appears. My eyes start to spontaneously turn [toward the] nose bridge, as if I were squinting. Which makes concentrating a very complicated business. Combined with the physical balance problems, it leaves me, activity wise, almost paralyzed. Oh, and my tinnitus is worse than it has been for years.

I sincerely hope that the wound heals soon. … walking is no option, the wound is over 1,5 cms large. .. and if you know of any neurologist who might be knowledgeable about this kind of problems, please contact me in the comment field.

Here’s hoping our network of connections can help this time.

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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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