Let Patients Help! A patient engagement handbook
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About this ebook
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e-Patient Dave deBronkart
Dave deBronkart, widely known as “e-Patient Dave,” is a cancer patient and blogger who has become a noted activist for healthcare transformation through participatory medicine and personal health data rights. The term “e-Patient” was coined by “Doc Tom” Ferguson MD and is the subject of his seminal paper, “e-Patients: How They Can Help Us Heal Healthcare,” funded by Robert Wood Johnson’s Pioneer Portfolio.In 2012 the National Library of Medicine’s History of Medicine Division announced that it’s capturing Dave’s blog into its archives.A successful speaker in high tech before his illness, Dave is today the leading spokesman for patient engagement, attending over 180 conferences and policy meetings internationally in the past two years. He is a founder, board member and past co-chair of the Society for Participatory Medicine, formed by Ferguson’s followers after his death, and was one of the patient participants in the OpenNotes project.In 2009 Dave’s blogging about health IT put him on the front page of the Boston Globe and thrust him into DC policy discussions about patient access to medical records under Meaningful Use. He’s appeared in Time, Wired, U.S. News, and the HealthLeaders cover story “Patient of the Future.” In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better” for their role as founding co-chairs of the Society for Participatory Medicine, bringing official recognition to the importance of the e‐patient movement.In 2011 his TEDx talk On.TED.com/Dave went viral globally, rising into the top half of the most-viewed TED talks of all time; volunteers have added subtitles in 26 languages. Its tagline is his appeal, and the title of his first Smashwords book: “Let Patients Help.”
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Let Patients Help! A patient engagement handbook - e-Patient Dave deBronkart
Introduction by Eric J. Topol, M.D.
CreateSpace Independent Publishing Platform
Beta Kindle edition,* v0.94, April 12, 2013
Copyright © 2013 Richard Davies deBronkart, jr.
dba e-Patient Dave
ePatientDave.com/let-patients-help
All rights reserved.
Except as permitted under U.S. Copyright Act of 1976,
no part of this publication may be reproduced, distributed,
or transmitted in any form or by any means, or
stored in a database or retrieval system,
without the prior written permission of the publisher.
Publisher: CreateSpace Independent Publishing Platform
www.CreateSpace.com
ISBN: 1466306493
ISBN-13: 978-1466306493
* Yes, a beta edition – a pre-final version, distributed for comment and feedback. I’m doing this because the modern approach is to include feedback from many others; economically this is made possible by Amazon’s CreateSpace self-publishing system, which charges nothing to issue a new edition. When things go digital, new things become possible.
Contents
Contents
Foreword
Preface
Acknowledgements
Introduction
Dedication
Basics 1:
Roots of the Movement
Basics 2:
What Empowered
and Engaged mean
(and a short glossary)
A Short Glossary (read this!)
for those new to medicine
Patient Engagement
xx
e-Patient: xx
Types of people who work in the industry xx
Terms related to the changing role of the patient xxi
Terms related to who calls the shots xxi
Part 1:
Ten Fundamental Truths
about Health and Care
1.
Patient is not a third person word
2.
Patients are the most
under-used resource
3.
We all know something.
No one knows everything. (Not even doctors.)
4.
Googling is a sign
of patient engagement
5.
We perform better
when we’re informed better
6.
But information alone doesn’t change behavior
7.
Clarity is power
8.
Health is not medicine.
Treatment is not care
9.
The urge to care
for our families is strong
10.
Patients know
what patients want to know
Part 2:
Ten Ways to Let Patients Help
1.
Let patients help:
give us our data!
2.
Let patients help
take care of their families
3.
Let patients help
scour the earth for information
4.
Let patients help
with quality and safety
5.
Let patients help
control the cost of care
6.
Let patients vote
on what’s worth the cost
7.
Let patients use
their informed shopper skills
8.
Let patients help
make treatment decisions
9.
Let patients help
set research priorities
10.
Let patients say
what patient-centered means
Part 3: Tip sheets:
How To Be e-Patients and Empowering Providers
Ten things e-patients say
to engage in their care
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
Ten things insurers & employers say
to let patients help
Epilog:
The Road Ahead
About the Authors
Appendix:
Stop the denial.
Foreword
By George Alexander, longtime friend
and publisher of my first book, from the online journal
I kept during my cancer: Laugh, Sing, and Eat Like a Pig
I remember vividly how shocked I was when I learned that Dave deBronkart, who I had known for decades, had serious — probably terminal — kidney cancer. And then, how startled (and impressed) I was that he was letting those of us who were concerned about him follow the details of his treatment on his daily on-line journal at CaringBridge.org.
Those posts were remarkable for their honest, candid revelations about Dave’s emotional turmoil. Yes, the clinical details were all there—the consultations about treatments, the X-rays, CTs and MRIs that confirmed the grim prognosis and the spread of the cancer. But it was Dave’s openness about his emotions that moved me. Was he chronicling his last days on earth? It seemed likely. He couldn’t know what was in store for him, and yet he shared it all with the rest of us.
And it quickly became clear that Dave was not going to be a passive patient. He collected whatever information he could find online about his condition and the possible treatments. He shared it with us, his readers, and discussed it with his doctors. In his journal, he wrote about everything he encountered in his journey into the world of medical care—the bad as well as the good.
His primary doctor and oncologist were available via email or the hospital’s patient portal,¹ and Dave made full use of that for questions, appointment-setting, and referrals. Thanks to pioneering work at his hospital in the 1990s, he was also able to consult parts of his own medical records online. (Shouldn’t that be available to all of us?) These electronic tools kept Dave informed, and greatly sped up his ability get answers and be engaged in his treatment.
And, importantly, his doctor recommended a good online patient community, where he got invaluable advice and