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    Let Patients Help! A patient engagement handbook
    Let Patients Help! A patient engagement handbook
    Let Patients Help! A patient engagement handbook
    Ebook102 pages45 minutes

    Let Patients Help! A patient engagement handbook

    By e-Patient Dave deBronkart

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    LanguageEnglish
    Publishere-Patient Dave deBronkart
    Release dateApr 15, 2013
    ISBN9781301655038
    Let Patients Help! A patient engagement handbook
    Author

    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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      Book preview

      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

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