Must-Read Book for Migraine Patients – Let Patients Help

Of all the issues affecting those of us with Migraines, working with our doctors as treatment partners is very high on my list. We know our bodies best, and we have the most at stake in our Migraine treatment, so it’s vital that we learn about Migraine disease and take an active part in our own care and treatment.

LetPatientsHelpDave deBronkart, better known as “e-Patient Dave,” has a new book out that I can’t recommend highly enough. The book is Let Patients Help, and the subtitle is A “patient engagement handbook – how doctors, nurses, patients, and caregivers can partner for better care.

Before I go on, I should explain that Dave talks a great deal about e-patients. Since we’re online, one might think the “e” stand for electronic, but it doesn’t. It stands for empowered and engaged, and what those words mean when it comes to patients are explained fully and beautifully in the book.

Let Patients Help has some basics and a short glossary that precede the three main sections of the book:

  • Part 1: Ten Fundamental Truths about Health and Care
  • Part 2: Ten Ways to Let Patients Help
  • Part 3: Tip sheets: How To Be e-Patients and Empowering Providers (This section was written with Dr. Danny Sands.)

These three sections are followed by an extraordinary epilog, and appendix, plus information about Dave. You may remember Dave from his video in my post Getting Copies of Migraine Medical Records – Our DaM Data.

I could continue with my opinion of Let Patients Help, but offering you some quotes from the book will, I believe, give you a more complete impression of it:

  • “Patient is not a third person word.”
  • “Patients are the most under-used resource.”
  • “We all know something. No one knows everything. (Not even doctors.)”
  • “Clinicians have information overload, but the internet lets ordinary patients see information that their doctors might not. Yikes: does that clash with our cultural assumptions!”
  • “Nobody can do their best if they don’t have relevant facts. This has turned out to be one of the most pervasive cultural disconnects I’ve seen in medicine…”
  • “Health is not medicine. Treatment is not care. From now on for me it’s not ‘healthcare,’ it’s ‘health and care.'”
  • “It’s perverse to keep people in the dark then call them ignorant.”

There are some magnificently helpful lists in Let Patients Help:

  • 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
  • and more!

I want to share one more paragraph from Let Patients Help. It tells you why Dave wrote the book, and why I think we should all own a copy:

In this short book I’ve distilled my view of the movement into short sets of ten points and ten actions, with an even simpler title: Let Patients Help. Why short and simple? Because big books don’t get read, but concise instructions are easy to grasp. And I want you to grasp these points.

If we’re to manage our Migraines as well as possible, the day of the silent, obedient patient must be over. We can’t expect to walk into a doctors office and be given a prescription for a miracle that will immediately bring our Migraine under control. We must be part of the process, an informed and active part of our health care team. Let Patients Help is a wonderful too for getting there and staying there. The book is fairly widely available and quite affordable. I got my copy on Amazon, where the paperback is $7.20, and the Kindle edition is $6.00.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • e-Patient Dave deBronkart
    5 years ago

    Why thank you, Teri!

    I want to give proper attention to my primary physician, Dr. Danny Sands. He’s on the cover for good reason (he practices this way), and he’s the one who wrote the “tip sheet” pages for clinicians.

    I’d love to hear some specific examples of where being an engaged, empowered patient helped migraineurs get better results. Same for docs of migraineurs.

  • Teri-Robert author
    5 years ago

    You’re welcome, Dave! The thanks should actually go to you and Dr. Sands. I didn’t get much time to talk with you when we met at the e-Patents Connection meeting a couple of years ago, but one reason I love your work is that you articulate so many of the points I believe in, and you articulate them so well and creatively.

    I’m sure you’re aware of the studies showing that educated patients are more complaint with their treatment plans and have better outcomes. I wish more patients and doctors paid attention to that research.

    Recently, I helped a Migraine patient whose Migraine treatment was doing nothing and who told me her doctor never listened to anything she said. She said that he just “threw” new prescriptions at her at every visit, without even discussing them with her. This had been going on for several years. I took our conversation off-line to telephone, and we talked for a couple of hours. When I said, “The person with the most at stake gets to be in charge,” it clicked with her, so we talked about how patients can insist on being active treatment partners with our doctors and how we can express ourselves with new doctors so they understand that’s what we’re trying to do – that we ask questions not because we doubt them, but because we need to learn and understand. I suggested a particular Migraine specialist for her. After her first appointment, she let me know how much she had liked the doctor and nurse practitioner in the office. She had hope again. She called me last week, so excited that she and her doctor were making progress, and she’s starting to gain some control over her Migraines.

    I know quite a few Migraine specialists who love educated and empowered patients. Dr. William Young, from the Jefferson Headache Center in Philadelphia, was a guest on an online chat I hosted several years ago. When someone asked him his thoughts on educated patients, his reply was, “Educated patients are better patients. I’d rather have a treatment partner than a dishrag.”

    Again, Dave, thank you!

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