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March 3, 2015 By e-Patient Dave 56 Comments

Proposing a new *science* of patient engagement

In three weeks at the Mayo Clinic, as their invited Visiting Professor in Internal Medicine, I’ll be delivering the most fascinating talk of my career. I’ll be formally starting the process of examining whether we must all agree that there’s a hole in the dominant paradigm of how medicine works, and whether we must solve this together by creating a new, scientific approach to patient engagement.

To start, please watch the four minute video below. For convenience, and to make it more searchable, at bottom of this post is a transcript.
Cover of Structure of Scientific Revolutions 50th anniversary edition

To do this I’ll be using the 1962 book that brought the word “paradigm” into popular use: The Structure of Scientific Revolutions, by Thomas Kuhn. His definition of paradigm was much more strict and rigorous than the trendy loose word we throw around today; he studied numerous scientific revolutions (Newton, Copernicus, etc) and identified a regular, repeated structure to the process by which a scientific field takes form and then, sometimes, realizes a revolution is needed.

The process is both scientific and sociological – a fact that annoyed the crap out of scientists who believed that they are solely logical. From Wikipedia:
[Read more…]

Filed Under: Best of 2015, patient engagement, public speaking, Science of Pt Engmt 56 Comments

February 17, 2015 By e-Patient Dave 1 Comment

Health 1.0, 2.0, 3.0: today’s flow of information has changed what’s possible

This 51 second animation accompanies my article last week in the BMJ, “From Patient Centred to People Powered: Autonomy on the Rise.” The video expresses, concisely, a slide that for years I’ve presented in 3-5 minutes. It’s an idea first published back in 2010 by Lucien Engelen, during the same time period when he was preparing for the TEDx Maastricht event in April 2011 where I spoke. It shows how the flow of valuable information has changed, which makes new things possible, as in all other parts of life.

From the BMJ article: [Read more…]

Filed Under: Best of 2015, Innovation, Leadership, Participatory Medicine, Patient-centered thinking, public speaking 1 Comment

December 16, 2014 By e-Patient Dave Leave a Comment

“Balancing Diabetes” by @SixUntilMe

Balancing Diabetes cover

Kerri website photo
Kerri’s photo on her blog

I’m going to do something really rare: I’m going to endorse a book I’ve barely started reading. It’s Balancing Diabetes: Conversations about finding happiness and living well, by the famous diabetes blogger Kerri Sparling, aka @SixUntilMe. (She was six until she was diagnosed and became the “me” she is today.)

This endorsement is rare because I’ve always said I can’t endorse something I haven’t consumed. (Did you know that most book blurbs are written by people who haven’t read the book?) But this situation is out of the ordinary:

  • Last week at the SuperPatients event in Providence, I witnessed what a powerful speaker Kerri is. She owned that room for her 20 minutes – like a good TED Talk. And she wasn’t just a capable speaker – she created the world of living with diabetes. As much as I’d heard about diabetes through the years, I had never gotten the world of living with it. To create that in minutes takes extraordinary skill.
  • She signed my copy of her book, and last weekend I started reading it. Bingo, in the first pages it was clear that this is the same voice. (I should have known, because her blog is just as direct and powerful, but so often books come out different. This one works.)

So I’m endorsing. Buy it if you want to understand life with diabetes, or if you want a great read about how different a patient’s point of view is, compared to what we read about the disease per se.

I also love that Kerri has woven this disease into her life, and though she doesn’t love the disease, she loves her life. That’s important, because the book is about balancing, about having a life you love.

See, that’s patient centered care: looking at care from the patient’s perspective, separate from what the lab tests say.

p.s. I first learned of Kerri years ago when she blogged about her pregnancy. Why’s that remarkable? Because when she was diagnosed as a child she was told she shouldn’t have children. Well, as fans of her Facebook page know, today she has one of the most remarkable, amazing four year olds in the world. The child’s nickname is Birdie… check the cover.

 

Filed Under: books, public speaking Leave a Comment

December 2, 2014 By e-Patient Dave 3 Comments

“Activate your super-patient powers”: Public event (free!) at Brown next Monday

Superpatient flyer screen capture
Click to view & download the PDF (459k)

For years I’ve been saying that this movement won’t really be creating change until it gets out of the conference world and reaches Main Street. (Often I say we won’t really be getting there until the people you meet at the grocery story know what we’re talking about.)

So you can imagine how thrilled I am that Brown University in Providence, R.I. is supporting a first-of-its-kind grass roots event next Monday night, attached to a session I’m teaching the next day for one of their courses.

We’re playing with the idea of tying this to “how superheros got their superpowers” – the so-called “origin story,” like Peter Parker and his radioactive spider – to help people see that they may be capable of more than they realized. And in that context, we realized we have three different types of “superpatients”, who will present:

  • Acute care, like my kidney cancer – it came up suddenly (and now it’s over)
  • Chronic care – people who manage a chronic condition, like famous diabetes blogger Kerri Sparling (@SixUntilMe)
  • Crisis care – patients or caregivers who step up in a crisis and do everything they can to help, exemplified here by Pat Mastors (@PMastors).

These cases are all very different but they have a common thread: when patients get activated they can make a huge difference.
_________

This event all came together very quickly, so I apologize for the last minute nature of this notice. If you can come, that’ll be great. In any case, feel free to download this PDF or just send people this link.

If this gets great reviews, I hope to do more. If it doesn’t, we’ll fix it. Because from now on it’s “game on” – let the change take root!
__________

The course where I’m speaking is Brown’s Executive Master in Healthcare Leadership program – a year-long course for mid-career executives. Tuesday is their final session of the course. Thank you to Angela Sherwin and Judith Bentkover for their vision, and to Brown’s program for helping make this happen!

Filed Under: Events, Leadership, public speaking, Uncategorized 3 Comments

October 29, 2014 By e-Patient Dave Leave a Comment

Notes for @BCPSQC #QualityChat Twitter chat

BCPSQC web logoFor Wednesday’s “#qualitychat” Twitter chat here are a few notes.

  • Background page on this tweetchat series
  • @BCPSQC is British Columbia Patient Safety and Quality Council – I spoke there in February. Met @CourageSings & many more!
  • The @BCPSQC website: bcpsqc.ca
  • My July post “There’s something about Canada“
  • My interview on the CBC Radio show “White Coat, Black Art” with Dr. Brian Goldman

A few notes from participants at the February event

  • “The BC Cancer Agency has led a provincial project asking patients for solutions to some of the lower Provincial Cancer Care Patient Experience scores.  It is a project to listen to the patient voice and implement some solutions that came from patients and their families. … [We have been] inspired to come together as a province to have a provincial approach and also, look at solutions that patients suggest. ” Sue Fuller Blamey Corporate Director, Quality & Safety, Provincial Health Services Authority and BC Cancer Agency
  • Let Patients Help “was sent to all Community Engagement Advisory Network members … It is also a resource that we like to share in our day to day work now.” Saori Yamamoto Community Engagement Advisory Network Co-ordinator, Vancouver Coastal Health
  • “It really brought things back to the patient and showed us THEIR perspective on healthcare.  One thing that really stood out for me what the emphasis on including patients as partners in their own care, full members of the care team.  It challenged the all-too-common thinking that they are just unknowing recipients of the care that “the experts” decide is right for them and showed that, not only are many of them intelligent and able to participate in the conversation and decision making, but also (and perhaps more importantly), that they are real partners in it, with as much knowledge and information to share re: the “problem” as anyone else on the team.” From a Quality Improvement Consultant
    • Note how this echos the thinking of the Mayo Clinic’s chief residents in this post

Post-event summaries

In less than an hour, moderator @Kevin4Quality (Kevin Smith) posted the after-event resources!

  • Transcript (all 450+ tweets)
  • Analytics (who did how much of what, etc)
  • Storify story (a curated set of highlights of the event)

Thanks again to all for a great event!

Filed Under: Events, patient engagement, patient safety, public speaking, Social media Leave a Comment

October 21, 2014 By e-Patient Dave 2 Comments

Speaker Academy #20: Message lessons from a video boot camp

Drew Keller at MayoThis is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to speak on a subject but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

I’m at the 6th annual Mayo Ragan Social Media Summit, in a session called Video Boot Camp. It’s conducted by former PBS producer Drew Keller, and his thinking about how to think out a video exactly matches my advice in this series on how to think out your speech.

Examples:
[Read more…]

Filed Under: public speaking, Speaker Academy 2 Comments

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