e-Patient Dave

Power to the Patient!

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The best of medicine: my wife gets the new “muscle sparing” knee replacement

Ginny at Half Moon restaurantOn Facebook Friday I posted this picture of my wife Ginny, saying “There is an astounding story behind this photo. Details Monday.” Well, it’s Monday.

As you read this, bear in mind, your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The astounding story:

In this photo we were out to dinner, nine days after Ginny had both knees replaced. She walked into the restaurant using only canes – no walker, no wheelchair. The surgeon is Howard Luks, the social media orthopedist (@HJLuks), whom I met on Twitter in 2009, and the surgical approach he used is called muscle-sparing (or “quad-sparing”) minimally invasive surgery, part of a larger package of methods he uses, described below. Bottom line:

  • None of her muscles were cut
  • She had no transfusions
  • She has not needed to have any of her dressings changed
  • She left the hospital on day 3, was discharged from rehab 8 days after surgery, and today on day 12 we’re returning to New Hampshire, to continue outpatient physical therapy from home.

Of course she’s still on pain meds, tapering down, and her endurance is of course limited. But she is basically functional and able to live on her own if she needed to, or rehab wouldn’t have discharged her.

Here’s a video of her walking around the hospital floor – 500’ – with a walker for balance (not leaning on it), less than 48 hours after leaving the O.R., and on the right, at rehab, walking with just canes, a week after the surgery:

She was discharged from rehab after demonstrating (among other things) that she can safely walk up and down a full flight of stairs … six days after the surgery. She can get herself into and out of bed, into and out of our Prius, etc. She’s not speedy at any of it but she’s functioning reliably.

(Of course I have Ginny’s permission to talk about all this. Also, I’m an e-tool geek and she’s not, so I’m the one using the tools discussed here.)

Again, everyone, please read this: your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The part Ginny played, as an activated, engaged patient

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Mayo’s “Healing Words” program – reading from “Facing Death – With Hope”

A month ago I posted about my trip to the Mayo Clinic as Visiting Professor, and noted that the morning before my Grand Rounds lecture, I went into a video studio and recorded a reading about facing death, from my first book, Laugh, Sing, and Eat Like a Pig. (The title is explained in the video.) Here’s the video. (Email subscribers, if you can’t see the video, click the post headline above to come online.)

As I noted in the previous post, this was recorded for Mayo’s “Healing Words” program for their in-patient TV channel, produced by Mayo’s Dolores Jean Lavins Center for Humanities in Medicine (@MayoHumanities on Twitter and on Facebook). The first 25 minutes are discussion with host Jacque Fletcher about the book and about my experience of facing death. Then there’s an 8 minute reading – the section that later became my tiny second book, Facing Death – With Hope, then Jacque closes the program, talking about the therapeutic value of patients blogging.

As always, looking at it afterward, it doesn’t look polished enough – but it was done in one take, with no rehearsal, no mirror to see if my hair was okay:-), and – for those who’ve been following my fitness saga on Facebook – it’s pretty obvious that my clothes had become too big! (The shoulders on the suit are an inch down the arm, you can see air between the shirt collar and the neck… oh well!)

But it was real, and I hope it will be of value to future viewers. I’m pretty sure that those of you who lived through those months in 2007 with me will be reminded of what that time was like. Words will never express the value of your support back then – but they don’t need to, because we know it was real.

Thank you to the Humanities department for this production, and thank you especially for granting permission to present it outside of Mayo.

 

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BMJ and Mayo blogs published two of my essays today

A quick note as I prepare to leave for my very exciting Mayo Clinic visit next week – unexpectedly, today two new posts went live on other people’s blogs.

Mayo Clinic Social Medial Health Network:
Social Media is the Profound Change Fueling the e-Patient World

Transformation of Knowledge Access
Click to enlarge

I’m on the Mayo social media center’s External Advisory Board, so I’m required to write something yearly, and this was it – timed to coincide with my trip next week, though I didn’t know they’d time it this closely.

An important part of this post is the illustration – an updated version of a graphic I’ve used for years, highlighting that medical knowledge has shifted from being a closed system to an open network. This concept is widely known in high tech, but can seem downright alarming to people in medicine. I don’t fault them – it’s their training, and the idea of a  closed system carries with it great responsibility. But it has changed, and it’s important to understand.

Please read the post (it’s not long) to understand the increasingly apparent impact this change is having on the practice of medicine. Please.

Not coincidentally, the graphic was first created by Dutch colleague and now friend Lucien Engelen, who conceived and produced the TEDx Maastricht conference where I did my TED Talk four years ago. And the first version of this graphic was produced a year before that, back in 2010. Thought leadership is thought leadership.

BMJ blog:
“Precision medicine” needs patient partnership

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Proposing a science of patient engagement, #3: The role of unexplained observations

Cover of Structure of Scientific Revolutions 50th anniversary edition#3 in a series. Previous entries:

#1: Proposing a new science of patient engagement, including the four minute interview video that defines the need for the project.

#2: The stages of a scientific field: Thomas Kuhn’s framework for how a field becomes a science organized around a paradigm, and then, sometimes, realizes that “anomalies” mean the paradigm is no longer sufficient to serve the field’s needs.

The purpose of this project is to examine whether medicine needs to become more methodical – more scientific – about what we mean by patient engagement, and what factors determine how well it works.

The role of unexplained observations

Science depends on its findings being … dependable! Section 2 of Structure, “The Route to Normal Science,” begins:

In this essay, ‘normal science’ means research firmly based upon one or more past scientific achievements, achievements that some particular scientific community acknowledges for a time as supplying the foundation for its further practice.

Let’s add line breaks and boldface, to spotlight the elements of thought:
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Proposing a science of patient engagement, #2: The stages of a scientific field

Cover of Structure of Scientific Revolutions 50th anniversary editionRevised March 12, adding Hacking’s “structure” passage.

This is #2 in a new series “Proposing a new science of patient engagement,” using the landmark 1962 book The Structure of Scientific Revolutions by Thomas Kuhn as its framework. If you haven’t read the first entry, please do, including its dozens of comments, which have links to valuable ideas and resources.
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In an upcoming post I’ll lay out briefly why it seems this project is needed. I say “seems” intentionally; this must be a shared exploration. As I said in #1,

My goal is … to have science move forward methodically in its thinking. Maybe we need a new science – a new way of understanding what needs to be measured and optimized – or maybe we don’t. I just ask that we examine the evidence together.

This post will lay out, briefly, the stages Structure describes for the progression of science. I’m doing this first because that framework provides the context for my assertion that we have a problem – a scientific problem in the field of medicine – that may require formally (and rigorously) changing our conception of who is capable of what in the patient-clinician relationship.

As you’ll see, a shared conception of how things work is exactly what a paradigm involves.

Kuhn’s view of the progression of a science

From Ian Hacking’s widely praised introduction to the 50th anniversary edition of Structure:

Structure and revolution are rightly put up front in the book’s title. Kuhn thought not only that there are scientific revolutions but also that they have a structure. …

Here is the sequence: (1) normal science…; (2) puzzle-solving; (3) paradigm…; (4) anomaly… (5) crisis and (6) revolution, establishing a new paradigm.

Going a bit deeper on some of Kuhn’s core concepts:
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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:
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