e-Patient Dave

Power to the Patient!

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August: “retreat and think”

Cover of Structure of Scientific Revolutions 50th anniversary edition

For the month of August I’ll be mostly offline, for a period of “retreat and think.” It’s not a full-bore vacation; I can still be reached for anything time-sensitive (see my Contact page) but I’ll be less active online.

This year has already been full of change – Ginny’s knee replacements, Visiting Professor at Mayo, the first Patient Engagement Fellowship, new publications, and most of all, rethinking what “patient” means (and could mean), per the book that made paradigms famous: The Structure of Scientific Revolutions (right). Our movement is gaining traction, which means a change agent needs to rethink. This month is good for that (I’m only traveling to one event), so I’m going to dial back the dialog.

September will be amazing.

One reason to retreat now is that on August 28 the calendar flips from empty to packed.

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30 days post-op: approved to drive!

Ginny in the driver's seat againHow perfect: a month to the day after her June 24 bilateral knee replacement, today the physical therapist gave Ginny the thumbs-up to drive.

Ginny walking, day 30This means she has the strength and mobility to be able to respond safely to traffic situations. That’s a heck of a recovery after having both knees cut open, eh?

As you may have noticed, this is a very independent woman. So this makes her very happy.

At left is a photo of her strolling ever so casually into the store today, no canes, no bandages, no nuttin.

You know, I saw an orthopedics journal article recently that poopooed the faster recovery time of minimally invasive surgery, saying there’s no evidence that the patient’s doing any better six months later. Seriously, doctor? A faster return to normal isn’t worth anything?

That’s a clear indication that some doctors need to become a lot more patient-centered. As in, patient-centered outcomes, patient-centered outcomes research (PCOR), etc.

For those who haven’t been following the story, it’s here. Here’s to modern medicine and patient engagement!

(It’s not over – she’s still on pain medications and doing exercises and PT. But she’s strong enough to walk without help, at least modest distances. And drive.)

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Writings and upcoming events – July 2015

Like last month, here’s this month’s update on travels, events, and articles (including a first for me!).

In my travels if you’re in the area and want to connect, contact me.

Writings:

  • Do you use online symptom checkers? Go for it but be wise: Last Friday I was interviewed by the Boston Globe (see below) to comment on a new BMJ article. It was such a stimulating topic I wrote a much-mentioned post about it on e-patients.net, and I hope to be writing more

Media mentions:
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“Being heard as possibility”: my talk at #RebelJam15 (Speaker Academy #25)

Helen Bevan 'outwitted' slide
My closing slide, stolen from the NHS’s remarkable Helen Bevan. Video of my talk is below.

This post includes the video, below, of an unusual speech for me: it’s not about healthcare, it’s about speaking – particularly, how to compose your message in a way that people hear (genuinely) as a new possibility for the future, not a complaint about today; and so that they come away from your talk with a new view of life.

In healthcare transformation this is really important, for two reasons. First, a lot of people are just sick of hearing over and over about the problems (which certainly are real!). And second, since most of the problems haven’t budged much in the past 20 years, it begs the question: have we been wasting our breath??

And that leads to the question I blogged last year: “What could be said that will make any difference??”

Then two weeks ago I wrote that Rebel Jam 2015 was about to happen – a full 24 hour, round-the-clock round-the-world webcast event sponsored by RelEvents and conducted by three different groups working to create real change from within the system: Change Agents Worldwide, Corporate Rebels, and Rebels At Work. I said my favorite expression of their approach is to figure out how to “rock the boat without falling out.”

I was one of their speakers, and I just got my hands on the video of my talk. Below. Caution; this may require that you give up some of your ideas on how to make a point and how to create change. It’s my approach, for what it’s worth.

Rebel Jam Webcast – e-Patient Dave: “Being Heard as Possibility: How a patient became Mayo’s Visiting Professor” from e-Patient Dave deBronkart on Vimeo.

Next in the series: #26: To hone your skills, eight great TED Talks

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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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Friday: It’s #RebelJam15! Much to learn – and FREE! (Speaker Academy #24)

RebelJampot

This is an important, free opportunity for all those who want to change the world to learn from people who have experience.

This is the latest in the Speaker Academy series, which started here. 

I first encountered the “corporate rebel” movement in Saskatchewan two years ago. It was an unexpected, unscheduled pre-conference by Helen Bevan of the UK’s National Health Service – a dry run of a half day workshop she presented a week later in London. Her thoughts were so fresh, relevant, and potent that I almost fell off my chair. I mean, look what I tweeted, mid-session:
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