e-Patient Dave

Power to the Patient!

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Patient and family engagement event August 8 in Concord NH

On Monday, August 8, my state’s Foundation for Healthy Communities (HealthyNH.com) is hosting an event where I’ll be speaking, titled “Improving Care at the Bedside through Effective Patient and Family Engagement.” It’s mostly intended for New Hampshire people, but organizer Tanya Lord says “I don’t think we would turn anyone away.”:-)

So come on down! Or up, or over, or whatever. Here’s a very short video introduction. (Email subscribers, if you can’t see the video, click the headline to come online.)
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Gin-knee-versary! A year since my wife got her unbelievable new knees from @HJLuks

Ginny at Half Moon restaurantThis is a verbatim copy of an extraordinary blog post last year, which I updated several times.

It was a year ago today that orthopedist Howard Luks @HJLuks replaced both my wife Ginny’s knees in one day, and as you’ll read, his method is so incredible that not only did she get no transfusions, her bandage didn’t even need to be changed until the follow-up visit weeks later. And as you’ll see, the progress of her recovery was extraordinary.

Want new knees? Read how Howard does it. Know anyone who’s considering new knees? Share this with them, please! I even gave it a memorable URL: bit.ly/ginnyknee

July 7, 2015

On 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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“The Patient’s Perspective – medicine’s new true north” – essay in PLAID diabetes journal

PLAID Journal coverFor the past year I’ve mentioned this in speeches, but I’ve never written about it here:

In November 2014, a routine blood test revealed that my hemoglobin A1C was slightly elevated, making me what they call “pre-diabetic.” (See lab results below.)

Well, that got my attention.

Why? Because, through social media, I know a lot of really smart, articulate, passionate members of “the DOC” – the diabetes online
community – and I’ve learned all kinds of things about the reality of diabetes that you don’t see in the TV commercials.A1c screen capture

I’ve learned that it’s not rare for a basically “healthy” person with diabetes (PWD) to die in their sleep when their blood sugar crashes; I’ve learned about unfixable nerve pain and amputations; I’ve learned about all kinds of things that can go wrong when diabetes gets out of control. I don’t even know enough to make a properly prioritized list, but I know enough to say you do not want to have diabetes if you can avoid it.

(Footnote: it drives many of us nuts when a TV commercial or news story talks about “diabetes” as if it were one thing. It’s not. Type 1 diabetes (T1D) is medically different from type 2 diabetes (T2D), which I am at risk for; it typically arises in middle age, but has been seen as young as age 3. “Diabetes prevention” is an ignorant thing to say: Type 1 can’t be prevented, Type 2 sometimes can. But that’s a rant for another day.)

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New presentation: “Failure to share data – both ways – makes medicine fall short.”

As healthcare progresses, my business is changing: new speech topics, and more advisory projects. This is a two-part video of a new speech last month, at the New England chapter of HIMSS (the big health IT systems society). Finally clients are agreeing that there’s more to talk about than “Dave’s scary cancer story” – most of this speech is information that didn’t exist when I started giving speeches. Predictions are coming true, so new imperatives emerge.

The videos: (Email subscribers, if you can’t see the videos, click the headline to come online.)

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Reusable building blocks: a speech (to the Philippines!) by video Q&A

Click to watch the video series in “couch mode” (autoplay) on Vimeo

One of the major enablers of the e-patient movement is the internet. In addition to serving as a vast widely-accessible library, it provides “information capillaries” that make it possible for vital information to flow to the point of need – without centralized control. My life is just one of many that’s been saved by this radical change in what’s possible.

Another mechanism is that the Web has made possible a truly incredible collection of tools by which we can assemble combinations of things that we find useful – again, without any centralized control. One example of this is MOOCs (Massive Online Open Courses), which I’ll be writing about more soon: the content for a course is made available to anyone who has internet access, which is enormously different from requiring that someone travel to the school.

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“Let patients help reinvent radiology” (my first Periscoped speech)

Tuesday night in Chicago I gave a 28 minute talk for Philips customers at the huge (56,000 people) radiology conference, RSNA. The leading-edge social media guy at Philips, Noah Harpster (@PhilipsLiveFrom), broadcast it live using the free Periscope live-streaming app (owned by Twitter), and boom, here’s the archive. Unpolished, raw, live. Free.  (Email subscribers, if you can’t see the videos below, click here to view the post online.)

This is the first time I’ve spoken to radiologists. This talk has very little about my cancer story, and a lot about the impact on professionals of two things:

  • When assets digitize, things change fast
  • Information makes new things possible

I also pulled out some props – including a 3D printout I had done locally of my lungs (my bronchi and metastases). I told you that when things digitize, new stuff becomes possible.

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