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December 2, 2015 By e-Patient Dave 5 Comments

Washington Post and that viral coffee mug: two important posts on the e-patient blog

Google doctor mug — Photo: facebook.com/TheEmergencyMedicineDoctor

A quick note to draw your attention to two posts this week.

First, the coffee mug at right has gone crazy viral on Facebook, with over 100,000 shares in the first few days. It’s a great big mudpuddle splash, smack into the changing e-patient reality compared to how many doctors were trained. Yes, there’s junk on the internet and some people (including some patients) are loco. That does not mean patients should just shut up and expect the doctor to know everything. So, on the e-patient blog I posted this explanation:

The truth about that “your Googling and my medical degree” mug

Second, yesterday’s Washington Post had a great, well researched and comprehensive piece about medicine listening to patients. Reporter Susan Allard Levingston interviewed and cited many people I know and several I don’t, including my doctor Danny Sands, Mayo’s Victor Montori, ACOR, SmartPatients, Inspire.com, PatientsLikeMe, the BMJ’s patient partnership program that I’m a part of, and more. My post about it:

Washington Post nails it about patient-clinician partnership

The timing of this clash couldn’t have been more perfect to illustrate the topic of my Grand Rounds as Visiting Professor at the Mayo Clinic last March: We are at the cusp of a profound paradigm change in medicine.

The whole concept of what “patient” can be and do is evolving – but most people don’t know it. Many patients and many docs think patients couldn’t possibly know anything useful; that is no longer the case, and culture clash is happening.

Honestly, this is the work of evangelism – spreading the word, making the case. And you know people are starting to notice when “the empire strikes back,” as illustrated by that coffee mug piece.

Please:

If you don’t yet know about the Belgian health department’s anti-googling campaign (taxpayer-funded!), and you don’t yet know about the British teen who died because her docs told her to stop googling, go read that coffee mug piece. Then read the comments from patients who helped their docs make a correct diagnosis. Then skip over to the Washington Post piece, and read about “the real reality.”

And spread the word! Culture change only succeeds when people spread the word. Thank you!

July 6, 2015 By e-Patient Dave 23 Comments

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

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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September 2, 2014 By e-Patient Dave 1 Comment

Talks in Stockholm, part 2: “Dagens Patient” workshop at Karolinska Institute

This talk, last Wednesday in Stockholm, was for a significantly more academic audience than I usually face: A packed room at Karolinska Institute, the university that is the home of the Nobel Prize. The purpose in this case was to kindle some significantly new thoughts in a super-sharp audience: 20 researchers, 10 patients, 5 students, 5 healthcare professionals, academic think tank leaders, leaders in healthcare professional bodies, 5 health care professionals , 7 health care designers. A lot of people also had more than one role. Wow!

The event was part of an important Karolinska project called “Today’s Patient” (“Dagens patient”). It’s got e-patient written all over it. (This is a continuation of last Thursday’s post of my talks Monday and Tuesday at Digital Health Days in Stockholm. The closing panel video is up now.)

Email subscribers, if you can’t see the video, click here to view it on YouTube.

(How about the nifty video editing by Anders Westin?? I don’t know how he did some of that magic! For fun he also created another “mash-up” of the song Gimme My DaM Data and photos from the day – I’ll add that at bottom.)

At the start you’ll see the introduction by Karolinska’s Pär Hoglund and Sara Riggare. Pär is, among other things, one of Sara’s academic supervisors. Sara is a Parkinsons patient (highly activated e-patient) and member of the Society for Participatory Medicine; she was the ringleader of this invitation, as she also was for my World Parkinson Congress talk, which I blogged about last November.

As I said, the purpose in this case was to kindle some significantly new thoughts in a super-sharp audience of academics and innovators in the Swedish system. Did it work? Well, yesterday I learned that they’ve decided to translate my book Let Patients Help into Swedish. I’d say that’s a win.:-)

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November 28, 2013 By e-Patient Dave Leave a Comment

Engage With Grace: annual Thanksgiving blog rally on responsibility about end of life

Once again this year, Alexandra Drane of Eliza Corp., and friends, have coordinated the Engage With Grace blog rally, in which scores of healthcare bloggers devote their site, for a day or more, to this important topic.

They chose this time of family get-togethers to encourage conversations about our end of life choices. It may seem odd, but what other opportunities do we have to discuss, in quiet moments, this most intimate of subjects?

In case you haven’t seen it, here’s Alex’s talk at TEDMED 2010 in San Diego, with the moving story of her sister-in-law’s death – and how very, very important it was to her daughter (to this day) that her mother’s wishes were honored.

Be sure your wishes are known. Even if you don’t expect your words to matter for a long, long time, say them now.

Here’s “The One Slide” with the five questions Engage With Grace asks us to answer. In fact, you can go to their site and register your wishes.

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November 21, 2012 By e-Patient Dave Leave a Comment

Engage With Grace: annual Thanksgiving blog rally on responsibility about end of life

Be sure your wishes are known. Even if you don’t expect your words to matter for a long, long time, say them now.

Here’s “The One Slide” with the five questions Engage With Grace asks us to answer. In fact, you can go to their site and register your wishes. After the slide is their annual message. This time it’s about Steve Jobs, who met his end since last year’s message.

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Search Results for: photos

Please:

The part Ginny played, as an activated, engaged patient

And, looking forward…