e-Patient Dave

Power to the Patient!

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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!

 

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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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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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Dr. Molly Coye joins NEHI!

Dr. Molly Coye headshotLong-time readers know that my work is going through something of a transition, with one foot in the “grass roots / we ain’t got nothin” world and the other foot in the “BMJ author / Mayo Visiting Professor / NEHI patient engagement fellowship” world. Long-time readers also know I’m nothing if not candid, so while it’s thrilling to be moving into more dignified circles, there’s still a part of me that reacts to news like this by just saying:

OMG: Molly Coye is joining NEHI!

Molly Joel Coye, MD MPH (@MJCoye) has left UCLA’s Global Lab for Innovation in Health and has become NEHI’s new Social Entrepreneur in Residence. Why am I excited? Who is Molly Coye? Well:

  • An elected member of the Institute of Medicine, which I often quote, she was a co-author of their most-cited reports on medical safety & quality, To Err is Human and Crossing the Quality Chasm. (This makes her a goddess, on my planet.)
  • From NEHI’s announcement: “Dr. Coye has also served as Commissioner of Health for the State of New Jersey, Director of the California State Department of Health Services, and Head of the Division of Public Health Practice at the Johns Hopkins School of Hygiene and Public Health” [and much more]. (And on top of her medical work, she has “an MA in Chinese History from Stanford University, and is the author of two books on China.”)
  • From UCLA’s announcement: “Under Dr. Coye’s leadership, the Institute for Innovation and the Global Lab have been tremendously successful and productive. Among the many important projects overseen by Dr. Coye and her team are included the Doximity Colleague Connect pilot, the Zipnosis online diagnosis and treatment service, the Vivify Health Remote Home Monitoring Platform, the Virtual Visits pilot project, the Patient Voice user experience-based design approach to value-based care, and the launch of Real Time Referrals and eConsult.”
  • From the iHealthTran blog in 2013: “She received the Information Technology Innovator Award from HealthCare Informatics and was named one of the 25 Most Influential Women in Healthcare by Modern Healthcare Magazine. Elected to the National Academy of Sciences’ Institute of Medicine in 1994, Dr. Coye co-authored two landmark reports on healthcare quality, To Err Is Human and Crossing the Quality Chasm. She also chaired the IOM’s Committee on Access to Insurance for Children, and co-chaired the Committee on Patient Safety Data Standards.”
  • Finally, I asked the members of our Society for Participatory Medicine (patients and clinicians) if any of them have first-hand experience with her, and within a few hours got these responses:
    • “She is on my ‘good-guys’ list”
    • “I’ve worked with her … She is thoughtful, well organized, and pleasant to work with.”
    • “Sincere and an extraordinarily diplomatic ambassador.”
    • “delightful to work with and an amazingly competent person”

Well.

I like innovation, optimism, brains, insight, and practical experience. And as I blogged about NEHI when I first got this fellowship, NEHI is action-oriented – not just a “think” tank, a “think-and-do” tank. They’re about “evidence, action, and policy impact.” Thanks too to the Commonwealth Fund – as the NEHI release says, “Dr. Coye’s work will be supported in part by a grant from The Commonwealth Fund.”

So this will be fun. And productive, I’m sure. Life is good.

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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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