A call to action and two new media items

NoMUwithoutME badgeThese are busy times! I haven’t posted anything in over weeks so I’m going to handle three items in one.

1. Call to action: “No MU without Me”

Two weeks ago, two important things came up in the Washington health IT policy world. On the e-patients blog I wrote two posts about them, which I encourage you to look at.

Post 1: “No MU without ME”: join the campaign to fight health data hiding

This is an important post, getting lots of attention. Two important DC policy items in this post –

  • A proposed rule change to roll back current requirements for hospitals to help you to get your data.
  • Meanwhile, ONC (the federal office that for health IT policy) sent a report to Congress saying that some system vendors and some healthcare providers are “knowingly interfering” with the transfer of patient record data. Knowingly interfering!

The result is that a national day of action has been proposed, because a primary complaint from hospitals is “Look, nobody even asks for their information. Why should we have to automate delivering it??”  (Read the post for more precise specifics.) Stay tuned. Meanwhile, a social media campaign has started: “No MU Without Me” – it’s explained in the post.

Post 2: NY Times editorial on forces who “knowingly interfere” with health info exchange

On Sunday the Times ran an editorial on the subject, spotlighting that the ONC report had noted “business interests” as the cause of the data obstruction. In my post I said, pretty pointedly:

Restricting flow of patient information is not a valid playground for private business interests.

If you have a story about how healthcare was helped or harmed by access to your (or your family’s) records, let me know so we can add it to the story database we’ll be collecting.
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First post from Mayo: “Radical Acceptance” on Healing Words, and singers Kim & Reggie

Healing Words studio shot 2015-03-25Last week, Monday night through Wednesday, was my long-awaited visit to the Mayo Clinic, invited by their Chief Residents in Internal Medicine: Dr. Chris Aakre, Dr. Luke Seaburg, Dr. Luke Hafdahl, and Dr. Kimberly Carter. It was a wholly different event than most, because although it included some speaking, the whole feeling of the event was for us to learn from each other over the course of those ~48 hours.

In the next day or two I’ll post the video of my Grand Rounds lecture, which was on the “new science of patient engagement” idea I recently proposed here. But first I want to talk about two connections with the Center for Humanities in Medicine. (Does your hospital have one of those? Mayo’s is on Twitter at @HumanitiesInMedicine and on Facebook.)

Facing Death

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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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Daily Digest: Open data, lone rangers, and more

Open data, sort of: In a post on the Health Affairs blog, some big brains from Brookings talk about how open data can help end over-treatment and high-cost treatment when science doesn’t support either one. In my opinion (which I shared in a comment on the post) they left somebody out in the data-share: patients. “How Open Data Can Reveal and Correct the Faults in Our Health System

That which does not kill you … might still kill you: Dr. Aaron Carroll takes up the question of what are called the social determinants of health on his Healthcare Triage YouTube channel. Here’s a link to a post on The Incidental Economist with that video, and some other perspective on the topic. “How Long Are You Going to Live?

Overwhelmed by over-treatment: One of our friends, Shannon Brownlee, is a globally known thought leader on ending medical overtreatment and shared decision making. From her view on the leadership team of the Lown Institute, she’s seen all the science on why overtreatment is still a pernicious issue in US healthcare. Her op-ed on the subject from DrKevinMD: “Fixing overtreatment: Lone rangers need not apply

“Let Patients Help” – hospital board edition: In a piece on the NY Times Upshot blog, Austin Frakt says that hospital boards need to have more clinical expertise on them, so that treatment guidelines in the facility don’t wander off the evidence-based/quality-outcome reservation. We think he left out an important consideration: *patients* on hospital boards. “In Hospitals, Board Rooms Are as Important as Operating Rooms

It’s not your funny bone, it’s your funny brain: It turns out that the old bromide about laughter being the best medicine might actually be true, at least in preventing age-related cognitive impairment. From Medical News Today:  “Laughter may be the best medicine for age-related memory loss

Daily Digest: The West Wing, lab coats, and more

West Wing replay: Surgeon General Vivek Murthy said something recently that had Aaron Carroll reflect on the West Wing over on The Incidental Economist blog. “When real life imitates ‘The West Wing,’ Surgeon General edition

Less is more, health IT edition: On the HL7 Standards blog, Michelle Ronan Noteboom looks at the idea that too much is way too much when it comes to several things, including portals and medical treatment. “When Less Is More in Health IT

You can get it at Lowe’s: Not hardware, although they do certainly have plenty of that. In this piece on the Health Affairs blog, Bob Ihrie and Alan Spiro take a look at how Lowe’s retooled their employee health insurance coverage with an eye on behavioral economics, trust, and relationship dynamics. “Engaging Health Care Consumers: the Lowe’s Experience

Tattoo you: I (Casey) have been making the health IT event rounds lately as a patient voice on panels about health tech and patient engagement. Since I took a very out-there step related to my own health data, my appearance in the room can start some interesting conversations. An example, by Jim Tate in the HITECH Answers blog: “Patient Engagement: I Tattoo, Therefore I Am

Lab coats – yes or no? A meta-analysis of the study data available on patient satisfaction scores and physician attire shows that patients are likely to rate a doctor who’s dressed professionally higher than one who isn’t. What’s your thinking there – would you prefer a tie (which can be an infection vector), or are scrubs OK with you? From Lena Weiner in HealthLeaders Media: “Physicians’ Attire Linked to Patient Satisfaction Rates

From the This Will Never Get Old desk: A film director and his wife took to YouTube back in 2010 to illustrate the user experience when you’re a patient booking healthcare, setting that illustration in the context of air travel booking. The results were, and are, hilarious. The New Altons on YouTube: “If air travel worked like healthcare

Kool & the Gang’s “Celebrate” on Jib-Jab – for my birthday

JibJab birthday screen captureOn JibJab.com, from my sister, the jazz singer Suede, to augment my 65th birthday post this morning: One of my all-time favorite party songs, “Celebrate,” customized with faces of my family peeps. From left to right below: (Email subscribers, click here)

  • My granddaughter, y’all!! Zoe
  • Some guy who just turned 65 TODAY.
  • My daughter Lindsey
  • My wife Ginny (bustin’ moves like she used to do, before her bone problems)
  • Lindsey’s husband Jon

Daily Digest: Sugar high, CEO hackathons, and more

3% is not enough: According to this piece from Modern Healthcare, the security threat revealed by the Anthem breach might not be enough to increase spending on cybersecurity, for healthcare or for anyone else. “Experts doubt Anthem breach will boost security spending

Sugar high: Dr. Abigail James, a neuroscientist and educator who’s known globally for her thinking on the science of learning, points out the results of a Yale study on energy drinks and school children, and shares some tips for parents on weaning their kids off the sugar/caffeine rush. “Sugar high: It’s REAL

Marble doesn’t matter? I (Casey) have an admitted admiration for hospitalist MDs, based on my work producing a podcast series for The Hospitalist magazine. This post, from the Society of Hospital Medicine’s Hospital Leader blog, is Dr. Bradley Flansbaum’s take on the results of a Johns Hopkins study on hospital fittings – think Ritz Carlton vs. Quality Inn – and their impact on patient satisfaction scoring on physicians. “If your hospital was the Ritz Carlton, how high would your patients rate you?

Irish science breakthrough: It’s early days in this study, but preliminary reports show some hope for Alzheimer’s and MS patients from a drug under study in Dublin. It’s called MCC950. We’ll be watching this one. From the Irish Times: “Ireland leads a drug breakthrough in fight against MS, Alzheimer’s

Data geek hacky sack: Our longtime friend Brian Ahier is a health IT geek extraordinaire. Here’s a profile of his upcoming booth-babe appearance at HIMSS15, which includes his belief that health IT is an evergreen bipartisan issue. And a call to develop a wearable that counts hacky sack kicks. From Healthcare IT News: “Brian Ahier: HIE-vangelist, hacky sack extraordinaire

Healthcare hackathon for CEOs: This showed up in my Facebook news feed today, and I was fascinated. In Denver, a dedicated man named Tom Higley – a real Renaissance man: attorney, musician, tech entrepreneur – has a very interesting event underway this week, where 10 CEOs will listen to 10 “wicked” healthcare ideas, and then incubate a solution to one of them in 10 days. From the Denver Post: “Sold-out production gives 10 CEOs 10 days to build viable health startup