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, 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

I’m 65! That’s *really* old (you’ll be amused) – and I love it.

Birthday candles (source: Wikipedia)

“Birthday candles”. Licensed under CC BY-SA 3.0 via Wikimedia Commons

Updated – see modified population graphic

Some people moan about adding years. I love ‘em. Today I’m 65, and I want lots more! I wanna get old!

We the old and many
are coming for you!

Did you know more than half the humans who’ve ever been 65 are alive today? That’s partly because medicine keeps saving people like me, who tried to die in middle age. Thanks, medicine; now get ready for lots of us getting older, happily, with chronic conditions. (I myself have slightly elevated blood pressure, and I’m just emerging from “obese.”)

Like my classmate Jay Pollack, who posted on Facebook that he’s getting a pacemaker because medicine saved him twice in ten years.

Have you thought about my question last September about taking care of all the old people?  Or how about Pew Research’s new book Next America, which depicts among other things how America’s classic “age pyramid” is becoming rectangular? Each band in the graphic is a five year age group. We used to have very few 80+, and now it’s commonplace: (Graphic modified 10pm ET)

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Health 1.0, 2.0, 3.0: today’s flow of information has changed what’s possible

This 51 second animation accompanies my article last week in the BMJ, “From Patient Centred to People Powered: Autonomy on the Rise.” The video expresses, concisely, a slide that for years I’ve presented in 3-5 minutes. It’s an idea first published back in 2010 by Lucien Engelen, during the same time period when he was preparing for the TEDx Maastricht event in April 2011 where I spoke. It shows how the flow of valuable information has changed, which makes new things possible, as in all other parts of life.

From the BMJ article: Continue reading →

Daily Digest: Short stories, mea culpas, and more

Short story, long impact: A haunting, thought-provoking piece of “what if” fiction on The Health Care Blog drives home the point that healthcare comes from human hands, but not necessarily human hands on a keyboard. “Please Choose One

Privacy for sale: On The Doctor Weighs In, Paul Levy tackles the thorny topic of employer-sponsored health insurance plans offering incentives for “wellness” activities. Are we selling our (privacy) birthrights for what amounts to a mess of pottage? “Selling your right to privacy at $5 a pop

Mea culpa from on high: From the Hospital Leader blog, the President of the Society of Hospital Medicine, hospitalist Dr. Burke Kealey, takes a look at the American Board of Internal Medicine (ABIM)’s recent rethinking of its Maintenance of Certification (MOC) rules. It may sound like inside-baseball, but Kealey’s post is very readable, and shows that large professional organizations – like, say, ABIM – who ignore their members’ input do so at their own peril. “We got it wrong. We are sorry.

Too much of a good thing? If you’ve gone “krazy for kale” you might want to read this, and adjust your intake accordingly. Moderation is a virtue, even when it comes to virtue. From WBUR in Boston: “The Dark Side Of Kale (And How To Eat Around It)

Patients included, lab edition: There’s a new journal in town. Specifically, a journal about and for patient involvement in medical research. It’s called Research Involvement and Engagement – and it’s an open access journal, meaning no pay-wall. Here’s a post announcing its birth on BioMed Central: “Partnership with patients in a new publication

Caterpillar races: In a thread on the SPM email listserv, one of our members shared a link to this article with the subject line “the caterpillar is coming,” meaning that the slow roll that is medical practice change might be shifting. In a 2012 research paper re-published this month in Wiley Online Library, a group of researchers share the findings of a study about how a feeling of powerlessness can kill patient engagement before it arrives. “Patients’ engagement in primary care: powerlessness and compounding jeopardy. A qualitative study

Tongue in cheek: We found a new (to us) site/blog, Life in the Fast Lane, that has a great sense of the absurd in medicine, along with some great content on emergency and critical care. Here’s some satire from their archives: “Reducing the budgetary burden of disease

Daily Digest: Data passports, narrow networks, and more

Data passports: In the absence of health IT interoperability, some systems have started using “patient passports” for complex cases. It’s a start. Maybe next, patient passports for all? Here’s a Wall Street Journal piece that tells the story: “Patient ‘Passports’ Make Sure People With Complex Cases Are Heard

Narrow networks, narrower choices: Affordable insurance plans are no guarantee that you’ll find a provider that takes your plan, and is near your home. As the health insurance industry adds millions of new customers via ACA Marketplace plans, it’s turning out to be a contentious relationship for some folks. The NY Times’ Elisabeth Rosenthal breaks down the issue: “Insured, but Not Covered

Wisdom of children’s books: The always-worth-reading Susannah Fox thinks that healthcare can learn a lot from one of her favorite children’s books. After reading her post, we’re in agreement with her perspective. “What healthcare can learn from Mike Mulligan and his steam shovel

Deep dive into Twitter on measles outbreak: Our SPM friend Mark Harmel has a terrific post up on the Symplur blog looking at the Twitter data surrounding the #measlestruth conversation kicked off by Dr. Bryan Vartabedian and Dr. Wendy Sue Swanson to support the idea of vaccinating kids against measles. “Did #MeaslesTruth Create a New Form of Twitter Communication?

Why Anthem hack is potential horror: A very cautionary piece on NPR about the black market for personal data shows that health IDs, particularly Medicare information, is worth a bundle to the bad guys. The real horror here is the lack of cyber-security sophistication on othe part of healthcare industry IT overlords. “The Black Market for Stolen Health Care Data

John Oliver on “Last Week Tonight” takes on pharma [WARNING: use headphones if you’re at work!]: The weekly HBO news-comedy host takes on pharma marketing in a very funny, but very NSFW (Not Safe For Work), examination of the marketing juggernaut that is the pharmaceutical industry.  “Marketing to Doctors


Daily Digest: Geography=health, right-care, and more

Geography is health: Geo-mapping expert Bill Davenhall said that in a TEDMED talk. An interesting neighborhood development in Austin has built in open spaces in a new-urbanism model to foster community health and social interaction. NPR has the story: “Urban Utopia

Worm in that Austin geo-health apple? The new-urbanism that Austin was aiming at in the above story had a flip-side that revealed underlying racial tensions. Recognizing that, and talking about it, has been eye-opening. Social determinants are a big part of public health. Part 2 of the NPR series on the Mueller neighborhood in Austin: “Utopia Tackles Racial Tensions Under the Surface

UnitedHealth’s $43 billion bet: “Fee for service” is often blamed for the high cost of US healthcare. Health insurer UnitedHealth has taken a big step away from fee for service, and toward value-based payment to medical providers. From the Wall Street Journal: “UnitedHealth’s $43 Billion Exit from Fee for Service Medicine

We need to talk: A study in JAMA Oncology concludes that doctors’ views that patients ask for more testing and other care than they need is true in only 1% of cases in cancer care. This piece by Sarah Kliff in Vox breaks down the study’s findings. Seems like doctors and patients have yet more reasons to talk clearly and plainly with each other. “Doctors think lots of patients ask for medicine they don’t need. This study says that’s not true.

Anthem data hack: A piece in FierceHealthIT says that the FBI is on the case in tracking down the folks behind the Anthem hack, which compromised the personal data of 80 million Anthem customers. There are some hints that it might have been a Chinese hacker group, but no solid leads yet. “Details emerge in Anthem hack

Friday’s laugh track: From Gomerblog, a visual discourse. “Medical Specialties as Game of Thrones Characters