For the month of August I’ll be mostly offline, for a period of “retreat and think.” It’s not a full-bore vacation; I can still be reached for anything time-sensitive (see my Contact page) but I’ll be less active online.
This year has already been full of change – Ginny’s knee replacements, Visiting Professor at Mayo, the first Patient Engagement Fellowship, new publications, and most of all, rethinking what “patient” means (and could mean), per the book that made paradigms famous: The Structure of Scientific Revolutions (right). Our movement is gaining traction, which means a change agent needs to rethink. This month is good for that (I’m only traveling to one event), so I’m going to dial back the dialog.
September will be amazing.
One reason to retreat now is that on August 28 the calendar flips from empty to packed.
Fittingly, the season starts with a trip to the Netherlands to work with Lucien Engelen, the maniac change maker who decided in 2010 that his TEDx conference should be focused on patients (unheard of!), and invited a then-unknown Dave to speak, resulting in the TEDx Talk that changed my life. Consistent with his patient-centered thinking, he’s also the creator of the #PatientsIncluded movement (blog post; emblem at right): he refuses to speak at any conference that doesn’t actively support patients in being there.
I’ll do two events at Radboud University Medical Center Medical School: I’ll be a judge at their REshape Hacking Health 2015 hackathon, then I’ll speak at “Grand Inaugural Rounds” – a three-day head-spinning new way to welcome the medical school’s incoming class, exposing them to all kinds of innovation and changes in health(care) that will hit their professional life when they graduate.
That will be followed by a ten day speaking tour of Alaska (more on that trip soon) and five days at Stanford Medicine X, the most patient-centered conference in the world.
The big question for the rest of 2015:
If the best of medicine
depends on the best information,
and information flows freely now
(as shown at right),
how does that change what’s possible
and what’s necessary?
(See the fine print on that diagram – Lucien is one of its creators.)
For much more about the diagram and its implications, including a one minute animated version, see this February blog post at the time of my BMJ article, “From Patient Centred to People Powered: Autonomy on the Rise.”
The new world is real, but most patients and most professionals don’t know it yet. How do we break through our habitual thinking? That’s where The Structure of Scientific Revolutions comes in.
And that’s something to think about.
How perfect: a month to the day after her June 24 bilateral knee replacement, today the physical therapist gave Ginny the thumbs-up to drive.
This 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.)
Like last month, here’s this month’s update on travels, events, and articles (including a first for me!).
In my travels if you’re in the area and want to connect, contact me.
- Do you use online symptom checkers? Go for it but be wise: Last Friday I was interviewed by the Boston Globe (see below) to comment on a new BMJ article. It was such a stimulating topic I wrote a much-mentioned post about it on e-patients.net, and I hope to be writing more
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My closing slide, stolen from the NHS’s remarkable Helen Bevan. Video of my talk is below.
This post includes the video, below, of an unusual speech for me: it’s not about healthcare, it’s about speaking – particularly, how to compose your message in a way that people hear (genuinely) as a new possibility for the future, not a complaint about today; and so that they come away from your talk with a new view of life.
In healthcare transformation this is really important, for two reasons. First, a lot of people are just sick of hearing over and over about the problems (which certainly are real!). And second, since most of the problems haven’t budged much in the past 20 years, it begs the question: have we been wasting our breath??
And that leads to the question I blogged last year: “What could be said that will make any difference??”
Then two weeks ago I wrote that Rebel Jam 2015 was about to happen – a full 24 hour, round-the-clock round-the-world webcast event sponsored by RelEvents and conducted by three different groups working to create real change from within the system: Change Agents Worldwide, Corporate Rebels, and Rebels At Work. I said my favorite expression of their approach is to figure out how to “rock the boat without falling out.”
I was one of their speakers, and I just got my hands on the video of my talk. Below. Caution; this may require that you give up some of your ideas on how to make a point and how to create change. It’s my approach, for what it’s worth.
Rebel Jam Webcast – e-Patient Dave: “Being Heard as Possibility: How a patient became Mayo’s Visiting Professor” from e-Patient Dave deBronkart on Vimeo.
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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This is an important, free opportunity for all those who want to change the world to learn from people who have experience.
This is the latest in the Speaker Academy series, which started here.
I first encountered the “corporate rebel” movement in Saskatchewan two years ago. It was an unexpected, unscheduled pre-conference by Helen Bevan of the UK’s National Health Service – a dry run of a half day workshop she presented a week later in London. Her thoughts were so fresh, relevant, and potent that I almost fell off my chair. I mean, look what I tweeted, mid-session:
We connected instantly: at the break I approached to introduce myself, and before I got there she threw out her arms and said “Dave!” The following week in London, at the BMJ / IHI Quality Forum, she delivered the full half day workshop to a room of 200 – three hours long – and got a standing ovation. Have you ever seen anyone get a standing O after three hours? (I blogged about it on Forbes, and linked to a Storify of some live tweets during the event.)
Speaker Academy students, note: this movement is about rocking the boat, not sinking it. (Helen says it’s about “rocking the boat without falling out.”) Think about that, seriously. Would you like to develop your ability at that? Would you like to hear from people who are effective at it?
This Friday, June 26: “Rebel Jam”
Rebel Jam is a live 24-hour “jam session” (via Webex) with speakers from around the world, particularly from three organizations: Corporate Rebels United, Rebels at Work, and Change Agents Worldwide. My half-hour session is at 4:30 pm Boston time. Below is the information each of them posted on their websites (e.g. the Corporate Rebels United post). Register, browse the subjects, listen live when you’re awake, and watch the recordings later.
On Friday, June 26 at noon Central European Time, we will kick off our 24 hours of speakers sharing stories, observations and emerging practices about creating change and reshaping the future of work.
We will be using WebEx for this on-line event
Kickoff times for 24-hour online event
- Europe (CEST): noon
- United States (EDT); 6 a.m.
- United States (PDT) 3 a.m.
- Australia (EST): 8 p.m.
Twitter handle: #RebelJam15
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This spring I had a couple of cases where people said “I wish I’d known you were coming – we could have had coffee!” (That’s always compelling to me…) So I’m going to try publishing a monthly update (more or less) of upcoming travels, newly added future events, and maybe a few other things. Short & sweet. Thank you to Casey Quinlan, a focused production machine if I ever saw one, for making this happen!
- June 7-13, Lucerne, Switzerland: IKF’s annual Swiss tour. Multiple keynotes and private meetings.
Upcoming travels & webcasts
- June 16-17, Chicago: NEHI’s National Healthcare Innovation Summit. Attending.
- June 17, London (via web): The King’s Fund, Digital Health Days Congress. Speaker.
- Link to come next week: June 26, 4:30 pm New York time, webcast: 20 minute speech “Being Heard as Possibility,” part of Rebel Jam, hosted by Rebels At Work, Corporate Rebels United and Change Agent Worldwide.
- June 29, London:
- Private corporate event
- BMJ patient panel gathering
Recently added events (stay tuned for details!)
- Early September: Europe (to be announced)
- Mid September: 10 day tour of Alaska! These people are getting it bigtime and spreading the word!
- September 23-24: Medicine-X | Ed Bringing e-patient thinking to the medical education curriculum!
- November 4, DC: American Psychological Association Presidential Innovation Summit
- November 11, Sacramento: Transforming Healthcare Summit
My first-ever article in a clinical practice journal where I’m listed as First Author(!)
- “Open Visit Notes: A Patient’s Perspective and Expanding National Experience,” in ASCO’s Journal of Oncology Practice. It’s open access (free), to allow reading and sharing by patients.
- Full text, or PDF of the print pages; article extract page here.
- Thank you to Beth Israel Deaconess OpenNotes team, and to the journal for making it open access.
Recent media mentions:
Long-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”
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.
This is long but if you’re interested in patient data access I hope you’ll find time to read it. Something important is afoot in federal policy.
Updated 6/4 – added a link to a doctor’s blog post
Over on e-patients.net, the blog of the Society for Participatory Medicine, for weeks there have been blog posts about an important moment that’s happening right now in Federal health policy. The details are complex and geeky (imagine that, with Federal policy) but here’s a tiny tiny nutshell, for readers of this blog:
- In the 2009 federal stimulus bill (not as part of Obamacare), billions of dollars were designated to help doctors and hospitals finally computerize.
- To get the money, they have to not just buy the system and let it collect dust; they have to put it to “meaningful use” – “MU,” as it’s often known.
- Not surprisingly, what you have to do to get the money is a topic of hot debate and much lobbying.
- Remember your civics class? The Legislative Branch writes a bill, and then in the Executive Branch, regulators write the regulations that put the law into action. The regulators get to say specifically what’s legal and what’s not. (See, lobbyists aren’t just on Capitol Hill – they talk to the Executive Branch too.)
- An important part of this discussion for several years has been whether they have to give you and me our data that’s in their systems. Basically: can they use those systems to create your medical record, hoard it (keep it from you), and still get their federal reimbursement??
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In 2013 I was interviewed during the creation of a book called Person-Centered Care, part of a project called Co-Creating Healthcare produced by Danish firm Sustainia and the German firm DNV GL. It’s a remarkable project – a series of three substantial books, all distributed as free downloads on the project’s site. (They also have print editions, but I don’t see any way to buy one!)
In January they completed the third phase of the project, a series of roundtables in Europe, China and the Americas: The State of Healthcare: From Challenges to Opportunities. I participated in the Washington meeting, and they asked me to write a foreword for the final book, which was released last month.
Because the foreword focuses on the “defining a new science of patient engagement” theme I’ve been writing about, I want to re-post it below.
As you can see by browsing the books on the project site, the whole Co-Creating Healthcare project is amazing in its depth (and the beauty of the book spreads), so I’m just thrilled that for the foreword of the final book, they chose this idea. Thank you!
The unfolding science of patient engagement
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