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.
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Click to go to the original blog post and DONATE! Honor our pioneers and be one yourself! Stand for what you stand for.
Remember my post the other day about Marilla Ricker, the New Hampshire woman who in 1910 tried to become governor? (Click the image or click here to go there.) The first well known suffragist in the state? We’re raising funds to have her portrait painted and hung in the State House, to honor this pioneer of new thinking.
On a related note, in the US today is Women’s Equality Day – proclaimed each year since 1972 by the President to commemorate the anniversary of the 19th Amendment. Here’s the Joint Resolution of Congress creating the day: (emphasis added)
- WHEREAS, the women of the United States have been treated as second-class citizens and have not been entitled the full rights and privileges, public or private, legal or institutional, which are available to male citizens of the United States; and
- WHEREAS, the women of the United States have united to assure that these rights and privileges are available to all citizens equally regardless of sex;
- WHEREAS, the women of the United States have designated August 26, the anniversary date of the passage of the Nineteenth Amendment, as symbol of the continued fight for equal rights: and
- WHEREAS, the women of United States are to be commended and supported in their organizations and activities,
- NOW, THEREFORE, BE IT RESOLVED, the Senate and House of Representatives of the United States of America in Congress assembled, that August 26 of each year is designated as “Women’s Equality Day,” and the President is authorized and requested to issue a proclamation annually in commemoration of that day in 1920, on which the women of America were first given the right to vote, and that day in 1970, on which a nationwide demonstration for women’s rights took place.
We all know this social change is not complete, so let’s keep at it. Remember the work suffragists were doing 100 years ago and long before that. And please click and donate a few to remember Ms. Ricker.
Study up at the National Women’s History Project, too.
I’m making a career out of changing the culture of healthcare and I want your help on another cause: honoring a pioneer of women’s rights in my state, New Hampshire.
A couple of weeks ago on New Hampshire Public Radio I heard this segment (text and five minute audio), about Marilla Ricker, who said this – in 1910:
“I’m running for Governor in order to get people in the habit of thinking of women as Governors…
People have to think about a thing for several centuries before they can get acclimated to the idea. I want to start the ball a’rolling.”
Not unlike our efforts to have healthcare think of patients as valid contributors in participatory medicine, right? It seems to take forever! But Ricker couldn’t be governor; heck, she couldn’t even vote.
My state’s League of Women Voters and Women’s Bar Association have legislative approval to have a portrait of Ricker painted and hung in the State House – but New Hampshire being New Hampshire, permission is just permission, and they have to raise the $10,000 themselves. They’re more than halfway there – less than $5,000 to go.
HEY GUYS: Why is it that only two women’s groups are honoring this pioneer of fixing a massive cultural mistake??
Here’s what I want you to do. (“You” = any gender.)
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Brenda kayaking for the first time
Brenda hamming it up with her grandson
Next in a series of very informal e-patient request blog posts, which feed the equally informal patient communities page. If you haven’t browsed the series you might find it interesting to see the kind of information people exchange for some conditions … and for others, we got nothing. Welcome to the internet!
This request is from e-patient Brenda Denzler, shown here in (characteristically) two comic settings. She’s seeking help for an issue that’s been with her for her whole life.
The doctor she mentions is Ryan Madanick @RyanMadanickMD, whom I’ve met on the conference circuit (particularly at Mayo social media) and online!
She sent this email. (In a comment I brought up EMDR as a trauma treatment, but I don’t know a lot, and besides, I’d like to hear more about other child medical traumas.)
My gastroenterologist was impressed with my preparation as a patient of his and referred me to your site. I’m not sure what it means to be your “current or potential client” – but am taking a chance by contacting you this way, anyway. [I don’t take “clients.”]
In late 1958 and early 1959, I had two medical situations arise. I was 5 years old. Continue reading →
Click to visit “#HIT99″ results post on EMR & HIPAA blog
Some email subscribers got an unfinished draft earlier today. Sorry for any inconvenience!
Continuing this monthly series: here’s this month’s update on travels, events, and writings.
Social Media Recognition: ranked #17 on the “#HIT99″ Health IT social media influencers list
- August 13-14 D.C.: RWJF National Leader Summit on Integration of Behavioral Health & Primary Care. Participant.
- August 30-Sept. 02, Nijmegen, Netherlands (Radboud University Medical Center):
- September 10, Lancaster PA: Hospital & Healthsystem Association of Pennsylvania, 2015 Patient Safety & Quality Symposium. Speaker.
- September 11-19: speaking tour of Alaska! Multiple events in Anchorage and Soldotna
- September 23-27, Palo Alto: Medicine X | Ed. Speaker at Medicine X | Ed; attending the whole conference.
New confirmed travel plans:
- October 29-30, Boston: Connected Health Symposium. Attending as SPM partner.
- March 14, San Antonio: 2016 Parenteral Drug Association Annual Meeting. Keynote.
- British Journal of Healthcare Computing (HIMSS Europe) Vox Pop posted a conversation with input from me, and from Rosamund Snow, Patient Editor at the BMJ, about the value that patients bring healthcare, and the ongoing efforts to build a sustainable framework for patient engagement.
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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