Power to the Patient!
Through Monday, January 11 I’ll be on reduced availability, for a period of “retreat and think.” It’s not a full-bore vacation; I’ll be reading and writing (and blogging), but I won’t be responding to most emails.
I can still be reached for anything time-sensitive and I will still monitor contacts from media and potential clients, per the Contact page.
Here’s a list of my favorites on this site from 2015. I’ll repeat something I said in August:
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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:
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:
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.
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!
Regular readers know that a large part of my becoming a global advocate has been the vision and influence of Lucien Engelen at Radboud University Medical Center (RUMC) in the town of Nijmegen, on The Netherlands’ eastern border. Way back in 2010 he announced that his upcoming TEDx would be primarily about patients; the TED Talk I did there put my speaking career into a catapult; then he put his own money where his mouth is by launching the 
#PatientsIncluded initiative, saying he would not attend any event where patients weren’t actively encouraged to participate; and he has continued to lead in thoughts and actions, every year since (including 3D-printing my lung metastases last year, below). Lucien is the standard, the exemplar of the “pay me with action” clause of my price policy.
For that reason, when he asked me this summer to participate in something even newer – something brand new – I immediately said yes. What was it? A three day event, “Inaugural Grand Rounds,” launching a completely redesigned curriculum at RUMC – redesigned with patients participating in the process. Yes, patients – people with no medical experience – except as “the ultimate stakeholders”; as patients, helping guide how we teach students.
The medical costs and price shopping story I wrote about last Tuesday appeared today in USA Today: Health care costs are a medical mystery. (Nice play on words – usually “medical mystery” is about diagnosing a disease, and this dysfunction sure could use some sleuthing!)
I’d love to see this coverage taken to the next level. The text and the bar chart talk about the crazy variation from city to city – an angioplasty costs four times as much in Sacramento as in Birmingham – but I know lots of people who just shrug and think “Well, Sacramento must be more expensive.” The thing that really gets savvy consumers going is when the same thing costs wildly more in the same city.
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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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.
Next in the series: #26: To hone your skills, eight great TED Talks