Let us start by reviewing our anthem: “Gimme My DaM Data – it’s all about me so it’s mine,” by the magnificent Ross Martin MD and his wife Kym, multi-cancer patient whose care has been affected by lack of access to her health data. “DaM” is Data About Me, Kym’s more-polite version of my cussing. Read on for why this is newly urgent.
#OpenNotes mashup! 20th birthday of Seinfeld’s “Elaine’s a difficult patient” :)
“It was twenty years ago today / Sgt Pepper taught the band to play” … well, today’s the 20th birthday of Seinfeld episode #139, October 17, 1996. This was the famous segment where Elaine looked in her chart and found she’d been marked “Difficult.” What followed was hysterical, as she got lied to and ultimately recruited Kramer to impersonate a doctor (“Doctor Van Nostrum”) to get her records.
You see, when this episode aired, Elaine did not have the right to see her chart. The HIPAA law had been passed in August 1996 by the legislative branch, but the regulations giving her access rights had not been created yet by the executive branch.
Well, things have changed, and change can be good … and in a delicious twist, the OpenNotes people got me to impersonate Kramer impersonating a doctor, in a new video mashup. Enjoy.
Here’s a hashtag: #ElaineDifficult20.
Patient and family engagement event August 8 in Concord NH
On Monday, August 8, my state’s Foundation for Healthy Communities (HealthyNH.com) is hosting an event where I’ll be speaking, titled “Improving Care at the Bedside through Effective Patient and Family Engagement.” It’s mostly intended for New Hampshire people, but organizer Tanya Lord says “I don’t think we would turn anyone away.”:-)
So come on down! Or up, or over, or whatever. Here’s a very short video introduction. (Email subscribers, if you can’t see the video, click the headline to come online.)
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“When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas
For some reason I’ve spoken about this a lot in speeches for more than a year but I haven’t blogged about it. The time has come.
One of my sayings in Let Patients Help is a lesson we learned in graphic arts, and the music industry learned too: “When assets digitize, things change fast.” This is, truly, an extraordinary example.
Some people with diabetes pretty much do as their doctors tell them and the industry tells them – they wait and hope that things will get better. That’s fine with me – I never say that people should be more like me. But when someone wants to take a more active role, I believe society (including medicine) should not stand in the way: let patients help improve healthcare.
“The Patient’s Perspective – medicine’s new true north” – essay in PLAID diabetes journal
For the past year I’ve mentioned this in speeches, but I’ve never written about it here:
In November 2014, a routine blood test revealed that my hemoglobin A1C was slightly elevated, making me what they call “pre-diabetic.” (See lab results below.)
Well, that got my attention.
Why? Because, through social media, I know a lot of really smart, articulate, passionate members of “the DOC” – the diabetes online
community – and I’ve learned all kinds of things about the reality of diabetes that you don’t see in the TV commercials.
I’ve learned that it’s not rare for a basically “healthy” person with diabetes (PWD) to die in their sleep when their blood sugar crashes; I’ve learned about unfixable nerve pain and amputations; I’ve learned about all kinds of things that can go wrong when diabetes gets out of control. I don’t even know enough to make a properly prioritized list, but I know enough to say you do not want to have diabetes if you can avoid it.
(Footnote: it drives many of us nuts when a TV commercial or news story talks about “diabetes” as if it were one thing. It’s not. Type 1 diabetes (T1D) is medically different from type 2 diabetes (T2D), which I am at risk for; it typically arises in middle age, but has been seen as young as age 3. “Diabetes prevention” is an ignorant thing to say: Type 1 can’t be prevented, Type 2 sometimes can. But that’s a rant for another day.)
An examined life in an unfolding movement
Yesterday I wrote about a mistake I made last year at Medicine X, behaving unfairly to a volunteer while over-tired. At the end I said “I believe in introspection – ‘the examined life,’ as they say – and continuous self-improvement,” and that I’d be saying more about what I’ve learned.
In potentially troubling times, what makes a difference is what you’re committed to, because that’s where your compass points even when things get bumpy. My goal in this essay is to close out the episode having learned something. Here’s what I see.
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