Power to the Patient!
This is an exercise in “peer to peer health advice.” I’m asking for advice, from “the DOC” (diabetes online community) – more on that below.
Here’s a message I received from someone who’s really peeved about a technology for managing his Type 2 diabetes. Does your experience match his? Should his digital device match the results from finger sticks? If not, for heaven’s sake why?
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I haven’t had occasion to talk much about it yet, but in November 2014 Dr. Danny Sands said routine blood work showed my hemoglobin A1C was slightly elevated. That’s what they call “pre-diabetic,” so woohoo, I get the privilege(?!) of pivoting from the cancer world to learn about diabetes in its many forms.
Man, it’s complicated – I did everything right, lost 40 pounds, became a runner, and my A1C went up! That’s how it goes sometimes, according to my friends in “the DOC” – the “diabetes online community.” Managing diabetes is complex – lots of work to do every single day. That’s one reason I’ve always said a healthy PWD (person with diabetes) is the archetypical e-patient (engaged patient).
I’m at a diabetes conference (more on that below), and last night I saw what may be the most perceptive, smart, patient-centered presentation I’ve ever seen. Ever seen. Anywhere.
I’m new to this field, so maybe this kind of thinking is commonplace here, but not from what I’ve seen. Lots to say about it, but for today here’s a starter post.
If you can’t see the video above, click to watch it on Vimeo.
One of my favorite sayings about digital health is “When assets digitize, things change fast.” The point is that once information (or anything else, even fonts) goes digital it can suddenly be hundreds of times faster to develop new things. In health and care, a special kind of liberation becomes possible: if the person who has the problem can suddenly invent things, what becomes possible?
I’m at my first-ever diabetes convention, the American Diabetes Association’s 76th annual Scientific Sessions. I’ve written before about @DanaMLewis and husband @ScottLeibrand of OpenAPS.org, the open-source Open Artificial Pancreas System project. (Most recent was this on this site “When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas and this amazing speech last month on e-patients.net.)
Did you know it’s not unusual for a basically health person with diabetes to die in their sleep? I never heard that until I got to know people in the DOC (diabetes online community). (Amazing what happens when you talk to the person who has the problem, eh?) That’s why I want awareness of what diabetes is, and awareness of this amazing project, to spread way beyond the usual diabetes community.
So early in this interview I ask Dana to briefly explain what the pancreas does, why it does it, and what goes wrong if it doesn’t work, which (I assure you) will lead you to understand why people with this disease might say “WeAreNotWaiting.” (If you don’t know that phrase, google it.)
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.)