“When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas

Dana Lewis on stage at O'Reilly

Click image to watch video on the O’Reilly site

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.

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“The Patient’s Perspective – medicine’s new true north” – essay in PLAID diabetes journal

PLAID Journal coverFor 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”:

A1c screen capture

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 get diabetes if you can avoid it.)

(Footnote: 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 that’s a subject for another day.)

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What questions should researchers ask about “the weekend effect” in hospitals?

Death rate for stroke patients (red line) is worse as nurse coverage shrinks

Death rate for stroke patients (red line) is worse as nurse coverage shrinks. From wikipedia.org/wiki/Weekend_effect May 16, 2016

Update: I’ve changed the headline, because people kept answering the wrong question.:-) The right question is here:

Attention patient voices around the world: what questions should researchers look at to see if there is a difference between weekend and weekday services in hospitals?

In the UK a major debate is underway about the weekend effect in hospital services: are they less safe, how are they different, etc?  The image at right, from Wikipedia, is one example: the red line shows that death rate for stroke patients improves dramatically when nurse coverage is not close to zero.

I’m on the BMJ editors’ patient panel, and Rosamund Snow, the BMJ’s patient editor, points out that from the patient’s perspective there’s a lot more to look at than death rate.

That’s a pretty crude measure of whether a hospital’s performance is affected, eh? “What are you complaining about? She didn’t die, did she?” What about things like falls, medication errors, access to needed surgery, and on and on and on.

So Rosamund has decided to seek patient thoughts on the subject, hallelujah.

Of course UK experience is important but what are your experiences in any country? Mostly we’re seeking patient experience, but physician experience in other countries could be useful, especially if a system made a change that created a clear difference, better or worse. Both data and anecdotes are welcome.

Most important, though: What questions should researchers look at to see if there is a difference between weekend and weekday services?

“I’m gonna live live live until I die”: new speech about palliative care at #cccc16

e-Patient Dave CCCC title slideI spoke Thursday to a completely new kind of audience: the Coalition for Compassionate Care of California, which is involved in palliative care.

Palliative care is not a synonym for hospice or end of life. It’s about making life with a disease more comfortable, which can be combined with curative care – it does not mean you’ve abandoned hope of a cure. But many doctors, nurses and insurance companies don’t know this yet. Be informed, and speak up! 

Although it was a new topic, the talk was a tremendous success. Here’s the video, which was captured (at no cost!) by @KSAust (Kris Austin) on Twitter using Periscope. (Email subscribers, if you can’t see the video, click the headline to come online.)

It’s about changing our cultural conversation

I compose every talk for the individual audience. There’s often a lot of overlap with previous talks, but this one was very different: I’ve never talked about this subject. It ended with an enthusiastic standing ovation, which always means the message got through.

Thanks to my barbershop singing hobby, especially my chorus, the Nashua Granite Statesmen, from whom I first heard this arrangement of the song that was the title of this talk: “I’m gonna live until I die.” At the start I pointed out that Frank Sinatra introduced this song the year I was born (1950), and at the end I said that we pass our culture down to the next generation: the talk ended with a performance of the song by one of the Harmony Explosion summer choruses, where we barbershoppers pass the tradition along to the next generation.

Seriously, spread the word, because hardly anyone knows: Palliative treatment can be combined with curative ones. It’s not a synonym for hospice, and does not mean giving up hope – it means making it easier to cope with the effects of a disease or its treatment.

Vice President Biden’s potent speech about the importance of data in cancer

I’m at the 7th annual Health Datapalooza event in Washington. What I have to say here about this conference is subjective, my gut feel, because I haven’t been at most of the previous ones, because they were largely about the business side of health data – there hasn’t been nearly enough focus on the people who actually have the problem: the patient and family.

This year’s different. It’s managed by a different organization (Academy Health), and a lot of strong patient voices are involved, on stage and behind the scenes. There’s a whole Consumer Track, in addition to all the business things going on. And yesterday we saw a speech by somebody who most definitely fits the category “the people who have the problem.”

Vice President Joe Biden’s son Beau died a year ago this month of glioblastoma, a nasty nasty brain cancer. For his talk I left the main room and went to a side viewing room so I could record it on my iPad.

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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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e-Patient request – time sensitive: reactions to Taxol, Abraxane, Carboplatin

This uterine cancer e-patient had a very bad reaction to a new chemo regimen yesterday and has lost confidence, and wants to learn more before proceeding. What advice do you have on these treatments? Are there good online e-patient communities?

The emails I received:

I went to the Infusion Room and a young RN starting infusing me with preparatory drugs such as Benadryl and steroids before the Taxol and later Carboplatin.

The moment the Taxol starting flowing into my system I had a series of “Oh no!” reactions that indicated a severe hypersensitivity to the drug. A crowd of nurses came on the scene.

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A mistake, and an apology to Medicine X

Medicine X 2016 promo graphic

In life, in relationships, and in social movements, sometimes things get messy. Despite all the things I’m committed to, I made a mistake last fall while extremely over-tired, and behaved offensively to someone I didn’t even know, a volunteer at the wonderful Stanford Medicine X conference (MedX), about which I’ve written so favorably here and on e-patients.net and even in the BMJ. They’ve decided to ask me to sit it out for a year (i.e. not attend), and I accept it – it’s reasonable. I apologize to MedX and I apologize to the volunteer.

I believe in introspection – “the examined life,” as they say – and continuous self-improvement. So later I’ll say a bit more about what I’ve learned while thinking about this. (Update: that post is here.)


Graphic Recorder's depiction of Lucien Engelen's keynote at the Joule Innovation Forum

Here it is, all in one picture: the future of healthcare. At least a lot of it.

These are the topics Lucien Engelen has been talking about, the concepts he’s been developing, since arriving at Radboud University Medical Center (RUMC) in Nijmegen, The Netherlands. You MUST pay attention to what he’s thinking about, because it’s coming, and most people don’t know it yet. So study that picture.

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Excellent podcast: “Better Health While Aging”

Leslie Kernisan Podcast CoverI have a confession: as e-geeky as I may be, I missed the boat when podcasts got popular, and I never got into them. At last, here’s one that’s worth solving that: Better Health While Aging by Dr. Leslie Kernisan.

I wish I could explain things as clearly as she explains geriatrics – which, as she says in every episode, is “the art and science of adapting healthcare so that it works better for older adults.” (Isn’t that the clearest definition you’ve heard for that word?)

I’ve become addicted – her voice is so clear and friendly; she words things (especially touchy issues) in such a way that you can get the message and hear what you need to hear, without getting clobbered with medicalese or stuff you’d rather not think about.

I’m not giving anyone elder care right now (nor receiving it), but having turned 65 last year I have an interest in my future, and I’ve seen lots of friends and relatives experience elder issues. You know what my thought is about aging? If medicine keeps you from dying, you’re gonna get old! And no better time to learn about it and think about it than right now.

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