e-Patient Dave

Power to the Patient!

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The business of patient engagement: an office in a box

A year ago I posted about the business of patient engagement – some reflections on what it’s like to be creating some kind of business that has no precedent. Yeah, that’s innovation – not new technology, but definitely innovating a business model. It’s had to be agile: set out in a general direction, and follow the opportunities. Somebody told me “Evangelism always requires taking it to the field,” and boy were they right: the Past Events section of my schedule shows over 150 events since 1/1/2010.

That’s a lot of travel, a lot of unproductive time to/from/in airports, and a lot of time checking into and out of hotels. Tons of opportunity for things to get misplaced, and tons of opportunity for expected services not to be there when I arrive. All that means more unproductive time, not to mention replacement costs. That stuff can kill a startup.

I’ve addressed this, with the help of my gadget-happy clever wife, by developing an “office in a box” briefcase, with a place for everything and everything in its place. Check it out.

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Special event: TED Conversation on “Let Patients Help”

I’m having so much fun with this TED video (see earlier post) that I hardly know what to say. The best thing is that the simple message “Let Patients Help!” is spreading around the world – it’s got over 180,000 views so far, and volunteers have added subtitles in nine languages – most recently Persian (Farsi) and Korean. People are passing it from friend to friend to friend – clearly, this has tapped into a universal desire: let patients help heal healthcare.

Yesterday the TED people even gave it a vanity URL: http://on.TED.com/Dave. How fun is that??

The next big thing is a live “TED conversation” Wednesday at 1:00 p.m. EDT (10 a.m. Pacific, 7:00 p.m. in Central Europe, etc). The topic ties into one of the key statements in the video: “Patients are the most under-utilized resource” in healthcare. The question:

Why is the patient
the most under-used resource in healthcare??
How did that happen??

To participate, some preparation is required; instructions below:

About the event

  • TED Conversations are online discussions about TED-worthy topics. Many are started by members of the TED community; you can start one yourself. Here’s the Conversations page.
  • Some Conversations are live one-hour discussions about a question that’s been proposed by a TED speaker. That’s what this one will be.
  • The question is posted a day in advance, at 3 pm ET. Comments will not be open until the event starts.
  • You’ll be in a group discussion room, typing with other people. People post questions, and I’ll see them and answer as much as I can. (A moderator will be watching for spammers and trolls.)

Preparation

  • Create a TED.com account. Do this now, before the event: http://www.ted.com/pages/114
  • Start thinking now about what you’ll want to say during the event.
  • Tell friends, if you want.

The event itself

__________

Where did this speech come from, anyway?? Who started this?

It happened at TEDx Maastricht, a distinctive, terrific event last April 4, in the south Netherlands city of Maastricht. (Here’s a Blogger Grand Rounds post with many videos from the event.) Perhaps most significant, the first speaker announced for that event wasn’t a big name celebrity, it was a patient. Just a patient. And that’s what the event was about: putting the patient at the center of the whole health conversation.

Next year’s event is already scheduled – April 2, 2012. I’ll be in the audience if at all possible, because there were some sharp talks, and event production was excellent.

TEDx Maastricht is produced by Lucien Engelen, “health 2.0 ambassador, speaker, author and Director of the Radboud REshape & Innovation Centre at UMC St Radboud in Nijmegen.” Reshape? Yes – as in, taking healthcare apart and putting it back together, better.

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A Visit to the Emergency Department

Click to go to Hospital CompareLast night my wife and I had occasion to be consumers in the healthcare system: a visit to the E.R. (nowadays called the E.D.) for a flare-up of her foot problem. We used digital resources in two ways: digital x-rays, and hospital quality data provided by the government – your tax dollars at work, to enable informed choice, if you use it! We did.

History:

  • 11 years ago Ginny broke her left foot just before we went on a long trip. The break wasn’t obvious at the time – she’s had foot and leg pain for decades – but during the trip it got really bad. A nurse in Belgium wrapped it tightly, and by the time we got home, it was back to normal, pain-wise – as okay as it ever is.
  • In 2008 a flare-up led us to get a consult at Beth Israel Deaconess in Boston. The ortho diagnosed a  non-union fracture, untreated prognosis – a break that was not recognized at the time and “healed” wrong. The x-rays also showed extensive bone cysts – fluid-filled holes where there should be solid bone. This would make it hard to fix the bones because there’s not enough bone to screw anything into. So, at the time, the patient (Ginny) and doctor agreed on watchful waiting. The cysts also weaken the bone, contributing to pain.
  • Life has gone on, with the ups and downs that are familiar to anyone with chronic pain.

Current episode and decision to act:

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A real-time e-patient episode: advice for this newly discovered cancer family?

A friend called today and asked for advice. I said this one’s over my head, and we should ask the wider community. Here you go.
________________

Our family has a very new and serious situation, and are reaching out to the e-patient community for advice.  Here is the situation:

  • For several weeks, a morbidly obese woman (5’9″, ~250 lbs.) in her mid-70’s has been in a great deal of pain, centralized in her abdomen, leading to an impaired ability to think clearly or make decisions.
  • Late Friday 5/27 she was taken to the ER of a large research hospital, where they discovered that she has ascites (fluid in the abdomen), and they tapped 2 liters of fluid from there, estimating that there were an additional 2 liters remaining.
  • Blood work shows non-hematopoietic cells circulating in her blood, indicative of metastatic cancer. Analysis has yet to come back from the lab (so we don’t know if cancer cells are GI or GYN in origin).
  • CT scans and trans-vaginal ultrasound reveal multiple tumors in the peritoneal cavity and on the omentum. The tumors vary in size, with the largest being 5 cm in diameter.  Largest tumor is on or near small bowel.

As we say, definitive results have yet to come in to help determine the type of cancer, the extent of it, or even the location of the origin of the cancer — although it is suspected to have originated in the reproductive system, specifically in the endometrium or ovaries. Right now, however, this is just speculation. So we’re in the dark as to the nature of the cancer, and thus how best to treat it.

And that leads to our questions.

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The “Sing” in “Laugh, Sing, and Eat Like a Pig”

Front coverTime Video has just published a video (below) that rocked me on this Sunday morning. It’s time to talk about something that used to be an important part of my life, and will be again: barbershop harmony.

Readers of my first book Laugh, Sing, and Eat Like a Pig know that before, during and after my disease, a huge part of my support came from the men in my chorus, the Nashua Granite Statesmen. At the time they were the northeast champions of the Barbershop Harmony Society, formerly known as SPEBSQSA. They’re the “sing” in the book’s title: shortly after learning I had cancer I asked my physician (Dr. Danny Sands) if I should stop going to rehearsals to save energy, and he said no: at times like this it’s not good to start dropping life activities that you love.

Amen. And I told people that my cancer Rx included singing – “Could be worse!” [Read more…]

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2011 Major Projects: Opportunities and Challenges

My first year full time in healthcare completed on February 28. It’s been terrific, and I’ve been left with a huge number of fascinating project ideas – too many to sort out by myself. So I’ll do the modern thing: discuss it on social media with my peeps! (That’s “people,” for you non-Web-2.0 peeps.)

Some of these are public service ideas, some are purely my business. The point is that there’s clearly an audience for patient engagement, and a big agenda has emerged. I’m open to all ideas for how to make every bit of this a reality in 2011. (Yes, this year!)

Discuss in comments, or contact me via my contact page.

Project 1: “A Million Errors Fixed” [Read more…]