e-Patient Dave

November 2, 2013 By e-Patient Dave 8 Comments

e-Patient Request: Abdominal Sarcoma

Ben Merrion's Walking Gallery jacket Update the next afternoon: already some great information has arrived in the comments (and questions to clarify). Be sure to read the comments. There’s no instant miracle here – it’s just the work of social media in healthcare unfolding.
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This comes tonight from Regina Holliday, creator of the Medical Mural Advocacy Project and the Walking Gallery of Healthcare.

Tonight she visited Ben Merrion, whose Walking Gallery jacket [right] was featured two years ago in her post Steampunk Health. Here’s what I know:

Ben’s in Georgetown Hospital with abdominal sarcoma*
Main mass 3m by 8cm [1.2 x 3.2″]
Tumor growth throughout abdomen from stomach to pelvis.
Nodules detected in lungs.
Probable involvement of leg awaiting PET scan to determine extent of Metastatic spread.
The growth is too large for surgery.

Regina writes: “Know any options that work at stage 4?”

* From Wikipedia: sarcomas are “malignant tumors made of cancerous bone, cartilage, fat, muscle, vascular, or hematopoietic tissues … This is in contrast to a malignant tumor originating from epithelial cells, which are termed carcinoma. Human sarcomas are quite rare.”

Also, the American Cancer Society’s consumer-level page seems quite clear, to me, with discussion of the different types of soft tissue sarcomas.

Resources

Of course googling any disease name and “treatment options” will bring up the usual list of websites, but if that’s sufficient, people don’t come here with an e-patient request. So the list below is things that go beyond the usual suspects. Here’s what I found so far:

The Liddy Shriver Sarcoma Initiative, which among other things says “We recommend Dr. Kevin Jones’ book, What Doctors Cannot Tell You. Dr. Jones is a sarcoma specialist. In this 2012 book, he shares his experiences in order to help patients better communicate with their doctors.”
Inspire.com’s soft tissue sarcomas group
Dr. George Demetri is a big advocate for e-patients. He’s in the e-patient white paper (PDF) and is Medical Director of the Center for Sarcoma and Bone Oncology (and director of Experimental Therapeutics) at Dana Farber. See his emailed reply, pasted into a comment below.

Anyone?

October 28, 2013 By e-Patient Dave 6 Comments

Speaker Academy #12: “Slaves of the Internet, Unite!” (NYTimes Sunday Review)

This is a brief addition to the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to give a talk but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

This post is particularly about how to deal with clients who say “We’d be really honored to have you speak for us. For free. We love your work, but it’s worth exactly nothing to us.”

Yesterday’s New York Times Sunday Review had a piece by Tim Kreider that’s so close to what we discussed here that a half dozen people tweeted it at me. :-) It’s about freelancing as a writer or illustrator, but the lessons are identical for patient speakers. In the Times illustration at right, change the language from “artists” etc to “speakers” etc and you’ll recognize it.

Go read the piece. (It’s only 1600 words – 3-4 minutes for most people.) The author’s closing advice will sound familiar:

Here, for public use, is my very own template for a response to people who offer to let me write something for them for nothing:

Thanks very much for your compliments on my [writing/illustration/whatever thing you do]. I’m flattered by your invitation to [do whatever it is they want you to do for nothing]. But [thing you do] is work, it takes time, it’s how I make my living, and in this economy I can’t afford to do it for free. I’m sorry to decline, but thanks again, sincerely, for your kind words about my work.

Feel free to amend as necessary. This I’m willing to give away.

Tim Kreider is the author of “We Learn Nothing,” a collection of essays and cartoons.

Going global: Let Patients Help Europe Tour, Fall 2013

Euro tour map Nov 2013 — Map created by www.travellerspoint.com. Fun and free!

Let Patients Help is a successful book, but in the early days of its movement, it was common to hear skeptics say “This is only in America.” Boy was that wrong.

The first massive proof was TEDx Maastricht, the seminal event constructed by Lucien Engelen from Radboud UMC (university medical center) in the Dutch town of Nijmegen. It was such a big deal – the first conference I know of anywhere that was totally focused around patients … so many patients that a blogger Grand Rounds was devoted to videos of the talks patients gave at that event.

It was the first time anyone heard the chant “Let Patients Help” in a TED Talk, and the response has been enormous: almost a half million views so far on TED.com. TED says there’s usually the same number on other sites, so that means almost a million views. Volunteers have added subtitles created in 26 languages, so I’d say it’s not “only in America.”

This fall, Europe goes “e,” big-time, with four events in one month.

In November four events in four European customers will focus on Let Patients Help, all driven by visionaries who are seriously working on patient engagement – in Athens, Budapest, Amsterdam and Brussels.
[Read more…]

October 24, 2013 By e-Patient Dave 3 Comments

My view of patient experience: “care that’s more caring.”

Pat Rullo of Speak Up and Stay Alive RadiOh! (Twitter @SpeakUpRadioh) is writing a piece for the Association for Patient Experience, whose board chair is Dr. Jim Merlino, Chief Experience Officer at the Cleveland Clinic. (Jim and I had a 7 minute hallway interview at TEDMED 2012; video is at bottom of this post.) Pat wrote, asking “your personal definition of the patient experience … It can be one word – one sentence – or as long as you choose. What does the patient experience mean to you?”

I get a million requests like this (“please write something for us”), and mostly I have to say no, because my backlog of broken promises and overdue blog posts is embarrassing. But I responded to this one because

It’s a short, focused question
It’s directly aligned with thoughts I’m already working on
I can blog the result. :-) (That’s a method I learned years ago from the amazing Ted Eytan of Kaiser.)

Here’s my response: [Read more…]

October 23, 2013 By e-Patient Dave 6 Comments

I’m a Mayo Clinic social media “Fellow”

If I were the usual blogger I’d say “I’m humbled to say…” but honestly, I’m THRILLED! to say that today at the Mayo Ragan Social Media Summit at the Mayo Clinic, they announced a new Social Media Fellowship, and I was appointed to the inaugural class – the first five people appointed to this honor.
THRILLED. What more could I say?? At left is the list of the five of us – all friends of mine! We’re gonna have a virtual kegger.

Here’s the Fellows Program web page, which includes the 4 minute YouTube below. Around 2:50, center director Lee Aase describes this as “a lifetime achievement award … to recognize people who have made exceptional contributions to advancing the practice of social media in healthcare.” Woot.
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