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November 28, 2013 By e-Patient Dave Leave a Comment

Engage With Grace: annual Thanksgiving blog rally on responsibility about end of life

Once again this year, Alexandra Drane of Eliza Corp., and friends, have coordinated the Engage With Grace blog rally, in which scores of healthcare bloggers devote their site, for a day or more, to this important topic.

They chose this time of family get-togethers to encourage conversations about our end of life choices. It may seem odd, but what other opportunities do we have to discuss, in quiet moments, this most intimate of subjects?

In case you haven’t seen it, here’s Alex’s talk at TEDMED 2010 in San Diego, with the moving story of her sister-in-law’s death – and how very, very important it was to her daughter (to this day) that her mother’s wishes were honored.

Be sure your wishes are known. Even if you don’t expect your words to matter for a long, long time, say them now.

Here’s “The One Slide” with the five questions Engage With Grace asks us to answer. In fact, you can go to their site and register your wishes.

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November 17, 2013 By e-Patient Dave 9 Comments

Wonderful experience at #AMIA2013

AMIA 2013 standing O — Photo of standing ovation by Gunther Eysenbach

AMIA is the American Medical Informatics Association. I just gave the opening keynote at their annual conference. What a thrill.

“Informatics” has various definitions, but what it boils down to is that it’s everything about the use of I.T. to support clinical activities. Or, as one senior figure told me at dinner last night, “Informatics is computer science that cares about what’s in the data.” (That’s as opposed to computer science where all they do is move the data around, regardless of what’s in it.)

AMIA has a special spot in my heart because my primary physician Dr. Danny Sands is one of the best known figures in it. Walking around with him there, it’s obvious how many people love him.

And, well, these are my people: data geeks! My whole career has been involved one way or another with information technology, and that’s what this association is about.

I had extreme anxiety about this talk, partly because I so wanted to do justice to the many fine people I know there who invited me, partly because it was a huge audience (2,000), but also because I only had one hour, and I had two hours of things to say. So many important things to think about – what to include and what not? And how to put it together in a sequence that builds to a fitting conclusion?

Well, it worked out. A standing ovation (see photo). What an honor, what a thrill.

I’m truly humbled, thrilled and happy to be able to connect this well with an audience that I so admire. Thank you especially to AMIA board member Bonnie Westra, of the U of Minnesota School of Nursing, and John Holmes of the U of Pennsylvania Perelman School of Medicine [see comment below], for initiating this invitation. I was invited to last year’s event but was already booked – so we signed this deal in July 2012. Couldn’t have worked out better.

A taste of how fun it was is in the Twitter feed below.
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November 3, 2013 By e-Patient Dave 3 Comments

Speaker Academy #13: Strategic freebies

This is the latest in 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.

There seems to be a storm brewing around the issue of speaking for free (or not), which I’ve written about several times (most recently last week). I expect it’s going to get louder, so I want to clarify some points. Then I want to get back to engaging with the audience!

This may be controversial to some readers; fine – I’m open. Let’s discuss or (correct me) in the comments:

Your time is your own. I’ve never said you should never speak for free.

I do say that you should be thoughtful about how you spend your time, and not be suckered by event organizers who flatter you about your greatness but offer you nothing. Those people are usually parasites, making a living off your time and your thoughts.
- My favorite low-life conference organizer, World Congress, once pumped my brain for an hour about who should speak at an event they were organizing. They were so enthused I assumed that after a couple of years wrangling with me, I was finally going to speak there. Nope: they didn’t know a single thing about the conference topic, so they were just pumping my brain! Then they went and got those people to speak – for free, I’m sure, while advertising that they’d convened a summit on the subject.

Particularly relevant at this moment is that some events truly do bring you good exposure, which leads on to good things.

My view isn’t the only view, but: in my view perfectly good reasons to do a freebie include (but aren’t limited to): [Read more…]

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.

My talk at NCSBN (National Council of State Boards of Nursing)

In August I gave one of my most successful speeches ever, at the annual meeting of the National Council of State Boards of Nursing (ncsbn.org). These are the people who do board certification of nurses and, when necessary, look into cases where discipline may be needed. In short, these are people for whom quality makes all the difference in the world; it is their work.

I was inspired and thrilled to be invited to speak to them. As always, we had a lengthy call to plan the focus and objectives of this talk. Here’s the video – I’m even more thrilled that they hired such a great video company! Multiple cameras, high quality slide rendering, and terrific editing. Thank you!

The video doesn’t show it, but the audience gave a standing ovation. It’s a wonderful feeling to connect with people at that level.

If you can’t see the video, click here.

Evaluations:

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