Kidney cancer patients, families, caregivers and activists are invited – free- to the fourth annual symposium presented by the Dana Farber / Harvard Cancer Center, June 17. See www.epatientdave.com/Symposium.
New page on this site: “Patient Communities”
People keep asking where they can find a community for their disease. I often don’t have an answer, so it’s time to get to work, collecting information so patients in trouble can find what they need.
As a start, I’ve added a new page to this website: ePatientDave.com/communities. It’s a very preliminary, very partial list of places to go if you want to find a patient community for your disease.
So far it only includes two resources: ACOR and Webicina. (For details, see the page.)
I don’t intend for this page to be the world’s best list, but we need such a list SOMEwhere, and this will at least be a first start, eager to be replaced by something better. (Perhaps it will be an enhanced Webicina list; who knows.)
Thanks to Non-Hodgkins Lymphoma patient Virgil Miller, whose comment on last week’s post led me to finally do this. Virgil, you’ll find that ACOR has a community for your disease.
What a database of communities should be, ultimately: [Read more…]
Post-TEDx interview: history of social movements, good people at HHS, more
Below I posted video of my speech at TEDx in the Netherlands. Throughout the day, Dutch medical magazine Medisch Contact interviewed speakers after their talks. Journalist and moderator Henk Maassen clearly knows his stuff – all his questions were relevant and meaningful.
I quite like where this interview went – everything from the nature of this work to its parallels with social movements from the Sixties and beyond. Thanks so much to TEDx and to Medisch Contact for doing this and making the videos freely available!
Specifically, this TEDx event was organized by Radboud University Nijmegen Medical Centre. (Nijmegen is the oldest city in the Netherlands; in that country, “UMCs” are equivalent to America’s AMCs (academic medical centers).)
Footnotes:
- In the interview, around minute 2:30 there’s party noise – the people in the hallway didn’t know there was taping going on.)
- Here’s the Wikipedia page on Medisch Contact, translated using Google Translate.
The “Sing” in “Laugh, Sing, and Eat Like a Pig”
Time 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…]
“Let Patients Help”: Rockin’ the e-patient world at TEDx Maastricht
What fun THIS was. On the spur of the moment, people backstage convinced me to insert a few seconds of The e-Patient Rap, written by health IT blogger Keith Boone (@Motorcycle_Guy on Twitter). Keith, you rock!
Two wonderful things about this:
- There were numerous patient speakers at this event. First time I’ve ever seen that! That’s why I inserted a new slide at the start of my talk: “The Year of Patients Rising”
- At the end of my talk, the audience joined in (900 people!) in chanting: “Let Patients Help! Let Patients Help!”
See also the basement interview we did later that day, with Dutch medical association magazine Medisch Contact.
This TEDx event was organized by Radboud University Nijmegen Medical Centre. (Nijmegen is the oldest city in the Netherlands; in that country, “UMCs” are equivalent to America’s AMCs (academic medical centers).)
New video: “Over My Dead Body”: Why Reliable Systems Matter to Patients
Clicking the image (or this link) will download a small file (.asx Windows Media) that plays the video from AHRQ’s archive of the day. Slides aren’t included in the video; they’re here. (URL updated 8/22/15 due to AHRQ site reorganization)
About the talk: An hour long plenary address, June 2010. I don’t often get a full hour to speak, but when I do, I can really cover the landscape.
About AHRQ: The Agency for Healthcare Research & Quality is a terrific Federal agency that administers grants and contracts for health-related projects, including health IT. This was a high quality group of smart people who manage significant projects. [Read more…]
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