Power to the Patient!
There’s a “Grand Rounds” tradition in the medical blogosphere: every week a health related blogger picks a topic and asks other bloggers to write about it, or submit a post they wrote in the past. The host writes a blog post about the topic, and links to everyone else’s posts.
For instance, here’s the current week’s Grand Rounds, on International Health, and last week’s, on What Gives Your Work Meaning?
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.
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…]
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:
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…]
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:
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).)