Power to the Patient!
Welcome to Grand Rounds for May 10, 2011!
I have a confession: I’m new at this. My initial exposure to Grand Rounds a while back gave me a warped view, and as I worked on this project, I was a little bit graceless. (Those of you who wrote to me about it know what I mean. I meant well…)
This week’s theme is the TEDx Maastricht conference that happened April 4. But first –
These news highlights were submitted:
Yesterday while working on a new seminar I’ll be offering1 about patient engagement, I met a new Twitter friend, Mark Harmel (@MarkHarmel), and we talked on the phone for a while. (For some reason my thoughts progress best when I’m in spoken dialog.)
Mark is a healthcare photographer, social media consultant and in 10 days he becomes a public health graduate student. Check out his awesome post about photographing Paris. He’s pretty new to all this “e” stuff, so I talked through my content with him, which helped me fit it to the timeline.
Overnight he emailed about the value of knowing some wonderful, caring doctors. Replying this morning, I had a thought about why patient social networks are so game-changing: they create a new source of value from existing resources. I wrote:
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: