In no particular order:
- @ePatientDave: Dave deBronkart said "Gimme my damn data" and hasn't shut up since. Seriously, he was talking a long time before that, but for some reason, folks really listened when he posted about his experience trying to get his own data. (He's also on the editorial team for the new Journal of Participatory Medicine)
- @TrishaTorrey: Every patient's advocate, she has written a new book entitled "You Bet Your Life! The 10 MistakesEvery Patient Makes" which you can find on her blog. Trisha's story about her own experiences echo so many.
- @thyroidmary: Mary Shomon is THE foremost patient advocate for those of us with thyroid problems. She has kept all of us who use the dessicated T3/T4 combos for thyroid replacement in the loop with the shortages and how to find/get it.
- @accarmichael: Co-founder of Cure Together and a chronic pain survivor, Alexandra Carmichael and her partners are making huge strides documenting patient data and tying it all together. YOU can make a difference by joining and entering your data. And you will learn something from it, too, I promise.
- @cushings: If you want to keep up with what is happening in the "Cushing's Help" world, and with everything anyone is doing related to Cushing's, Mary O'Connor is the woman to follow. Founder and owner of the cushings-help.com website and message boards, this woman has done more for Cushing's awareness, support, and education than anyone.
- @SusannahFox: Susannah keeps up with what is happening with technology and healthcare. A PewInternet researcher, she tweets very valuable information. I'm not sure she is technically an e-patient, but close enough! Everyone is at some point in life.
- @gfry: Gilles Frydman is not a prolific tweeter. But boy, when he has something to say, it's worth hearing. ACOR founder and on the editorial board of the new Journal of Participatory Medicine, he is a strong advocate for patients.
- @jensmccabe: I can't keep up with her because she runs circles around the rest of us, but Jen is an up-and-coming entrepreneur/e-patient eager to solve new problems that we deal with as patients, and taking a new look at old problems. She also has an interesting perspective on numerous health issues. Although I give her a hard time on her numerous blogs/posts, I have the utmost admiration and respect for her. Keep an eye on her. She's going to effect change.
- @ReginaHolliday: Regina's bio on twitter "Regina Holliday is a medical advocate muralist. She is using paint and brushes to promote health reform and patient's rights" does not do justice to who she really is. To really understand, read her story. I hope to meet her some day. She is telling the world how it really is.
- @carlosrizo: MD turned e-patient and entrepreneur, Carlos is first and foremost an e-patient. In fact, I often forget he is a doctor. I think he does, too, when tweeting things such as "Rehearsing my health's "elevator pitch" for my doctor's appointment today. When 15 min is all I have (sadly) every minute counts." He gets it.
If you aren't familiar with the term "e-Patient" then
http://e-patients.net/ has a lot of wonderful information. The wikipedia definition says, "e-patients are increasingly active in their care and are demonstrating the power of the
Participatory Medicine or Health 2.0 / Medicine 2.0[1]. model of care. They are equipped, enabled, empowered, engaged, equals, emancipated and experts." My favorite definition comes from @gfry, though:
Well, aren't YOU the big fan! It's mutual, darlin - you're the one who taught me production tricks last year and hosted OUR grand rounds!
ReplyDeleteHere's a nose tweak for ya - in that tweet, @gfry was just retweeting Susannah. :) All in the family!
Hey, where's Gilles and Susannah...?? They need to settle this. I think the portion after the arrow is Gilles. Honest! ;) But I'd never want to attribute unfairly. Either way, I LIKE IT.
ReplyDeleteI think I'm right: http://twitter.com/SusannahFox/status/5767107988
ReplyDeleteNot that it really matters... ;)
Susannah's tweets say she's up to her eyeballs in evaluating the 200 speaker proposals for O'Reilly's Government 2.0 Expo in May. Gilles is overseas on family business.
ReplyDeleteYou may be right. I never object to that.
Robin is right. The portion after the arrow was added by Gilles. I echo his perspective that 'e' stands for 'equal' but before we get there we need emancipation.
ReplyDeleteThanks so much for including me on this list! You're right that I don't write from the perspective of an e-patient, but rather play the role of an anthropologist: reporting, not judging.
ReplyDeleteAnd Robin, you did track down my original tweet - good sleuthing!