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survive the journey: My picks for the top 10 e-Patients you should be following on Twitter


Saturday, January 23, 2010

My picks for the top 10 e-Patients you should be following on Twitter

In no particular order:

  1. @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)
  2. @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.
  3. @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.
  4. @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.
  5. @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 website and message boards, this woman has done more for Cushing’s awareness, support, and education than anyone.
  6. @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.
  7. @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.
  8. @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.
  9. @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.
  10. @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 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:

Great List — following all of them now!

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2 Comments leave one →
  1. 01/23/2010 10:54 pm

    As a student this is interesting since pharmacy schools are big on “patient-centered care” now. Seems like pharmacists may have a major role in the participatory medicine trend with greater patient access to prescription data. I wonder how this will play out with MTM in the near future.

  2. 04/29/2010 6:14 am

    Thanks for the great post! Looking forward to many more.

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