Rookie e-patient @Xeni helps the docs view her data

Update 6:33pm ET: the Storify feed wasn’t working. Should be fixed now.

What a rocket ride it’s been for Xeni. Tuesday morning we reported on the BoingBoing co-editor’s unexpected breast cancer diagnosis 12/9, and her odyssey reading her scan data. (CDs didn’t come with software; in a few hours with Twitter help she’d downloaded OsiriX and was pushing her way through it.) Then she discovered her bone scan included a distinctly male body part, because (as the comments told later), the doc’s system has a crappy UI, making it easy to mix up the images.

Nice, huh? But she did the right thing: she’s engaged in it, she’s doing the “gimme my damn data” thing, and she got it straightened out.

Her first MRI the other day was a horrible experience: she was given no warning of how loud and claustrophobic it would be, and the technician empathetically scolded her for not being a good patient. Sweet. This led to rapid crowdsourcing of a “#firstMRI project” to help people learn in advance what to expect. (See yesterday’s post here.) I suspect this is gonna be a big deal in 2012.

Well, for her second MRI Xeni took her business elsewhere – found a much better machine and nicer people. By now, in four days Xeni has gone from being a total newbie to a totally empowered data-toting e-patient. Here’s today’s harvest from her tweets. (This is aggregated using Storify, btw, which is a pretttty danged slick tool for harvesting content from all over creation, including tweets.)

Would anyone out there like to say, “Patients, stay off the internet”?

Here’s hoping Xeni’s fame and following will create a big honkin’ wave of newly engaged, empowered patients out there. Let’s move this movement out beyond our healthcare circles – take it to the streets!

 

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Comments

3 Responses to “Rookie e-patient @Xeni helps the docs view her data”

  1. Yay, Xeni! I’m sorry I wasn’t around to help, but glad you didn’t let those hurdles get in your way. I’ve been silently following Dave’s posts about you, and wanted to encourage you. I also want to encourage other patients to do the same. It is eye-opening when one sees what is actually on all that medical “stuff”. I just wanted to say, “I care.”

  2. Carla (@confluently) says:

    Again kudos, Dvae, for keeping this great story alive (and also for sowing us Storify!) It is wonderful watching Xeni exemplify all the things the “e” patient can mean :->

  3. […] Article e-Patient Dave, e-patients.net, 22 December 2011 […]

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