Gimme My Damn Data: cancer patient Xeni finds a “ghost penis” in her bone scanComments on: --

By: “What’s in YOUR record?” Make data quality fun: play along in ONC’s video challenge!–e-Patient Dave | Knowledge of Medicine

Sun, 12 Aug 2012 02:36:24 +0000

[...] [...]

By: “What’s in YOUR record?” Make data quality fun: play along in ONC’s video challenge! | e-Patients.net

Tue, 24 Jul 2012 12:01:59 +0000

[...] widely reported in December, here and elsewhere, famous blogger Xeni’s radiology images got mixed up: “What’s that [...]

By: Access to Your Own Health Data: Is It What You Have, or What You Can Do With It? | GRACE :: News/Info

Wed, 29 Feb 2012 02:40:51 +0000

[...] not getting a timely evaluation. They can also sometimes detect errors in reports, such as this amusing one of the woman (Xeni, the co-founder of famous and wildly popular website boingboing.net) … (warning: some of the language in the story is in the range of lighthearted to [...]

By: francine hardaway

francine hardaway — Mon, 02 Jan 2012 23:50:33 +0000

And that is why HIPPAA and all the posturing around it is such a farce. My late husband was a radiologist, and I know for a fact that his office misfiled things, which is why he read every X-ray while the patient was still in the office, in front of him/her. Now they don’t do stuff like that anymore, and if they do, they don’t give you the data right away.

And GE is one of the biggest offenders in the impossibility of getting/reading/interpreting medical records, because they have a near monopoly on EHRS and equipment and all their stuff is outdated crap. They don’t HAVE to be cutting edge to compete; every hospital has GE as a sunk cost.

By: GRACE :: General» Blog Archive » How Much of Patient Empowerment is about Access to Your Own Health Data?

Sat, 31 Dec 2011 00:14:34 +0000

[...] not getting a timely evaluation. They can also sometimes detect errors in reports, such as this amusing one of the woman who found that she was given the scans for the wrong person by finding that… (warning: some of the language in the story is in the range of lighthearted to [...]

By: 2010, 11, 12: The Media Lab’s January hackathon for patient engagement « e-Patient Dave

Mon, 26 Dec 2011 18:27:15 +0000

[...] December’s news of mega-blogger (and new cancer patient) @Xeni’s rude awakening to the poor state of health IT, and the need to take the reins ourselves: one of her scan CDs contained images that were rather obviously “some dude’s.” (On Twitter she referred to it as “the #ghostpenis.”) Then she had a horrid first MRI experience, which led quickly to the start of a “My First MRI” patient training initiative. [...]

By: Rookie e-patient @Xeni helps the docs view her data–e-Patient Dave | Knowledge of Medicine

Sat, 24 Dec 2011 23:57:20 +0000

[...] [...]

By: Rookie e-patient @Xeni helps the docs view her data | e-Patients.net

Rookie e-patient @Xeni helps the docs view her data | e-Patients.net — Thu, 22 Dec 2011 22:30:37 +0000

[...] 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 [...]

By: The #firstMRI project: helping patients through that horrible first MRI | e-Patients.net

Wed, 21 Dec 2011 17:48:02 +0000

[...] you can see in the later comments on Tuesday’s post, @Xeni’s first MRI did not go well. She was given no hint of what the [...]

By: Christine Kraft

Christine Kraft — Wed, 21 Dec 2011 14:08:53 +0000

Go @Xeni.

By: e-Patient Dave

e-Patient Dave — Wed, 21 Dec 2011 13:02:55 +0000

Hi Sue – good to meet you! Xeni also tweeted last night: “When you go to an amusement park, you know people don’t go there to die. But scary rides are still scary; more so for some. MRI is this way.” Great writer – perceptive and clear.

By: sue

sue — Wed, 21 Dec 2011 12:55:40 +0000

I have had head MRIs and I try to pretend I am a football player…with a helmet on.. I also know not all mri techs are the same and each should be asked “have YOU had one?” Interesting answers given – they are as scared as we are!!

By: e-Patient Dave

e-Patient Dave — Wed, 21 Dec 2011 04:40:05 +0000

Aha: Xeni being Xeni, today she contacted the shop that made the mistake. Summary of her tweets:

Just spoke to the imaging center that gave me Some Other Guy’s data, tracked down the error-ist. Response, and I quote: “Oops.”

… I got an apology. And my correct data. And a promise my data hadn’t been shared with others.

“We’ve instituted a new Quality Control procedure!” the boss said. Me:Yeah? Do tell.”From now on, a 2nd person has to look at each CD.” FML.

They blamed the error on bad software that sort of confuses the user, makes it easy to drag-and-drop the wrong patient ID’s records to burn.

Made them promise to alert the guy whose data was given to me. Made them explain how it happened and own up to the impact on my well-being.

I met the person responsible, who was shaking and scared and apologetic, and I felt sorry for her. I can believe it was in part a UI fail.

[I replied: “@xeni I’d bet 99% it was indeed a UI fail, *combined with management not realizing the problem*”

By: e-Patient Dave

e-Patient Dave — Wed, 21 Dec 2011 04:22:24 +0000

Her first MRI showed what some of us recognize as NOT good customer service (or, as they like to say, “Patient centered care”):

On my way to an MRI. My first ever. I prefer to think of these as debutante balls. I have a date for each of them. A friend accompanying. They’re not tests, but social engagements, and I have a busy social schedule now. I imagine myself wearing a ballroom gown to each.

Today and tomorrow, MRIs. My first ever. Possibly the first of many. Coping strategies welcome, other than drugs.

The venerable Howard Rheingold @hrheingold pipes up:
@xeni Wear the ballroom gowns! Therapy techs have a grim job & love brave lightheartedness. My painted shoes were a hit w/ radiologists

[HA: BRILLIANT:] @jimcobber replies:
@xeni Nothing to worry about. It’s like sitting in garbage can with a bunch of monkeys beating on it with broomsticks.

@gillyarcht: @xeni if i hadn’t been my own advocate, I’d be dead 8 years by now. http://bit.ly/eysKvf and DM if u want hot tips on repeat MRIs

@xeni: Okay. Picking up my date for the MRI. I just told him we’re going to an industrial music dance party. Let’s see how this goes.

@natogreen: @xeni Try to explain why science can give us silent dishwashers but only loud MRIs please.

Then it gets ugly:

—-

@xeni: First MRI ever, today, was like a bad acid trip. I was coping well with deep breathing, until the tech scolded me angrily thru the speakers.

Turns out my chest cavity was opening/closing too much due to the deep breathing. She bummed my trip out. After that, full blown PTSD.

Not everyone you encounter in the medical profession behaves like a “caretaker,” I learned in that moment. It was the wrong moment.

I’m not claustrophobic. And love SRL shows & Throbbing Gristle. Silent small spaces are ok. Loud large spaces are ok. Loud small spaces no.

After the tech scolded me, I breathed as shallow as possible, and panic set in. My heart beat like a rabbit kicking cage before slaughter.

I focused my mind on serenity and strength and love as hard as possible, when those walls of panic hit. And I made it through. But man.

What I would have given for a hand to hold. Or an Atavan. Or both.

Waiting now, to hear if the scan is usable, or if we have to delay everything and re-do. Either way, I have another different MRI tomorrow.

One more – @ChrisHallbeck added his experience: @xeni Dang, I’m claustrophobic but I made it through my MRIs by imagining I was going into a suspended animation tube on a trip to mars.

========

Later she said:
If any of you are MRI techs, please : The correct response to “I’m afraid and having a panic attack” isn’t “I told you to stop moving.”

And: “Going to a new place tomorrow.” Good for you, Xeni.

By: e-Patient Dave

e-Patient Dave — Wed, 21 Dec 2011 04:01:27 +0000

A few updates – I won’t bother Tweetstalking her (you can do that yourself), but she tweeted today:
—–
“@healthblawg @epatientdave as I told a friend yesterday, it’s like being assigned the most important story of your entire life: your life.”
—–
Just spoke to the imaging center that gave me Some Other Guy’s data, tracked down the error-ist. Response, and I quote: “Oops.”
—–
most frightening thing about my #ghostpenis data mixup story: happens all the time to other patients who are not as involved in own care.
—–
@jrsydevils replied, spreading the awakening:
Wonder what % of them would have gone as far as you did or even bother at all to find a way to access the scan data on their own
—–
Never would’ve realized value of pushing for copies of your own medical data, and looking at that data, before this. I’m a true believer.
—–
Friend @isalara said:
@xeni my friend @mswz is always advocating for that, just copied her in an MT.
@xeni replied: “Right on.”
[Me: Woot - @msWz is one of SPM's twitter buddies! 2 degrees of separation.]
—–
Meanwhile, @bextopia tweeted:
“My first #mammogram, imspired by @xeni, may be foobarred because my obgyn faxed the imaging center the wrong colored form.”

By: Open Data and Body Parts: A Cautionary Tale « My Year of Data

Open Data and Body Parts: A Cautionary Tale « My Year of Data — Tue, 20 Dec 2011 22:28:47 +0000

[...] and a good writeup of the issues involved (including Xeni’s twitter feed) can be found at e-patients.net. It’s pretty riveting, and despite the underlying seriousness, even funny at times. It [...]

By: @Stales

@Stales — Tue, 20 Dec 2011 21:11:12 +0000

WOW! That’s all I can think to say. I know exactly what she’s feeling. The thought that someone else might have your info is always the worst. This is so wrong.

On a seperate note: hacking the mammo file. I love it. I’ve got some disks laying around with my data on it too, might need to bust into these tonight! The new gold standard of gimme my damn data in the #BCSM world! LOVE IT!

By: Meredith Gould

Meredith Gould — Tue, 20 Dec 2011 18:52:56 +0000

This is me, screaming, and not with joy, although I love @Xeni’s reference to Mr. Ghost Dick.

By: e-Patient Dave

e-Patient Dave — Tue, 20 Dec 2011 18:24:54 +0000

Great story, Joe.

By: ICMCC News Page » Gimme My Damn Data: cancer patient Xeni finds a “ghost penis” in her bone scan

Tue, 20 Dec 2011 16:50:38 +0000

[...] Article e-Patient Dave, e-patients.net, 20 December 2011 [...]