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

This post contains street language about body parts, harvested from Twitter last night with Xeni’s permission.

This is a story of a non-medical person getting it in gear when she finds herself in need, and what happens when she does.

A famous blogger/journalist is discovering healthcare the hard way. At a time when she says she’s quite upset, she had a hard time Sunday opening the scan CDs her doctors gave her; she got help for that online. Then a few hours ago she tweeted that her doctors got some scan data mixed up, and it’s not pleasant to think of the implications for her “Q of service.”

Background

We’re known on this blog, and in the Society for Participatory Medicine, for advocating “Gimme My Damn Data.” We’ve advocated for it in Washington, we write about medical records often, and Monday night we posted the latest about this movement in the OpenNotes project and the VA’s patient health portal.

One important reason is to let patients be a second set of eyes, to check the quality – accuracy – of the data. Some doctors get huffy about it, saying it’s their business, not ours. Some say we’ll freak out if we see it. But in this movement, we say “Gimme My Damn Data,” which was the title of my first keynote speech, in 2009. (It’s got traction: googling that phrase gives zillions of hits.)

Our first big story about radiology data (scans) was in 2008, when Jon Lebkowsky wrote that internet visionary Doc Searls had a problem with his scan data; then we posted about DICOM viewers Doc might have found, given less time pressure. This October we noted that cloud scan storage is coming along.

But the street reality is that most of the world doesn’t know this – even the cognoscenti. This story is about how one of the hippest journos of our time, Xeni, discovered and is dealing with a cancer diagnosis, and with life as a patient trying to be engaged in her care.

About Xeni

To put this in context, you need to know who Xeni is. Wikipedia:

“…an American weblogger, digital media commentator, and tech culture journalist. She is known for her position as co-editor of the collaborative weblog Boing Boing, as a contributor to Wired magazine and Wired News, and as a correspondent for the National Public Radio show Day to Day. She has also worked as a guest technology news commentator for television networks such as CNN, Fox News, MSNBC and ABC.”

In short, this is no slouch of an observer.

Xeni at the scan

Photo: BoingBoing

Her diagnosis

This month, out of nowhere, Xeni found out she has breast cancer. She was live-tweeting and instagr.am’ing [right] her first mammogram when the news hit out of nowhere, and she wrote a powerful, dizzying post about the experience. Having been through a similar discovery myself, when I read hers I felt: “Sister. I know what you mean.”

(Anyone who says “We’re all patients someday” has no idea until they’ve had this moment, where they realize their ass is on the line, now.)

SPM Secretary Deb Linton, self-declared fangirl of Xeni, posted  her reaction on the Health 2.0 blog.

Xeni gets her bytes on:

Well, this Sunday Xeni decided to plunge into her scan data. She’d gotten three CDs from radiology, but they apparently didn’t come with a built-in viewer. (The ones from my hospital come with a horrible 1995-looking viewer, but at least it’s a viewer, if you can figure it out.) So she went to where everyone goes these days when they don’t get answers from medical professionals: social media, which in turn sent her to Wikipedia and open source software.

Tonight friend Judson Dunn (@JudsonDunn) tweeted

@ePatientDave are you following @xeni? unfortunately a new high profile epatient, but already discovered an error looking at her radiology.

(e-Patient? Yes: a totally online patient; empowered and engaged – her post describes researching which mammography shop to use; and here she is, becoming equipped and enabled with her scan data.)

Indeed, Sunday night she live-tweeted trying to open the files. Here’s a transcript. (If you don’t know Twitter or other slang, don’t worry; you’ll get the drift.)

And now the tweets:

Sunday night

@Xeni: Trying to jailbreak my mammogram data files. They require proprietary GE workstation. Should be easiest call for hacker help ever. #boobs

@Xeni: So, seriously, if anyone knows how to open “MammoWorkstation” files from the proprietary GE healthcare format, @ a girl. Thanks. #boobs

@Somebadideas: @xeni did you ask technician if they can be saved in other file formats for other viewers? i had to do that once with MRI

@Xeni: @somebadideas calling tomorrow to do that. “Ah, yes, can you give me this mammo data in an open-source video codec please? OK ogg vorbis?”

@emp: @xeni LOL. shouldn’t be too difficult if they’re following the DICOM standard for mammography data. en.wikipedia.org/wiki/DICOM

@Xeni: @emp @robschmit thanks. That’s a start.

@Xeni: @coreplane they look like unix executables. I’m browsing through lots of oddly-broken-up files on a CD.

@Fracture98: @xeni Sorry if this is spammy, but in case you missed it: open source viewer: osirix-viewer.com

@Xeni: @Fracture98 thanks, peeping.

@Xeni: Whoah. I got some of the other scans to open. I am now looking at the equivalent of a 24-frame animated gif of my own beating heart.

@coreplane: @xeni Sounds like you’re making progress. You could try the ‘convert’ command just to see if it can make something of the files.

@Xeni: @coreplane yeah, I’m looking at 5 sets of files. The mammo’s still a mystery, totally different format. Will try that.

@deanputney: @xeni Oh my god, that sounds amazing.

@Xeni: @deanputney it’s actually blowing my mind. for real. I can hardly bear to look at it.

@deanputney: @xeni Send it here, I’ll look at it for you.

@Xeni: @deanputney will do.

@deanputney: @xeni I am glad I can relieve you of this burden, friend. I have developed a powerful resistance to mind-blowing animated GIFs.

@Xeni: @deanputney the bone scan one is OMFG. It’s like dividing you into a million prosciutto slices. Basically animated GIF output.

@Xeni: @justinsb thanks! cc @deanputney …dicom-viewer.e-dicom-com.qarchive.org

@chaircrusher: @deanputney @xeni btw slicer & osirix examples of open source research software paid for with yr tax dollars. bargain at twice the price.

@Xeni: @chaircrusher thanks. cc @deanputney slicer.org/slicerWiki/ind…

@deanputney@chaircrusher @xeni Wow! What initiative/govt department paid for these?

@Xeni: @deanputney thanks for the help.

@Xeni: Thanks for help, folks. Managed to open 4 of 5 scan sets (bone, CT, etc) w Osirix. But GE MammoWorkstation data still perplexing. Goodnight!

@Xeni: Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.

@Xeni: And this CT scan makes my butt look big.

@YellowJKT: @xeni i like big scans and i cannot lie. you other radiologists cannot deny!  Retweeted by xeni

16 hour overnight break, then the discovery Monday:

@Xeni: All: thanks for the kind replies about how to open mammogram and various medical imaging files. OsiriX FTW! I’m all set.

@Xeni: @collectSPACE hey pal! thanks for pinging BB about your AMAZING pix today. I was out of pocket today, glad you got through! cc @deanputney

@Xeni: So I figure out how to open my bone scan data. I look. WTF. What’s that dick-shaped ghost-shadow thing—it looks like I have a penis! [1/2]

@Xeni: I agonize about it all day. Do I have a hidden penis hanging out in my leg? Can female parts or colons look dick-shaped on bone scans? 2/3

@Xeni: I call a hacker pal. “That, Xeni, is a dick.” Look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS. 3/3

@Xeni: I don’t even know how I should feel. Today was a day of other new hard news, a Big Day in the fight. And—I have some other guy’s dickscan.

@Xeni: Called the clinic, they’re not open. Now calling an attorney to make sure I handle it appropriately. I don’t want anyone else’s data!

@Xeni: Any legal experts out there care to share advice on what I do, now that I’ve realized I’m in possession of someone else’s data?

@jffcrmr: @xeni Notify agency in charge of overseeing who you got data from, and party giving you the data. Do not contact party whose data you have.

@Xeni: @jffcrmr will do so as soon as they open in the AM. I tried phoning the clinic earlier.

@Xeni: So, the other thing that arises from realizing you’ve been given someone else’s medical imaging data is: does someone else have mine?

@pourmecoffee: @xeni I take it this means you don’t want to be sent pictures of that body part in general. Asking for a friend.

@Xeni: @pourmecoffee LOL

@Xeni: I spoke to several loved ones today re: how upset I was to see this mystery “ghost penis” on my bone scan (on top of my own mortal worries).

@Xeni: Big thanks to @tbias for helping me use deductive reasoning, hacker sleuthery, and occcam’s razor to uncover truth. #notmydickinthebonescan

@jose602: @xeni If dude’s name is mentioned in the metadata, is it alphabetically close to yours? Or was the scan on or near the date yours was done?

@Xeni: @jose602 I’m not going to look at the data again, only viewed accidentally, so I don’t know. :)

@deanputney: @xeni I really want to think that this tweet is the result of @tbias saying “Yup. That’s a dick.”

@Xeni: @deanputney @tbias bingo. that is exactly what he said.

@bashert54: @xeni most likely someone else does have your medical data.

@Xeni: @bashert54 horrified by that. Not even because it’d upset me that much if it were made public? But makes me lose faith in Q of service.

@Random_Tangent: @xeni mi madre the doctor is stumped. Says talking to ‘em is the only step she can think of. Was it a disc of your data AND ghost dong?

@Xeni: @Random_Tangent 3 CDs given to me, with radiologist’s written analysis. 1 of 3 CDs was Mr. Ghost Dick’s. Other CDs, correctly mine.

@minus1cjb: @xeni were all CDs labelled with your name?

@Xeni:  @minus1cjb They sure were. Only a careful inspection of the metadata revealed the truth.

@Xeni:  @Random_Tangent terrifies me that maybe the analysis I got (which said no bone metastasis!) might have been wrong. :-(

@Xeni: Forgive me, folks, if some of my previous tweets were not up to usual standard of logic. Received some shocks on my own case today. Rattled.

@Xeni: @Random_Tangent 3 scans were MUGA, CT, bone scan. The bone scan was Mr. G-D’s. The MUGA and CT were mine. I THINK.

@Xeni: I got some news today which frightened me. We’ll know more soon. But I am relieved to know I don’t have a secret penis hiding in my leg.

@warandpeace: @xeni As a not-attorney, I advise you to send the scans back with “VISIBLE PENIS” photoshopped overtop in Impact Bold.

@Xeni: @warandpeace LOL. I want to image macro these so bad, but yeah. Not even opening the files again.

@Xeni: My fear now: did cancer docs evaluating my case look at these scans (belonging to Some Guy), analyze my case on his data? I wanna throw up.

@Xeni: The forensics @tbias used: 1) “Do you have metal fillings?” 2)”Hips are too close for a woman” 3)”Yep, that’s a dick. I know, I have one.”

@Xeni: So, if anyone ever asks why having a copy of your medical data, and viewing it, is a good thing? You may now refer them to #ghostpenis tale.

————

I’m reminded of my 2003 chest x-ray: “53 year old woman.” At least in that case it was the right name on the scan – just the wrong boobage.

Items of note:

  • Difficulty of reading her data
  • Usefulness of the internet
  • Yes, she was grossed out at first.
  • It didn’t stop her.
  • Lack of reliable workflow – i.e., having her name put on somebody else’s disk. (I had to type that word carefully.)
    • Labeling problems happen all the time in laboratories – books like Mark Graban’s “Lean Hospitals” detail the many efforts to ensure that test tubes don’t get mislabeled, i.e. “lab results got mixed up.” It happens.
  • The power of social media to share tools, experiences, and information like this. Without raising medical costs.
  • The potential impact on patients – especially cancer patients – when data is mismanaged, and when it’s hidden from the patient.

I say: Let patients help heal healthcare. Give us our data – and make it easy to read.

Anything else? Discuss.

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Posted in: e-patient stories | e-pts resources | medical records | news & gossip

 

 

Comments

23 Responses to “Gimme My Damn Data: cancer patient Xeni finds a “ghost penis” in her bone scan”

  1. jonmcrawford says:

    I happen to know someone who had much the same experience with lung cancer scans. They had their data, but also three other people’s data. And when they went to the ER of that hospital a few months later with an elevated fever, they were given aspirin and sent home, only to have someone call them two days later delicately trying to “inform” them that they saw a mass on the x-ray.

    Ah, time to reminisce about the old days, before I knew that medical professionals are just as dumb as the rest of us…

    • > before I knew that medical professionals
      > are just as dumb as the rest of us…

      Jon, I take your point, but your wording points to what’s actually missing: systems to make workflow reliable.

      Jim Conway, one of the best minds in health quality and medical errors, says his mother was killed in the 1990s by Carney Hospital in Boston. Today in his leadership work in healthcare, having studied it for ages, he says this:

      “Our systems are too complex to expect merely extraordinary people to perform perfectly 100% of the time. We as leaders must put in place systems to support safe practice.”

      So, to return to “as dumb as the rest of us” – yeah, but where other industries got serious about quality improvement long ago – so you can’t take off in a jetliner with the flaps in the wrong position anymore – such controls don’t exist in much of healthcare. (That seems clear, since Xeni’s clinic put her name on a disk containing the dude’s data – obviously the system was not designed to prevent such errors! At my hospital, the machine that makes the CD also prints my name on it.)

      Consider Paul Levy’s post this month about the protocol developed years ago to prevent removing the wrong kidney, etc etc. It works, but many hospitals still don’t use it.

      A major issue in health errors (and thus cost) is that so many managers of hospitals and practices haven’t adopted solutions that work and exist, and the general public doesn’t realize it – AND the industry pretty much blocks publication of quality statistics.

      After Black Friday we knew on Monday that $15.6 billion of sales had happen. The data is wired in. But you pretty much can’t get hospital error data that’s fresher than 2 years ago. Really makes it hard for an empowered citizen to make informed choices, AND it impedes rewarding shops that do improve.

      It also leads to super-tragedies when the workers involved feel terrible for the harm they’ve caused.

      But that’s different from what happened here with Xeni. Inept workflow, period, without sufficient human controls.

  2. When I was a neurosurgical resident, I saw a clinic patient referred for a brain tumor. She had complained of headaches and was sent for a CT. Her doctor got a report of a brain tumor and sent her. Her exam was normal, just headaches.

    I looked at her CT, and the first thing I did was read the name and age of the patient – this had been drilled into me by my wonderful chief. It was someone else’s scan. I showed the attending physician the error.

    I will never forget what happened next. He pulled me into the room, and in his booming New Hampshire accent announced “Wonderful news Mrs. XXXXX! Dr. Ketcherside has cured your tumor. It’s not your scan.”

    Of course she was delighted, and that seared into my brain the need to always look at the name on a record. But I always wondered about the poor fellow who was told his scan was normal. And it wasn’t.

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

  4. @Stales says:

    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!

  5. [...] 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 [...]

  6. 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.”

  7. 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.

  8. 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*”

  9. sue says:

    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!!

    • 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.

  10. [...] 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 [...]

  11. [...] 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 [...]

  12. [...] 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. [...]

  13. [...] 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 [...]

  14. francine hardaway says:

    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.

  15. [...] 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 [...]

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

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