{"id":1695,"date":"2009-04-01T09:55:22","date_gmt":"2009-04-01T14:55:22","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=1695"},"modified":"2022-09-19T16:05:30","modified_gmt":"2022-09-19T20:05:30","slug":"imagine-if-someone-had-been-managing-your-data-and-then-you-looked","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/04\/imagine-if-someone-had-been-managing-your-data-and-then-you-looked.html","title":{"rendered":"Imagine someone had been managing your data, and then you looked."},"content":{"rendered":"

This is a complex post, so don\u2019t jump to any conclusions.<\/p>\n

Two weeks ago (gad, was it that long?) I asked you to think about something<\/a> for a few days:<\/p>\n

Imagine that for all your life, and your parents\u2019 lives, your money had been managed by other people who had extensive training and licensing. Imagine that all your records were in their possession, and you could occasionally see parts of them, but you just figured the pros had it under control.<\/p>\n

Imagine that you knew you weren\u2019t a financial planner but you wanted to take as much responsibility as you could \u2013 to participate. Imagine that some money managers (not all, but many) attacked people who wanted to make their own decisions, saying \u201cWho\u2019s the financial planner here?\u201d<\/p>\n

Then imagine that one day you were allowed to see the records, and you found out there were a whole lot of errors, and the people carefully guarding your data were not as on top of things as everyone thought.<\/p><\/blockquote>\n

Two weeks before that post, I\u2019d had a personal breakthough in my thinking. For a year I\u2019d been a rabid enemy of Google Health, but now I said: I\u2019m\u00a0putting my data in Google and HealthVault<\/strong><\/a>: \u201cI\u2019m concluding that we can do more good by aggregating our data<\/strong> into large, anonymized databanks that smart software can analyze <\/strong>to look for patterns. Early detection means early intervention means fewer crises.\u201d And I observed that the power of Web 2.0 \u201cmash-ups\u201d \u2026<\/p>\n

\u2026lets people create software gadgets<\/em> without knowing how they\u2019ll be used, it lets people build tools <\/em>that use data without knowing where the data will come from, and it lets people build big new systems<\/em> just by assembling them out of \u201csoftware Legos.\u201d<\/p><\/blockquote>\n

So, I said, \u201cI\u2019m in.\u201d I decided to punch the big red button and copy my personal health data into Google Health. What happened is the result of PatientSite’s “version 1” implementation, not their eventual full implementation, of the interface. To my knowledge, zero or one other hospitals have any interface at all, and as I’ll say later, I’m not even sure how much of the Google Health side of the connection is complete. Nonetheless, what I learned about my own data was quite informative, and quite surprising. (I’ve discussed what follows with hospital staff; this isn’t gossip behind anyone’s back. IMO, empowered people don’t gossip, they communicate clearly and directly with the people involved.)<\/p>\n

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When Google Health launched last May, my hospital\u2019s CIO blog said \u201cwe have enhanced our hospital and ambulatory systems such that a patient, with their consent and control, can upload their BIDMC records to Google Health in a few keystrokes. There is no need to manually enter this health data into Google’s personal health record, unlike earlier PHRs from Dr. Koop, HealthCentral and Revolution Health.\u201d So I went into my patient portal, PatientSite<\/a>, and clicked the button to do it. I checked the boxes for all the options and clicked Upload. It was pretty quick.<\/p>\n

\"HCTz<\/a>But WTF?\u00a0An alarm: “! Requires immediate attention”<\/strong> [see screen capture at right]<\/em><\/p>\n

Okay, yes, HCTz is my blood pressure medication. But low potassium? That was true when I was hospitalized two years ago, not now. What\u2019s going on?<\/p>\n

Then I saw the list of \u201cconditions\u201d it told Google I have. At left is a partial screen grab, and at right is the complete condition list that PatientSite transmitted: (Spoiler alert; this stuff is biological and might seem gross.)
\n\"Google<\/p>\n

Acidosis\u00a0 Anxiety Disorder\r\nAortic Aneurysm\r\nArthroplasty - Hip, Total Replacemt\r\nBone Disease\r\nCANCER\r\nCancer\r\nMetastasis to Bone\r\nCardiac Impairment\r\nCHEST MASS\r\nChronic Lung Disease\r\nDepressed Mood\r\nDEPRESSION\r\nDiarrhea\r\nElevated Blood Pressure\r\nHair Follicle Inflammation w Abscess\r\nin Sweat Gland Areas\r\nHEALTH MAINTENANCE\r\nHYDRADENITIS\r\nHYPERTENSION\r\nInflammation of the Large Intestine\r\nIntestinal Parasitic Infection\r\nKidney Problems Causing a Decreased Amount of\r\nUrine to be Passed\r\nLightheaded\r\nLow Amount of Calcium in the Blood\r\nLow Amount of Potassium in the Blood\r\nMalignant Neoplastic Disease\r\nMigraine Headache\r\nMIGRAINES\r\nNausea and Vomiting\r\nNephrosis\r\nPSYCH\r\nRash\r\nSpread of Cancer to Brain or Spinal Cord\r\nSwollen Lymph Nodes<\/pre>\n
Yes, ladies and germs, it transmitted everything I\u2019ve ever had. With almost no dates attached.<\/strong> (It did have the correct date for my very first visit, and for Chest Mass, the x-ray that first found the undiagnosed lesion that turned out to be cancer. But the date for CANCER itself, the big one, was 5\/25\/07 \u2013 four months after the diagnosis. And no other line item had any date. For instance, the “anxiety” diagnosis was when I was puking my guts out during my cancer treatment. I got medicated for that, justified by the intelligent observation (diagnosis) that I was anxious. But you wouldn’t know that <\/em>from looking at this.)<\/p>\n
See how some of the listed conditions have links for More Info? \"Optical<\/a>Let\u2019s see, I was diagnosed with optical migraine. (I diagnosed myself, actually, by researching my symptoms and finding this illustrated site<\/a>. That\u2019s what e-patients do; it saves time in the doctor\u2019s office\u2026<\/strong> I brought a printout, with a dated list of episodes.)<\/em> But optical migraine is not the impression you\u2019d get from reading my Conditions list \u2013 in fact during my cancer workup one resident said \u201cBut you have headaches, right?\u201d \u201cNo,\u201d I said \u2013 \u201coptical migraines, but without pain.\u201d (Update 4\/2: the illustration at left shows the dazzling pattern that an optical migraine produces.)<\/em> So for that item in the conditions list, I clicked More Info. I didn\u2019t get more info (i.e. accurate info) about my diagnosis, just Google\u2019s encyclopedia-style article about migraines in general. (An optical migraine has little in common with migraines in general.)<\/p>\n
The really fun stuff, though, is that some of the conditions transmitted are things I\u2019ve never had: <\/strong>aortic aneurysm and mets to the brain or spine. So what the heck??<\/p>\n
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I\u2019ve been discussing this with the docs in the back room here, and they quickly figured out what was going on before I confirmed it: the system transmitted insurance billing codes<\/strong> to Google Health, not doctors\u2019 diagnoses.<\/strong> And as those in the know are well aware, in our system today, insurance billing codes bear no resemblance to reality. (I don\u2019t want to get into the whole thing right now, but basically if a doc needs to bill insurance for something and the list of billing codes doesn\u2019t happen to include exactly what your condition is, they cram it into something else so the stupid system will accept it.) (And, btw, everyone in the business is apparently accustomed to the system being stupid, so it\u2019s no surprise that nobody can tell whether things are making any sense: nobody counts on the data to be meaningful in the first place.)<\/p>\n
It was around this time that I commented<\/a> on Ted Eytan\u2019s blog, \u201cwhen you\u2019re exporting to a new system, the rule is, Garbage Out, Garbage In. (Hint: visibility into the data in your old system may leave you aghast.)<\/strong>\u201d We could (and will someday) have a nice big discussion about why the hell the most expensive healthcare system in the world (America\u2019s) STILL doesn\u2019t have an accurate data model, but that\u2019s not my point. We’ll get to that.<\/p>\n
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And now we get to why I said, at the outset, don\u2019t jump to conclusions. I\u2019m mildly bitching about PatientSite, but that alone wouldn\u2019t justify staying up to 3 in the morning<\/del> all night writing a 2800<\/del> 3500 word post; that one system isn’t a big deal for e-patients everywhere. (And besides, although PatientSite is old and clunky, a 1999 system if I ever saw one, it beats what most hospitals offer, and it did the job very well for me during my illness. And this is just version 1 of the interface; the current folly is not a permanent situation.)<\/p>\n
The BIG question is, do you know what\u2019s in your medical record?<\/strong> And THAT is a question worth answering. For every one of you.<\/p>\n
See, every time I speak at a conference I point out that my 12\/6\/2003 x-ray identified me as a 53 year old woman. I admit I have the man-boob thing going on, but not THAT much. And here\u2019s the next thing: it took me months to get that error corrected, because nobody\u2019s in the habit of actually fixing errors.<\/strong> Think about THAT.<\/p>\n
I mean, some EMR pontificators are saying \u201cOnline data in the hospital won\u2019t do any good at the scene of a car crash.\u201d Well, GOOD: you think I\u2019d want the EMTs to think I have an aneurysm, anxiety, migraines and brain mets?? Yet if I hadn\u2019t punched that button, I never would have known my data in the system was erroneous.<\/p>\n
And this isn\u2019t just academic:<\/strong> remember the Minnesota kidney cancer tragedy<\/a> just a year ago, which arose at least partly out of an error that ended up in the hospital\u2019s EMR system. Their patient portal allowed patients and family to view some radiology reports, but not the one that contained the fateful error.<\/p>\n
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The punch line came when I got over my surprise about what had been transmitted, and realized what had not: my history. Weight, BP, and lab data were all still in PatientSite, and not in Google Health. So I went back and looked at the boxes I\u2019d checked for what data to send, and son of a gun, there were only three boxes: diagnoses, medications, and allergies. Nothing about lab data, nothing about vital signs.<\/strong>(So much for \u201cno need to manually enter this health data into Google’s personal health record.\u201d) And of the three things it did transmit:<\/p>\n