Graham has serious concerns about giving patients too much control over their medical record:
This is supposed to be a medical record, right? For use by physicians, right? Because from the looks of it, you want patients to use medical terminology (which most don’t know, use, or understand) to create their medical record. You want people to know terms like “AV Nodal Re-Entrant Tachycardia” or “Partial Complex Seizure secondary to Temporal Lobe Neoplasm” or “Takayashu’s Thyroiditis,” right? Because that’s what I’m expecting to see in a medical record. Often I don’t hear these terms from patients. I hear that they have, in order, “a funny heart rhythm,” “seizures,” and “thyroid problems.”
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{ 6 comments }
The author makes his own point by misspelling Takayasu’s arteritis
It seems to me there is more than one type of patient, those that are willing to learn, those that aren’t, and those that can’t comprehend. The group Google is targeting is likely to be educated and more than capable of entering data. I have a real problem with doctors assuming ignorance when a patient has been living with a given disease for a long time. Trust me, live 20 years or more with certain diseases and you know the terminology.
There are also intermediaries that could help mitigate the issues around patient ignorance – nurses, medical librarians, health advocates of various stripes, and even doctors.
Granted, not everyone is up to the task. A better thing would be a hybridized system, but no one is taking the time to analyze what would need to happen to make that work. Of course, I may be wrong, but it seems to me there is room for all types – including information freaks.
Pax,
MLO
For many patients, and pain patients in particular, if that patient hands me their medical record, copied from the previous physician, I contact the previous treating physician anyway.
Many is the time I’ve found the patient edited the medical record to remove the reference to the psych admission, the detox treatment, the previous doc’s note about the patient coming in obviously intoxicated, etc. Then there’s the drug-related stuff that can get into the medical record, DUI’s, the police domestic interventions, that sort of thing.
Doctors are often asked to write various notes that might get the patient better treatment from the courts for the offenses, so it ends up in the medical record.
Or at least it would if the patient didn’t happen to remove the particular pages. Then they ask the new doc for the Percocet or Xanax, claiming he’s had it for years without problem.
Now mostly patients bring in their list of medicines, diseases, past surgeries. Fine. With those memory sticks, they should be able to even store op reports, images, EKG tracings, etc., if they want.
But with some, it’s not a matter of misunderstanding their medical record, it’s that they will deliberately alter their record to mislead you.
Having been in a situation in which the doctor put factual errors in my records, I certainly do think it is appropriate that a patient be allowed to add materials to it (not delete — amend). Which is exactly what I did, after seeking the assistance of a very cooperative Health Information Services department and providing the substantiating evidence.
And, were I to take my record elsewhere, I would absolutely remove the errors.
You’re assuming that all doctors are good, honest people. No doubt the vast majority are, but if you happen to get stuck with an exception, you shouldn’t have to pay the price in perpetuity.
–”And, were I to take my record elsewhere, I would absolutely remove the errors.”
That makes more problems than it fixes.
Then you would be not amending the record, but falsifying the record. You might disagree with what your former doctor wrote, but if you change what that doctor wrote, then the record no longer reflects what that other physician was thinking nor does it provide a coherent justification for whatever treatments were prescribed.
Patients are not the experts. They can give history, and a doctor can get that wrong, but wrong or not, the record should reflect what the doctor wrote and presumably thought.
If you submitted that kind of record to me, corrected after the fact to your liking, I would not accept that as a true record. And I would be suspicious of your motives as a patient.
The place for disputes of a medical record is in a separate document, with appropriate references.
Both could then be included in your new record, the doctor’s records as professional records and yours as history.
Any other way has the patient “playing doctor”. On himself.
Unfortunately, the law (quite erroneously) puts ownership of records (the paper at least) in physicians’ hands. That’s an error we must fix. My records belong to me just as the plans I ask an architect to draw or the program I tell my computer consultant to write.
Doctors are not special–the law treats them (and lawyers) differently largely due to antiquated notions of professionalism. We have to get over it.
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