Via
RISKS Digest, an article from
The Boston Globe about how 59 year old Dave deBronkart, a survivor of kidney cancer, erroneously got
billing data imported into his Google Health clinical history. Billing data are not meant to precisely describe clinical conditions, but are often used as approximations when coding reimbursements, which is why deBronkart got a chilling scare when Google Health suddenly informed him that he had diagnoses like brain metastasis and an aortic aneurysm. Blogging about his experience over at
e-Patients.net, deBronkart also describes how, presumably through the same mechanism, a diagnosis like optical migraine had been transmogrified into plain old migraine headache and year-old diagnoses of hypokalemia and anxiety were revived and flagged as medical alerts.
How could this have been avoided? For starters, by having aligning data models on both ends of the export/import pipe. Standardization bodies like
HL7 have been working since the early eighties to providing standardized methods for information exchange, but still Personal EHR providers are reinventing the wheel, leading inevitably to errors like these. Who's to blame? Beth Israel Deaconess Medical Center's PatientSite, or Google Health? Who would be sued if these runaway billing data imposing as real clinical data had led to medical errors somewhere down the chain? deBronkart makes no conclusion, but calls for patients to claim ownership and responsibility for their own data. He also calls for vendors and the open source community to start making standardized systems.
Looking at it from another angle — who's liable if users themselves enter erroneous data into personal health records? Most doctors are familiar with patients who come to appointments with huge stacks of printouts from various sources, and most are wary in trusting these data. Are personal health records doomed to fail? The answer of course depends on the condition. Headache or allergy diaries can be immensely useful, but a patient presenting an PHR record claiming and inexplicable and intractable pain condition and paracetamol and NSAID allergies... Well, I guess you all know where I'm headed.
Personal health records — a blessing or a curse? I guess it remains to be seen. Stories like these don't exactly inspire confidence, though.