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Personal health records: the data’s not in (really)

A PHR (Personal Health Records) system like Google Health supposedly “puts you in charge of your health information,” but where do you start? ePatient Dave e-patients.net, decided to take the plunge and move his considerable (after bouts with cancer) health data to Google’s system. His hospital was already supporting easy upload of patient records to Google Health, a matter of specifying options and clicking a button at the patient portal.

The result? “…it transmitted everything I’ve ever had. With almost no dates attached.” So you couldn’t tell, for instance, that the diagnosis of anxiety was related to chemotherapy-induced nausea: “… 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 from looking at this.”

Where there was supposed to be “more info” about conditions listed, the information wasn’t particularly robust, and some conditions were listed that Dave never had.

I’ve 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 to Google Health, not doctors’ diagnoses. And as those in the know are well aware, in our system today, insurance billing codes bear no resemblance to reality.

All this raises the question, and the point of Dave’s post: do you know what’s in your medical records? Is it accurate information? If some physician down the line was reading it, would (s)he make an accurate assessment of your history?

Think about THAT. I mean, some EMR pontificators are saying “Online data in the hospital won’t do any good at the scene of a car crash.” Well, GOOD: you think I’d want the EMTs to think I have an aneurysm, anxiety, migraines and brain mets?? Yet if I hadn’t punched that button, I never would have known my data in the system was erroneous.

Dave realized that the records transmitted to Google Health were in some cases erroneous, and overall incomplete.

So I went back and looked at the boxes I’d checked for what data to send, and son of a gun, there were only three boxes: diagnoses, medications, and allergies. So I went back and looked at the boxes I’d 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.

Dave goes on to make a rather long and magnificent post, which you should read (here’s the link again). The bottom line is that patients need working, interoperable data, and patients should be accessing and reviewing, and there should be methods for correcting factual inaccuracies.

We’re saying this having heard that most hospitals aren’t storing data digitally, anyway. This is new territory and we know we have to go there. Salient points:

  • Get the records online
  • Make sure they’re accurate
  • Have interoperable data standards and a way to show a complete and accurate history for any patient
  • Have clarity about who can change and who can annotate records

That’s just a first few thoughts – much more to consider. If you’re interested in this subject, read e-patients.net regularly.

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