Your life on an electronic file

Imagine your entire life and all your records were in the possession of other people and you could occasionally see parts of what they had, but you just figured the pros had it under control. Dave deBronkart, blogging as PatientDave, gained access to his personal electronic medical records from Beth Israel Deaconess Medical Center and found “a whole lot of errors and the people carefully guarding [the] data were not as on top of things as everything thought.” As he learned, the errors could cost him his life.

“When Google Health launched last May,” he wrote, “my hospital’s CIO blog said ‘we 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…’” So he did.

He discovered that he’d been labeled as having a long list of conditions, even ones he’d never had. Downloaded into his electronic medical records was everything he’d ever had, without dates attached — his “anxiety” diagnosis, for example, was when he was puking his guts out during cancer treatment but the records put nothing into context and didn’t note that he hasn’t experienced it since. But his records said he had other critical conditions he’d never had, like aortic aneurysm and metastacies to his brain.

As he learned, the system transmitted insurance billing codes, not doctors’ diagnoses. “And as those in the know are well aware, in our system today, insurance billing codes bear no resemblance to reality,” he said. It included no medical history or even allergy data. It also didn’t include any notation of the one type of medication that could kill him: steroids that would interfere with his life-saving immune treatment.

We see billing codes used all the time in obesity research, as studies tally the number of times “obesity” is checked off on the billing codes on the hospital records and attribute every health complication imaginable to obesity. These codes, known as ICD-9 and ICD-10 codes, are taken from the International Classification of Diseases, Ninth Revision. This is an enormous, complicated and continually changing system which gives a number to every disease and medical procedure, and currently has about 12,000 codes. The medical literature is filled with documentations of their inaccuracies in reflecting actual patient disease rates. But over recent years, healthcare providers are being increasingly educated on using these codes in order to receive reimbursements ... including coding for obesity. The weight loss and bariatric industry has been especially intense in marketing the usage of the obesity code, in particular.

Patient Dave was also dismayed to learn that, despite his hospital having one of the more advanced electronic medical record systems in the country, there was no process in place for data integrity or to ensure that the data doesn’t get screwed up or, if it does, to trace how it happened and fix it. “Why on earth don’t medical record systems have these protections?” he asked. More than a hundred people have access to a patient’s medical records in a two week period, he exampled, and every one of them could screw it up.

The Boston Globe picked up his blog post. As Dr. Paul Tang, chief medical information officer for the Palo Alto Medical Foundation, told the newspaper, inaccuracies in electronic medical records “could be a huge problem.” For example, he said, an inaccurate diagnosis of gastrointestinal bleeding on a heart attack patient's personal health record could stop an emergency room doctor from administering a life-saving drug.

Insurance data is computerized and is easy and cheap to download, making it especially attractive for populating electronic medical records. But it’s prone to inaccuracies, the newspaper explained, partly because of the "clunky diagnostic coding language used for medical billing, or because doctors sometimes label a test with the disease they hope to rule out." Dr. David Kibbe, a senior technology adviser to the American Academy of Family Physicians, said: “Claims data is notoriously inaccurate and notoriously incomplete with respect to an expression of the problems a person has.” For some patients electronic medical records could be a benefit, others could be put at risk, the paper concluded.

Far too often, patients and the public never hear the part about electronic medical records being experimental and that they’ve yet to be shown to offer benefits that exceed risks.