A nice writeup in the New York Times about mining EHR data to further medical knowledge.
The upside:
The use of electronic records also may help scientists avoid sidestep [sic] the rising costs of medical research. “In the past, you had to set up incredibly expensive and time-consuming clinical trials to test a hypothesis,” said Nicholas Tatonetti, assistant professor of biomedical informatics at Columbia. “Now we can look at data already collected in electronic medical records and begin to tease out information.”
Recent work by Dr. Altman and Dr. Tatonetti, published in 2011, offers a compelling case study. As a graduate student at Stanford, Dr. Tatonetti devised an algorithm to look for pairs of drugs that, taken together, cause a side effect not associated with either drug alone. One pairing popped up when he used his new software to search the Food and Drug Administration’s database of adverse drug reports: Paxil, a widely used antidepressant, and Pravastatin, a cholesterol-lowering drug.
Neither was known to raise blood sugar, but Dr. Tatonetti’s results suggested they might when taken together.
The downside:
But the challenges posed by this sort of research are significant. The information entered into a medical record may be wrong, and diagnostic codes are notoriously unreliable, according to Dr. Tatonetti, partly because they are also used for billing. And doctors don’t think like researchers.
“If a patient gets well after treatment, a physician may not feel the need to follow up with a lab test because it doesn’t have any clinical usefulness,” Dr. Altman said. “But that’s exactly the kind of data a researcher looks for.”
Perhaps the most pressing issue is patient privacy. Electronic health records must be “de-identified” before they can be used for research. That requires more than simply removing a name. Any information that might identify the patient must be excised. At the same time, researchers have to be able to tell when they’re looking at records from the same patient, which may be stored in several databases.
“One patient may be in as many as 20 different databases,” said Dr. William S. Dalton, founding director of the Personalized Medicine Institute at Moffitt Cancer Center, which is currently tracking more than 90,000 patients at 18 different sites around the country. Moffitt combines information from the electronic medical record with data from X-rays and other imaging studies, tumor tissue cultures and even genetic profiles.
“There’s an immense amount of information and different databases, all using different data dictionaries,” Dr. Dalton said. “And they don’t all agree.”
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[via coworkers]