Meanwhile, it's worth pondering just how injurious the release of this data can be to patients.
In his investigation, Robertson discovered that the records included diagnoses and procedures, diagnoses mostly, that many patients didn't even know that they had. And even worse, some of these diagnoses can really impact a patient's public reputation.
"Somebody who goes in for a broken arm from a car crash might show an addiction to heroin, or methamphetamines, or cancer, or all these other things that show up in a hospital intake," Robertson says. "There's some really sensitive stuff in there. Many of these states are releasing more data than even some of them realize."
Technology almost always is a two-edged sword. No one wants to deny researchers the data they need. The promise of big data and analytics is to do an end-run around this country's archaic clinical trial process to discover new statistical correlations between genetics, environment and disease. None of it is possible without electronic medical records and the aggregation that big data makes possible.
But we must be careful. The genie is out of the bottle, and adequate safeguards must be in place, or our health privacy will be endangered. At the end of Sweeney and Robertson's talk, one audience member asked, probably rhetorically, if her medical records could return exclusively to paper.
No one really expects that to happen. But this bombshell of a story is a warning that we must deal with all the implications of the electronic systems we are deploying.