Mili Note: This happens on a state scale, just wait until the federal government has control of your medical data. They’ll sell it (or give it to their corporate partners) even faster. Yay Obamacare!
Maybe you, like so many others, couldn’t get away on vacation this summer. Never mind. If you were a patient in a Texas hospital in the past ten years, the intimate details of your hospital stay made the trip for you. This could be your souvenir: “My hospital story went to Colorado, Arizona, California, New Jersey, Ohio, Tennessee, Washington, D.C., Dallas, Texas, and maybe my employer, and all I got was—heck, not even a T-shirt.”
Let’s say your spouse suffered a heart attack three years ago, was successfully treated at a Texas hospital, and today gratefully eats a Mediterranean diet. You might be surprised to learn that the intimate details of that hospital stay—not just the diagnosis, surgeries, and who paid the bill, but your spouse’s date of birth, gender, and address—were sold by the Texas Department of State Health Services (DSHS). The detailed story of that hospital stay now sits in computers across the country.
The data about hospital inpatients that DSHS collects and distributes is invaluable in public-health and medical research, such as a study of children with asthma in the Rio Grande Valley. But just as often it is non-physicians who use, sell, and re-sell hospital-patient data again and again, generating profit and imperiling personal privacy.
The same patient-data files are sold or given to trade groups, lobbyists, businesses, and even anonymous downloaders. All without your consent.
While the patient data is often privacy-protected by a method called “de-identification,” that method has been discredited by data-security experts. And patient data without that protection, data that includes patient date of birth, is available to those applicants whose research projects are approved by a DSHS review committee.
“I don’t want my medical information sold, and I don’t want it shared with businesses I don’t know about,” said Shirley Bottoms of Austin, whose hospital records are among those offered for sale by DSHS.
But as it stands now, patients have no say-so in what happens to information collected about their hospital stays.
DSHS collects detailed hospital-patient data from nearly every hospital in the state, as directed by law. The agency has sold or given away hospital patients’ data since 1999. That’s about 27,725,534 individual patient stays from 1999 through 2008, according to DSHS. These “Public Use Data Files” are available on the website of the DSHS Texas Health Care Information Collection Center for Health Statistics.