Audrey Dutton has an informative and thought-provoking article in the Idaho Statesman on health data exchanges and consent. It begins:
Karen Helms didn’t realize until this year that her medical records were being shared with a statewide network of health care providers. The discovery prompted her to question the state’s health data exchange and to file a complaint with the federal government over privacy concerns.
A spokesman for the Idaho Health Data Exchange — several years old and unrelated to the state’s new health insurance exchange — said the system has no risks or downside. There are almost 1,700 health care providers in Idaho sharing 1.97 million medical records through the electronic system. Those providers accessed patient records on the system 343,369 times in September, according to the exchange.
The exchange office receives calls from concerned patients on a weekly basis, a spokesman said. But exchange officials say privacy concerns are unfounded. They say when Idahoans learn how the exchange can prevent medical errors and other problems as well as expedite the burdensome process of getting medical records from one doctor to another, they usually choose not to opt out of the system.
“Privacy and security is our foundation with what we do and how we do it,” said Scott Carrell, executive director for the data exchange.
But should the health data exchange be premised on opt-out or should it require informed consent/opt-in? According to the article, the federal government left it up to the states as to whether to make health data exchanges opt-out or opt-in. Should they have given states that choice? And when will HHS rule on Karen Helms’ complaint? Read more on the Idaho Statesman.