Victor Hand, a semi-retired railway manager in Maine, grew so alarmed when he learned that his state was building a database to store all residents' medical files that he rushed to the hospital to try to opt out.
Maine was one of the first states to set up a health information exchange -- a computer network connecting disparate medical practices, from rural, one-physician outposts to urban mega-hospitals -- to help doctors share patient files with the click of a mouse.
Fueled by $548 million in federal grants as part of the Obama administration's health-care overhaul, the exchanges represent a radical change in how patient records are handled and used in treatment, Bloomberg.com reports.
In some cases, they include data without patients' consent, and privacy advocates fret that some exchanges may lose or even sell personal information.
A gap in federal law lets states set their own rules about whether to tell patients their medical data are being shared with an exchange and whether to let people opt out.
The result: Many exchanges in the U.S. give patients no choice about such matters, according to the EHealth Initiative, a nonprofit organization that researches health-care technology.
The databases have won support from care providers such as the Cleveland Clinic, Johns Hopkins Hospital and Mayo Clinic.
The exchanges may also be a boon for big insurance companies that provide the underlying technology, a market expected to grow to almost $800 million this year, according to Chilmark Research, which covers health-care technology.
While concerns over privacy have scuttled formal plans for a national exchange, the federal government is pushing for standards that will let exchanges in different states communicate with each other.
The idea is to mimic cell phone networks, letting patients roam between providers and have electronic medical records follow, according to the Office of the National Coordinator for Health Information Technology, which oversees the efforts.
The exchanges have clear benefits, such as letting emergency room doctors look up an unconscious patient's medication history, lab results or record of previous problems.
Joy Pritts, chief privacy officer for the Office of the National Coordinator, said government officials are taking steps to ensure that patients have a say over inclusion and updating laws to impose privacy and security requirements on exchanges.
Another concern is that exchanges with shaky finances could be tempted to sell data to marketers, which is permitted if the information is exchanged in an anonymous form.
A recent report by the New York Civil Liberties Union found "significant flaws" in that state's exchanges, which cover nearly 3 million people.
Automated Summary from: BloombergBusinessweek